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

[taniaaust1]

You will never get better laying on a couch or in bed all day , that I’m sure of .

It was aggressive rest therapy which lead into a remission for me for several years till I caught another virus (I had no other treatment which lead to the remission), I had 2-3 years remission (I'd previously been very severe with the ME at one point I was completely bedbound for 9mths).

It should be underestimated just how much good quality resting can actually help some ME/CFS patients. Exercise never helped me with this illness. It often is not good to be trying to add in exercise when someone is already severely struggling with low energy to the point of struggling with simple tasks and other symptoms.

And lastly low intensity strength training which is the most important of all IMO, it will balance nervous system which will make viruses go dormant .

Following these things has completely stopped my muscle fasiculations, motor function is much better , brain fog better , my vision is normal again , my muscle spasms have greatly reduced , my energy is pretty good and my breathing isn’t labored or shallow anymore .

One low intensity strength training session with a physio who was supposively had worked with a couple of others with ME/CFS.. left me injured and in pain (it was like I actually tore something in my abdomen with one of the half sit ups/sit ups. I injured myself on the very first one of those) and left me crashing after she then had me do exercises with my hands and arms. She had me sit on the ground and cut some herbs (parsely/mint) and flowers off of some plants for like a rehab session (this is after injured by a half sit up)

I was left not even able to feed myself properly after this session, as I THEN due to the post exertional effects on my hands/arms, I could not even hold fork to my mouth without severe spasms and shaking so my food was going everywhere (spasms were then sending the food I finally got onto my fork up to a metre away from me). I was crashed for days and needing even more care. It took away my ability to be able to feed myself with a fork.

What use is any kind of exercise session even the most mild one when it leaves one for several days afterwards not then be able to do the things one usually does.......

sorry I've gone off topic but I hate it when someone posts saying rest wont help anyone when it was that which lead to my past remission, pushing to do anything more then what I feel okay to do and do now tends to worsen my state. Adding more activities in is disasterous in my case, the best thing for me with ME has always been more rest.

 

[Daffodil]

If I were to try to have prior MRI's reviewed to see if there was any indication of CCI, could anyone help provide me information no how to get that done? One of the best doctors I have ever seen recently emailed me and though it would not be a bad idea to rule it out.

I think you can call dr. Bolognese's office in NYC and make arrangements to send your MRI there for review. these doctors have preferences for what kinds of imaging they want but I think Bolognese might accept a regular MRI. If you can get an Upright MRI with flexion extension rotation views, you could have Dr. Gilete in Spain review the MRI for a fee. Can you get more imaging done?

 

[JenB]

Decompression surgery is generally shorthand for the surgery used to treat Chiari malformation. CCI surgery is a fusion.

BOTH surgeries carry risk of death. Both surgeries can result in lifelong complications. Both surgeries have helped countless people recover function.

This is so sad to hear. It sounds like at least initial surgery was not proximate cause (?). Honestly, this is part of the reason I have been so public. The thought of strangers speculating about my health if something happened to me was $&@$*! We can’t know unless someone tells us.

 

[Daffodil]

Decompression surgery is generally shorthand for the surgery used to treat Chiari malformation. CCI surgery is a fusion.

BOTH surgeries carry risk of death. Both surgeries have helped countless people recover function,

This is so sad to hear. It sounds like at least initial surgery was not proximate cause (?). Honestly, this is part of the reason I have been so public. The thought of strangers speculating about my health if something happened to me was $&@$*! We can’t know unless someone tells us.

Hi Jen. Do you know others with ME/CFS (especially post-viral ME/CFS) who have greatly approved or recovered with cervical surgery?
Thank you

 

[JenB]

Besides me and Jeff? No. As far as I know Jeff, myself, and Mattie are the first to have this specific surgery for craniocervical instability.

There is this case study of patients with cervical stenosis, which is a different diagnosis and surgery: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5796598/

 

[Daffodil]

Besides me and Jeff? No. As far as I know Jeff, myself, and Mattie are the first to have this specific surgery for craniocervical instability.

There is this case study of patients with cervical stenosis, which is a different diagnosis and surgery: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5796598/

thank you, yes i have seen that paper....can i ask if mattie improved also?

another issue is, i am having trouble understanding exactly what these few specialists (henderson, bolongese gilete etc) do that is so different than other surgeons? anyone can do cervical fusions....?

 

[mattie]

.can i ask if mattie improved also?

Better ask Mattie
I am posting updates in a members only thread for now. After healing has completed I will post outcome in the public thread.

 

[Daffodil]

Better ask Mattie
I am posting updates in a members only thread for now. After healing has completed I will post outcome in the public thread.

bless you!!

