Jennifer Hiles AVM Surgeries in NYC
https://www.youtube.com/watch?v=lklvDPsJ6KU
To personally reach Jennifer quickly, you may CALL or TEXT @ 605-461-6747
FACEBOOK: www.facebook.com/jennifer.m.hiles
YOUTUBE:
www.youtube.com/hippieskippie7mk
JENNIFER'S MAILING ADDRESS:
Jennifer Hiles
PO BOX 417
Huron, SD, 57350
INSTAGRAM: jenniferfunkhiles
SNAPCHAT: jenniferhiles

Jennifer Marie Hiles was born on June 26th 1987 in Huron, South Dakota, to Alfreda King, and Tom Hiles. She was born with what they thought was’ just a birthmark’ on her face. The doctor told her mother and father it would dissapear on its own within a week.
Around 3 months of age, her mother lay her on the couch to change her diaper when suddenly, crying Jennifer began to gush blood from her nose and gums. She was terrified and didnt know why this was happening. From that point on she began an almost constant bleeding from her nose, gums, and even the roof of her mouth each day, The bleeding has never stopped since this time.. it has continued on her entire life.. and can be extremely scary as they are no normal 'bleeds.' They are life threatening.

At 9 months Jennifer began to start needing blood transfusions because the bleeding was so much, her body couldnt make up the blood on its own fast enough to replace the amount of blood she was losing.
Her mother and father were desperate for answers and began taking her to places all over, including Chicago Illinoise and hospitals in Minnesota. Around the age of 2 Jennifer started having surgeries in Minnesota where the doctors would try to cauterize the vessels in her face to stop the bleeding. She had about 8 total surgeries doing this proceedure, but unfortunatly, they weren't the least bit sucessful.
1991- She began to start taking experimental shots at home shots of interferon. Her mother and father gave her these shots each day for 6 months in her legs, with hopes that it could help stop the bleeding in some way. These did not work at all either.. today they are used for chemo patients.
Also around 1991, age 4, Jennifer had another surgery- getting a portacath put in her heart. The reason for this was that they were giving her blood transfusions so much that It would be easier to not have to poke her each time she needed blood. She would go on to have this in her for 2 years, getting it flushed weekly at the hospital.
Photo above: Jennifer after surgery with favorite nurse.
When she was around the age of 8, her ‘birthmark’ started growing. She had a large unknown mass growing from in between her eyes, and her upper lip began to get larger as well. They didnt know what it was.
Photo below: Jennifer around the age of 10, you can see the tumor poking out through the bridge of her nose.

At age 10, they thought they had found a doctorthat could possibly help Jennifer in Sioux Falls, Dr. Desital. He began giving Jennifer multiple laser surgeries, none of which helped her. Durring the laser surgeries, They would numb her face the day before, and she would be awake durring surgery. Although Jennifer had high hopes that this would erase all her problems after the treatment, and thought that when she looked in the mirror her face would be a normal healthy color, she quickly realized that they burned off the top layer of her skin leaving it look like someone took the end of a pencil eraser and dipped it in ink, then dabbed it all over her 'birthmark'. They had a few different treatment attempts, but all were unsucessful.
By age 10 she was taking 6-10 Iron pills a day, and was still extremely anemic. She would go to the doctor at least once a week to get her hemoglobin checked, and if too low she would have to get transfusions. She would often be able to tell if it was low, because of the feeling of tiredness and lack of energy.
At age 11, Jennifer stayed home from school one day because she didn't feel right. Later on througout the day she got up to go to the bathroom-- and the next thiing she remembed was waking up in the hospital, under a big aired up "blanket" that was keeping her body warm, hooked up to IVs giving her blood. Her family was standing in the hallway and she smiled when she saw them, but was confused as to why they looked so sad, and what had happened. Turns out when she was in the bathroom, she hemoraged. Her mom found her on bathroom floor in a pool of blood. She had almost lost all the blood in her body, and you couldnt even see her birthmark, she was completely pale. The ambulance came and decided to airlift her to Sioux Falls, SD by helicopter. She came extremely close to losing her life that day.

In the year 2000, her grandmother, Mavis Flattum, was sitting at home late one night watching television. She was watching a man named Milton Waner perform a surgery on this woman. This woman looked as if she had the same kind of thing as Jennifer had, so she wrote down his name and gave it to her parents. Jennifers then Step-dad, Leonard High, looked up Dr. Waner on his web TV. They found that he was located in Little Rock, Arkansas and worked on vascular malformations. They kept in contact with him, sending him all her medical records, and in 2001 they rented a car and drove to Arkansas to meet him. They were extremely pleased to find a doctor that knew what was wrong with her, She had an ARTERIOVENOUS MALFORMATION, along with benign tumors. After 14 long years they finally had some answers!

The Arteriovenous Malformation is basically a complex jumbled up mess of veins and ateries mixed together. This can cause massive pulsating headaches, strokes, hemorages, vision loss, close her nasal passages or effect her vision, basically damage anything it grows into. This can grow out of control at any time. Stress and hormonal changes make it worse... so puberty, menstural cycles, preganancy, and menopause could be the worse times. The smallest break in one of the vessel walls could be life threatning. Jennifers AVM extends into all tissues of her nose, and her upper gums. Dr. Waner warned Jennifer that if she ever got pregnant, she needed to have a cesarian because natural labor would put her in danger of hemoraging. Also he warned her not to have any dental work done, and be careful with her teeh. If the teeth were pulled or bumped wrong, she could bleed to death.

Starting at age 15, For the few years Jennifer was seeing him he did many surgeries on her, the biggest one includes removing the mass between her eyes, which was a tumor the size of ‘her dads fist.’ She had a few surgeries in total.

Dr. Waners plan was to remove a quarter of a piece of her AVM at a time per sugery, replacing her damaged skin, with skin grafts from her butt. This ended up NOT happening, because Jennifer was only able to have the surgeries because she was on medicaid. When she turned 18, Medicaid stopped leaving her un-able to recieve treatment any longer.

To this day Jennifer still lives with the AVM. Daily problems include: the tumors in her cheek and upper lip, major headaches, sudden vision changes, nose bleeds. She has constant bleeding from her gums and is always swishing with water, for example, sometimes the bleeding out of her gums is so bad, that she can fill a 55oz cup with blood within 2 minutes. There isn’t much she can do but hope and pray it will stop on its own.
Her bone was eroded by her AVM in her teeth, so her teeth are dying and rotting out. This has made her self confidence drop. Her favorite thing to do is SMILE, and she cannot wait for the day she gets her denture!

Her main struggle she is facing is that her gums have been unhealthy since birth, because they are nothing but a mass of vessels. Her teeth are suffering and there is nothing any dentist can do to help, the slightest wrong touch can send her into a massive hemorrhage ending her life, since her main artery would be exposed. Her gums are completely soft and squishy. They are not strong enough to hold in her teeth, and two of them are broken off at the root, even the slightest infection to where the gums/AVM could be deadly. Her number one main problem she is facing lies within her front right tooth. Dentists show that that tooth is hanging on by literally a thread of bone. They don’t even know how it is still attached. It is so loose that she could literally pull it herself. If her tooth falls out, gets pulled out, or bumped wrong she could hemmorage. This is not the only place she can hemmorage though, for her whole AVM is a giant bleeding risk. Each day she waits she puts herself in greater risk of losing her life. She needs to get to Dr. Waner to give him a chance to help her before it falls out. This gives her extreme mental anxiety and stress not knowing what is going to happen and when. She wakes up each morning wondering if ‘today is going to be the day’ that her tooth is going to fall/ get accidently knocked out, or if her kids have a mommy at the end of the day. It's really hard for her to not have anyone in the area, or even surrounding states that can help if anything goes wrong. You can see below, where the gums are bright red, that is where AVM has taken over her gums, bone.. and even on her upper lip.

Jennifer was on SSI her whole life until she turned 16 and moved in with her dad, they said that she needed to move out when she turend 18 and that they would put her back on right away. She tried and tried to reapply but continued to get denied. She tried to work multiple jobs, but between the headachess and constant trips to the bathroom trying to hide her bleeds, it was just too hard. She also worked as a server for a while, until they got a new manager and she ended up cutting her hours to 1-2 hours per week, and keeping her in the back to do dishes. She later found out that this was because she didnt want Jennifer to be viewed by the customers because of her face. She tried getting a job as a CNA and did for a while, but one morning too many trips to the bathroom, and the nurse told her she shouldnt work there with a medical condition like that. She became very discouraged, full of anxiety and lack of confidence. It was so hard for her to be able to work an actual job, and this left her husband to take care of the family on his own., which he does an amazing job of. He has always done everything for his family and Jennifer. Jennifer has been a stay at home mom since 2013.


