Updated posted by Marie Mello 6 days ago
Hello, My distant blog. I am...
Hello, My distant blog.
I am getting closer to a diagnosis (well to ONE lol). I have a rare spinal thing called "Syringomylia" a syrinx (cyst) on my thoracic spine and in my cervical spine causing my cerebellum (small part of my brain) to collapse into my neck, causing a herniation of my cervical discs. I'm going to get more MRI's and make sure I have another thing called "Chiari Malformation" (which would explain my headaches, ringing in ears, tingling in hands/face, chronic spinal pain, scoliosis, and severe neck pain, tipping over/balance issues, and extreme dizziness) and will see a neurosurgeon and get a craniectomy (brain surgery) to correct it.....I have faith it will help fix my quality of life. I have SO much pain in my spine and neck, and lately it progressed, so let's pray that my Dr listens and refers me to the neurosurgeon. It's a rare disease, so he was baffled about what to do....the more I read up, surgery is BEST, because once symptoms are felt, paralysis can occur, so I would love to correct this and have one painful thing checked off. I've had neck and spine pain since I was 10. It got much worse in 2003, when I got on tramadol, and in 2008 I had Meningitis, and must have had the effects of the Chiari Malformation and the Syrinx formation occur at that time.
These things can also be caused from trauma to the spine, which on September 15th, I was faced with physical abuse from my ex boyfriend. He injured my spine and I have had extreme pain since then. Much worse pain than prior, which I then went in to my pain management dr. and he sent me for an MRI of my thoracic spine and found the Syrinx which he knows nothing about. We were thinking it was something that we could correct easily with a simple epidural injection, or anti seizure meds or something....but that certainly is NOT the case at all. I am glad I was diligent and have found the cause of many of my spinal issues. I can cross off my neck/spine/headaches off the list.
I have been doing MUCH research on Chiari Malformation and Scoliosis is the cause of it...which can explain why when I was 10, I began having pain and then my scoliosis was found, I then also began having neck issues, and headaches, bloody noses, balance issues, and ringing in the ears. I believe I have always had Systemic Lupus, which was NEVER found until I was an adult, but also have had THIS Chiari Malformation also since childhood, but no one has picked up on it, until ME< the squeaky mouse who is now practically in bed 92% of the time, losing weight rapidly, not feeling well at all, and overall, not much quality of life, finally found ONE answer to MOST of my pain.....I am overjoyed to know that I found the answer to this! I am so proud to know that I am able to overturn my own disease and hopefully will be able to come out on top. There will be some concerns, because I have a bleeding disorder, I just don't stop bleeding....with each surgery, I continue bleeding, and it doesn't seem to stop....so that's a major concern, but we will talk about all of that and will discuss the risks, etc. I am just happy to hopefully NOT have my spine feel this zapping/jolting pain! And I get the worst headaches from the base of my neck every single day from just coughing, or leaning forward....I hardly move and I get a headache. It hurts so badly. My neck is in agony all of the time. It makes complete sense now that I have an actual prolapse in my base of my brain, it makes sense that I would have herniated discs in my neck.I was thinking I JUST had herniated discs with bulging (kyphosis) but now it makes sense that where the bulging happens is where my cerebellum (small part of my brain) is pushing downwards, and protruding into my spine.
I go in Thursday to my Pain Management Dr. and will get an appt to get a full spinal MRI with contrast and will then be referred out to the neurosurgeon in Springfield...Let's pray I can get this overwith and live much more peacefully. After this update, I will update my breast info....that's a much more annoying one. :/ This one is much more cheerful. So I started with this one. lol. I added a new pic of me.....just so you can see me smiling.....I haven't put a pic of me in a long time. It's nice to see a smiling face. :) Thank you for being there for me. Happy Holidays. God Bless you all.
Here is a link of information.
Updated posted by Marie Mello 1 month ago
Hello, my distant blog. It's been...
Hello, my distant blog. It's been a long time, a couple months of trying to "ignore" this part of my life....the part where I have to face the facts that I am not "well" and have to go forward with surgery. But......since you've always been a great ear, here goes nothing!
