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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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Thanks so much
Hello. Hope all are well. I've been suffering with pain for 7 yrs after having a transforaminal epidural injection.. recently diagnosed with arachnoiditis. Having a difficult time finding a Dr that is willing to treat me. Hoping to find a doctor in the Massachusetts/ new England state area. And recommendations would be greatly appreciated. Many blessings to all
I know this is an older post but I have a lot of the symptoms of adhesive arachnoiditis .. it’s pretty much the severe stage of symptoms.. I cannot find a dr in Colorado to test me but wondering where I could go or contact.. thank you ..
If you’re doctor won’t test you, go to you’re family doctor and ask for MRI. That’s how I was diagnosed with adhesive arachnoiditis. There are several types of drugs you can take to help. I have a pain management doctor and he is the best!Of course, I live in South Carolina.
You can find someone to help, do not give up!
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1 ReactionIf you had an MRI, that’s the only way to know if you have this rare disease. Lots of reasons for you to have this terrible problem. I am currently on Fentanyl patch, Marinol, hydro cod one as needed. I didn’t want a pain pump..there are doctors that can help. Usually they are anesthesiologist and have a pain clinic also.
Good luck!
Hi
I am new to this forum, also in Chicago and considering asking for a consult at Rush. I’m currently All of my care at Shirley Ryan AbilityLab with Pain Management Program. I feel I have outgrown my doctor but don’t want to take a leap without a lot of thought. Are you still at Rush?
Also you may want to know about the Chicago a chronic Pain Mutual Support Group. I am a co-facilitator and would be happy to share more info with you.
In 2021 post l5-s1 fusion that was not recovering as expected, a lumber MRI showed arachnoiditis. I have seen the images and as a CT technologist I know what I'm looking at. My issue is that my surgeon refuses to address the finding. He says I'm doing ok and should just keep going. At 62, I worry that there are possible things I should be doing to keep symptoms from worsening. I am very fortunate that I can still function mostly fine. I do have burning pain in my lower buttock area and terrible leg cramping at night. Not sure if associated or not but want to be sure I'm followed properly. Thinking a neurologist or neurosurgeon would be best. Thanks for input.
Send your all your information discs and all to Dr. Forest Tennant Foundation he can and WILL help you! He helped me and helped thousands of others with diagnosis them with AA because doctors are too afraid of this disease and too afraid of taking them on as a patient because we are a liability to them. This disease is iatrogenic which means it was caused by the doctors and they do not want to acknowledge it. Look the address up on the net, you can call him and actually speak to him or his wife, you can mail your things or send him an email or do whatever you wish or send overnight. Good luck to you and may God bless.
Send and and all discs you may have and if you don’t, get them, to Dr. Forest Tennant of the Tennant Foundation. He diagnosed me and thousands of others with AA. He and his wife run the Foundation and are wonderful, wonderful people. I have his email address but I am afraid to leave this page and get it because I may not find you again, that may sound strange to you but this is my second time posting here and I don’t know quite how to operate this posting this. You can look up The Tennant Foundation and you will find the address there. I have this information to one other person as well. I have a list of Doctors as well Dr. Tennant had given me, among others, that I can give to you as well as the people on this forum looking for doctors in their area if they want it they only thing is the list can not be publicized at least that is what doctor Tennant has at the top of the letter head. And I want to be stay in good standing with Dr. Tennant because I still converse with him about my AA. Therefore, if anyone would like the list of Doctors just let me know I can get it to you however you choose. We all need the help and I’d like to do my part any way I can. I hope we all have less pain and may God bless.
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3 Reactions@ruby460 I also wanted to share this link with you in case you could also have another condition that can cause the similar overlapping symptoms in addition to your spine issues. This is a technical article about Lumbar Plexus Compression Syndrome. There are a lot of good articles on this website written for physical therapists.
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/Is Lumbar Plexus Compression Syndrome something that you are familiar with? This may be something to discuss up front with your next specialist or explore this with a physical therapist to see if anything can be resolved or to narrow down a diagnosis that is spine related.
How long has it been since your spine surgery? What was the expectation for recovery in this time frame?