Arachnoiditis: Looking to talk with others

please help!!! diagnosed, suffering, can not find any doctor to help me at all. Live in MA....any help welcome!

Please help!! I have been diagnosed with Arachnoiditis, extremely rare, intractable pain and neurologic sensation disorder. back and lower limbs-- burning, electrical shocks, vibrations, twitching, crawling, sharp stinging pain. I need help!!! No doctor so far can even remotely help me. I have been searching for someone for over a year. There is no cure but there must be some help? I live in MA, if you can call this living. Does anyone know of any doctor who can help me!!? All advice welcome!

Hi @dkhouri, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing and active discussion about arachnoiditis. I did this so you can connect with other members like @arannek72 @donfeld @dubis @carolinapearl53 @kimspr3 @jelizabeth and more.

I see you are looking for a specialists in Massachusetts and that you have also posted to this discussion

Arachnoiditis: Trying to find a specialist
— https://connect.mayoclinic.org/discussion/i-am-looking-for-a-doctor-in-nc-that-treats-patients-arachnoiditis/

Have you looked into finding a specialist at MGH? Or considered traveling to Mayo Clinic?

I am so sorry for you. I knew someone hospitalized with it, in ICU, etc. Still has pain now. Surely someone in Boston must be able to help? So many great medical facilities there! Best of luck!

@dkhouri
Hi. I am very sorry to hear the desperation in your voice. Yor condition of Arachnoiditis sounds terrible. Interestingly I was just reading about pain pumps (another person on Connect is considering having one put in) and I read that Arachnoiditis is one condition that pain pumps work well for. In case it interests you, here is the website I was reading:
https://paintheory.co/chronic-pain/intrathecal-pain-pumps-for-chronic-pain/
You say you can not find any doctor to help you. What type of doctors have you seen so far? What did they say? Obviously you need to find someone in the right speciality who is willing to treat you. If it is truly incurable, probably a pain management doctor? What have you taken so far for your pain?

I also see that medical marijuana can be helpful for your sufferers of your illness, which is legal in MA I believe. Hope you find the help you need. Best, Hank

Hank, thank you for sending this as my pain doctor has mentioned this as I finally found pain doc that understand Arachnoititis. I think my disease is progressing but it very difficult to know for sure because after 8 surgeries along with a operation that went bad for herniated disc. It took 3 operations to fix and therefore I have a lot of scare tissues and some doctors at Mayo do not recomend stimulator or any surgery. I get very skittish about implants of anything in my body especially from people with stimulator.
The worse part of all this pain is that I am a good golfer and live on one which causes real bad feelings about future along with losing contact with fellow golfers and the camaraderie.
Thanks again for your thoughts and help and I WELL revisit.

Hi Colleen, thank you so much for your response! I have considered travelling for sure, and my life is truly on the line as this has progressed to be eating my body alive. Yet, is very difficult for me to be in the sitting position, so I would need to get a medical flight to Mayo. I would be willing to spend the money to do this for sure, I just need to find a doctor at Mayo and be sure I can be helped prior. Is there ways to do that. Also, as far as Boston, I am having a very very difficult time finding a doctor experienced with this disease. It is very rare so I am not surprised, but I have been bounced around for rover a year, without a management or treatment plan --- while the disease is progressing. I'm beginning to feel hopeless and forgotten. I'm sure many with this disease feel a similar way. What I am hoping to do is find a doctor who has seen and cared for patients with this disease before; that is my main issue locally over the past year. I am not overly willing to risk surgery for a spinal cord stim (unless I can find a doctor who truly has seen patients with AA before) since surgery and scarring is highly risky, and the cause for most people with arachnoiditis.

Have you checked the Mayo Clinic for info on how many cases of your illness they treat/have treated? I checked them for two friends who have unusual conditions and got the number of these cases they tend to see and treat per year (200 & 800).

thank you all for the kind words, its very scary to need help more and more each day and try so hard but be unable to find any help.

please may I ask who your doctor is. I need help so badly. i will not risk a stimulator surgery with arachnoiditis. I worry that I will find a doctor after a year who understands me but the answer is "we cant help you at all". I'm very worried my condition is progressive very much so. Its been only a year of progression I am 31, I have no idea how I will make it "lifetime" as this is horrible.

If you would be willing to share your doctors name, I'd greatly appreciate the help. I will travel jsut about anywhere. I will get a medical flight I will sell my home. I'm in dire need of assistance.