She has a loving husband, Dustin VanOverschelde, that she has been with for 12 years now, and despite the odds and risks of being pregnant with an AVM, she went through 2 extremely challenging, scary pregnancies and thankfully they have two beautiful daughters together. Marlina Sky, age 7, and Kiah Bliss, age 6. She is a stay at home mom and loves her family more than anything in the entire world. Together they enjoy music, dancing, camping, gardening, bike riding, and anything else that involves spending family time together. It doens't matter much what they do as long as they are together.

April 2015

In May 2015, Jennifer was in the bathoom spitting blood into the sink. Her gums getting worse and worse, she was bleeding heavily. Her husband walked in and was distrubed by what he saw, since normally Jennifer tried not to let people see when that happened. He was extremely concerned and almost angry, telling her she needed to do something NOW because if she didnt, she was going to end up leaving their two children without a mother. Although it hurt Jennifer that he was so stern and upset with her, she knew he only said it because it was the truth and didn't want anything to happen to her. It was just the push she needed, because up until this moment- she just accepted that this AVM would kill her and there was nothing she could do to get the help she needed... He told her to make an appointment and they would somehow , someway make things work to get her to New York City, which is where Dr. Waner currently lives and works at the Vascular Birthmark Center of NY... If anything just to see how bad her AVM was and what was needed to be done to keep her alive, and well.
That night, Jennifer set this page up on her own. It was very hard for her to open up and admit it wasn't 'just a birthmark' as she told everyone.. she just wanted to feel normal and had been holding all this burden to herself her whole life to almost everyone. And although it was hard to come out and tell the world, as you can see they have been wonderful, caring, and accepting to Jennifer and her condtion and to this day fill her and her family with support.. and that really means the world. Thank you all for being a part of this journey- they couldn't do it without you!
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I would like to thank GOD for answering prayers. A few months before I posted this page, I felt selfish to pray for myself until a special person told me that it was okay to ask to for help, and God would love to heal me! So we started praying, and I was saved.. I asked that he helped me find a way to NYC and get the surgeries I so badly needed, and he gave me all of you. Everything works out so perfectly that it couldn't possibly be anything else but God.. I am forever grateful for ansered prayers, and believe that they all get ansered when the time is right! Thank you to all of you! God bless you and yours from me and mine!
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All together so far Jennifer has had a total of about 21+ AVM related surgeries from birth to current with an unknown amount to go.
While they would rather help other people than ask for help for themselves, they can’t do it on their own without any form of insurance or help. Dustin works hard to take care of his family of 4 on his own and it’s nearly impossible for him to take on a task this big on his own. These are one of the top doctors in the world, so it is not going to be cheap. They gave Jennifer an estamate of $83,000 and higher per proceedure. The hospital expects out of pocket pay, and wants cash in had before they will provide any services for her.. and while it seems nearly impossible for Jennifer, Dustin, and their family to come up with money like that, they have to try!
Every little bit helps and would be highly appreciated. Please PRAY for Jennifer and her family to be able to make this happen, she really needs it!. and if it does happen, PRAY some more that surgery goes smoothly as it is a very risky to work on an AVM as complex as hers. Thank you for taking the time to read!

UPDATES::::You guys have helped out SO MUCH!! Its hard to beleve its almost been a year and a half since this page was made. It still blows the family away at how kind, generous, loving and amazing you all have been twards Jennifer and her family!! There were: Raffles for scooters, benefits, Team Jenny T shirts made, Donation Jars made, Bike runs, fundraisers, Donations of all kinds, Prayers, shares on FB, media coverage via News, fundraisers, newspaper and and radio. You guys are simply amazing! It is unfortunate that she needs so much money to be able to stay living in this life.. but I hope you guys realize you are giving her more than money when you donate to her family, and pray for them. You are giving her another chance at life.. a chance to see her children each morning and take them to school, pick them up after school, read them books, give them hugs and kisses, teach them, love them.. hopefully someday see them go to prom, help them study, see them graduate, get married and have children! Jennifers biggest dream in life is to grow old, and someday be a grandmother- being able to grow old with her family! You guys are making that vision seem more and more like a possibility and less of an unreachable fairy tale! There is no way to say thank you for something that means so very much. You give her the give of life! <3
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(photo above) SURGERY #1- JULY 14, 2015 in NYC: Flying from South Dakota to NYC for the first time ever with her husband, she found out that there was something that Doctor Waner could do about her AVM, and it was way more than she ever imagined. She was shocked as he told her what he had in planned for her.. Embolisations, Tissue expanders, the removal of her nose, building her a new one with parts of her rib cage, twisting and turning skin to replace the damaged skin, and eventually getting the bad teeth out. She thought she was just in for one surgery maybe before she came, and was now looking at multiple surgeries. They all come with risks, but he is the best, so she trusted him and finally felt like she had someone who could help her.. Even though she was terrified of what he had in store for her, it was a lot less scary than what her future held if she wasn't able to get help. She then decided that she was putting her life in his hands.
She started surgery imediatly by getting an angiogram which mapped out all the vessels of her AVM.. then 2/3 of her face embolised by Dr. Ortiz, which is basically like a medical crazy glue in the vessels of her AVM. This Glue put in place of the artery blocks the blood flow. This surgery was sucessfully able to slow down 95% of bleeding. This is a precaution to her major surgery coming up within the next year. The AVM is NOT cancer, but can re-form and come back just as aggressive as cancer. Even though they blocked these arteries off, it is only temporary. They will begin to visously destroy a new path though her arteries and make their own new path of bloodflow after the embolisation. There is no way of telling how long the embolisation will be helpful for.
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SURGERY #2- JANUARAY 4TH, 2016: Jennifer got Tissue expanders placed in her head. One in her right forehead and the other in her right cheek. These are like breast implants. She got them filled once a week 2 hours away in Sioux Falls by Dr. Munson. He filled slowly each week them with saline, With each fill the expanders would get a little larger, causing her to stretch and grow new skin for her upcoming surgery, supposed to be on March 23rd.
Shortly after Jennifer realized her big, long dreadlocks were just in the way of her healing.. after surgery they would be full of blood and iodine. Even though its "just hair" her husband and her put 5 years into perfecting them. One day Her husband handed her a pair of scissors and told her to do it before he changed his mind.. he did this so she didn't have to do it alone.
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3rd surgery: Februaray 26th 2016. Jennifer had to go back to NYC because they thought the expanders were not filling correctly. She was getting very painful swelling around her expanders, and the expanders didnt seem to be getting bigger as expected. Dr. Waner removed the expanders and tested them, only to find out they were working perfectly and that the doctor at home wasnt filling them correctly. She went back home and is currently getting them filled each week and they are getting large like they are expected to. Her forehead needs to be filled to 100ml and her cheek to 50ml. She has 9 fillings total, and will be done filling by the end of April.
She started going to plastic surgeon Dr. Breit in Sioux Falls SD, and they filled right up this time! Needless to say I got a lot of stares and attention with these bad boys in my head.. and if you ever meet anyone with expanders, make sure to take a laser light to them! haha
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Moved to NYC to be closer to my doctors for 4 months! Her whole family moved with her to a little appartement.. and they found out just how expensive living in NYC really is! But having her family with her made it so much easier.. The girls enjoyed being here in NYC as well!
These are the guys that are saving my life and giving me a whole nother chance!!
Above^ Dr. Milton waner: AVM specialist
^Above: Dr.Khosh: NYC's best Plastic surgeon!
Days before surgery:

Everyone always asks how my girls adjusted to all my changes, and the answer is: They adjusted just fine! I am always very upfront and honest with them. They just accept the anwer, and ask questions, and then drop it! They are wonderful about praying for me, and educating all the other people in NYC / kids in their school about AVM! I Love them so!
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4th surgery MAY 16th- Dr. Ortiz embolised her entire AVM again, this time including her lip. She will stay in the hospital until next surgery 2 days later. Her dad was able to fly up to be with her and help this week which helped a lot! Her husband and children are also with her.

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5th surgery MAY 18th. This is her largest but far from her last surgery. This day most of her AVM was taken out. Her entire nose was removed, and plastic surgerons rebuilt a new nose from one of her ribs. The AVM/pink areas were removed, and so were the tissue expanders. They used the new skin she has been growing from the expanders, to replace all the pink damaged skin. This surgery went perfect! She still has remaining AVM in her lip that they think will be there for a lifetime, unless it starts to grow or cause her problems bleeding, then it will be removed and rebuilt. She still has avm on both sides of her nostrils and under her right eye that they are hoping to remove in the next few surgeries. She has 2 large holes in her head that are packed with gauze.

