Paraplegia from Adhesive Arachnoiditis

Posted by Raymond Long @rlcglds, Dec 21, 2021

I had an arachnoid cyst (just one) removed in December 2020. In March 2021 my MRI showed dozens of cyst/scar tissue up and down my spine. I was having trouble controlling my legs. I was admitted right away into the hospital and within a few weeks I was losing the use of my legs. Then the paralysis started moving up my spine to just under my armpits. The surgeon said at this rate I had less than 10-days before I would lose the use of arms as well. I was sent to Salt Lake City for surgery to relieve some of the pressure in my spine. That was in April and today (today is December 21, 2021) I still have the use of my arms except I do have the pain. Nobody has an explanation for why I create scar tissue/lesions so quickly. Just a few weeks after my surgery in April my MRI showed more cyst being formed. I am home but my wife is now my 24×7 caretaker. No treatment to speak of is recommended at this time. My surgeon said he has not seen anything like this in his 30+ years. Any suggestions from this group would be appreciated. Since I am a Viet Nam Vet I am receiving some help from the VA with chairs, bed, drugs, etc. I also have good insurance but at this point, nobody has had a recommendation for any treatment to keep this from moving further up my spine. The surgery was a lamenectomy from T-3 to the lumbar. 8.5 hours or surgery. My surgeon says I am not a candidate for further surgery so if this moves up I do not know what to do. I have faith..so I hold onto that. Any suggestions appreciated. We live in Utah BTW….

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Hi Raymond. I am glad that you reached out on Connect. Thank you for your service. Several of my uncles were also in the service, and my dad was in the Naval Reserves. I am a spine surgery patient for cervical stenosis.

All surgery creates scar tissue and there is physical therapy that can treat scar tissue called Myofascial release. My physical therapist is an expert in this and I had her read your post. She didn't know if MFR could help your situation, but she said it wouldn't hurt to try.

What MFR does is to stretch and reorganize the fascia. That is the filmy stuff you see if you skin a raw chicken, but in life, it is much looser and more liquid. It is a semi solid and converts to a liquid to reorganize itself and back again. When scar tissue forms in the fascia, it prevents its normal ability to slide on itself. You apply a shearing force, for example you press in with a hand against your skin, and push it as if you were kneading bread, and then you stop when it hits the barrier, and you just wait. It may take a few minutes to start changing and the PT can follow the path of most resistance. It takes multiple sessions to work through tight areas. I have had success with MFR for thoracic outlet syndrome in addition to help in recovery from spine and ankle surgery. The fascia can also store a lot of waste products and can release them by stretching with MFR and it helps re-hydrate the tissue. Tight scar tissue is stuck. I have seen white spots on my neck showing dehydrated areas when stretching with MFR on my chest. The fascial paths can be long. That changes after multiple sessions, so it doesn't happen now because the tissue can move again. With a surgical scar on the skin surface, it can connect through the fascia to the surgical area in the body, so it's possible that you can affect an internal area by manipulating the skin surface.. The fascia is like a big net that weaves through and connects everything. Your surgeons may not be familiar with MFR, and in their training they deal with dissecting dead tissues and the fascia there is very stiff and unyielding, so they may not even think about that.

It is possible to tear fascia if you stretch it too aggressively, so that is why this is a gentle approach of just waiting for the release instead of trying to force it to move. It takes patience. Here is our discussion about MFR. The first pages have a lot of links and information. There is a provider search at http://mfrtherapists.com/

Since you are in Utah, you are closer to the Therapy on the Rocks in Sedona, AZ which is the practice of John Barnes, the therapist who created this method of myofasial release therapy. He has other PTs working there too and they can do intensive treatment of everyday for a week or so as an option. You can always call them and ask questions about your situation.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Does this sound like something you want to try?

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