Patient with Adhesive Arachnoiditis in need of help

I have Arachnoiditis and I am seen by a Neurologist. I have peripheral neuropathy in both legs that is very painful. I am on Baclofen and it helps me. I have back pain to and I take Flexeril and Melxoicam. Hope this helps you.

Stephanie,
I too have had a had a pain specialist not acknowledge my Arachnoiditis even after my spine doctor sent him a letter stating that I did have it with 5 levels of scar tissue in my spinal canal. I too live in Alabama (North) and have had this just a year or so longer than you. My wife has had to endure me with the same pain as you deal with.
I do not know if you have heard of Dr. Forest Tennant in California but his web page gives a lot of directions for living with this disease. It is called Arachnoiditis Hope. Read every section from the home page about causes, symptoms and how to deal with the disease. I had some things going on with my body that I did not know was caused by this disease like ringing of my ears, blurred vision, joints all over my body hurting from head to toe, scar tissue growing in my hands and other places and memory loss. The arachnoid membrane goes from tailbone to your brain and when inflamed it affects a lot. I was talking to a local man a few weeks ago that has a surgery (10 years ago )that fixed his but said the surgery was no longer available because of risk and complications to some patients. He said the surgery completely fixed his and he is doing well. (Laser Spine Institute in Tampa Florida)
It may be available in Canada or Mexico because of regulations and law suites in the USA. That is the first and only time I have heard of anyone having surgery to fix this problem.
I was told in 2009 that I had so much scar tissue in my lower back that I would have a 50/50 chance of coming off of the operation table. So much scar tissue would be covering blood vessels it would be hard not to hit one and bleed to death. Hope this helps. I am just an old man with the same problem. I just trust Jesus to get me through.
Stephen

Hi Stephanie,
You have gone through a lot and it’s not over. I’ve had AA since 1978, so I’ve been around the medical block a few times. THERE IS NO CURE. Read that a couple of times and take it to heart. Our focus needs to be on managing symptoms to recover quality of life. I’m happy to respond to specific questions about any treatment I may have had in 40+ years of dealing with AA, but a real help has come from intrathecal pain pumps (Medtronic or Flowonix) that deliver concentrated medication precisely to affected nerve roots. My first was installed In 2009 and I haven’t taken oral opioids since.
Please keep faith, and keep a journal if you’re not. Try to team with your Doctors to work the process of getting to the best solution you can have. Am I pain free? No. Will I ever be the man I was? No. Can I love my grandchildren? Yes. One foot in front of the other is how we AA FOLKS MAKE PROGRESS— I’m with you and understand what changes and challenges you are facing. Best, Archie2

I am so confused. I had brain surgery (Specifically MVD) and the surgeon put in the operation note that he encountered thick and extensive arachnoid adhesions. I’ve never heard of this before and none of my MRIs even indicate I have this. I don’t have symptoms associated it’s this disorder. However, I do have sarcoidosis. Which I think mimics this. I don’t think I have this. I assume he’s lying because he didn’t biopsy it and did not refer me for further treatment. He didn’t say if he removed all the scar tissue. Just that he encountered it. There is nothing else in my file regarding this issue. Heeeeeelllllllpppppp!

@ghostwriter Not to worry. Often doctors write things they may think about as possibilities in medical notes. That doesn't mean it is something conclusive, it's just their thoughts and description at the time. They don't have a reason to make things up in surgical notes. I don't know if that would show up on an MRI or not as medicine often isn't an exact science. It's an art of looking at various clues and drawing a conclusion. Some times it's a suggestion of a direction for further advice. One thing that is certain is that surgery creates scar tissue. If you are really concerned, you might want to ask your provider. It sounds like you are doing well which is the important piece.

Re AA— don’t Look for trouble when there isn’t any. The human body is often generally the same and specifically different. I did an autopsy on a 56 year old man whose insides were reversed— heart on the right, liver on the left, etc. He died from heart disease as I recall, but the reversal was noted in the report.
In your case, do you have symptoms that would lead a diagnostician to conclude Adhesive Arachnoiditis? For a clue to answering this, please read through the posts that refer to symptoms…. Good luck. Archie

@archie2 I do have some similar hospital experience as a recipient of an American Cancer Society fellowship, but I don't want to make others uncomfortable with details from that experience, and I worked in university biological research for a neuroanatomist. I am also a surgical patient for spine and ankle fracture fixation. I do recognize that sometimes adverse reactions may result from medical procedures, and I have had to be an advocate for myself to use knowledge from my past reactions in conversations with my providers. I do realize mistakes are made that may cause adverse or permanent effects. I have had some inflammatory reactions from an injection and foreign materials in surgical and dental hardware. In sleuthing out possibilities and commonalities, I've been able to draw a likely conclusion. Because of my science research background, I've also known how to look for published journals, and with my spine issue, I actually found my correct diagnosis that was missed by 5 spine surgeons. I was the patient that was dismissed because they didn't understand my symptoms, until I got to Mayo and included the found medical paper in the conversation. Some of my physical issues are from injuries, scar tissue or fascial adhesions, and I have worked extensively with my physical therapist doing myofascial release. It does help a lot of issues by getting the fascia and muscles to glide again and move better and helps to get the body back into a better alignment. That can take pressure off of nerves and muscles. It may not help everyone, but it also allows better fluid circulation in the tissues. When fascia gets stuck and dehydrated, the body doesn't clear waste products well. MFR work has made a profound difference in my life. I do try to help others understand more about what they may be experiencing if I have some knowledge that relates.