One of Jennifers skin flaps did not make it. Day after day of her surgery, she sat and watched helplessly as her face turned from a healthy, happy color, into purple, blue, green, yellow, brown, and finally- black. It was quite overwhelming for her.. the skin she just worked so hard on growing for the last few months had not made it. There was no specific reason, sometimes skin flaps just don't make it. She guesses maybe the skin had been stretched too tight.. but no matter what the reason was, it couldn't bring it back. Watching your own face die as it is a part of you is terrifying to say the least. She didn't know what to expect each new day, how far the decaying would spread, or what would have to be done to fix it. It was very hard and tight on her face.. and as you can imagine, she looked into the mirror many times a day- looking back at her reflection. When she went outside while living in NYC, she was met with many strange looks, and unwanted comments. To have your face, be completely unrecognizable, was a bit depressing. Your face to most is known as a big part of your identity, and the first thing people see when they look at you. She had her faith in God tested, not knowing if he was still there and at times crying out to him- wondering why he let this happen, wondering why her.. luckily she had a world of support in her family and on the internet- they helped her greatly though the tough time, and thankfully she realized that God was with her the entire time. Sometimes bad things happen or just don't go as planned, but that does not mean God wasn't with you the whole time!
(photo above) Although AVM's do grow thought your life, her's was not actively growing before any of these NYC surgeries started. It was big, and the blood vessels in bad spots and bleeding horribly, but wasn't growing. The size stayed the same, growing with the size of her face since birth, besides the tumors when she was around 10 years old.. but one of the things with AVM surgeries, are there can always be risks and consequences.. One of those, is that you can disturb the AVM, and as some say "awaken the sleeping giant" and this is what has happened to Jennifers AVM. Her upper lip got HUGE. The AVM in it was now growing.. AVMS can also grow crazily out of nowhere.. she looked a lot like a simpson character. It was very big, hard, and painful. Eating and talking were a challenge. You couldn't even see her bottom lip when she talked. She kept hoping and praying it was just swollen from surgery, but it kept getting larger instead of smaller.
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(photo above) 6th surgery on June 10th: This surgery should of been on June 3rd, but was changed to the 10th. It seams as if her skin is decaying. They wanted to thin her nose out in this second out of third stage, but things are not going well, so they skipped to the 3rd stage and closed up the hole in her forehead and cleaned her face up a bit. They scraped off all the black dead skin with hopes that it would heal itself. (picture below) Although she really wanted her nose thinned out, it just wasn't safe at this time, and you can't help when complications arrise, you just have to take care of them.
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June 13th (above) This is what my face looked like a few days after surgery when all the black dead skin was removed.
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(below) Jennifers skin that died grew back as very thick, hard skin tissue. There was lots of pain, tightness, and her nerves would always pinch and jolt her. Her lip was very large, and felt very full.. as you can see inside her nostrils got very large.. the AVM started to grow back, and unfortunatly she developed staph infection. They had to try a couple differnt things before she finallly got rid of it.
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(photo above)The photo on the right is from the day before Jennifer left her home in South Dakota to come to NYC for surgeries on 5/7/16, and the photo on the left is from June 27th. Starting to get a taste of all the good things coming! It gets a little better each time!
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July 28th, day before surgery. (above) I learned a lot of patience this summer.. laying in bed just waiting to heal. It seems to be paying off.. It helped so greatly with having my family with me, and everyone who flew out to be with me.. not to mention all the cards and mail to pass time! So many wonderful people out there! Thank you!
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Surgery #7--July 29, 2016: (above photos)- Removed most of her upper lip, making it way smaller than it has ever been, also removed the entire piece of tissues all the way up to her nose. Basically they made two cuts from her lip to her nose and removed that whole square inch! I can honestly say this was one of the most painful things besides the removal of my nose.. Removed what scarring they could from the dead skin on cheek and did laser treatments on scars. Dr. Waner is a godsend!!
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Jennifer on August 8th (above) Healing nicely! A little time in Central park with ther family in between surgery number 7&8!
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SURGERY #8 (below)
Surgery#8--August 26th, 2016: Dr. Waner really wanted to work on the scarring around her lip. He went through and cut out what he could, pulling the healthier tissues together. He also cut out the scar that had been bothering her chest, and another round of laser treatments! (photos above)
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Surgery#9-- August 31, 2016: with Dr. Ortiz for an angiogram, and then to embolise AVM. This is to embolise the lip, nostrils, and nose. This surgery went well. She was told there is a piece of AVM growing that is connected to her left eye that they can't get because of risks. She stayed in the hospital overnight and was taken to the heart monitoring room for her heart was having many palpatations, and low blood pressure. The next day she was released. They stayed one more night in NYC at the Yotel and then traveled back to South Dakota after 4 long months and 6 surgeries!!
Jennifer and Dr. Waner, as well as his amazing staff! Taken on August 30, 2016: It was a bit hard leaving them! It was so nice to be living close to the people who could save you! But I will be back soon! So thankful for everyone who had any part of helping me get better! I know I have a long ways to go but I am happy I am on the right path!
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and side photo 2/14/17 (below)
(photo above) February 10th-2/14/17-- 5 months later!! 5 months of no surgeries, being at home and HEALNG!! Few nosebleeds, only a couple gum bleeds, and AVM still noticeable in nostrils.. Jennifer Hiles and her husband returned to NYC for more surgeries. They left their daughters at home back in South Dakota under their parents care for up to 3 weeks so they could continue doing their best in school. Although it is hard for them to be apart- Health is most important so they do what they have to do!
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(photo above) Surgery#10-Febuary 17, 2017.
Jennifer went through a 2.5 hour surgery to remove a bit of AVM that was coming out of nostril.. removed some of the irritating itchy tight thick scar tissue above her lip, to her chin, and on the side of her face. She also had co2 laser surgery to break up some of the large keloid scars and steroid injections as well. Surgery went very well! She will have to stay in NYC until Feb. 27th to be close to doctors- (a total of 3 weeks! The longest they have ever been away from their children. It was hard but thankfully they were in good hands with their grandparents! )and if all goes well she can go back to SD.
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SURGERY #11- April 13th, 2017 (3photos above) Dustin decided to stay home with the girls for this one, so I brought my sister. Although it was hard to be away from all of them, and I was so used to having Dustin by my side, it was nice to spend time with my sister.. and happy the girls have their daddy at home.
This surgery they did something that was very scary to me. My whole life I put these two things in a group: My tooth coming out and death. They have been engraved in my head since the age of 12.. Anways.. my tooth that was barely hanging on for 7 years was barely hanging on now.. I kept feeling as if my body was trying to push it out itself. I had lots of pain above it and was terrified that it would fall out at home possibly have it bleed like crazy, and have nobody know what to do. So I mentioned it to my doctors and seen some new doctors here.. and I was informed the day before my surgery, they would remove the teeth! I was so scared. I couldn't see life without my teeth.
In surgery they removed my horizontal scars from my incisions, they fixed the corner of my lip, more laser surgery for scars, they cut out the remaining pink area of AVM to the left of my nose.. and they pulled out my teeth! I felt so much emotion when I woke from surgery.. simply because my teeth were gone and I was still here. I can't believe it! I would be happy to show you my gums but I can't even see them myself I am so swollen! Praise God though! I don't know how long it will take me to get new teeth to take their place but whoohoo! Who cares right now, can we just rejoice in the fact that the tooth that could of killed me is out! :)
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(photo above) 6/17/17: Two days before surgery #12 in Central park. Missing another front tooth- but thankful it came out safely last surgery and stil smiling! Grateful!! There is a lot to smile about!
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12th surgery: Monday, June 19th, Jennifer, her family, and cousin Jason Hiles flew from South Dakota to NYC on June 14th. Surgery day came not long after that, where they removed half of the AVM growing in my nostril- on the left side. This included my skin- so they removed skin from the left side of my nose to replace it inside my nostril.. this left my left nostril stretched out to reconnect with the skin.. They reshaped my upper lip.. Did more laser surgery on scars.. injected my painful neck scar with something to help the scar growth.. and took my other front tooth. Even though it looked not as bad as other surgeries, it didn't feel that way. It has been a pretty painful, swelling recovery.. but I know it will pass! My family and I will be here in NYC until June 27th. I will be spending yet another birthday here as well! June 26th I will be 30! Crazy how time flies.. I am not sure of my next appointment date as of right now but will see the doctor again soon to figure it out! Right now I am just hoping that my AVM in my nose and lip doesn't start growing from being messed with- as this can happen.. I still have some roots without teeth left in my upper jaw to get out. I am not sure when this will happen but hope it comes quickly, because right now I am missing 4 front teeth and would love to get a start on a new beautiful teeth smile, and be able to talk right again.
