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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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I'm sorry to hear that your husband is going through the same thing. Did you get an official arachnoiditis diagnosis from a doctor? if so, how did they diagnose it? Through MRI's? Has he found anything to help his arachnoiditis? Do you follow Dr. Tennent who puts out bulletins on how to treat arachnoiditis? Sorry about all the questions, but I am constantly looking for anything that will help.
So are we. He has not had an MRI to diagnosis it yet. We have to go where there is an open MRI because he is so claustrophobic, How do I follow Dr. Tennent? I have a daughter who is a health coach and she has suggested a couple essential oils to use topically. Haven't gotten them yet. I also email a friend who is an md and a naturopath. Not medical world but I am researching all possibilities.
Go to the Arachnoiditishope.com website. I don't know if his methods work, but he seems to be the only person out there standing up for people with Arachnoiditis and intractable pain. He is retired, so he does not see patients any more. Buprenorphine is the only thing that I have found that helps a little. It is an opioid used to get drug addicts off of opioids. It is hard to find doctors that will prescribe it.
@cwallen9, Thanks for sharing Dr. Tennant's site - https://arachnoiditishope.com/. There is a lot of really good information on the website for members dealing with Arachnoiditis - from Medical Protocols, Bulletins, and Newsletters to Success stories from patients.
Thank you. I will check it out.
Please let me know how your appointment goes at Cleveland Clinic. It they are helpful I would like to also seek treatment there. Thank you!
Thank you so much.
The essential oil did not work for him. He thought it might be helping slightly but it caused severe tension and agitation. We are investigating other ideas.
Stoaway I seen your post I to have spinal Arachnoiditis and hereditary idiopathic neuropath I reached out because of talks about a spinal cord stimulator I had placed almost a year ago it helped some but not to the level that I would go get surgery as a matter of fact I’m having problems and having it removed my pedal insert has came loose that attaches inside and is causing havoc right now . This is a downfall to what could happen so now I have pain on top of the pain that I already had in the first place it’s been extreme pain and isn’t going away until they get me into surgery and seems there in no hurry as there is other surgeries in front of me I would think this is an emergency situation as this could cause even more damage to my spinal cord etc. Also when you have one of these depends on the leads you have you can’t get an MRI only x-rays with the one I have only head ct scan . I’m really worried because I can’t move around to much that it might mess me up even more
What kind of med did they give you?