Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[Daffodil]

Doesn’t your health insurance pay for PT?

not really. they have some gov't run places but they are horrible. i certainly wouldnt go there for something like this which isnt commonly treated here.

there is an EDS clinic where they might have PT at one of the hospitals now that you mention it.....i will find out if people without actual EDS are eligible it also may have a year wait list lol

thanks for the suggestion though...i am gonna check it out!

 

[JES]

You shouldn’t go higher than that at home. I didn’t experience dramatic improvement until 30 pounds. DO NOT DO THAT AT HOME.

Thanks for the heads up. I haven't pursued home traction further due to the slight worsening in brain inflammation symptoms I experienced, which lasted for couple of days after traction sessions.

On a somewhat related note, I'd be interested to know if there has been any new cases with ME/CFS documenting their success (or not success) post CCI operation. It seems to me there are a lot of diagnoses made according to the poll, but the number of cases where surgery has been performed on ME/CFS patients seems yet scarce.

 

[Sushi]

not really. they have some gov't run places but they are horrible. i certainly wouldnt go there for something like this which isnt commonly treated here.

there is an EDS clinic where they might have PT at one of the hospitals now that you mention it.....i will find out if people without actual EDS are eligible it also may have a year wait list lol

thanks for the suggestion though...i am gonna check it out!

I asked because Medicare in the States pays for PT at any recognized facility.

 

[Daffodil]

I asked because Medicare in the States pays for PT at any recognized facility.

yea.... here....i would not go to a govt-covered place unless i had literally no other choice. i would rather just get some instructions from books or DVD's. my mom went to a free place and said they made her shoulder worse than before. its a room full of people and one person walks around barely paying attention.

some people in the group are strongly recommending someone in SC who works with Dr. Patel. she has EDS herself. I emailed her, she is very empathetic. Told me to email in a month. Maybe skype is better anyway since it isnt easy for me to travel even within the city....

the PT at the EDS Clinic...i still have to look into her but I am told she might not have a lot of experience with structural issues. Not sure why....

i asked the regenexx doc why they injected my facet joints if i had no pain. he said that there is some arthritis despite it not being in the MRi report and that this does sometimes result in significant improvements.


xo

 

[Rufous McKinney]

yea.... here....i would not go to a govt-covered place unless i had literally no other choice

I just had an excellent first appointment at a local PT place which is covered by Medicare.

She was not very familiar with ME/SEID (I did not ever say CFS)....and the focus was on the my weak neck, but she seemed to understand the concept of Exercise Harms Us.

She has one other patient with ME. She indicated she'd been "reading about it" and had some awareness of Stanford.

So all that was: encouraging.

I asked if she had ever met or worked with folks with EDS....she said no...but she was a gymnast and apparently, met some...(the flexibility some admire, which in fact is not so great perhaps later).

 

[Sushi]

.i would not go to a govt-covered place unless i had literally no other choice. i would rather just get some instructions from books or DVD's. my mom went to a free place and said they made her shoulder worse than before. its a room full of people and one person walks around barely paying attention.

I don’t understand how it works in Canada. In the States, the government doesn’t provide medical care except through the military but government Medicare covers most private doctors and hospitals. I think that every PT in my city will take Medicare. So, it is different in Canada?

PT through a book or video instruction could be very dangerous. A well-trained PT has had many years of education.

 

[Daffodil]

I just had an excellent first appointment at a local PT place which is covered by Medicare.

She was not very familiar with ME/SEID (I did not ever say CFS)....and the focus was on the my weak neck, but she seemed to understand the concept of Exercise Harms Us.

She has one other patient with ME. She indicated she'd been "reading about it" and had some awareness of Stanford.

So all that was: encouraging.

I asked if she had ever met or worked with folks with EDS....she said no...but she was a gymnast and apparently, met some...(the flexibility some admire, which in fact is not so great perhaps later).

i am in canada :-/

 

[Daffodil]

I don’t understand how it works in Canada. In the States, the government doesn’t provide medical care except through the military but government Medicare covers most private doctors and hospitals. I think that every PT in my city will take Medicare. So, it is different in Canada?

PT through a book or video instruction could be very dangerous. A well-trained PT has had many years of education.

you are right....and this is a pretty fragile area. so i guess i will choose a PT and pay for a few sessions....I am not sure what else I can do. I wonder if skype is OK...maybe in person is important, I dont know. I wish i werent always falling asleep; I cant even think. I read messages, then answer, and then cannot act on anything. Its very frustrating.

So in Canada, the provincial govt provides health care. Everyone has a health card and they take it to the doctors. This works for MD's. In some cases, optometrists and dentists are covered but not in all cases. The health care providers bill the province after they see you.

If you have a prescription for physiotherapy and a health card, you can find places that will take you as a patient. Here, the PT gets paid less than they would if they were in private practice so typically, the care is not very good. The PT will spend very little time with the patient and will certainly not go out of their way to learn new techniques or take any interest. At least that has been my experience. In order to make a decent salary, it is set up like an assembly line; they see as many patients as possible in a short period of time. But it is free for the patient.

