Arachnoiditis: Looking to talk with others

I to have Arachnoiditis I went to Dr. Forest Tannant survival handbook for Arachnoiditis it list alot of things you need to do and follow. Dr. Forest Tannant also is on YouTube and tells you alot of information about it on there. I had a hard time getting good pain relief I now have a pain pump and it has helped but I'm in stage 3 with scarring and adhesion and it is really hard for me to do things. Read his handbook you need to find out how bad it is. Best of luck Ralph

Hi I was told in July of 2017 I have Arachnoiditis in 2015 I had back fusion it failed and now have 8 levels of fusion. I could not find out why I was having so much pain even after the bones fused, one doctor fused my Sacroiliac joint on my left side now I walk with a cane and at 50 I feel like 80 I am in stage 3 hith Adhesive and scarring it has taken away all the things in life I loved that and the pain has been the hardest part. I am married with 3 boys and it is effecting my mind I feel it is winning and I don't have much time so trying to enjoy what I can wish you the best Ralph.

How long after a ESI Injection does Arachnoditis take to show up on a MRI if they are looking for it.

Please do try to stop having any epidurals. This, as recommended by both Dr. Tennant and Dr. Aldrete, known authorities in this disorder. It can take a while to "show up" because it has to do with the formation of scar tissue wherever the needle went through. Read up all you can on Arachnoiditis. ANY needle into one´s spinal cord or spine is an "insult" that will result in scar formation and ARC. Dr. Aldrete called epidurals the TSUNAMI still to come in terms of this disease. I believe he was writing, or wrote, about it. Look up anything written by Dr. Aldrete and Dr. Tennant. Sorry am a bit abrupt....my dog is on my lap and did not like I was not paying enough attention to her.....Good luck, Fellow Arachniacs.....thinking of all the sufferers everywhere! Love you all....this is a terrible disease CAUSED by medical professionals who don´t always understand the delicate structures in our spines.....

Yes, indeed, it is not possible or advisable to surgically remove evidence of arachnoiditis. PLEASE DON´T LET ANYONE DO IT. This, per the experts I have seen over the years. One arthritis specialist (up in age) insisted I not let anyone do any surgery on me "or you wil wind up in a wheelchair." I am glad you didn´t do it. All that is left for now is pain management, but one more thing: become well-versed in anti-inflammatory regime when it comes to FOOD! AT one point I had a marvelous MD who was a fellow sufferer, who put me on the path of avoiding anything that was inflammatory, and it did help in terms of dosage of pain killers. This means NO PROCESSED FOODS at all, no dairy, no gluten, no beans, no nightshades like tomatoes and eggplant, and the list goes on and on. Turned out to be the same preventative list of anti-inflammatory foods used by our local Stroke Clinic. It is the hardest thing to do, but once you get into it, you CAN. I was on it for at least 5 years, and things got a lot better. Unfortunately, I fell off the wagon, and am trying to get back on. Very, very strict regime, especially while socializing. Takes a lot of planning and preparation and hardly ever eating out unless very selective. And focus on vegetables, SOME Fruits, mostly salads with only oil and vinegar, and good protein (sourcing of protein is key also). Good luck to all, and my apologies if I am not using this system appropriately....still need to learn a lot about Mayo Connect

Loved your note to Rachel, Gerisues... and your husband´s words. I too have an amazing husband, who married me right after my original laminectomy and fusion in 1973, so he has gone through it all. I had three kids at the time, all of whom he adopted and carry his name, and love him dearly. So we were both very fortunate to meet up with an Angel along the way. Still, it doesn´t always stop my bad moods caused by pain and frustration....yet reading your note made me stop-and-think about all he has done and continues to do to help me. We have a five hour trip up to Mayo coming up soon....hoping against hope for more help. Have been diagnosed locally with Normal Pressure Hydrocephalus (mostly an older person´s diagnosis) but to confirm they require a Spinal Tap. Yet, this is a No-No for us Arachniacs....so am scared to death. Have insisted on a "second opinion" at Mayo to see if I can be a candidate for brain shunt treatment....no guarantees I will be. So as time has gone by, seems complications come up. My gut feel is that NPH is a sort of "progression" of ARC, but this is just my gut feel after reading and reading and reading about both conditions. Hydrocephalus (or "water" on the brain) is actually excessive Cerebral Spinal Fluid on the brain. But why? Because there is an obstruction in the spinal cord so that Cerebral Spinal Fluid is not "flowing" to the brain as it should. However, this is just my layman´s assessment of a form of ARC progression.

I close now, saying, "I´m scared to death, but once on this horse, no way to get off." Am old enough now (76) that realistically I don´t have too many choices. If you are young, please keep reading and learning about self-help modalities. Not all doctors can help, you´re mostly on your own--although am sure hoping Mayo can help. I´ve had some very good years and am very grateful.... May be getting closer to the time to sign-off. But am grateful.

Keep plugging ahead! And do it one-day-at-a-time, with hope and self-awareness.