(3 photos above )#12TH SURGERY: JUNE 19TH 2017. Jennifer, her family, and cousin Jason Hiles flew from South Dakota to NYC on June 14th. Surgery day came not long after that, where they removed half of the AVM growing in my nostril- on the left side. This included my skin- so they removed skin from the left side of my nose to replace it inside my nostril.. this left my left nostril stretched out to reconnect with the skin.. They reshaped my upper lip.. Did more laser surgery on scars.. injected my painful neck scar with something to help the scar growth.. and took my other front tooth. Even though it looked not as bad as other surgeries, it didn't feel that way. It has been a pretty painful, swelling recovery.. but I know it will pass! My family and I will be here in NYC until June 27th. I will be spending yet another birthday here as well! June 26th I will be 30! Crazy how time flies.. I am not sure of my next appointment date as of right now but will see the doctor again soon to figure it out! Right now I am just hoping that my AVM in my nose and lip doesn't start growing from being messed with- as this can happen.. I still have some roots without teeth left in my upper jaw to get out. I am not sure when this will happen but hope it comes quickly, because right now I am missing 4 front teeth and would love to get a start on a new beautiful teeth smile, and be able to talk right again.
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(photo above) taken 8/22/17 in their airB&B apartment in Brooklyn, NYC days before her 13th surgery.
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SURGERY 13, 2017. AUGUST 22nd, 2017: Jennifer and her family left Huron, SD on Aug.20th- after the Micheala Brewster Poker run which was kindly and gratefully dedicated to help Jennifer Hiles, to make their way back to NYC. On the 22nd, she met with a dentist who agreed to take out the remaining teeth that needed to come out, and he kindly did it for halfprice which was $3,500. They did not have a pre-op meeting with her doctor before surgery this time. She went in for surgery on August 28th at exactly 11:50 am and it got over after 5pm. They pulled 8 teeth, removed cone from right nostril from last surgery where they had to remove avm and replace it with skin from the ouside of the nostril. They opened up the nostril and flattened the skin out. They pulled the part that seperates both her nostrils back up and pinned it so that it can not fall back down again.. but from doing that it created a hole in her "moustache area" so they ended up having to take skin from by her ear/cheek- and replace it using a skin graft. They also got to form a very nice cupids bow at the center of her upper lip. They cut down the scar where the transplant donor skin place was next to the right of the ear to help reduce the scaring. Besides that they did laser surgery to all scars and steroid injections. In the recovery room they could not keep Jennifer out of pain and she was there until they closed- finally able to go home to their temporary Brooklyn appartemnt. This was by far the hardest surgery Jennifer has ever had to recover from.. she couldnt get out of bed for 5 days and told everyone that she had given up because she couldn't stand the pain any more.. luckily as the next week came around she felt much better! She seen her doctor on September 4th and they took the bandage off her skin graft- She was nervous because she has had skin flaps die before and had to sit and watch helplessly as the skin on her face turned black.. but this time there was a fresh, healthy patch of skin! Thank God it is healthy! It did not look great right away but it was exactly what it is supposed to look like and in due time it will look better. They planned on leaving NYC on Septmeber 3rd so the girls could get home by Sept.4th- but because of the skin graft they had to stay until the 8th- so her girls will be headed to school for their first day on September 11th. When they get home- she will have to start going to Sioux Falls SD to a plastic surgeon and have steriod injections every 2 weeks. Since she has started having moments every now and then where she can't see and looses vision- she will need to find an eye doctor. They don't think it has anthing to do with the AVM but need to find out everything for sure.!
Photo above^ 2 days after surgery 13 on 8/30/17^
^Photo above-September 5, 2017. Skin graft 8 days after surgery when they took off the bandages so I could see it for the first time. I don't know what I was expecting, but to be honest I was a bit blown away by the look of it.. I was told to give it time, and that it should heal up nicely in due time. I kept it covered with the thought of, "it looks weird," but after a couple weeks, I realized it could be a lot worse.. it could have died like one of my other skin flaps.. and if it did i would want nothing more than for it to be healthy, so after a couple weeks of being ashamed of the new look, I began realizing how lucky I was and finally uncovered it to wear my skin proud.
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^ This is Randy Houska! He is a dentist from Vermillion. We started talking on Instagram DM's for a few months now. I am thankful for him because he has been there to answer all my dental questions and concerns. I go back to Hollywood again in October and need teeth before then- Randy is a new follower of my story and mentioned that it looked like I "could use a break" and offered to help in many different ways. I can not tell you how relieving it is to have a dentist come to me- and offer to help. My whole life I feel like I have ran after dentists that have ran away- being too afraid to help me.. and the ones that weren't afraid to help me simply wouldn't listen to the severity of my case and wanted to pull all my teeth- which likely would of killed me. I am so happy that I have finally had enough embolisations that I was able to get all the teeth pulled that needed to go, and now I am ready for the next chaper of my journey and am actually ready to get a new smile, with new teeth that aren't unhealthy.. ones that I don't have to worry about! I am so ready to feel confident in doing what I love to do most in life- SMILE! (At the moment I only have 6 teeth on top- 2 on top right and 4 on top left.. and only 10 teeth on bottom center) He will be helping me get a 'flipper' denture right away when I get home.. so that I can look and talk my best in Hollywood, and in everyday life while I am waiting another 3-6 months for my gums to heal, and then get my permanent partial denture for the top!! And maybe when it is time he might be able to find someone to get me the implants on the bottom sides, but we will cross that bridge when we get to it! For now I am just very thankful to have such a kind, informative, want to be a part of my journey amazing kinda dentist in my very near future! I hear he is pretty good at what he does- so look out world! Jennifer will be flashing her big teethy healthy smile very soon! Special thanks to you Randy for this important part of my journey!
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Although it seams like she has had so much stuff done already, there is still so much to go. The doctor thinks she will need at least 5 more embolisms, her bone in nose broken and chizzled to thin it out, more treatments for scars, more AVM removed, facelifts and mini lipo to correct her face from all the surgeries. She will continue to need to come back for more surgeries.
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To personally reach Jennifer quickly, you may CALL or TEXT @ 605-461-6747
FACEBOOK: www.facebook.com/jennifer.m.hiles
YOUTUBE:
www.youtube.com/hippieskippie7mk
JENNIFER'S MAILING ADDRESS:
Jennifer Hiles
PO BOX 417
Huron, SD, 57350
INSTAGRAM: jenniferfunkhiles
SNAPCHAT: jenniferhiles
Jennifer Marie Hiles was born on June 26th 1987 in Huron, South Dakota, to Alfreda King, and Tom Hiles. She was born with what they thought was’ just a birthmark’ on her face. The doctor told her mother and father it would dissapear on its own within a week.
Around 3 months of age, her mother lay her on the couch to change her diaper when suddenly, crying Jennifer began to gush blood from her nose and gums. She was terrified and didnt know why this was happening. From that point on she began an almost constant bleeding from her nose, gums, and even the roof of her mouth each day, The bleeding has never stopped since this time.. it has continued on her entire life.. and can be extremely scary as they are no normal 'bleeds.' They are life threatening.
At 9 months Jennifer began to start needing blood transfusions because the bleeding was so much, her body couldnt make up the blood on its own fast enough to replace the amount of blood she was losing.
Her mother and father were desperate for answers and began taking her to places all over, including Chicago Illinoise and hospitals in Minnesota. Around the age of 2 Jennifer started having surgeries in Minnesota where the doctors would try to cauterize the vessels in her face to stop the bleeding. She had about 8 total surgeries doing this proceedure, but unfortunatly, they weren't the least bit sucessful.
1991- She began to start taking experimental shots at home shots of interferon. Her mother and father gave her these shots each day for 6 months in her legs, with hopes that it could help stop the bleeding in some way. These did not work at all either.. today they are used for chemo patients.
Also around 1991, age 4, Jennifer had another surgery- getting a portacath put in her heart. The reason for this was that they were giving her blood transfusions so much that It would be easier to not have to poke her each time she needed blood. She would go on to have this in her for 2 years, getting it flushed weekly at the hospital.
Photo above: Jennifer after surgery with favorite nurse.When she was around the age of 8, her ‘birthmark’ started growing. She had a large unknown mass growing from in between her eyes, and her upper lip began to get larger as well. They didnt know what it was.
Photo below: Jennifer around the age of 10, you can see the tumor poking out through the bridge of her nose.
