Tethered cord syndrome

[Hip]

My first thought, and I sure you have had this thought too, is that if ME/CFS patients are born with some sort of minor physical spinal abnormality, as manifested by a sacral dimple, perhaps this could be a predisposing factor to developing ME/CFS later in life.

For example, maybe the spinal abnormality reduces cerebrospinal fluid (CSF) flow, and so when you catch a virus which infects the central nervous system (CNS), perhaps that makes it harder for the immune system to control and clear the virus from the CNS (as immune cells in the CNS are carried along by the CSF).

In addition, we know that spinal cord injury can result in reduced natural killer (NK) cell cytotoxicity, reduced NK number, and upregulation of proinflammatory Toll-like receptors. So if there are some subtle abnormalities in the spinal cord at birth, then perhaps these might cause some subtle weaknesses in the immune response, and/or a tendency to excessive proinflammatory responses, again making it harder to control and clear viruses.

Of course, all pure speculation.


This spinal abnormality may not necessarily be genetic, it may just be something that arises as a result of the conditions of gestation.

So it may not show up in a genetic study, but nevertheless, ME/CFS patients might be predisposed at birth to developing ME/CFS later in life, once they catch a virus which can infect the central nervous system, which may be the immune weak spot in their body.

 

[rel8ted]

We are also finding it *very common* that people with ME who have fusions experience an initial improvement, but then have a worsening of symptoms 4-5 months later, as their tethered cord syndrome symptoms ramp up.

We suspected tetherd cord prior to my ACDF & the symptoms are certainly more pronounced now. I'm pretty concerned about the recovery from that surgery, but have a consult in the fall for it. Also have a sacral dimple and some curvature in my thoracic spine, but it has always been dismissed as "mild."

 

[JenB]

We suspected tetherd cord prior to my ACDF & the symptoms are certainly more pronounced now. I'm pretty concerned about the recovery from that surgery, but have a consult in the fall for it. Also have a sacral dimple and some curvature in my thoracic spine, but it has always been dismissed as "mild."

You should ask Julie Rehmeyer about it. I did both craniocervical fusion and tethered cord release surgeries at the same time, so it's hard for me to distinguish recovery from one v. the other. However, tethered cord release seems to be 10x easier to recover from than a craniocervical fusion.

What are you concerns regarding recovering from surgery?

 

[rel8ted]

What are you concerns regarding recovering from surgery?

Recovery time, how long should I expect to need help with day-to-day things. Are there going to be new challenges & limitations from the tethered cord procedure...all the normal things to worry over. How long do I need to plan to be in the area where my surgeon is? He was not super clear about that with the fusion & he was not super impressed that I was planning on leaving the next day. There are just a lot of unknowns and still can't life much at all since the ACDF. I feel more disabled, not less & I am very afraid of making my situation worse again.

 

[JenB]

Recovery time, how long should I expect to need help with day-to-day things. Are there going to be new challenges & limitations from the tethered cord procedure...all the normal things to worry over. How long do I need to plan to be in the area where my surgeon is? He was not super clear about that with the fusion & he was not super impressed that I was planning on leaving the next day. There are just a lot of unknowns and still can't life much at all since the ACDF. I feel more disabled, not less & I am very afraid of making my situation worse again.

Are you in any of the tethered cord groups on FB? That may help allay some of your fears. I don’t know about ACDF but with skull-C2 fusions, if people have TC, then the fusion runs a high risk of making it worse. Most CCI+TC people really need both surgeries.

I don’t know much about your case or who did your ACDF, but it’s quite likely there are other issues you need to take care of in order to feel as well as you possibly can. At least that is what I am seeing over and over again. People only get well if their surgeon is able to identify and fix everything that needs fixing.

I hope Julie and Jeff can chime in.

 

[JenB]

Emily really sums up something that has become a mantra of mine, but that I never had words for: “When you see the whole cage, you can find its door.”

https://twitter.com/i/web/status/1279191664922419202

 

[thegirlwiththedog]

I had tethered cord surgery 2.5 weeks ago, following craniocervical fusion in December. For the first three months after fusion, I was steadily improving, able to take walks up to 1.5 miles, and the very severe neurological problems (including paralysis, inability to speak and difficulty breathing) I'd had presurgery had vanished. Then I stopped improving and gradually got worse, my walks getting shorter and less frequent. Six weeks ago, I got semi-paralyzed again, and that progressed to the point where I had to spend all my time in a fetal position, only able to get up for about ten minutes at a time.. I wouldn't say I was worse than I was pre-fusion -- at that point, I couldn't be left alone because my episodes were so extreme -- but in certain respects, I was. I got diagnosed with tethered cord, and that led to surgery.

The paralysis vanished instantly and I no longer needed to be in the fetal position. I spent three days in the hospital and two days in the area afterward. I had substantial pain for the first week, controllable with meds, and I slept most of the time. I gradually felt better over the second week, and after two weeks, I felt better than I had in more than a year. It was my husband's birthday, and I made him scones and baked him a cake, and I also hung out with my niece and her two small sons, who happened to be driving through town, for 2.5 hours as the boys ran around in my yard. I did an impressive imitation of a healthy person.

