Jennifer Hiles AVM Surgeries in NYC
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PO BOX 417
Huron, SD, 57350
This is Jennifer Marie Hiles. She 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, she was crying and her mother lay her on the couch to change her diaper when suddenly, she 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 and gums each day, The bleeding has never stopped, and can be extremely bad, and scary.
At 9 months Jennifer began to start needing blood transfusions here and there, because the bleeding was so much, her body couldnt make more blood on its own fast enough to keep up with the amount of blood she would loose.
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.
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.
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. 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'.
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.
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.
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!
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 SO MUCH!! Its hard to beleve its almost been a year 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, newspaper and and radio. You guys are simply amazing!
Jennifers first surgery this time around was on July 14th 2015 in NYC. She got 2/3 of her face embolised, which is basically like a medical crazy glue in the vessels of her AVM. This temporarily blocks the blood. This has stopped 95% of bleeding and will help her temporarilly until she has her major surgery. 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 and make their own new path of bloodflow after the embolisation. (below)
2ND SURGERY: January 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.
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.
￼￼￼￼A lot of Jennifers skin did not make it, it died on her face, turning black. It was terrifying just sitting there day after day watching my new skin I grew for months turn from purple, to yellow, to brown, to black. There was no reason for it, sometimes skin flaps just don't make it. I didn't know what would be done to fix it, I just had to wait it out. It all turned into a big black disgusting mess..
￼Her upper lip got HUGE. The AVM in it was now growing.. AVMS can grow crazily out of nowhere.. before surgeries it wasn't growing quickly at all, just growing with my face. But after this surgery it agrivated the left behind AVM making her lip look like a simpsons character. It was very painful and I got extremely worried. .
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.
￼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!
￼￼July 29: 7th round of surgry! 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!! (above)
￼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)
￼￼￼8th surgery on 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 31st 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!
February 10th- 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! (BELOW photo taken 2/14/17 )
￼and side photo 2/14/17 (below)
Feb 17th: SURGERY #10:
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. (photo below)
SURGERY #11- April 13th, 2017
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! :)
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.
Sincerely- the woman who just had surgery and don't need your extra plate of bs
I guess I just came here thinking it was something little and we are scheduled to leave here Tuesday so that gives me very little recovery before going home, and I am hoping nothing bad happens so I don't regret being 1,500 miles away from my doctor when I get home. BUT, I am not complaining about it at all.. I am just sharing my mind. I guess if I would of known they were doing all this stuff I would of been freaking out scared for weeks now- but instead I just found out and had one crazy scared flipping out day.. but I accept it now I just needed time for it to sink in.
Life can be so freaking scary and overwhelming sometimes. It can be hard as hell.. you can feel like there is so much you have to do and wonder if you can handle it. Wonder why you or just want to give up.. but don't. Talk to friends and family, cry, be crazy for the day, do whatever you gotta do to get though that day of mind torture. Sometimes I think emotional things are harder to deal with then physical.. your mind is powerful! But damnit I will do it. I will suck it up, and as much as I don't want to do this I will keep my mind on the positive ending, even if I am having a hard time seeing it as an actual possibility, and I will put one foot in front of the other and do what I have to do to be where I want and need to be. Doing the things we have to do isn't always easy. Sometimes you'd rather stab yourself in the foot then do crap you don't want to do.. but you just have to look at the ending goal and ask yourself if that is worth it.. would you do anything you had to do, anything that was put in your path to get there. Nobody said it would be easy and sometimes it gets harder before it gets better.. but if you give up you will never reach that goal.. and if you stop and say it isn't worth the end goal because you are so stressed.. so hurt.. so tired.. I will have to disagree with you- because at one point it was all you wanted and you knew you would do anything to get there. Don't give up because it gets hard.. the best things in life usually don't come easy.
I am a bit more calm than I was this morning/afternoon. I went absolute crazy today and have since been in my mind all day but trying to make the best out of today by doing things with my sister and Laura.. even ate like way too much snacky foods just because I know I most likely won't be able to eat again any time soon.. but thank you to all of you who talked to me and coached me though life. You guys help me more than you could know. It is nice just knowing someone is there for you and cares.
So with that said I think I will get a lot of things accomplished while I am knocked out on the surgery table. I think we are leaning to getting a removable bridge type thing for my new teeth.. holy wow I just said new teeth. That part didn't even sink in until just now. Is this real life? How many of you have gotten your teeth removed? How long does it take to heal? Is it horrible? And if you got a partial, do you like it? How long after were you able to receive your partial?
I am so tired, I need to lay down now. I wrote so much, I didn't mean to. I love you guys. Please pray for me if you pray, I could use it. My nervs are shot, and I miss my husband and kids. I want to hug them all tight in a great big cuddle puddle.. and please- please.. share my Gofundme if you can on whatever social media's you have.. something so small can help so much. I appreciate you all greatly- thank you so much for all your support. I will update again when I can. God bless- Jennifer Hiles. 2/12/17
Hey guys, thought I would give you all an update before surgery #11 tomorrow. I have to be at the hospital at 7:30am and surgery starts at 9:30 am I do believe.
I came here thinking I was just getting some skin removed and my lip fixed up a bit more.. and I guess I was wishing they would do more than that because I love to see big changes since I am impatient, and to get as much done while I am under.. but I guess I should of been more careful for what I am wishing for!