At age 10, they thought they had found a doctorthat could possibly help Jennifer in Sioux Falls, Dr. Desital. He began giving Jennifer multiple laser surgeries, none of which helped her. Durring the laser surgeries, They would numb her face the day before, and she would be awake durring surgery. Although Jennifer had high hopes that this would erase all her problems after the treatment, and thought that when she looked in the mirror her face would be a normal healthy color, she quickly realized that they burned off the top layer of her skin leaving it look like someone took the end of a pencil eraser and dipped it in ink, then dabbed it all over her 'birthmark'. They had a few different treatment attempts, but all were unsucessful.
By age 10 she was taking 6-10 Iron pills a day, and was still extremely anemic. She would go to the doctor at least once a week to get her hemoglobin checked, and if too low she would have to get transfusions. She would often be able to tell if it was low, because of the feeling of tiredness and lack of energy.
At age 11, Jennifer stayed home from school one day because she didn't feel right. Later on througout the day she got up to go to the bathroom-- and the next thiing she remembed was waking up in the hospital, under a big aired up "blanket" that was keeping her body warm, hooked up to IVs giving her blood. Her family was standing in the hallway and she smiled when she saw them, but was confused as to why they looked so sad, and what had happened. Turns out when she was in the bathroom, she hemoraged. Her mom found her on bathroom floor in a pool of blood. She had almost lost all the blood in her body, and you couldnt even see her birthmark, she was completely pale. The ambulance came and decided to airlift her to Sioux Falls, SD by helicopter. She came extremely close to losing her life that day.
In the year 2000, her grandmother, Mavis Flattum, was sitting at home late one night watching television. She was watching a man named Milton Waner perform a surgery on this woman. This woman looked as if she had the same kind of thing as Jennifer had, so she wrote down his name and gave it to her parents. Jennifers then Step-dad, Leonard High, looked up Dr. Waner on his web TV. They found that he was located in Little Rock, Arkansas and worked on vascular malformations. They kept in contact with him, sending him all her medical records, and in 2001 they rented a car and drove to Arkansas to meet him. They were extremely pleased to find a doctor that knew what was wrong with her, She had an ARTERIOVENOUS MALFORMATION, along with benign tumors. After 14 long years they finally had some answers!
The Arteriovenous Malformation is basically a complex jumbled up mess of veins and ateries mixed together. This can cause massive pulsating headaches, strokes, hemorages, vision loss, close her nasal passages or effect her vision, basically damage anything it grows into. This can grow out of control at any time. Stress and hormonal changes make it worse... so puberty, menstural cycles, preganancy, and menopause could be the worse times. The smallest break in one of the vessel walls could be life threatning. Jennifers AVM extends into all tissues of her nose, and her upper gums. Dr. Waner warned Jennifer that if she ever got pregnant, she needed to have a cesarian because natural labor would put her in danger of hemoraging. Also he warned her not to have any dental work done, and be careful with her teeh. If the teeth were pulled or bumped wrong, she could bleed to death.
Starting at age 15, For the few years Jennifer was seeing him he did many surgeries on her, the biggest one includes removing the mass between her eyes, which was a tumor the size of ‘her dads fist.’ She had a few surgeries in total.
Dr. Waners plan was to remove a quarter of a piece of her AVM at a time per sugery, replacing her damaged skin, with skin grafts from her butt. This ended up NOT happening, because Jennifer was only able to have the surgeries because she was on medicaid. When she turned 18, Medicaid stopped leaving her un-able to recieve treatment any longer.
To this day Jennifer still lives with the AVM. Daily problems include: the tumors in her cheek and upper lip, major headaches, sudden vision changes, nose bleeds. She has constant bleeding from her gums and is always swishing with water, for example, sometimes the bleeding out of her gums is so bad, that she can fill a 55oz cup with blood within 2 minutes. There isn’t much she can do but hope and pray it will stop on its own.
Her bone was eroded by her AVM in her teeth, so her teeth are dying and rotting out. This has made her self confidence drop. Her favorite thing to do is SMILE, and she cannot wait for the day she gets her denture!
Her main struggle she is facing is that her gums have been unhealthy since birth, because they are nothing but a mass of vessels. Her teeth are suffering and there is nothing any dentist can do to help, the slightest wrong touch can send her into a massive hemorrhage ending her life, since her main artery would be exposed. Her gums are completely soft and squishy. They are not strong enough to hold in her teeth, and two of them are broken off at the root, even the slightest infection to where the gums/AVM could be deadly. Her number one main problem she is facing lies within her front right tooth. Dentists show that that tooth is hanging on by literally a thread of bone. They don’t even know how it is still attached. It is so loose that she could literally pull it herself. If her tooth falls out, gets pulled out, or bumped wrong she could hemmorage. This is not the only place she can hemmorage though, for her whole AVM is a giant bleeding risk. Each day she waits she puts herself in greater risk of losing her life. She needs to get to Dr. Waner to give him a chance to help her before it falls out. This gives her extreme mental anxiety and stress not knowing what is going to happen and when. She wakes up each morning wondering if ‘today is going to be the day’ that her tooth is going to fall/ get accidently knocked out, or if her kids have a mommy at the end of the day. It's really hard for her to not have anyone in the area, or even surrounding states that can help if anything goes wrong. You can see below, where the gums are bright red, that is where AVM has taken over her gums, bone.. and even on her upper lip.
Jennifer was on SSI her whole life until she turned 16 and moved in with her dad, they said that she needed to move out when she turend 18 and that they would put her back on right away. She tried and tried to reapply but continued to get denied. She tried to work multiple jobs, but between the headachess and constant trips to the bathroom trying to hide her bleeds, it was just too hard. She also worked as a server for a while, until they got a new manager and she ended up cutting her hours to 1-2 hours per week, and keeping her in the back to do dishes. She later found out that this was because she didnt want Jennifer to be viewed by the customers because of her face. She tried getting a job as a CNA and did for a while, but one morning too many trips to the bathroom, and the nurse told her she shouldnt work there with a medical condition like that. She became very discouraged, full of anxiety and lack of confidence. It was so hard for her to be able to work an actual job, and this left her husband to take care of the family on his own., which he does an amazing job of. He has always done everything for his family and Jennifer. Jennifer has been a stay at home mom since 2013.
 She has a loving husband, Dustin VanOverschelde, that she has been with for 12 years now, and despite the odds and risks of being pregnant with an AVM, she went through 2 extremely challenging, scary pregnancies and thankfully they have two beautiful daughters together. Marlina Sky, age 7, and Kiah Bliss, age 6. She is a stay at home mom and loves her family more than anything in the entire world. Together they enjoy music, dancing, camping, gardening, bike riding, and anything else that involves spending family time together. It doens't matter much what they do as long as they are together.
April 2015
In May 2015, Jennifer was in the bathoom spitting blood into the sink. Her gums getting worse and worse, she was bleeding heavily. Her husband walked in and was distrubed by what he saw, since normally Jennifer tried not to let people see when that happened. He was extremely concerned and almost angry, telling her she needed to do something NOW because if she didnt, she was going to end up leaving their two children without a mother. Although it hurt Jennifer that he was so stern and upset with her, she knew he only said it because it was the truth and didn't want anything to happen to her. It was just the push she needed, because up until this moment- she just accepted that this AVM would kill her and there was nothing she could do to get the help she needed... He told her to make an appointment and they would somehow , someway make things work to get her to New York City, which is where Dr. Waner currently lives and works at the Vascular Birthmark Center of NY... If anything just to see how bad her AVM was and what was needed to be done to keep her alive, and well.
That night, Jennifer set this page up on her own. It was very hard for her to open up and admit it wasn't 'just a birthmark' as she told everyone.. she just wanted to feel normal and had been holding all this burden to herself her whole life to almost everyone. And although it was hard to come out and tell the world, as you can see they have been wonderful, caring, and accepting to Jennifer and her condtion and to this day fill her and her family with support.. and that really means the world. Thank you all for being a part of this journey- they couldn't do it without you!*********************************************************
I would like to thank GOD for answering prayers. A few months before I posted this page, I felt selfish to pray for myself until a special person told me that it was okay to ask to for help, and God would love to heal me! So we started praying, and I was saved.. I asked that he helped me find a way to NYC and get the surgeries I so badly needed, and he gave me all of you. Everything works out so perfectly that it couldn't possibly be anything else but God.. I am forever grateful for ansered prayers, and believe that they all get ansered when the time is right! Thank you to all of you! God bless you and yours from me and mine!
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All together so far Jennifer has had a total of about 21+ AVM related surgeries from birth to current with an unknown amount to go.
While they would rather help other people than ask for help for themselves, they can’t do it on their own without any form of insurance or help. Dustin works hard to take care of his family of 4 on his own and it’s nearly impossible for him to take on a task this big on his own. These are one of the top doctors in the world, so it is not going to be cheap. They gave Jennifer an estamate of $83,000 and higher per proceedure. The hospital expects out of pocket pay, and wants cash in had before they will provide any services for her.. and while it seems nearly impossible for Jennifer, Dustin, and their family to come up with money like that, they have to try!
