Greetings from Alaska! I'm a Chiarian who had Decompression/Untethering surgery in 2006. Unfortunately, nearly 2 yrs. had passed since I'd become symptomatic, and the surgery was only successful in halting the symptom progression. I was left with zero equilibrium, such that I need a wheelchair or crutches for mobility, on top of the usual ACM symptom list. I want to sincerely thank ASAP, and every patient who spoke their truth in this video. As well as those who worked to produce it. You give me Hope, and that is a priceless gift.
I have Chiari, Syringomyelia and EDS. Iv had two failed decompression surgeries and live every single day every single minute in pain. I have 4 kids and it scares me so much to think that they may go through this ine day because of me. This video actually made me cry ... alot. I never cry over these things. But this was the most apt description of my life. Except I cant walk too much anymore. Found a Dr who can help though. Bring on the 3rd Surgery. Hoping today is a low pain day for you all. Xoxo
after three and a half years there is a name to my condition. But only over the past 2 weeks did it come to become a reality of my condition. At time I feel as I'm loosing my mind. It's good to see I'm not alone...not that I wish this on anyone. I'm scared.
This diagnosis has been bitter sweet.... I now know I'm not crazy and those very insensitive medical professionals that have been so dismissive were wrong but on the flip side they are still dismissive for all these years because they have no idea how to treat it and resources for us are limited to gleaning information from others journeys....
Bravo, well done. Strive for answers. Always. Something in the list of current issues will resonate with the appropriate health provider. Never Give Up!
My Syringomyelia was found when I had MRI just before surgery on herniated disc. The doctor who was supposed to operate then refused as he thought the Syringomyelia was the root of my pain. So I was then passed back and forward for next 3 years before any would operate on disc problem. When I still had pain after operation I was more or less told that I was faking it and the main treatment they proposed was to go into rehab to reduce my dependency on pain relief. The pain meds are the only reason that I am able to bear this horrendous disease. Doctors generally know nothing about this condition. On one visit to pain clinic I was basically told to stop being lazy and get a rowing machine. With Syringomyelia you need to avoid anything too repetitive that would put strain on your back. Needless to say I have not been back to see that doctor. Keep changing until you find health care professionals that believe you, the others are just a waste of your time and energy, not easy I know. We have recently moved house and had to move from a wonderful GP to another who now treats me as a lazy drug addict, so I'm now looking for another GP.
I need help! I have a syrinx in my thoracic spine and a chiari. I have had 2 decompression surgeries that have failed to collapse my syrinx. I have been fighting this for 8 years. Most of this time being misdiagnosed. I've been told Im crazy and drug seeking before I was finally diagnosed. Then I was told syrinx doesn't cause pain. I am now fighting the hardest fight. Ive been told theres nothing they can do to a syrinx doesn't cause pain (I love that one). This has ruined and taken over my life. I live on Long Island and don't know what to do. I am depressed and if it wasnt for my children, i wouldve ended my misery a long time ago.
@@BlackSheepTraderDevelopment I haven’t been to him but heard great things. I went to Vorster out of Cleveland clinic. Greenfield is just near Long Island, which is why I recommend him to them. Hopefully you’re hanging in there!
Same. Decompression has made my symptoms worse. I was only Experiencing pain from my syringomyelia before surgery now after decompression and shunting I have severe Chiari symptoms and worse syringomyelia pain. Nine months postop and my syrinx has now Expanded. I’ve been denied SSI three times now and I am super depressed. I would end it if it weren’t for my kids. I don’t want to hurt them
I had my decompression surgery after these horrendous headaches-I'm sure that other Chiarians can relate. I don't think I've ever felt that good before. Good luck to you all!
I dont know if its chiari that I have. The neurosurgeon called it cerebellar tonsilar ectopia 3.7mm. I tell her my symptoms and she said it might just be fibromyalgia or depression. Im in constant pain. I wake up with a headache and fall asleep with a headache. Get migraines about 4 times a week. My whole right side of my body is tingly. I have tingling on the top of my head. I have control of my right hand but it shakes sometimes. I drop and break a lot of things. I have too many symptoms to put on here. She ordered an antidepressant. A cervical spine mri because my neck and shoulders are stiff. I think because I'm on medicaid that she doesn't really care. I have been on the antidepressant for 4 days and all I seem to get out of that is sleeping at random times of the day. No help with the pain. 🥺
My 13 year old daughter had a brain scan for Head aches the hospital rang to say my daughters brain is going down I spinal colum I'm now waiting to hear from a neurosurgeon I'm so worried
My Wife is having Syringomalia, She was diagnosed with TBM-MDR, we all lost hope of her survival but she is a fighter, she got cured from the same but the medications were very devastating for her Body. Due to heavy dosage steroids she had to undergo Bilateral Hip replacements and post that now she is in pain because of Syringomalia. Hope to see such support groups here in India too...Doctors here are prescribing symptomatic medications and has advised supervised neglect...Hope to see some cure...
