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Arachnoiditis: Trying to find a specialist
I am from North Carolina. And out of the 15 doctors I have seen since 2015 have said that arachnoiditis is rare and you do not have it. But no one is listening to my symptoms. Received a shot in my L5. But the doctor missed and hit the nerves while injecting Since that date I went from being able to walk to not at all. I am now in a wheel chair. Pain is in both legs to toes. None of the pain meds that my pain management has prescribed touches the pain. I have jerks in both of my legs. Weakness. Tingling and numbness in feet. My right eye has lost vision. I sweat on the top of my head for no reason. And out of the 3 MRIs I have had none have been done on the lumbar wth contrast. The pain gets worse week by week and no luck on finding a doctor. We are willing to travel if necessary. Please help.
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Hello. I was diagnosed with Arachnoiditis 3 years ago. Went from regular doc to pain management doc. I would advise you go to one in your area. They have so many options. I am on fentayl patch as well as hydrocodone. He also put me on marninol. Works good. I live in SC so we don’t have recognized Cannabis outright. I am trying CBD for first time. Hope it works! Good luck!
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1 ReactionDid you ever get any help??
Hi, @jseibert - just wanted to find out which member in this discussion you might be asking if they received any help? It can be helpful to put the @____ (whatever their username is) so that that person is notified you mentioned them and can be sure to respond to you.
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1 ReactionHi, @peggyella - just wanted to check in with you and see how you are doing? How are your cramps lately? How are things going with the pramipexole?
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1 ReactionI’m just reaching out for anyone who has experience with arachnoid cyst in the brain. My daughter has missed a month of school having horrible pressure in her head and been to ER twice for migraine meds with little relief. Trying to get into Mayo sooner than later for a 2nd opinion.
Thanks,
Jennifer
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1 ReactionHi, Lisa. Thanks for asking. The cramps are better and the pramipexole helps as long as I don’t walk barefoot on a cold floor.
I’m having serious problems though with idiopathic PN and autonomic neuropathy. Can’t find any free online info on my symptoms I’ll try the MC Connect PN Group. God bless you. 🙏💖
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1 ReactionI ended up with cauda equina syndrome and arachnoiditis after a botched L5-S1 laminectomy. On top of all the severe nerve pain, and lower extremity weakness and atrophy, I had to endure so much unethical and biased behavior from the medical field in East TN. The surgeon said I did not have cauda equina syndrome and it took seven years for me to find a neurosurgeon in NC that would diagnose the conditions in, however, I still do not have a pain management doctor that understands enough about the problems to help me. He prescribes high doses of opioids, which are not helping. Most of my pain is in the rectal area due to the surgeon putting a screw in the sacral nerve root. Did you ever find a doctor to help you?
@jelizabeth I am so sorry to hear your story and hear about your continued pain! I just continue to see my general practitioner. With the opioid crack down he is so limited now though and my pain seems to be getting worse (it seems) Every day.
Now on top of it I have been diagnosed with shingles. I never got the rash. The dr said we caught it early enough so I have been on the antibiotics but the pain is still there. I pray I don’t get the postherpetic neuralgia where the shingles nerve pain never goes away but with my luck...
Currently I am also having Major swelling in my joints which is Very painful. I had bloodwork done yesterday so I had them add esr and crp levels to see the inflammation going on. I have been bedridden for 8 weeks now. I try to do light stretches/movement but then I get muscle spasms. I am just so totally over it!!
Hi, @christinasuit - it is indeed challenging that in addition to your diagnosis of early adhesive arachnoiditis you now have a diagnosis of shingles. I've had shingles before, and it is indeed painful and bothersome. I'd suggest you may want to check out and post in this long-standing Mayo Clinic Connect thread on shingles https://connect.mayoclinic.org/discussion/shingles-on-face-and-in-eye
Your situation sounds like what my wife went through several years ago and is still fighting. Her immune system was apparently lowered (according to a couple of doctors) by being on a steroid for another medical issue for too long of a period of time. This brought on the shingles virus which even though she caught quickly she was in intense pain for 3 or 4 months. Like you she was just about bed ridden and this is what I want to highlight to you.
Her shingles pain seemed to be subsiding after 3 or 4 months then it got to a level where it stayed and has been there for 8 years now. Our conclusion is that something else kicked in and the theories are:
1: By favoring one side while being bed ridden she developed a nerve entrapment issue
2. By being inactive for such a long period of time she developed myofacial issues
Both of the above results in symptoms that experiences and can be easily researched on the Internet. So my comment to you is to keep as active as you can and don't favor any particular positions while recovering. I can't say for 100% this is my wife's problems but with all that she has been through these two conditions seems to make the most sense.
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