Every little bit helps and would be highly appreciated. Please PRAY for Jennifer and her family to be able to make this happen, she really needs it!. and if it does happen, PRAY some more that surgery goes smoothly as it is a very risky to work on an AVM as complex as hers. Thank you for taking the time to read!
UPDATES::::You guys have helped out SO MUCH!! Its hard to beleve its almost been a year and a half since this page was made. It still blows the family away at how kind, generous, loving and amazing you all have been twards Jennifer and her family!! There were: Raffles for scooters, benefits, Team Jenny T shirts made, Donation Jars made, Bike runs, fundraisers, Donations of all kinds, Prayers, shares on FB, media coverage via News, fundraisers, newspaper and and radio. You guys are simply amazing! It is unfortunate that she needs so much money to be able to stay living in this life.. but I hope you guys realize you are giving her more than money when you donate to her family, and pray for them. You are giving her another chance at life.. a chance to see her children each morning and take them to school, pick them up after school, read them books, give them hugs and kisses, teach them, love them.. hopefully someday see them go to prom, help them study, see them graduate, get married and have children! Jennifers biggest dream in life is to grow old, and someday be a grandmother- being able to grow old with her family! You guys are making that vision seem more and more like a possibility and less of an unreachable fairy tale! There is no way to say thank you for something that means so very much. You give her the give of life! <3
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(photo above) SURGERY #1- JULY 14, 2015 in NYC: Flying from South Dakota to NYC for the first time ever with her husband, she found out that there was something that Doctor Waner could do about her AVM, and it was way more than she ever imagined. She was shocked as he told her what he had in planned for her.. Embolisations, Tissue expanders, the removal of her nose, building her a new one with parts of her rib cage, twisting and turning skin to replace the damaged skin, and eventually getting the bad teeth out. She thought she was just in for one surgery maybe before she came, and was now looking at multiple surgeries. They all come with risks, but he is the best, so she trusted him and finally felt like she had someone who could help her.. Even though she was terrified of what he had in store for her, it was a lot less scary than what her future held if she wasn't able to get help. She then decided that she was putting her life in his hands. She started surgery imediatly by getting an angiogram which mapped out all the vessels of her AVM.. then 2/3 of her face embolised by Dr. Ortiz, which is basically like a medical crazy glue in the vessels of her AVM. This Glue put in place of the artery blocks the blood flow. This surgery was sucessfully able to slow down 95% of bleeding. This is a precaution to her major surgery coming up within the next year. The AVM is NOT cancer, but can re-form and come back just as aggressive as cancer. Even though they blocked these arteries off, it is only temporary. They will begin to visously destroy a new path though her arteries and make their own new path of bloodflow after the embolisation. There is no way of telling how long the embolisation will be helpful for.
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SURGERY #2- JANUARAY 4TH, 2016: Jennifer got Tissue expanders placed in her head. One in her right forehead and the other in her right cheek. These are like breast implants. She got them filled once a week 2 hours away in Sioux Falls by Dr. Munson. He filled slowly each week them with saline, With each fill the expanders would get a little larger, causing her to stretch and grow new skin for her upcoming surgery, supposed to be on March 23rd.
Shortly after Jennifer realized her big, long dreadlocks were just in the way of her healing.. after surgery they would be full of blood and iodine. Even though its "just hair" her husband and her put 5 years into perfecting them. One day Her husband handed her a pair of scissors and told her to do it before he changed his mind.. he did this so she didn't have to do it alone. ----------------------------------------------------------------------
3rd surgery: Februaray 26th 2016. Jennifer had to go back to NYC because they thought the expanders were not filling correctly. She was getting very painful swelling around her expanders, and the expanders didnt seem to be getting bigger as expected. Dr. Waner removed the expanders and tested them, only to find out they were working perfectly and that the doctor at home wasnt filling them correctly. She went back home and is currently getting them filled each week and they are getting large like they are expected to. Her forehead needs to be filled to 100ml and her cheek to 50ml. She has 9 fillings total, and will be done filling by the end of April.
She started going to plastic surgeon Dr. Breit in Sioux Falls SD, and they filled right up this time! Needless to say I got a lot of stares and attention with these bad boys in my head.. and if you ever meet anyone with expanders, make sure to take a laser light to them! haha-----------------------------------------------------------------------
Moved to NYC to be closer to my doctors for 4 months! Her whole family moved with her to a little appartement.. and they found out just how expensive living in NYC really is! But having her family with her made it so much easier.. The girls enjoyed being here in NYC as well!
These are the guys that are saving my life and giving me a whole nother chance!!
Above^ Dr. Milton waner: AVM specialist^Above: Dr.Khosh: NYC's best Plastic surgeon! Days before surgery:
Everyone always asks how my girls adjusted to all my changes, and the answer is: They adjusted just fine! I am always very upfront and honest with them. They just accept the anwer, and ask questions, and then drop it! They are wonderful about praying for me, and educating all the other people in NYC / kids in their school about AVM! I Love them so!--------------------------------------------------------------------
4th surgery MAY 16th- Dr. Ortiz embolised her entire AVM again, this time including her lip. She will stay in the hospital until next surgery 2 days later. Her dad was able to fly up to be with her and help this week which helped a lot! Her husband and children are also with her.
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5th surgery MAY 18th. This is her largest but far from her last surgery. This day most of her AVM was taken out. Her entire nose was removed, and plastic surgerons rebuilt a new nose from one of her ribs. The AVM/pink areas were removed, and so were the tissue expanders. They used the new skin she has been growing from the expanders, to replace all the pink damaged skin. This surgery went perfect! She still has remaining AVM in her lip that they think will be there for a lifetime, unless it starts to grow or cause her problems bleeding, then it will be removed and rebuilt. She still has avm on both sides of her nostrils and under her right eye that they are hoping to remove in the next few surgeries. She has 2 large holes in her head that are packed with gauze.
One of Jennifers skin flaps did not make it. Day after day of her surgery, she sat and watched helplessly as her face turned from a healthy, happy color, into purple, blue, green, yellow, brown, and finally- black. It was quite overwhelming for her.. the skin she just worked so hard on growing for the last few months had not made it. There was no specific reason, sometimes skin flaps just don't make it. She guesses maybe the skin had been stretched too tight.. but no matter what the reason was, it couldn't bring it back. Watching your own face die as it is a part of you is terrifying to say the least. She didn't know what to expect each new day, how far the decaying would spread, or what would have to be done to fix it. It was very hard and tight on her face.. and as you can imagine, she looked into the mirror many times a day- looking back at her reflection. When she went outside while living in NYC, she was met with many strange looks, and unwanted comments. To have your face, be completely unrecognizable, was a bit depressing. Your face to most is known as a big part of your identity, and the first thing people see when they look at you. She had her faith in God tested, not knowing if he was still there and at times crying out to him- wondering why he let this happen, wondering why her.. luckily she had a world of support in her family and on the internet- they helped her greatly though the tough time, and thankfully she realized that God was with her the entire time. Sometimes bad things happen or just don't go as planned, but that does not mean God wasn't with you the whole time! (photo above) Although AVM's do grow thought your life, her's was not actively growing before any of these NYC surgeries started. It was big, and the blood vessels in bad spots and bleeding horribly, but wasn't growing. The size stayed the same, growing with the size of her face since birth, besides the tumors when she was around 10 years old.. but one of the things with AVM surgeries, are there can always be risks and consequences.. One of those, is that you can disturb the AVM, and as some say "awaken the sleeping giant" and this is what has happened to Jennifers AVM. Her upper lip got HUGE. The AVM in it was now growing.. AVMS can also grow crazily out of nowhere.. she looked a lot like a simpson character. It was very big, hard, and painful. Eating and talking were a challenge. You couldn't even see her bottom lip when she talked. She kept hoping and praying it was just swollen from surgery, but it kept getting larger instead of smaller. ----------------------------------------------------------------------
(photo above) 6th surgery on June 10th: This surgery should of been on June 3rd, but was changed to the 10th. It seams as if her skin is decaying. They wanted to thin her nose out in this second out of third stage, but things are not going well, so they skipped to the 3rd stage and closed up the hole in her forehead and cleaned her face up a bit. They scraped off all the black dead skin with hopes that it would heal itself. (picture below) Although she really wanted her nose thinned out, it just wasn't safe at this time, and you can't help when complications arrise, you just have to take care of them. ------------------------------------------------------------------
