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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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@laura1970
I’ve also been diagnosed with Arachnoiditis. There is a physician, his name is Forest Tennant. He has a website Arachnoiditis hope dot com. Not sure if we can post websites. There you can find info about the disease. Bless your heart, hopefully you’ll get the info you need.
Meant to mention that you can email him and he will actually respond.
Hello Laura,
this is a late reply to your post. I hope in the meantime you have found help and some answers and are managing to cope with your pain.❤️ But maybe you are still searching and trying to find help.
Having suffered of chronic neuropathy pains all over my body, and now - after years of spending time and tons of money consulting all sorts of doctors and therapists (I have finally been diagnosed with non-length-small-fibre-neuropathy and spasticity) I am aware that I can only help myself.
I totally understand the urge and longing to find someone - just someone - who will completely appreciate your situation and condition and offer real practical guidance and support. However, I am afraid the best we can do is to learn as much as possible about ourselves, listen into our bodies, our pain triggers and what might help us and give us relief.
I am trying to put myself into your shoes - it must be terrible not being able to sit without pain. I suppose lying down does not give much relief, or does it?
I had never heard the term arachnoiditis before, but did a bit research. Attached some quick info FYI. But I am almost positively sure you know all this already (although the dietary recommendations might still be useful). Sorry, if this is too simple and basic.
I also stumbled over something called spinal cord stimulation. Here is a link to one of I am sure many "providers".
https://www.acmcrn.org/post/spinal-cord-stimulators-for-arachnoiditis-weighing-efficacy-risks-and-new-technology
Since you mentioned you suffer from spasticity as well, I have found a highly interesting paper on spasticity and vibration therapy, also attached here below. Over the years trying all sorts of therapies I disvovered that high-frequency vibrations trigger my pain drastically, but low-frequency vibrations like gentle rattle-shaking combined with mild stretching "unwinds" my muscles and softens the pain. It is just so hard here in Europe to find a low-frequency vibration plate.
This paper focuses on comparing different frequency vibrations. Sounds promising and I hope there will be more appropriate physical therapeutical therapy possibilities soon!
Hope this helps a little!
I will be thinking of you❤️
Good luck and be well!
cureus-0015-00000033697 (cureus-0015-00000033697.pdf)
TF-4-Dietary-Measures-revised-7-24 (TF-4-Dietary-Measures-revised-7-24.pdf)
1-s2 (1-s2.0-S187874792301053X-main.pdf)
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2 Reactions@pennycurious1
Correction above:
non-length-dependant small-fibre-neuropathy