I still have more healing to do -- today I slept most of the day, a sleep that felt healing and restorative. But at this point, I could take care of myself on my own, which hasn't been possible for a long time. And if I hadn't had the tethered cord surgery, I'd still be completely disabled.

Happy to answer any questions if I can be helpful in this decision.

 

[Hip]

For the first three months after fusion, I was steadily improving, able to take walks up to 1.5 miles, and the very severe neurological problems (including paralysis, inability to speak and difficulty breathing) I'd had presurgery had vanished. Then I stopped improving and gradually got worse,

Thanks for your update, @thegirlwiththedog.

Apparently, that's a common pattern in ME/CFS patients who have craniocervical fusion surgery, @JenB has observed. Improvement first, then worsening around the 5 month stage, as a result of tethered cord issues appearing. It's not clear why tethered cord issues only appear several months after the fusion surgery.

 

[JenB]

Recovery time, how long should I expect to need help with day-to-day things. Are there going to be new challenges & limitations from the tethered cord procedure...all the normal things to worry over. How long do I need to plan to be in the area where my surgeon is? He was not super clear about that with the fusion & he was not super impressed that I was planning on leaving the next day. There are just a lot of unknowns and still can't life much at all since the ACDF. I feel more disabled, not less & I am very afraid of making my situation worse again.

Also can I ask: did you definitely rule out CCI and AAI? On what levels did you have the ACDF surgery?

 

[JenB]

Thanks for your update, @thegirlwiththedog.

Apparently, that's a common pattern in ME/CFS patients who have craniocervical fusion surgery, @JenB has observed. Improvement first, then worsening around the 5 month stage, as a result of tethered cord issues appearing. It's not clear why tethered cord issues only appear several months after the fusion surgery.

I think it's because that's generally when the patient starts being more active. The combination of being upright/walking more, and of your posture changing due to the CCF, puts more and more constant tensions on the cord.

At the end of this post, I talk about why walking as my tethered cord became more severe made me bedridden: https://medium.com/@jenbrea/pathology-part-ii-could-pem-be-a-symptom-of-neural-strain-f5be69175e1

 

[thegirlwiththedog]

I think inflammation plays a big role in this. We don't know exactly what goes wrong with the filum. When Dr. Petra Klinge has done histology on the filums of TC patients, she's found inflammatory molecules and mast cells in them. I know in my own case, inflammation has played a big role in my illness overall, and when the paralysis reappeared after my fusion, it happened at a moment of massive bodywide inflammation.

So, my guess is that fusion gets rid of the cushion at the top of the spinal cord -- now it's rigidly fixed. And in my case, I was 3/4" taller after fusion. (My neurosurgeon told me that at most 1/4" came from the actual hardware, etc and the rest is posture, but the taller posture was completely unavailable to me before fusion.) That means that the filum is getting stretched more. And then when we start moving, that stretches it even more. We don't have proof of this, but it makes sense to me that that stretching could trigger inflammation, and the inflammation could make the filum less stretchy still, setting off a vicious cycle.

 

[rel8ted]

Also can I ask: did you definitely rule out CCI and AAI? On what levels did you have the ACDF surgery?

I def do not have CCI/AAI. I used a neurosurgeon who understands EDS, and my original eval was for CCI. It wasn't like I went into this not suspecting tethered cord at all. My ACDF is 4-6. My PT has worked with some of Henderson's patients in our area and she was not super thrilled about the possibility of me having another surgery either. I was aware that there was a FB group, but I don't use FB.

I think inflammation plays a big role in this. We don't know exactly what goes wrong with the filum. When Dr. Petra Klinge has done histology on the filums of TC patients, she's found inflammatory molecules and mast cells in them. I know in my own case, inflammation has played a big role in my illness overall, and when the paralysis reappeared after my fusion, it happened at a moment of massive bodywide inflammation.

That is consistent with my experience. I have mast cell issues and inflammation to go along. Although I am not any taller, people comment a lot about how straight my neck is now.

How is your recovery going and do you have EDS?

 

[JenB]

I def do not have CCI/AAI. I used a neurosurgeon who understands EDS, and my original eval was for CCI. It wasn't like I went into this not suspecting tethered cord at all. My ACDF is 4-6. My PT has worked with some of Henderson's patients in our area and she was not super thrilled about the possibility of me having another surgery either. I was aware that there was a FB group, but I don't use FB.



That is consistent with my experience. I have mast cell issues and inflammation to go along. Although I am not any taller, people comment a lot about how straight my neck is now.

How is your recovery going and do you have EDS?

Re: CCI/AAI, I/we always definitely recommend multiple opinions. Each surgeon uses a different diagnostic process and each surgeon misses a small but significant number of cases. There is a lot of nuance to the sensitivity and specificity of each diagnostic.

Re: recovery time, I hope @thegirlwiththedog can give you a better sense because I don’t remember what I was told. (I recovered from two surgeries at the same time.) My sense is recovery from the surgery itself only takes a few weeks. However, it can have a major (positive) effect on your posture that will require muscle-retraining/physical therapy for some time. I am still working on it!