June 13th (above) This is what my face looked like a few days after surgery when all the black dead skin was removed. ----------------------------------------------------------------------
(below) Jennifers skin that died grew back as very thick, hard skin tissue. There was lots of pain, tightness, and her nerves would always pinch and jolt her. Her lip was very large, and felt very full.. as you can see inside her nostrils got very large.. the AVM started to grow back, and unfortunatly she developed staph infection. They had to try a couple differnt things before she finallly got rid of it. --------------------------------------------------------------------
(photo above)The photo on the right is from the day before Jennifer left her home in South Dakota to come to NYC for surgeries on 5/7/16, and the photo on the left is from June 27th. Starting to get a taste of all the good things coming! It gets a little better each time! -----------------------------------------------------------------------
July 28th, day before surgery. (above) I learned a lot of patience this summer.. laying in bed just waiting to heal. It seems to be paying off.. It helped so greatly with having my family with me, and everyone who flew out to be with me.. not to mention all the cards and mail to pass time! So many wonderful people out there! Thank you!-------------------------------------------------------------------
Surgery #7--July 29, 2016: (above photos)- Removed most of her upper lip, making it way smaller than it has ever been, also removed the entire piece of tissues all the way up to her nose. Basically they made two cuts from her lip to her nose and removed that whole square inch! I can honestly say this was one of the most painful things besides the removal of my nose.. Removed what scarring they could from the dead skin on cheek and did laser treatments on scars. Dr. Waner is a godsend!! -----------------------------------------------------------------------
Jennifer on August 8th (above) Healing nicely! A little time in Central park with ther family in between surgery number 7&8!----------------------------------------------------------------------
SURGERY #8 (below)
Surgery#8--August 26th, 2016: Dr. Waner really wanted to work on the scarring around her lip. He went through and cut out what he could, pulling the healthier tissues together. He also cut out the scar that had been bothering her chest, and another round of laser treatments! (photos above)---------------------------------------------------------------------
Surgery#9-- August 31, 2016: with Dr. Ortiz for an angiogram, and then to embolise AVM. This is to embolise the lip, nostrils, and nose. This surgery went well. She was told there is a piece of AVM growing that is connected to her left eye that they can't get because of risks. She stayed in the hospital overnight and was taken to the heart monitoring room for her heart was having many palpatations, and low blood pressure. The next day she was released. They stayed one more night in NYC at the Yotel and then traveled back to South Dakota after 4 long months and 6 surgeries!!
Jennifer and Dr. Waner, as well as his amazing staff! Taken on August 30, 2016: It was a bit hard leaving them! It was so nice to be living close to the people who could save you! But I will be back soon! So thankful for everyone who had any part of helping me get better! I know I have a long ways to go but I am happy I am on the right path!------------------------------------------------------------------
and side photo 2/14/17 (below)(photo above) February 10th-2/14/17-- 5 months later!! 5 months of no surgeries, being at home and HEALNG!! Few nosebleeds, only a couple gum bleeds, and AVM still noticeable in nostrils.. Jennifer Hiles and her husband returned to NYC for more surgeries. They left their daughters at home back in South Dakota under their parents care for up to 3 weeks so they could continue doing their best in school. Although it is hard for them to be apart- Health is most important so they do what they have to do! ========================================
(photo above) Surgery#10-Febuary 17, 2017. Jennifer went through a 2.5 hour surgery to remove a bit of AVM that was coming out of nostril.. removed some of the irritating itchy tight thick scar tissue above her lip, to her chin, and on the side of her face. She also had co2 laser surgery to break up some of the large keloid scars and steroid injections as well. Surgery went very well! She will have to stay in NYC until Feb. 27th to be close to doctors- (a total of 3 weeks! The longest they have ever been away from their children. It was hard but thankfully they were in good hands with their grandparents! )and if all goes well she can go back to SD.
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SURGERY #11- April 13th, 2017 (3photos above) Dustin decided to stay home with the girls for this one, so I brought my sister. Although it was hard to be away from all of them, and I was so used to having Dustin by my side, it was nice to spend time with my sister.. and happy the girls have their daddy at home. This surgery they did something that was very scary to me. My whole life I put these two things in a group: My tooth coming out and death. They have been engraved in my head since the age of 12.. Anways.. my tooth that was barely hanging on for 7 years was barely hanging on now.. I kept feeling as if my body was trying to push it out itself. I had lots of pain above it and was terrified that it would fall out at home possibly have it bleed like crazy, and have nobody know what to do. So I mentioned it to my doctors and seen some new doctors here.. and I was informed the day before my surgery, they would remove the teeth! I was so scared. I couldn't see life without my teeth.
In surgery they removed my horizontal scars from my incisions, they fixed the corner of my lip, more laser surgery for scars, they cut out the remaining pink area of AVM to the left of my nose.. and they pulled out my teeth! I felt so much emotion when I woke from surgery.. simply because my teeth were gone and I was still here. I can't believe it! I would be happy to show you my gums but I can't even see them myself I am so swollen! Praise God though! I don't know how long it will take me to get new teeth to take their place but whoohoo! Who cares right now, can we just rejoice in the fact that the tooth that could of killed me is out! :)
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(photo above) 6/17/17: Two days before surgery #12 in Central park. Missing another front tooth- but thankful it came out safely last surgery and stil smiling! Grateful!! There is a lot to smile about! -----------------------------------------------------------------------
12th surgery: Monday, June 19th, Jennifer, her family, and cousin Jason Hiles flew from South Dakota to NYC on June 14th. Surgery day came not long after that, where they removed half of the AVM growing in my nostril- on the left side. This included my skin- so they removed skin from the left side of my nose to replace it inside my nostril.. this left my left nostril stretched out to reconnect with the skin.. They reshaped my upper lip.. Did more laser surgery on scars.. injected my painful neck scar with something to help the scar growth.. and took my other front tooth. Even though it looked not as bad as other surgeries, it didn't feel that way. It has been a pretty painful, swelling recovery.. but I know it will pass! My family and I will be here in NYC until June 27th. I will be spending yet another birthday here as well! June 26th I will be 30! Crazy how time flies.. I am not sure of my next appointment date as of right now but will see the doctor again soon to figure it out! Right now I am just hoping that my AVM in my nose and lip doesn't start growing from being messed with- as this can happen.. I still have some roots without teeth left in my upper jaw to get out. I am not sure when this will happen but hope it comes quickly, because right now I am missing 4 front teeth and would love to get a start on a new beautiful teeth smile, and be able to talk right again.
(3 photos above )#12TH SURGERY: JUNE 19TH 2017. Jennifer, her family, and cousin Jason Hiles flew from South Dakota to NYC on June 14th. Surgery day came not long after that, where they removed half of the AVM growing in my nostril- on the left side. This included my skin- so they removed skin from the left side of my nose to replace it inside my nostril.. this left my left nostril stretched out to reconnect with the skin.. They reshaped my upper lip.. Did more laser surgery on scars.. injected my painful neck scar with something to help the scar growth.. and took my other front tooth. Even though it looked not as bad as other surgeries, it didn't feel that way. It has been a pretty painful, swelling recovery.. but I know it will pass! My family and I will be here in NYC until June 27th. I will be spending yet another birthday here as well! June 26th I will be 30! Crazy how time flies.. I am not sure of my next appointment date as of right now but will see the doctor again soon to figure it out! Right now I am just hoping that my AVM in my nose and lip doesn't start growing from being messed with- as this can happen.. I still have some roots without teeth left in my upper jaw to get out. I am not sure when this will happen but hope it comes quickly, because right now I am missing 4 front teeth and would love to get a start on a new beautiful teeth smile, and be able to talk right again. -----------------------------------------------------------------------
(photo above) taken 8/22/17 in their airB&B apartment in Brooklyn, NYC days before her 13th surgery. -----------------------------------------------------------------------