When you bill the gov't, there is a limit to how much you can bill for....there is a cap. That is why so many better doctors leave Canada and go to the USA where it is much more lucrative.

 

[Sushi]

I wonder if skype is OK...maybe in person is important,

How could you do PT by Skype? It is totally hands on.

 

[Rufous McKinney]

How could you do PT by Skype? It is totally hands on.

The hands-on part of my appointment was very nice...but the other part is: me having to do the lift...

so: one could Partially skype it....

I tried to find a skyping counselor-type and didn't succeed. But didn't persevere.

 

[Jyoti]

I agree, hands on with someone who has some knowledge of the neck's anatomy and some experience working with it and/or EDS seems super important. I decided to pay for a few sessions with a highly recommended PT and it has been really well worth it. In receiving skillful manual traction I got the chance to see if it really made a difference. In my case, it did, which then led me to a supine traction device which is helping on an ongoing basis. It is not a panacea, but it is a part of managing life. I learned some exercises from her as well to stabilize as much as possible and because I saw her in person, I had my form checked. I know you are trying to juggle various choices, @Daffodil, and you can't have everything. Something's got to give. If your PICL procedure is already scheduled then maybe that has to be the priority. But I do think that PT and traction are important to try at some point in your journey. Unless, of course, the PICL nails it! Which we can hope.

 

[Daffodil]

@Jyoti @Sushi ur right...one would need a few sessions in person at least. ugh. i guess i will contact the PT who works out of the pediatric EDS clinic here..someone recommended her. i have literally no energy...its like i am 1/2 asleep all the time. i wonder if it is because i am taking minocycline instead of tetralyasl now ...they stopped letting it across the border. i cant tweak my treatment by seeing KDM....gotta save money for neck

@Jyoti i think i may have asked you this before but do you plan on pursuing surgery eventually?

 

[JenB]

I have similar concerns about the possibility of unnecessary (and potentially dangerous and potentially life-limiting) surgeries in many patients. I am an EDS patient who developed CFS/ME/POTS over 12 years ago and I was told to have CCI surgery. I walked away from it when they also recommended it to our 9 year old son.

My son and I got sick after viruses, so I didn't think the problem was strictly anatomical -- I wanted to dig deeper. Our issues stemmed from high intracranial pressure that was easily controlled with Diamox (and we didn't end up needing it long-term). Mind you, my MRI looked horrible -- my neck and spine looked like it had gotten run over by a truck! In fact, it still looks that way, but I have no pain or symptoms (sometimes looking at MRI's can be misleading).

This was over 12 years ago and I've been able to keep in touch with many patients who chose to have CCI surgery. Many of those need ongoing fusions down their spines because the discs below the fusions take on more pressure. The fusions themselves can be disabling -- and most of them still feel sick.

I have no doubt that Jen is doing much better (we all celebrate that!), but I have a strong suspicion CCI wasn't the cause of CFS/ME, but a later consequence (one of the proverbial dominoes, if you will). More work is needed in her case (in most of us, actually) to determine the underlying cause of that domino cascade.

Ultimately, I walked away from many suggested surgeries: CCI, Chiari surgery, a brain shunt, and gallbladder surgery to name a few. I have been a fully recovered patient for years now and I strongly believe that avoiding these procedures worked strongly in my favor.

I know how tempting it to want an immediate fix! But because these surgeries are not reversible and are not low-risk, I think we can all benefit by taking the proverbial deep breath and staying strongly in the science.

Dr. D

All my ME symptoms were gone while under traction, came back immediately when traction was released, and were again gone immediately when I woke up from surgery. I have no other explanation of what I experienced *repeatedly* every time my head was lifted other than it was caused by my head being lifted. All this was confirmed objectively by fluroscopy and intracranial presure bolt monitoring. When I woke up from surgery, my heart rate was 62 supine, 72 standing after 7 years of POTS.

I do not think it’s a question of whether CCI “caused” my ME. CCI caused all of my ME symptoms This question is what caused my CCI?

There are no quick fixes. These are brutal surgeries. Coming back from them + years of being mostly homebound and bedridden is no joke. And I still have MCAS, although thankfully, that is much better since having surgery.

I do not have EDS so my risk of further surgery is a bit different (we think).

It is amazing you were able to avoid surgery. Everyone should if they can.

 

[jeff_w]

Hi @DrDiana

My son and I got sick after viruses, so I didn't think the problem was strictly anatomical -- I wanted to dig deeper.

Both Jen and I also got sick after viruses. In our cases, the problem was anatomical. That our illness began with a virus is not inconsistent with an anatomical problem.

As for digging deeper into the cause of ME/CFS, that is a very important step in solving the puzzle -- so great that you did so. I also did as deep a dive as possible, and I found my underlying cause of CCI. And now, like you, I no longer have ME/CFS.

