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What specialist would you recommend?
Hi all! I am a 55 year old C7,8 incomplete quadriplegic for many years. I have central cord syndrome, meaning my arms are more affected by paralysis and numbness than my legs. I am ambulatory.
Because of spasticity and neck pain I had a Medtronic intrathecal catheter placed for baclofen (a muscle relaxant) and dilaudid treatment. Over the course of a few months I began having new progressive back pain. The chronic pain doctors who managed the pump simply increased my dilaudid dose repeatedly. After much frustration and insistence of a work up they did plain X-rays which were normal.
When it came time to change the battery, my pain was considerably worse, and refractory to both high doses of dilaudid and baclofen and oral meds such as NSAIDS. I was fed up with the pain doctors and had the pump removed, vowing never to return to a chronic pain clinic.
A year or so later, a MRI showed arachnoiditis, which I presume is a consequence of the pump and new muscle atrophy of my buttocks muscles and low back paravertebral muscles (? Due to arachnoiditis)
I am unable to sit comfortably for more than 10 minutes and unable to sit at all for more than 45 minutes.
2 spine surgeons have told me “it’s not a surgical problem “ (duh). I have been through 3 rounds of physical therapy without improvement. My neurologist sympathized but had nothing revolutionary to add.
I think it would be very helpful to know if my inability to sit is a result of the arachnoiditis or the muscle atrophy, but no doctor to date has been able to answer this.
Does anyone have any recommendations about what kind of specialist I should see to get this figured out?
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You should try a large teaching hospital and go to a rehab center to see a physiatrist. You’re an interesting case and they should enjoy trying to help you with an answer. Just be upfront with them as to your goal of the visit and your expectations from them. If you’re on Medicare I presume, you do not need a referral unless you’re on Medicare Advantage.
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1 Reactionhumbled by what you deal with.... calling angels to surround you..
hugs... any charitable/volunteering I do from now on......in in your honor.
Catherine
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2 ReactionsI might suggest looking into a pediatric neurosurgeon that treats arachnoiditis to see if you are a candidate for surgical treatment .
Interesting predicament - you have some difficult problems to deal with. I can only give you some suggestions for your problems. I agree that pain doctors and facilities are out of control. I think it would benefit you to go to an orthopedic or a general practitioner for another opinion. Explain your problems and ask what they would recommend.
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1 ReactionWould a pediatric neurosurgeon see me? I am 55
Thanks, both spine specialists were orthopods. My pcp is well versed with my dilemma;)
I’ve made an appointment with a spinal cord physiatrist at Kennedy kreiger spinal cord clinic. My physician also is an attending at John’s Hopkins so hopefully I’m on the right track
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2 ReactionsI saw a dedicated spinal cord rehab doctor. He spent 2 hours with me and I was impressed with how thorough he was. He had no suggestions however about the back pain, arachnoiditis or the muscle atrophy. I am so frustrated
Was this at the Krieger Center or John Hopkins. I would get another opinion
Kennedy Kreiger is part of Hopkins. Also saw psyiatrist regularly at UVA when I lived in cville. Feel like my on,y option is a big wig center like mayo. I am considering it