SURGERY 13, 2017. AUGUST 22nd, 2017: Jennifer and her family left Huron, SD on Aug.20th- after the Micheala Brewster Poker run which was kindly and gratefully dedicated to help Jennifer Hiles, to make their way back to NYC. On the 22nd, she met with a dentist who agreed to take out the remaining teeth that needed to come out, and he kindly did it for halfprice which was $3,500. They did not have a pre-op meeting with her doctor before surgery this time. She went in for surgery on August 28th at exactly 11:50 am and it got over after 5pm. They pulled 8 teeth, removed cone from right nostril from last surgery where they had to remove avm and replace it with skin from the ouside of the nostril. They opened up the nostril and flattened the skin out. They pulled the part that seperates both her nostrils back up and pinned it so that it can not fall back down again.. but from doing that it created a hole in her "moustache area" so they ended up having to take skin from by her ear/cheek- and replace it using a skin graft. They also got to form a very nice cupids bow at the center of her upper lip. They cut down the scar where the transplant donor skin place was next to the right of the ear to help reduce the scaring. Besides that they did laser surgery to all scars and steroid injections. In the recovery room they could not keep Jennifer out of pain and she was there until they closed- finally able to go home to their temporary Brooklyn appartemnt. This was by far the hardest surgery Jennifer has ever had to recover from.. she couldnt get out of bed for 5 days and told everyone that she had given up because she couldn't stand the pain any more.. luckily as the next week came around she felt much better! She seen her doctor on September 4th and they took the bandage off her skin graft- She was nervous because she has had skin flaps die before and had to sit and watch helplessly as the skin on her face turned black.. but this time there was a fresh, healthy patch of skin! Thank God it is healthy! It did not look great right away but it was exactly what it is supposed to look like and in due time it will look better. They planned on leaving NYC on Septmeber 3rd so the girls could get home by Sept.4th- but because of the skin graft they had to stay until the 8th- so her girls will be headed to school for their first day on September 11th. When they get home- she will have to start going to Sioux Falls SD to a plastic surgeon and have steriod injections every 2 weeks. Since she has started having moments every now and then where she can't see and looses vision- she will need to find an eye doctor. They don't think it has anthing to do with the AVM but need to find out everything for sure.!
Photo above^ 2 days after surgery 13 on 8/30/17^^Photo above-September 5, 2017. Skin graft 8 days after surgery when they took off the bandages so I could see it for the first time. I don't know what I was expecting, but to be honest I was a bit blown away by the look of it.. I was told to give it time, and that it should heal up nicely in due time. I kept it covered with the thought of, "it looks weird," but after a couple weeks, I realized it could be a lot worse.. it could have died like one of my other skin flaps.. and if it did i would want nothing more than for it to be healthy, so after a couple weeks of being ashamed of the new look, I began realizing how lucky I was and finally uncovered it to wear my skin proud. -----------------------------------------------------------------------
^ This is Randy Houska! He is a dentist from Vermillion. We started talking on Instagram DM's for a few months now. I am thankful for him because he has been there to answer all my dental questions and concerns. I go back to Hollywood again in October and need teeth before then- Randy is a new follower of my story and mentioned that it looked like I "could use a break" and offered to help in many different ways. I can not tell you how relieving it is to have a dentist come to me- and offer to help. My whole life I feel like I have ran after dentists that have ran away- being too afraid to help me.. and the ones that weren't afraid to help me simply wouldn't listen to the severity of my case and wanted to pull all my teeth- which likely would of killed me. I am so happy that I have finally had enough embolisations that I was able to get all the teeth pulled that needed to go, and now I am ready for the next chaper of my journey and am actually ready to get a new smile, with new teeth that aren't unhealthy.. ones that I don't have to worry about! I am so ready to feel confident in doing what I love to do most in life- SMILE! (At the moment I only have 6 teeth on top- 2 on top right and 4 on top left.. and only 10 teeth on bottom center) He will be helping me get a 'flipper' denture right away when I get home.. so that I can look and talk my best in Hollywood, and in everyday life while I am waiting another 3-6 months for my gums to heal, and then get my permanent partial denture for the top!! And maybe when it is time he might be able to find someone to get me the implants on the bottom sides, but we will cross that bridge when we get to it! For now I am just very thankful to have such a kind, informative, want to be a part of my journey amazing kinda dentist in my very near future! I hear he is pretty good at what he does- so look out world! Jennifer will be flashing her big teethy healthy smile very soon! Special thanks to you Randy for this important part of my journey!
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Although it seams like she has had so much stuff done already, there is still so much to go. The doctor thinks she will need at least 5 more embolisms, her bone in nose broken and chizzled to thin it out, more treatments for scars, more AVM removed, facelifts and mini lipo to correct her face from all the surgeries. She will continue to need to come back for more surgeries.
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Hey Huron! This year's Womans Expo is coming up! Please join us on Saturday, October 27th at the fair grounds! I am happy to announce for those who don't know yet, that I was chosen, along with Luke Nelson, to speak for the RISE UP convention! He will be sharing his story in the morning, and I will be sharing mine at 1pm. RISE UP picks two people every year, to speak on their personal struggle, and how they managed to get though it. I hope that both of our stories will inspire you on whatever you are going though, as we all have our own personal struggles, to keep going and never give up, as well as know your own self worth. I hope to see you there! I know this is a bit late, but if you buy your tickets today (Oct.15th) before 5pm at www.sdwomensexpo.com , you will get a discount on your admission. I hope to see you there! God bless you and thank you for your continued support! ~ Jennifer Hiles
Hello Jennifer! My name is Molly and I was recently shown your "GoFundMe" page. I actually work for a doctor that is known to be the leading physician in treatment of VMs/AVMs. I wish I would have seen your page sooner as I am very touched by your story and have heard countless stories so similar to yours. The doctor i work for is Dr. Wayne Yakes and he specializes in vascular malformations. He is located in Denver, CO. and I understand that you have already initiated a trip to New York, but I felt compelled to at least let you know that there is a closer, possibly better, option to where you live. I'll let you know that we work with almost all insurances and we consult our patients for free. I'll end this message with a link to our website, which has an abundance of information and testimonials. If you have any questions, please contact our office at 303-788-4280 during the hours of 8 to 5 MST, Monday through Friday. http://swedishhospital.com/service/vascular-malformation-center Good luck to you!
Have you contacted former SD Senator Tim Johnson. He was treated for this condition and would possibly help you to promote your story? Just a thought!
Maybe someone could donate sky/flying miles!? People who travel a lot for work build them up quickly. Just a thought.
Katie, I had no idea former Senator Tim also suffers from this condition. I emailed him for his knowledge and guidance on the subject. Thank you so much for knowing that is what caused his stoke but he still continued to be our SD Senator. He, as well as our "Jenny" are both truly inspirational people.
How amazing are people! $8000 in 17 hours. That's great!
I sent messages to KELO KSFY and KDLT...hopefully they will help out!!!!
I have HHT and have had 7 embolized AVMs in my lungs. I wish I had money to donate but I want to wish you the best of luck. Peace!
Jennifer you are a beautiful, beautiful woman; it shows in your voice, it shows in your eyes. I wish you much happiness and health, you deserve it. You were put on this planet to show people what true strength looks like. My donation is very small but I hope it helps. With Love -Nick Cosaboom
I just wanted to let you know there is another AVM specialist in Denver! I have seen him for years and is great at what he does. His name is Wayne Yakes and works at Swedish Medical Center!
my son went through several of these in his brain and I wish I could afford to donate but all I can give you is prayers and long distance hugs you acn make it threw this I made sure to have things he had things he wanted to do when he woke up so he had to work arias that needed and rewire his brain quickly and all except seizures a scar right eye sight problem needing glasses to correct slight coordinator delay and some trouble with memory loss you really cant tell most of his left brain was removed but he has had 4 different procedures done 2 of them was actual opening of skull to remove affected aria it is tough but you can make it thew it I promise you can hang in there and prayers to ya
Jennifer, I went to school with your mom. I'm very sorry to read about your story. I was wondering if you've reached out to KSFY, KELO or KDLT to see if they could do a story on you? This is life threatening and I know after your story is told there will be many people that don't even know you that will want to help.
Have you asked the dr. If he can forego his fees? Also, since you have had this problem since birth, could you go to st. Judes hospital for treatment?
I so wish I could help you beautiful mama! If I had any extra money it would be yours. I do have some home made stuff that would be best to eat after surgery if you would like I would love to send a car box for you. Home made apple butter some home made body butter and some other home made beauty products to help you feel like the beautiful mama you are. I am sending my positive energy to you!lovin you! Hailey Rose!
Can someone please contact the Manhattan major hotels that could donate a room as a donation/charity write off?
Becky I have just contacted the media but the more people that submit her story the better. It just takes a couple of clicks to submit a story idea on all 3 local channels websites.
I just love all of people who give anonymously! So, to all of you, thank you, thank you, thank you.
I seen your story on one station - so thought I'd try on the other! :) Good Luck to you!! I received this back.. Today KELO Don Jorgensen 2:15pm KELO Don Jorgensen OMG, I will pray for that little girl. And I will pass this along to our assignment editor for story consideration. Thank you.
My prayers are with you as you start this journey of healing. May God guide the doctors who will be helping you complete this surgery with the best outcome possible. God bless you beautiful lady.
The good doctor should be doing the surgery, free of charge, and also the copay for the consultation, what an opportunity this is of showing goodwill to this beautiful lady and her family!
Becky, my mom read her story and reached out to all of the new stations.