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Please help syringomielia, CRPS, thoracic outlet syndrome

Dear Doctor,
I am 25 years old with degenerative disc disease, syringomielia, Complex regional pain syndrome, thoracic outlet syndrome (2 surgeries-bilateral-left side I had a 1st rib resection, sympathectomy,& a middle scalenextomy in 2001 after being hospitalized for almost 2years... In 2007 a different surgeon performed a 1st rib resection only with no relief). Syringomielia is present from C5-6 to C7. I have classic RSD or CRPS, I only sweat on my right side of my face, with tingling/numbness on both sides, more on the right side. Severe straightening of the cervical lordosis. Disc protrusion at C4-5. At C5-6, there is a central disc herniation which indents thecal sac causing narrowing of the central canal to 7mm. There is also an indentation of the ventral surface of the cord. At C6-7, there is a R paracentral disc herniation which indents the ventral thecal sac & also flattens the right ventral aspect of my cord. Scattered prominent upper neck lymph nodes bilaterally. Radiologist said in report "the nodes are likely reactive given the patients history of painful adenopathy".
They have me on so many medications including lyrica, amantadine, diazepam, Oxycodone 5's & 30mg, opana 40mg 3x's daily, and others. My pain medication exceeds over 300mg of pain killers a day. I live in Burlington,VT where they, after 2 years (after moving here) started to suggest a double disc replacement but now after seeing my Neurosurgeon I was assigned to said he wanted to but now he says there is nothing to do but medication and physical therapy ( which I have done since the age of 14). My muscles in my neck are so spasmsed that I have numbness, tingling, sharp, burning pain that starts in between my shoulder blades & shoots up the back of my head, down my arms and now complete feeling of pins & needles in my feet with pain now shooting down my back to hip, knees. I had an amazing Neurologist in NY, Dr. Gregory Taylor MD PHD and a physical therapist that did strong massage, tens unit, & ultrasound. But as soon as I left a session my muscles spasmed instantly.
B/c it took so long when I was 14-15, in 4 different hospitals (including Albany Med. Westchester Med. And then surgery in Dallas, TX & Baylor University med.) the pain intensified & irreversible nerve damage accured. Emg shows deteriorating pinched ulnar nerve and Diagnosed bilateral Carpal Tunnel. It feels like I have a 100lbs blanket around my shoulders. I was a professional Ballet dancer in my younger years but now on disability with so much pain to pull back my shoulders that make me very hunched over. With all of these findings I know I'm not exactly normal in anyway. I went from an athlete to someone who must walk w/a cane & controlled by sickening medication. I have raynards as well I.E horrible circulation. I received a second opinion here and they suggested another hospital that " I might find a doctor to help". I've been fighting this for so long that I am without hope at this point. Please in anyway could someone help me?
3 Responses
620923 tn?1452919248

  Hi...may I ask what was the cause of ur syrinx?...is it congenital or acquired from an injury?...if congenital, do u also have chiari?...u did not mention it or ICP  2 of the possible ways a syrinx may form.

Also to have as many disk issues at ur age were u checked for ehlers-danlos syndrome?....u may want to ask about it...and stop by the chiari forum as many with chiari also have syringomyelia....

Avatar universal
Hi thank you for asking, I had no trama and a chari is not present however a significant granulation has formed or less than a year and all the other lymph nodes I mentioned. Dr. Fred Epstein of Beth isreal hospital in NY in 2001 said that it was most likely formed before I was born. My mother had a large disc fusion in '98 and suffers from fibromyalgia and osteoarthritis throughout here body. She has 2fused ankles, replaced hip, carpal tunnel surgery & continuing degenerative disc disease. She was a Professional ballet dancer for the NYC BALLET when she was younger. But with the syrinx it moves as the discs continue to push against the spinal cord. Most prominent at C6-7.
Avatar universal
I've never had any dislocations or skin that is that elastic however my hands to appear to have the "Swan fingers". When I open my hands, they shake like crazy but my fingers do not straighten at the top of my finger tips, all the way. On my fathers side, who passed away in 04' due to heart disease on his side of my family. My uncle had a heart transplant. Also my circulation causes "modeling" or purple-ness web like coloring on legs, feet,arms. Especially in cold temps (70 deg. Or lower). Again thank you for the advice and help.
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