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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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@walker4
I thought Dr. Tennant retired?? Do they charge to do the phone consult after reviewing your MRI?
Yes, Dr. Tennant retired in 2018, but he is still helping us. Contact him. He does not do a phone consult, but rather writes you a letter with his findings. You send a Donation to his Foundation, after you get your diagnosis.
I had one injection. Had Sharp pain during but went well after. About 4 months later started having hip and low back pain. Now 14 months later burning in low back and LEGS. Had 3 MRIs nothing showed . Don't understand. I do have just been diagnosed with Axonal Neuropathy and small fiber polyneuropathy. Could any of these cause this or do I have AA.
Please contact Dr. Forest Tennant at 626-919-7476
veractinc@msn.com
California
He can help you understand.
How are you doing with your. Arachnoititis?
How are you doing with pain from Arachnoititis and is it adhesive?
PLEASE HELP.... struggling with arachnoiditis cannot find help... live in MA! all help welcome!
@dkhouri Have you tried Boston General.. very good Clinic/Hospital..
@dkhouri
I'm so sorry to hear that you're suffering and can't find help. I can definitely relate to you. I've been in a similar position for 17 years but have recently found help!! I'm so happy to be able to pass this info. on to others.
http://arachnoiditishope.com/ (Dr. Forest Tennant)
This site provides a ton of info. and it's so validating and eye opening! You can print some of it out to bring to your current doctors for consideration. It also provides a self help protocol. If you have arachnoiditis then this is where you need to be. You can also contact Dr. Tennant's team with questions.
https://intractablepainsyndrome.com/ (Dr. Forest Tennant)
Anyone that is in pain should visit this site! Again, it provides info. for you to bring in to your current doctors, a self help protocol, and you can contact Dr. Tennant's team with questions.
https://www.frankfeigenbaum.com/ (Dr. Frank Feigenbaum)
Dr. Feigenbaum is going to perform surgery on my Tarlov cysts. He specializes in Tarlov cysts but does a bunch of different procedures. I'm pretty sure he would also be able to take care of arachnoid cysts!
https://www.hypermobilitymd.com/medical-services (Dr. Linda Bluestein)
I have been seeing Dr. Bluestein for a couple years now. She is an integrative pain specialist and anesthesiologist. She specializes in hypermobility (EDS) but also treats patients from all over the U.S. for a wide range of pain. When you hit this link, scroll down to the bottom of the page and click on "Office Policies And Procedures". There you will find her rates and contact info. She does not accept any kind of insurance so you will have to pay yourself but it's so worth it. This is a doctor you will want in your corner. Her expertise and understanding of your condition will amaze you!! You can see her in person or via televisit. She knows Dr. Tennant whom I mentioned above.
** Dr. Tennant and Dr. Bluestein both recommend palmitoylethanolamide (PEA) for pain. I started taking it about 3 weeks ago and I can already feel a difference in the hip pain when I stand up. You will need to be patient because like so many other supplements, it will take 3 to 6 months to feel the full effects. It is supposed to be as effective, if not better than opioids! Below is a link to an article about PEA that I came across. If you don't want to read all the scientific stuff then scroll down to the part where it talks about the results it has in their patients. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/
I hope this helps you an anyone else that comes across this post! Take care everyone!
Terri
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1 ReactionI just saw your post. I hope you are still on the Mayo Clinic site. I also had a steroid injection in my neck area that immediately caused severe neuropathy pain in my feet, legs, hands, and arms. None of the doctors that I have seen (Cleveland Clinic, Johns Hopkins, etc.) want to acknowledge that the steroid shot could have caused my pain. I have not found any doctors who will address it. However, I did find a former doctor who has started a foundation to help arachnoiditis patients and also people who suffer from intractable pain. He recommends a drug protocol that is supposed to help inflammation in the spinal canal. The foundation name is "Tennant Foundation". I have been following it partly for a few months. I cannot say that it has helped appreciably. My pain is a little more manageable, but it is hard to tell what is helping and what is not. I think that the steroid injection could definitely cause arachnoiditis. My shot used Kenalog, which is supposed to be very toxic to nerves. Do you know what steroid they used on you?