@joanmahon, Good afternoon. I have now read your post 3 times. Each time I get closer to what I call a very touching statement of the situation as it is right now. According to my mindfulness guru, Patsy, that is what we should do...be present in" the right now" and not fearful about "the what if?????"

I am 77 and had my first back surgery, a laminectomy, when I was 27, so about the same time as yours. My presenting issue was that my feet were cold and my legs were painful. Little did I know that the culprit was my spine. That was the era when they kept you in the hospital for 10 days and you took baby steps every day in the PT department. So......my issues were not resolved and I had another back surgery 10 years later. Come to find out my surgeon was not as capable as I might have wanted. He was disbarred or "dislicensed."

That is when I knew that we must be our own patient advocate, responsible for doing research, evaluating options, giving genuine feedback, following recommendations and protocols, and essentially becoming partners with our providers in our own care.

You are a great resource for yourself....and my only suggestion is to stay in the present......so the "being scared to death" cannot help only hinder. May you be free of suffering today.....Chris

Hi Chris, thanks for your sweet answer and comments. Yes, indeed, we had laminectomy around the same time, though mine was due to a bad fall which ruined my spine several years before, and was misdiagnosed at first as "kidney problems." Well, I was living in South America at the time....not much help there. When I finally got to a US hospital it was the era when there were no MRI´s yet, and all that was used was a chemical (produced by Eastman Kodak) called Pantopaque, which was sent into the spinal cord to determine where the problem was. I actually could see it as it went down to the obstruction or fractured vertebra. That chemical was taken off the market right around the same time, but it continued to actually be used for several years...in spite of an FDA Whistleblower complaint.

In the UK and Australia it was called Myodil. Same stuff though, and the "chemical insult" caused arachnoiditis, which is now at the adhesive stage, and perhaps the next stage (ossificans). Patients all over the world acknowledge it, but in this country it is NOT. Because of its iatrogenic nature. In fact, in 2010 there was a worldwide conference in France about Arachnoiditis....that´s where I got the name of the ONLY US speaker: Dr. Antonio Aldrete. The older doc who gave me a 5 hour appointment in the Florida Panhandle, with all my films for diagnosis. And confirmed the dreaded ARC.

I´m actually coming to Mayo not for ARC, but for Normal Pressure Hydrocephalus. The reason I mentioned being scared is because the spinal tap for NPH is a No-No for Arachnoiditis....and I worry about how Mayo will get around that aspect of diagnosing NPH, symptoms which are increasing day by day. However, my evaluation is scheduled to be with a true expert in NPH, hence I do have hope. Apparently a diagnosis cannot be confirmed unless the spinal tap can help determine the pressure of CSF traversing the spinal cord through the arachnoid villi. And whether brain surgery to implant a shunt will be feasible. This is the longest I´ve written about my condition, and today I seem to have let loose. But I wanted to explain that maybe it was an exaggeration to say I was "scared to death." I know coming to Mayo is the best I can do,.. and I do have faith.

I wonder if in the future I should write on a "private" basis. Don´t mean to bore anyone, yet, maybe there are some worthwhile kernels for somewhere else. I do reiterate: read all you can, and keep reading. There is now so much out there....which didn´t use to be the case. I´ve been reading, copying, highlighting, and making 3-ring binders for at least 9 years now. And it does help. Ultimately this falls within Central Nervous System, Pain and Arachnoiditis interest groups....so I do hope not to bore anyone or sound repetitive..... We have to be aggressively pro-active about it all!

Have a good week Everyone!

@joanmahon, Good evening. What a wonderful response. Please don't go"private". You have a wealth of information and others would benefit from your life experiences as well as your knowledge of the factors affecting your health.

Have you talked with anyone at Mayo about your spinal tap concern? Perhaps someone in that medical team could give you more details and relieve some of your apprehension. Knowledge is quite powerful. I am going to call on my colleague @johnbishop to see if he can find a discussion about the procedure and add to your information. John, we need a little help here! Sleep well....and peacefully. Chris

Hello @joanmahon, Thank you for sharing and asking questions here on Connect. I agree with @artscaping that sharing your experience and asking questions in an open discussion vs a private message is much better for you and for the members. Not only do other members learn from your experience, hopefully something they share will help you. I did run across a recent inspiring story for coming to Mayo Clinic for Normal Pressure Hydrocephalus that might help you.

Puzzling Symptoms Explained by Hydrocephalus Diagnosis
-- https://sharing.mayoclinic.org/2019/02/15/puzzling-symptoms-explained-by-hydrocephalus-diagnosis/

Here are 2 other discussions on Connect for NPH that you might want to join and meet other members discussing this condition.

> Groups > Brain & Nervous System > Normal pressure hydrocephalus (NPH) and dealing with work
-- https://connect.mayoclinic.org/discussion/nph-and-dealing-with-work/

This discussion is older but may provide some helpful information:
> Groups > Brain & Nervous System > NPH (normal pressure hydrocephalus)
-- https://connect.mayoclinic.org/discussion/nph/