Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Spine Health Support Group.
Connect
Hello all. I am sorry that AA pain makes us part of a group. I can only offer some information about possible AA and/or pain specialists about whom you may wish to do some research. My husband has Adhesive Arachnoiditis from an epidural steroid injection between his C4 and C5 vertebrae that was poorly done. Woke up that next morning sobbing and curled in a fetal position from which he could not move. That was 2003 (I got the years incorrect in another post here) and he was eventually diagnosed with AA. Our pain clinic is terrible and his current med regimen is insufficient for this type of Intractable Pain. Not Chronic Pain, Intractable Pain. A major difference.
Anyway...there is a pain specialist just outside of Washington DC, who operates an integrative pain clinic. His name is Dr. Gary Kaplan, and he has also written a book, entitled "Total Recovery." He uses some of the same protocol that Dr. Forrest Tennent does. No doubt, if you have searched for AA, you have come across Dr. Tennent's site. He has some good free downloads on surviving intractable pain and protocol for diagnosis and testing and treatment with which you can educate you pain doc if he or she is interested. Dr. Tennent is in California and still takes new patients.
We are awaiting a time when my husband finishes his last year on a particular job and then we are going to try something different. Kaplan Center or Dr. Tennent or both. FaceBook has a couple of great groups. I follow Arachnoiditis Everyday on there. Good information and great support and caring members. Most research I have done come to a dead-end, mostly because the pain management docs are looking to do surgery. My husband has had no surgery, which makes him even more rare of an AA victim. Probably also makes him in better condition than many and for that we are grateful. His current doc will not prescribe stronger dosage of Exalgo ER, nor a breakthrough med and neither will he recommend a stim implant while my husband still has his job.
In Maryland we now have medical marijuana pharmacies opening up, but the pain clinics in our locale will drop a patient if they secure a script for medical pot. I had thought that they would work with the pharmacy to help their CP and IP pain patients lessen their use of opioids and/or use it for breakthrough pain, but no. What is the point of the state licensing medical marijuana pharmacies if they cannot be used.
Best of luck to you all.
-Jeanne
@lconroy
Here is an article that you might find interesting, we shared it at our Living & Thriving Support Group.
Hi Jim, well I guess it doesn't matter. Pain pumps are made in Puerto Rico, and we all know what just happened to that poor island. So there's a temp ban on all implantations. I really am trying to hold on tight now. My pain levels are insane. Thanks Jim.
Hi @danispiderspine, The website you posted is no longer available. Did you post the correct URL?
-
Like -
Helpful -
Hug
1 ReactionDr. Tennant is retiring and cannot take patients. Having some trouble with DEA, somebody complained. Too bad, he was trying to help.
my daughter is in same place!! we live in north carolina. we have been told to go to Johns hopkins or cleveland clinic have you had any luck??
my daughter is in same place as you!!! did you find help? we live in north carolina
There are some great Arachnoiditis support groups on facebook. I belong to 3 of them and they are all great. Just put "arachnoiditis" in the fb people search bar
c-edward; have you been diagnosed? If not, there is maybe a bit of hope to get diagnosed but your regular doc probably wont know enough to diagnose you. I had a doc diagnose me in 2003 but his clinic was closed so I had to start over...then it took me another 19 years for diagnosis. My doc can read your mri's
Hi @danispiderspine, is the the doctor you are referring to Dr. Tennant? I found an interesting article that may be the same doctor.
New Treatment Gives Hope to Arachnoiditis Patients (July 9, 2016)
-- https://www.painnewsnetwork.org/stories/2016/7/9/new-treatment-gives-hope-to-arachnoiditis-patients
John
-
Like -
Helpful -
Hug
3 Reactions