Doctor Who Could Help Patient with Adhesive Arachnoiditis

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

My pain management doctor recommended that I receive an epidural to help relieve my severe back pain due to arachnoiditis.
I'm terrified, however, to have any more injections or invasive procedures in my back.
I don't want to miss an opportunity for relief, but am so torn about whether I should proceed with an epidural.
I would appreciate any advice the group has to offer.
Janet

I had an epidural a couple of weeks ago. It was no big deal but I had been terrified too. Seems to have helped!

Janet, I have had more epidurals for my back pain than you can shake a stick at. Most have not provided any relief. But the procedure, as a rule, is no big deal. I have had epiduras in out-patient surgery centers and right in the back of the Doc's office. Had them in my L5-S1 and even in the sacral space, They have not helped me. However, many peope do get relief, usually temporary, from them. Worth a try.

So good to hear that you had some relief! I think I'll move ahead with getting the epidural. Thanks for your feedback.

Everyone’s body is different and every doctor is different. I have had about 20 epidural and blocks in my back over the years and never got any relief. I also have 5 levels of scar tissue in the lower part of the spinal canal. Because I never got any relief I will not take any more. I have had them from at least 6 different doctors so it just will not help me but I know people who get blocks that it helps on a regular basis. The block was not a problem for me. I just want you to do your research before you start getting them. Look at the Mayo Clinic, Cleveland Clinic and Arachnoiditis Hope web pages for answers. Look for research for your disease and then make your decision. It is your body and you need to make the best decision for you. Blocks are done every day all over the world and people get relief. You need to find help for your pain. Praying you find relief.

One of the worst things you can do when you already have Arachnoiditis, is continue to get invasive spinal procedures, you will 100% get worse. I know from experience, I got a labor epidural before I knew my diagnosis (took 20 years to get one 😓), and my condition progressed, LOT, and it happened immediately. I was never able to return to work, I was only 34. I had a brand new baby, unplanned cesarean, ended up with postpartum preeclampsia, and I was dealing with a significant increase in my already severe, constant pain. Had I known, I would have NEVER let anyone stuck anything in my spine ever again.

Because these procedures cause neuroinflammation, especially the chemicals in ESI’s, since they’re toxic to your CSF, it will cause your condition to get worse, even if it had plateaued for quite some time like mine had. Every single person I know with Arachnoiditis or Adhesive Arachnoiditis who continued receiving invasive spinal injections or other invasive spinal procedures, ended up getting worse, and all regretted their decision. If a doctor is recommending this while also aware of your Arachnoiditis, does not know what they are talking about, and really need to educate themselves about this disease, it’s acceptable treatments, as well as treatments that are harmful and should be avoided at all costs. Giving this advice to an arcs patient is extremely dangerous, and they could really cause a patient a lot of harm. I would recommend finding a medical pain management doctor instead of an interventional one, as they don’t perform invasive treatments, and therefore won’t try and push them on you, or threaten to withhold medication if you don’t comply with their recommendation. Interventional PM docs are usually anesthesiologists, while medical PM docs focus on medication as well as other non invasive treatments.

You can also test your current doctor by asking if the epidurals steroid injections are FDA approved… they are not, but many shady doctors will just lie and say they are. They’re not approved because they’re dangerous, and especially so if you already have Arachnoiditis.

Please do not get the injections. I don’t want to see someone who’s already suffering so much, have to go through something avoidable like this.. along with getting significantly worse, you’ll regret the decision for the rest of your life, and sadly, you can’t go back.

Just because you didn’t experience any severe complications doesn’t mean that they don’t happen, and quite often actually. I was given an epidural steroid injection. When I was only 16, I shouldn’t have even been offered it, because what I had was so minor. She ended up puncturing the Dura and caused trauma to the layers around my spinal cord, I felt electric lightning bolt of pain, and that pain never stopped. It’s been 25 years of constant, severe debilitating pain. She gave me adhesive arachnoiditis that day, and I lost my entire life. These injections aren’t even curative, they’re just like a very , very risky Band-Aid… And why would you want to risk something so catastrophic, just for a few weeks of pain relief? These injections are not FDI approved for a reason, because the medication is toxic to your CSF, and is very dangerous to use in this way. But doctors continue to administer them, because they are very very lucrative, and in the end, it always comes down to money and greed.

I’m not saying that this exact thing is going to happen to the OP, but I am saying that it is possible. When you tell someone that a procedure is safe, just based on your own experience, you were doing a disservice to that person because everyone’s bodies react differently to medication’s and procedures. That’s what people don’t get when they ask others for advice and that advice is just anecdotal, that does no one any good, because you’re only describing your experience, which has nothing to do with the person asking the question. This person should be given all of the information, all of the risks, including the very severe, very catastrophic ones, and be able to weigh that themselves the risks against the benefit, and make their own medical decision. But just telling them to go for it based on the fact that you did it and you were OK is really terrible advice

Dr. Tennant strongly advises not to have an Epidural when you have Adhesive Arachnoiditis. An Epidural for child birth is often what causes Arachnoiditis.