I took a break and it was great in a way, because I was able to live freely without any poking, prodding, and tests. Yet bad, because during that time, I began feeling that "something" just wasn't right....I began having swelling in my lymph nodes under my left arm. I felt a huge lump in the outter part of my left breast and it continued to grow. I knew right away that it wasn't going to be good. So, after a month of "seeing" what would happen, and after gut feelings telling me to stop being so STUBBORN and GET CHECKED!! I decided to oblige. I am now in the beginning phases of PET scans, MRIs and Ultrasounds, along with Tamoxifen. I am going to figure out what's next- whether that's to remove both breasts and get a full hysterectomy, or just remove the lump. Either way, it's going to end in surgery. I accept this into my life....only because I want to LIVE. So I will do what's best.
THE GOOD NEWS: I look AMAZING!! I keep losing weight, and look wonderful!!!!
THE BAD NEWS: I am also losing muscle mass and bruising up just by sleeping!
The SUM UP: I am going to keep rocking it when I feel good, and will rest and do my best to eat when I am not feeling good. Funny how life works!! ROFL>
My colon health has gone way downhill, but I am so frightened of doctors going "back there" to check things after the bad surgery I had in March.....so I am trying my best to place this part of my life aside.....probably not the smartest thing I could do....but what else can I do when I am super scared? And who wouldn't be scared after all of the previous posts about the whole bleeding/pain/repeated hospital stays?!
Day by day I try to LOOK good and act fine....but it just isn't enough. There isn't enough energy in 5 cups of coffee to keep me up all day, lol. I can laugh about it, because 2 cups of coffee used to jolt me alive, and now the java puts me to bed, lol. I know, coffee isn't good when you have the big C, but who cares?! I like it and need it. One thing I love lately is CANDY!! Another thing I shouldn't be eating....due to large amounts of refined sugar, but when I'm NOT eating anything more than nibbles per day, I tend to live off of Milk Duds....oh Goodness YUMMMMM!! It makes me happy and I am going to continue splurging and making excuses to get them, lol.
Thank you to all of those who have been following my long journey. To those of you who have prayed and contributed to my funding. Surgery needs to happen in the next coming weeks or months, and is more needed now than ever. Please continue to follow my journey of sickness into wellness. Many blessings to all of my dear friends. xoxoxo
Updated posted by Marie Mello 5 months ago
After taking a couple weeks off...
After taking a couple weeks off from ALL dr. appointments, tests, lab work, etc, I finally have placed myself into a good place (emotionally) and am ready for the battles to begin.
I have a few nodules (spots) on my left lung, and finally went to the pulmonology doctor to get answers. So far, I just have to get lab work done, and also have to get one more CT scan (even though I am WAY over the limit of acceptable amounts of radiation). I'll get that on July 5th and we will see if they are gone, and if not, we will go through with biopsies or more further testing. I pray they are gone and no longer there. I was told there was only ONE single nodule, but I found out that there are 4 of them, the biggest is only 3mm....so they are small, and seemed to be in 3 different areas of my left lung, top left, top right, and bottom lobe....so we will know more about those when the CT results are back in. I have some issues with green phlegm and a heavy chest, and more weight loss, but overall, I really think it will be fine.
I still haven't gone to the NEW colon surgeon from UMASS yet. I took a few weeks off from all doctors and only went to one single appointment, and that's IT, and I really needed a long break to regroup and get myself feeling positive. Sooooo, I will be back up and running like a chicken with handcuffs (lol) soon, with ALL of the same tests REDONE all over again! Yes, it is certainly exhausting to start ALL OVER from the start, but I KNOW this could be the best thing that's happened to my body. So I am more than willing to start completely over, as if nothing has been done in the past. So, let the games begin. :)
The new colon surgeon will do lab tests, health screens, full check-up, defecogram, sitz marker test, gastric emptying, and all of the other "fun" tests that are completely embarassing and make you turn every single shade of red in the largest crayon box (lol). It will be good to start fresh and for him to know what HE sees on HIS tests. I will have to also follow up with a new UroGynecology surgeon also, because the last surgeon completely messed my pelvic area up by not only doing a terrible FAILED job at the rectocele repair (rectal prolapse) but also pulled down my entire anatomy (uterus, bladder, cervix) in the process, and also made the rectocele WORSE than previously. With that said, I will have to get all of those tests redone also with that surgeon.