Today was a rough one. Proboly one of the hardest days yet. I hated all of it. I hated that it was me that had to go through all this. I hated that it seamed unfair. I hated worrying. I hated wondering. I hated being controlled by my thoughts that I can't seem to control sometime. I hated that my husband wasn't here. I hated that my kids were in gymnastics and I couldn't be there to watch them. I just hated.. but mostly I hated the fact that I hated, and couldn't pull myself out of it.
I seen my doctor today- and went through my past angiograms, tons of them. I watched the frames of huge and plentiful vessels eventually get smaller and lighter with each click turning the page. I watched the tangled knots of vessels that looked so complicated that seam to have this huge control over my life- wishing they would disappear from the frame. I didn't know what was what- because the disease is far too complicated for my mind to comprehend. Seeing the vessels get smaller while flipping through the frames of time- I felt blessed. Thankful. I awaited for my doctor to tell me good news, to give me words that would fill my body with hope and joy, there was no doubt in my mind- I just knew he was going to tell me the best news. But then, he didn't.
He described it as best as he could to me: He held out his hand, nice and wide. He pointed to his palm, "Say this is your avm, right here- my palm, okay? Now see all 5 of my fingers? Those are the feeders, that connect to your AVM. You have 4 easy to get to feeders, and one not so easy one... the easy ones being the 4 fingers, and the hard/more dangerous one being the thumb. Here is the problem.. You have had 3 embolisations, and in those- you have had 4 of those feeders closed (with medical crazy glue put in those vessels (embolised)) and of course, those 4 that were closed were the easy to get to ones, the 4 fingers. There is one thing feeding your AVM and it is the hard more dangerous one, aka your thumb.. but in reality being your right eye. Can I go through your eye? Yes, I can.. it is possible. But it is dangerous. The risk of going blind is there since it is connected to your eye of course. So is it worth the risk? Right now, I would say no. Your bleeding just increased in the last 2 weeks but it is minimum.. so we are weighing our dangers, and right now the vision loss is more dangerous than the small amount of blood you are using. Can/will that change? It could definatly change and when it does we will weigh our options again."
So basically he could of got in there and done it- killed the thing off.. and he still could but.. you get the picture. Not exactly the news I was hoping for. I was waiting to hear that he could just get in there and get it done, closing this monster off.. then I would of only had to worry about my upper lip which sounded too good to be true in the first place. Anyways that is all about the embolisations.. aka medical crazy glue which has made a HUGE difference in my life- Thank God. I guess I don't know what the future of my life+embolisations looks like now with that bump in the road but time will tell..
Anyways, my tooth, front right. The tooth that started this all. It has been so loose for years- and I wasn't supposed to get it pulled or let it fall out for the risk of bleeding to death.. which I could of seen totally happening with as much as I used to bleed. It scared the hell out of me, even in my sleep I had nightmares of my tooth falling out and blood would just pour out. It was the most scary part of my life. I needed to see him to help me figure out what to do so that I didn't die when it fell out.. and then all this happened. A new face, new nose. Surgery after surgery. So much more than I ever thought was possible! Which I am happy about, even if it is hard... but back on track to my point: My tooth. The last 1-2 weeks It has been so painful, it feels like my body is trying to push the tooth out itself. It tingles and shocks me- its hard to explain. But it is very wiggly and painful- and days before I got here I was scared but said "At least I am coming to see my doctor and he can figure out what to do.. well he did. I spent a while today seeing other doctors to help decide what to do. and they are pulling my upper teeth tomorrow in surgery as well as everything else that they planned on doing on top of it. I am scared. This tooth that I wanted and needed to stay locked inside my gums is getting taken out and all I can picture is blood and scariness.. Should I think like that? No, I have the best doctor I could ask for.. but I am scared. My whole life I associated that tooth coming out with death. So yes, I am terrified. It isn't just that one tooth, It is all the teeth that are coming from my AVM filled gums.. two of which that the teeth have broken off and the roots remain buried inside my gums. I guess a sliver of my mind wonders and worries about not having any upper teeth and how I will look but mostly for now I just want to focus on getting past getting them removed safely. I know that I can not have implants now like I mentioned before and wanted badly- because my bone in my jaw is not present.
I meet with my doctor tomorrow (Tuesday the 11th) at 2pm for a check up and get a better idea of what he will do in surgery.. surgery Thursday.. I imagine I'll have a post op check up Monday.. then Tuesday the 18th I get to meet with a dentist FINALLY to help figure out what to do with my teeth! It's crazy I'm finally able to get to point!! This is what started it all... Me bleeding so bad and my front tooth was so loose-if it fell out I could of likely lost my life. And now I'm okay to see a dentist?! I've never been okay to do this. I'm really nervous but excited in a way.
Even though I'm normal liked to stay here to heal/make sure there are no complications/get stitches out... I'll miss my family and Jessica will need to be getting back to work, therefore after my appointment Tuesday I'll be flying back into Sioux Falls. Hopefully that's okay lol.
Thank you all for your continued support! I get further and further each time I come here to a safer happier place in my life.. and I could never thank you enough for that. It's hard to watch the sadness in my children's eyes when I leave but I'm praying and keeping faith in God and his plans that this will continue to be worth it - because I'll be able to be here longer because of all of this.. and have time with my children.. there's no greater joy or want for me. Just being here for them. They are my everything- so thank you for giving them more time with them, and vice versa❤❤ you guys mean the world to me.
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!
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.
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.
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
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
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!