 

[Daffodil]

@JenB jen! i forgot to ask about your brain fog! come back lol

 

[Sparrowhawk]

@Daffodil this was Jen's latest post on Medium - FYI https://medium.com/@jenbrea/health-update-2-my-pots-is-in-remission-8fceff9c1744

Also, @jeff_w posted this to Twitter:
@[B]jeff_says_that[/B]
That number has now grown to 11 people with ME, from Phoenix Rising, being diagnosed with CCI/AAI.
https://twitter.com/jeff_says_that

So that's diagnosed, but not necessarily those who have moved to the step of surgery.

 

[Daffodil]

@Daffodil this was Jen's latest post on Medium - FYI https://medium.com/@jenbrea/health-update-2-my-pots-is-in-remission-8fceff9c1744

Also, @jeff_w posted this to Twitter:
@[B]jeff_says_that[/B]
That number has now grown to 11 people with ME, from Phoenix Rising, being diagnosed with CCI/AAI.
https://twitter.com/jeff_says_that

So that's diagnosed, but not necessarily those who have moved to the step of surgery.

thanks! yes a lot of us have CCI. i have read jen's twitter and have been in a bit of a better mood since lol. but she doesnt mention her brain fog which is, for me, the main thing
xo

 

[frozenborderline]

Re: all the speculation about jens health or improvement or lack thereof, I think it verges on rude. I know she’s been public about her diagnoses and treatment, but that doesn’t mean people should pry beyond what she’s already made available as far as info. As far as the surgery for cci goes, there’s plenty of literature and anecdotes on the surgery itself , but as far as fusion surgery as a treatment for me/cfs, there are only three people who’ve been in that position. So it’s experimental and one has to go into it with that attitude. You’re not going to get that much more info from seeing how jens surgery turns out, it’s a small sample size. So I personally think just better to focus on the theory behind it and your own case.

 

[frozenborderline]

Basically, nobody should be basing whether they have surgery on jens outcome to surgery, that would be ridiculous. Therefore there’s no need to ask for more details, when she’s already provided a lot.

 

[Daffodil]

Basically, nobody should be basing whether they have surgery on jens outcome to surgery, that would be ridiculous. Therefore there’s no need to ask for more details, when she’s already provided a lot.

why not? its not unreasonable to base one's decision on how others did after the surgery - especially if they are severely ill

 

[frozenborderline]

why not? its not unreasonable to base one's decision on how others did after the surgery - especially if they are severely ill

It depends how much you weigh it as a factor in your decision. It’s not unreasonable to take it into account to a small extent, but it shouldn’t seriously affect your decision. Small sample size case studies, such as , say, three people, could be valuable information that warrants being looked into further, but they would never justify a treatment in a clinical setting to most doctors or researchers or regulatory agencies, because a small sample size doesn’t give you nearly enough information to go on.

Jeff’s story may contribute indirectly to me getting fusion surgery, because it made me consider the possibility of cci and diagnosis, but I would never base my treatment decision significantly on one persons outcome. Or three. Of course, you may do whatever you like. But it’s not a good idea and also contributes to this critical idea from some quarters that people are just rushing out to get fusion surgeries because of some supposed “hype” or mania from Jeff’s story and jens. Both of them have been clear that they just want people to get properly diagnosed, and I don’t think either of them have pushed surgery, or suggested that it is a guaranteed cure for ME.

 

[frozenborderline]

It would not be unreasonable if you were tracking how seventy people with severe ME did after surgery, but three—yes, that’s unreasonable. And there will be no long term data on this by the time you are making your decision, so probably better to just make it based on what your neurosurgeon says and on tempered expectations. For example if you just want to get info on how people’s fusions helped with specific neurological symptoms that aren’t ME-related, but are common in cci, then there’s a lot of info out there. And it’s probably more reasonable to base decisions on anecdotes if there are more of them.

 

[Remi]

I'm new in this thread and forgive my brainfog. But I thought there were 20 dx in Jan 2019 as per this thread: https://forums.phoenixrising.me/thr...ve-for-cci-aai-there-must-be-many-more.62893/ ?

 

[frozenborderline]

hi debored13 so will you be sending your scans to dr. B? i am curious to see what diagnoses others get. i have to go to buffalo for a 3T MRI it looks like..we have 2 or 3 machines in Toronto but they are restricting what they can be used for ! ugh canada

I sent my scans to bolognese awhile ago and he told me to do five sessions of traction w a pt, takennotes on how I feel, then schedul an appointment with him. I sent in the notes from the pt a couple days ago and waiting to schedule an appointment.

 

[Daffodil]

I sent my scans to bolognese awhile ago and he told me to do five sessions of traction w a pt, takennotes on how I feel, then schedul an appointment with him. I sent in the notes from the pt a couple days ago and waiting to schedule an appointment.

oh wow. thanks so much for letting me know. he actually told you to do PT! so they are OK with those but not chiros it seems..

 

[frozenborderline]

oh wow. thanks so much for letting me know. he actually told you to do PT! so they are OK with those but not chiros it seems..

He told me to do traction only with the pt. Pts are very different than chiropractors. Traction is part of his diagnostic process