I was so angry and didn't even want to talk about my pain and failed surgery for awhile...I was depressed and lonely. How is it that I was so optimistic about having the rectocele repair done transanally and it failed? But now I am thinking in a much better way: This happened for a reason! I found my way back to my faith stronger than before, and I was so afraid of the actual Total Colectomy (total colon removal) that will happen in my future, that I would have scarring and be unsightly! But now, with all of the pain, the bloating, the not going to the bathroom, dozens of enemas and tons of ways of trying to help my poor aching belly and back, and losing weight, not eating, sweating profusely, and overall being sick all of the time....well, now I am READY for the Total Colectomy! Ileostomy or Colostomy bag or not, I am ready! Could I have been so positive before? No way.....so I know that without the botched rectocele repair and the 2 extra hospitalizations with profuse anal bleeding after surgery, and the pain and agony, I never would have found my way back to my faith and my courage to fight this battle.
I am ready to find the cause of the weight loss, the pain, the torture that my body has caused me. I am so ready to find my way to healthy ME. :)
If any of you can find it in your hearts and possibly have a few extra dollars laying around, I would be so greatful for your help. The money is going to be placed towards hotel stays, babysitters, gas to travel, co-pays, and to get the best possible care that I so deserve after all of the previous battles that were lost. Please help me come up with the funding I need to get my health back, so that I can finally be the healthy and energetic mommy that my amazing little children need. We have so many "pajama days" and I am ready to travel, go to six flags, and live life without pain and laying down each day like a vegetable. Let's get me back up and running. :)
God bless all of you who follow my story. May you always get all that you pray for. Please share my story so that we can raise the funding amount needed for my surgeries and care.
Created by Marie Mello on January 17, 2013
My name is Marie J Mello, I am a single mother to 3 young children- a 10 year old girl, sweetest girl on earth and 6 year old boy and girl twins, my keys to my heart. My life "looks" normal on the outside to most everyone I know, but inside, I am sick...very sick. I have conquered many things in my lifetime or 32 years, many battles and hurdles, such as sexual, emotional and physical abuse from early childhood all the way into my adult years, and once I conquered that, I found out I have Systemic Lupus and Fibromyalgia. I knew all of my life I am "sick" but couldn't ever really figure it out until one day I collapsed from being in the sun (a trigger) and found my way into a hospital for a couple days, with the final diagnosis of Systemic Lupus. I have lots of infections and even have been hospitalized MANY times- several times with Meningitis, Kidney Infections, and pneumonia many times. I have also had problems with my "bathroom" duties since being a child and have always been told "you're just constipated" and sent home with laxatives. Now, MANY years later, and with what could have been FIXED many years ago, I have been seeing a Gastroenterologist dr. and he said I have a Tortuous Mega Colon Long and Redundant (long, loopy, and twisted) and Colonic Inertia (very slow transit- removal of waste), and he referred me immediately to a surgeon. The surgeon visit went well, a very nice man with manners and empathy, something I certainly NEED at this critical time in my life, and with me being so vulnerable and having NO family support, hardly any friends, and being just myself, my 19 year old niece and my 3 young children in this MESS...The surgeon told me what I have been denying that I need done: SURGERY. I need my small intestine taken out- or I need my whole colon AND small intestine taken out. I will need an ileostomy bag for months, if not LIFE, and I will have to somehow still be able to care for my children. My life has always been a mess, but right when I get myself under control, and my other illnesses are figured out, I find out that my whole colon has STOPPED FUNCTIONING. My life is not what I ever expected it to be. I am in bed most days, I lay around and in agony! I double over in pain (I get these crazy sudden attacks with a distended HUGE stomach, severe pain all over my stomach, hunched over in pain, and go from cold to sweating) it lasts for DAYS most times, with no relief from any medicines. The surgeon will perform only TWO more tests to make sure he can connect my colon to my rectum (a make-shift colon) or attach my large intestine to it....either way, a MAJOR life changing surgery will take place.
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