Our issues stemmed from high intracranial pressure that was easily controlled with Diamox (and we didn't end up needing it long-term).

The neurosurgeon that performed my surgery will recommend a trial of Diamox for many of his patients with intracranial hypertension, in case they find relief, in an effort to avoid operating on them. A good neurosurgeon will try conservative measures first, before deciding to operate. Diamox is one of several conservative measures. The question here is: Will a conservative measure, such as Diamox, provide a fix? If a conservative measure such as Diamox does not fix the problem, and if a patient has brainstem compression, then a fusion may be warranted.

There is no "Diamox vs Fusion" dichotomy here. That is an overly-simplistic framing of quite complex situation, in my opinion. A fusion is a necessary method of correcting the problem for people who don't respond to conservative measures. My neurosurgeon will try conservative measures first, as you can see from his Diamox trials. It's great that you responded to a conservative measure! That is the ideal situation.

Many patients aren't as fortunate as you were to respond to Diamox or to another conservative measure. Many do not find relief from Diamox alone, as you and your son both did. (And by the way, I'm very happy for you both! Words can't do justice.)

I have no doubt that Jen is doing much better (we all celebrate that!), but I have a strong suspicion CCI wasn't the cause of CFS/ME, but a later consequence (one of the proverbial dominoes, if you will).

I don't see how you could possibly reach the conclusion that CCI wasn't the cause of ME/CFS for Jen -- or for me. Eliminating our CCI eliminated our ME/CFS.

Similarly, in your own case, eliminating intracranial hypertension eliminated your ME/CFS. I would not make the sweeping, dismissive claim about your own experience that you have chosen to make about ours. Specifically, I would not say that intracranial hypertension wasn't actually the cause of your ME/CFS. I would feel uncomfortable and even irresponsible making a claim that is so contrary to reality.

 

[Rlman]

@DrDiana
Are the symptoms of intracranial hypertension the same as those of CCI/cranial settling?
Is there any risk of trying Diamox? In the case one has normal CFS pressure?
What were your symptoms?
Thanks

 

[Jyoti]

@Jyoti i think i may have asked you this before but do you plan on pursuing surgery eventually?

I don't know....the diagnostic wheels run slow, and I get older every month I wait. I am not inclined toward surgery, but have yet to receive Dr. B's opinion, which would be critical information for me. I am particularly interested in what you are pursuing, @Daffodil, because I am certain that much of my illness arises from CCI or AAI and the requisitely loose ligaments, and yet surgery does not strike me as the right path--for me. If there is an alternative that looks like it can deliver....

Threading our individual and collective ways through the forests of information and misinformation, knowns and unknowns, would be daunting with a good brain. Thus, I offer my gratitude to you, @Daffodil, to @JenB, @jeff_w, @StarChild56 and all the countless others who are exploring--a bit ahead of me on this path--and reporting back to my great benefit.

 

[Bowser]

I understand empty sella syndrome is related to IIH. I've been diagnosed with "partial empty sella" by a radiologist, but never with IIH.

Is there any relation between IIH/empty sella and CCI?

 

[JenB]

I understand empty sella syndrome is related to IIH. I've been diagnosed with "partial empty sella" by a radiologist, but never with IIH.

Is there any relation between IIH/empty sella and CCI?

yes inasmuch as CCI can be one of many causes of intracranial hypertension. It was for me:

https://medium.com/@jenbrea/path-to-diagnosis-part-i-an-empty-sella-9b984a5ac6ca

https://link.medium.com/BRrdLoPsr1

 

[Bowser]

Has the CCI subset of CFS patients been helped by any supplements? Has anyone tracked what supplements have helped you even a little?

Something that could partially reduce symptoms until the big decisions like surgery would be a great help.

 

[Daffodil]

@Jyoti thank you well a new development for me is a new surgeon telling me, after viewing my images, that he feels i might not have AAI but that mid cervical instability may be causing my issues. This would mean ligament strengthening may not help as much as I was hoping. I have disc degeneration and there are no regenerative techniques to regrow cartilage - meaning fusion would be the only option. Because it is 3 levels (if I remember correctly), disc replacements would not be advised.

I am still going for the stem cell procedure designed to strengthen the important alar and transverse ligaments, then I will eventually try to get a 3rd opinion from another surgeon. Although I do not see how I can ever afford surgery, it would be good to know what I am dealing with!

The surgeon I spoke to was shocked that I had not done any physiotherapy so I plan to start that but since leaving the house and travelling downtown would be very difficult, I may try to Skype with a PT or, if too expensive, will try a DVD and modify things as best I can to not stress my ligaments.

To try to regain disc height, I am sure most PT's will want to do traction which I think is contraindicated after my procedure.....

They are working on a special gel at Duke Univ. that is supposed to help stem cells stay in place when they are injected into the discs, which would help regrow them...but they are not close to human trials yet.

xo