I’m very glad I got my TC release and can’t imagine living without it. Granted, my case was very severe. However, I wish I had had the surgery at my onset, or even when I was a kid.

 

[RobeAnJa]

With @JenB writing that she wish she had her tethered cord surgery at onset of symtoms I started thinking about it for myself. I’m at onset right now, or just months in, still investigating if I have ME after covid-infection I April. But I do know I have POTS. I also have dizziness, numbness and tingling sensations along with some GI-issues and problems urinating. I also have the sacral dimple and the slight hunched over posture with front head position. I am hypermobile and have experienced some unreal changes in my tissues (joints, skin and muscle) these five months.
Would you start looking for a diagnose and possible surgery of occult tethered cord if you were me?

 

[Rufous McKinney]

. I am hypermobile and have experienced some unreal changes in my tissues (joints, skin and muscle) these five months.

Well, assuming you know you have EDS, its possible the collagen was somehow already weakened ...this sure is a rapid situation, I'm terribly sorry you have to deal with this. Mine has taken many years- and I do wish I had paid more attention to that symptom..maybe I could have slowed the losses.

How are we supposed to know these things happen in bodies long term? I had a stage where I could not stand because the fat and muscle is gone from my heel. My fingerprints are barely there, tips collapsed and wrinkled and weakened.

Can you find somebody who specialises in the EDS?

 

[RobeAnJa]

Well, assuming you know you have EDS, its possible the collagen was somehow already weakened ...this sure is a rapid situation, I'm terribly sorry you have to deal with this.

My collagen probably was weakened, but not enough for me to suspect something like EDS. I had more injuries and troubles than my friends growing up, but I always thought I was just unlucky. I'm sorry you have to deal with this too. Do you have any ideas how to 'slow the losses' for me?

Can you find somebody who specialises in the EDS?

I was at the hospital last week thinking I was going get help with EDS diagnose, but it turned out that it was only for the vascular type of EDS. They didn't think that I have that type, so now I have to start over with my GP for other types of EDS. It seems really hard to find someone who specialises in EDS here in Sweden.

 

[Rufous McKinney]

Do you have any ideas how to 'slow the losses' for me?

I just recently read that glycine might help jump start the collagen cycle- so that might be worth looking into.

I don't know what type of diet you follow, but getting enough and the right protein, if we having trouble burning glucose and fatty acids...might be worthwhile.

I went on a diet for a while- bone broths I made myself...with heavy beef or lamb bones...with marrow preferrably. It helps reduce wind..a chinese traditional medicine term...but wind is involved in the gut lining and permeability...so this strengthens the gut barrier. Maybe helps the brain barrier.

 

[JenB]

@RobeAnJa

Vitamin C: https://me-pedia.org/wiki/Vitamin_C
Copper: https://me-pedia.org/wiki/Copper
Collagen: https://me-pedia.org/wiki/Collagen (I have a “multi-collagen peptide powder” that I put in my coffee and oatmeal...anywhere I can sneak it). Bone broth is also great but can be hard to tolerate if you have major MCAS or histamine issues. (Interestingly, Vitamin C and Copper can help with that, too.)

Peptides are another option. Experimental but a whole other world... (check out my Twitter feed for the recent Medium post by Mallory Tomaro)

Re: seeking a TC diagnosis, this group, but the waitlist is long. Mention that we chatted on PR: https://www.facebook.com/groups/1353765701467793/

 

[Swim15]

@JenB thanks for all this info. I saw your Twitter post and started following.

Is there anywhere (or could you) detail your symptoms and story? I’d be curious if there are differences Or commonalities between people with CFS and these conditions and those without that could be users to help narrow down a source without tons of testing and trying to see these specialists.

I’m gonna start down that road regardless but it seems interesting that a lot of people find relief to some extent from supplements that target metabolics and energy processing which id question was the case if the CFS/ME was triggered by a physical abnormality - even if it’s impacting the brain or spinal cord.

 

[lenora]

I just recently read that glycine might help jump start the collagen cycle- so that might be worth looking into.

I don't know what type of diet you follow, but getting enough and the right protein, if we having trouble burning glucose and fatty acids...might be worthwhile.

I went on a diet for a while- bone broths I made myself...with heavy beef or lamb bones...with marrow preferrably. It helps reduce wind..a chinese traditional medicine term...but wind is involved in the gut lining and permeability...so this strengthens the gut barrier. Maybe helps the brain barrier.

Hello @Rufous.....May I ask where you were able to get the beef or lamb bones? All the supermarkets around here don't even have a butcher any longer....everything comes in prepared to sell. Whoever thought the butcher would lose his job? Now cashiers are going as we're supposed to do it ourselves. Bag boys went years ago.

Also, there are so many types of glycine. Does anyone have the name of a good one? I'm afraid to just choose something. @JenB....what is the name of your collagen powder and do you buy it online or at the grocer's?

The marrow bones are an old-fashioned cure, I can remember my mother boiling them up for broth. Also, the marrow itself is to be eaten, or has that changed? Do you put onion or celery in with yours? @Rufous McKinney
Thanks for the ideas....there are some great ones here. Yours, Lenora.