Spinal CSF leaks

@wcf Hello Craig, and welcome to Connect. I am a spine surgery patient, and I wanted to share with you this link to a discussion and information about CSF leaks.
https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/cerebral-spinal-fluid-leaks-are-commonly-misdiagnosed/
What symptoms have you been experiencing?

Thank you Jennifer for the link, i'll check it out.
Recent MRI reveals a "prior L4-L5 level laminectomy. A CSF intensity collection is identified within the laminectomy
tract which represents a pseudomeningocele". The symptoms I have are severe low back pain mostly left of center which increases with walking and bending, worsening double vision and left ear pusitile tinintus, dull headache.
Doctors here locally are not concernned since no negative findings from lower limb EMG studies. They say just "go see
pain management". Strangely, some Neurologists have never seen a L4-L5 CSF leak. ???

Google Tennant Foundation and sign up for their bulletin. Hopefully you have a dr. open to other possibilities. Pain Mgmt too busy, and,,at least on east coast closed to to learning something outside their source. But who knows? Just maybe you will find someone. Oh. You can also get some info On YouTube, on Dr. Forest Tennant. He does little info blurbs (non-monetary focused) about five minute long on Arachnoiditis.

Best of,lick in your seeking, and keep moqving - Judith

@wcf Craig, thanks for posting your report findings which do clearly state that there is a leak of cerebral spinal fluid. I looked up the term, "pseudomeningocele" and that is what it means. Is it your spine surgeon who is dismissive of these results? Would you consider getting another opinion? This must be an awful thing to live with and there is a neurologist at Mayo who treats this condition.

From the link I sent in the prior post, there is a video of Dr. Jeremy Cutsforth who treats CSF leaks. Here is his profile. https://www.mayoclinic.org/biographies/cutsforth-gregory-jeremy-k-m-d/bio-20213586

If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Has anyone else had surgery for a CSF leak in the spine? I had surgery on 9/28/2020 at Mayo for a ventral CSF leak. They did three lamenectomies, discectomy and a dural repair at thoracic 4. As far as I can tell, my leak is repaired but I have radiating nerve pain in my back left rib cage. I have found nothing that helps it. Wondering if anyone else has experienced this ???

@kygirl58 Hello, I wanted to welcome you to Connect. I'm a cervical spine surgery patient. I was wondering if the pain you have is a risk and complication from your surgery at T4? Did you have nerve impingement before your surgery in that area that was to be decompressed by the surgery?

I think it is a result of the surgery because the pain started a couple of months after surgery. I really need to go back to Mayo for a check up and to talk to my doctors about it but my insurance is a pain to get to approve anything there.
Thanks for your reply.

@kygirl58 That is a very important clue that your pain started a couple months after your spine surgery. If the pain started with the surgery and was continuous since then, I would think it was a side effect of the surgery. At 6 to 8 weeks post surgery, the incision has healed and formed scar tissue, not just on the skin, but internally in the connective tissue known as fascia. It tends to tighten up and create tension in the body and it can cause pressure on something else like a nerve.

There is a physical therapy technique called myofascial release that can stretch out and "release" the tight fascia. My suggestion is to contact your surgeon on the patient portal and ask for a physical therapy script for treatment of the pain. Insurance doesn't always cover it if it is stated as being myofascial release, but the PT's know how to code this as manual therapy units and other physical "re-education". You wouldn't need to make a return trip for an exam. You may want to call your insurance and find out how much PT they would cover.

Here is our discussion on myofascial release or "MFR". The beginning pages have lots of links to information. I have done this MFR for years for thoracic outlet syndrome (TOS) , and after my cervical spine surgery. It helps me a lot, and you may want to try it. There is a provider search at http://mfrtherapists.com/

Here is the discussion:
Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

It's likely that at this early stage, your surgeon would put limits on what a physical therapist could do. Did you have a fusion or artificial disc replacement? Because a fusion takes a long time to heal and begin to fuse (perhaps 3 months or more), you may need to wait to do PT until after that time has passed. My PT would not touch any part of my neck until I was fused, and the pain from the tightness was driving me crazy. I did use my hands to gently pull on the skin downward with out moving anything in my neck which helped relieve the pressure. You probably have orders for no twisting, bending, lifting, etc. If a PT can just stretch on the skin surface without any force put on your spine, your doctor may accept that. I recommend reading through the MFR discussion and watching videos there of John Barnes treating a patient and explaining the process. If you have questions about it, please ask. I would be happy to answer. Once you understand this, you can discuss it with your surgeon. Some doctors are familiar with this, and some are not. My spine surgeon at Mayo has been very gracious in approving scripts for my PT for treatment of my TOS, and after spine surgery. (Mayo did evaluate my TOS when I had my spine consult.)

Have you heard of myofascial release before?

I have been going to PT for dry needling to help the muscle spasms that may be causing a nerve to be trapped. It helps some but enough. I will talk to him about the MFR. Most PTs won’t do anything that manipulates my spine because I have a fragile spine. As a result of the CSF leak, I have Superficial Siderosis which is from my leak bleeding. The iron deposits from my blood are eroding my brain and the nerves in my spine. Dr Atkinson said he did not know what the future held for my spine because of so much iron deposits. I guess I am a complicated case! 🤷‍♀️

@kygirl58 Well that is encouraging that the dry needling helps a little bit so that tells you how much of the issue might be related to muscle spasms pulling on the spine. Dry needling discharges the electricity that is holding the muscle in spasm at least temporarily. That would not address the scar tissue causing tightness. The training for MFR is very specific with the John Barnes methods, so you may need to seek out a different therapist for that. It's is kind of like pushing on dough when you make bread, except when you feel the resistance of the barrier, you stop and hold the pressure against it until the fascia can unwind itself, and release and remodel. My PT can feel the pathways of tightness through my body with her hands, and has trained me to be aware of that as well, so she can feel exactly where it is tight and when and where a release happens.

Would you let me know what your doctor thinks about MFR?