CCI / AAI / chiari / instability /neck evaluation by Dr Gilete

[winterschlaf]

Diagnosed with CCI and AAI by dr Gilete in person. He said I was a very clear case.

He mentioned that he sometimes got people with ME who he did not have anything structurally wrong that he could find, and while I have no reason to doubt him, it's not the same as hearing from someone who has been in and gotten told they don't have it. I also don't know why he chose to tell me this, but from context my guess is that it was to emphasise that structural issues is not a universal root cause for ME.

Presumably also to reassure you that your case was -- in his eyes -- unambiguous, and potentially treatable.

It's a comment which has also created mixed feelings for me (his).

 

[lagarto]

Presumably also to reassure you that your case was -- in his eyes -- unambiguous, and potentially treatable.

It's a comment which has also created mixed feelings for me (his).

That makes sense, both your interpretation and the mixed feelings. I have some myself. On one hand, surely if he has been overdiagnosing he will have gotten some feedback on it, and that can be read as a somewhat context to the comment. On the other hand, if he has been, and is aware of it, this points to him honing his diagnostic skills. Mixed feelings indeed.

 

[Marelica]

I was expecting that kind of response because I have been hypermobile since childhood.
I probably have some variant of EDS, but in Croatia, we do not have a specialist for the EDS disease to examine me.
In a specific private situation, I have been a widow for two years, living alone.
If I find enough stable person to go to Barcelona with me I think I will opt for surgery.
Of course, first I have to check how much it all costs.
This whole situation makes me sad, but that's what it is.
I came up with a diagnosis that is impossible to come by in Croatia.
I hope to be able to organize to go one step further.
Dear @bombsh3ll, thanks for asking

Well some fresh news from Croatia.
I went to the genetic specialist and today she received me. She said that I have EDS all my life, but I didn't know (I am almost 50 now).
Neurosurgeon in Croatia wants to do CT of my cervical spine. I will do CT this friday. Dr Gilete is on hold for me right now.

 

[Beth22!]

Got my evaluation from Dr. Gilete. In terms of CCI and AAI, sadly nothing terribly definitive. He has given both diagnoses as POSSIBLE instead of conclusively giving a positive or negative diagnosis.

Report snippets are attached to this post. I also got some diagnoses regarding lumbar and sacral spine but they seem to be asymptomatic and weren't mentioned anywhere else in the report.

I shall proceed to get an MRV, as I still strongly suspect intercranial hypertension to be the primary cause of my symptoms. I have a constant "heavy head" feeling, constant brain fog which increases in severity whenever I try to concentrate on something, a stiff (but not painful) neck, facial pain, and other signs to indicate IH may be the ultimate culprit. I was also diagnosed with empty sella three years ago, but Dr. G strangely seems to have made no mention of it.

These are the exact head symptoms I've been dealing with for the past 7 years, did you ever find the cause? Or anything to help?

I've been diagnosed with CFS, POTS & Vestibular migraine but no treatments (I've literally tried them all & more) have helped the 24/7 cognitive issues. I feel like if I could just ease the pressure in my head and confusion I could have a bit of a life rather than being housebound. I'm planning to see Dr Gilete in a few months to rule out whether something is being missed.

 

[Bowser]

These are the exact head symptoms I've been dealing with for the past 7 years, did you ever find the cause? Or anything to help?

I've been diagnosed with CFS, POTS & Vestibular migraine but no treatments (I've literally tried them all & more) have helped the 24/7 cognitive issues. I feel like if I could just ease the pressure in my head and confusion I could have a bit of a life rather than being housebound. I'm planning to see Dr Gilete in a few months to rule out whether something is being missed.

I am pursuing surgery for Thoracic Outlet Syndrome. I believe my head pressure symptoms are caused by Thoracic Outlet Syndrome induced craniovascular hyperperfusion phenomenon (TOS CVH). Here is some reading about it:

https://mskneurology.com/myalgic-encephalomyelitis-me-biomechanical/

https://www.researchgate.net/public..._markers_for_occult_craniovascular_congestion

 

[Beth22!]

I am pursuing surgery for Thoracic Outlet Syndrome. I believe my head pressure symptoms are caused by Thoracic Outlet Syndrome induced craniovascular hyperperfusion phenomenon (TOS CVH). Here is some reading about it:

https://mskneurology.com/myalgic-encephalomyelitis-me-biomechanical/

https://www.researchgate.net/public..._markers_for_occult_craniovascular_congestion

Thank you for getting back to me, these links are really interesting!

Do you mind me asking how you were diagnosed with TOS?

 

[Bowser]

Thank you for getting back to me, these links are really interesting!

Do you mind me asking how you were diagnosed with TOS?

TOS-CVH is a nearly unknown phenomenon. I was naturally diagnosed by the author of the only paper on the subject (Kjetil Larsen)

In summary: I tested positive for many of the formal tests for TOS such as Roos test, Morley’s test and Eden’s test. Although I never had much pain before, these tests reproduced the pain characteristic of TOS.

I also experienced an immediate and massive increase in fatigue and head pressure upon exercising the scalene muscles, which are central to TOS. This happened after doing a mere two reps of the exercise, giving me a visceral and real time awareness of the TOS CVH phenomenon. If this provocative symptom increase wasn’t so obvious, I would be a lot more skeptical.

This week was the first time I consulted a surgeon with a written report on my TOS CVH. He said that the report was “very interesting” and that it “challenged the normal way of thinking”. He was still very skeptical, considering that TOS CVH was not an established medical entity, and said he wasn’t inclined to offer surgery, but that he would consider it after excluding some other causes of my fatigue to his satisfaction.

 

[Pyrrhus]

I believe my head pressure symptoms are caused by Thoracic Outlet Syndrome induced craniovascular hyperperfusion phenomenon (TOS CVH). Here is some reading about it:

https://mskneurology.com/myalgic-encephalomyelitis-me-biomechanical/

https://www.researchgate.net/public..._markers_for_occult_craniovascular_congestion

Related discussion:

Vascular Compression: Summary of Discussions
https://forums.phoenixrising.me/threads/vascular-compression-summary-of-discussions.84867/

 

[Husband of]

https://mskneurology.com/myalgic-encephalomyelitis-me-biomechanical/

interesting link from the guy that diagnosed you, not that I could follow it

TOS-CVH is a nearly unknown phenomenon. I was naturally diagnosed by the author of the only paper on the subject (Kjetil Larsen

I also noted this guy did a piece on the mechanical basis for ME before Jeff woods,
https://mskneurology.com/myalgic-encephalomyelitis-me-biomechanical/
but his mechanical basis was not CCI/AAI, and he has written a piece about how he thinks lots of people are being misdiagnosed as CCI or AAI and then getting expensive surgery
https://mskneurology.com/do-you-really-have-atlantoaxial-and-craniocervical-instability/

 

[Marylib]

has written a piece about how he thinks lots of people are being misdiagnosed as CCI or AAI and then getting expensive surgery

His references in that article are a bit behind the times. NICE guidelines have been updated - finally. He could get in touch with the ME research team in Norway if he wanted to. Recently a woman in Norway had a remission from taxol - a treatment for her breast cancer. But true - ME/CFS does tend to be an umbrella diagnosis if the diagnostician doesn't know what they are doing - most don't.

 

[Husband of]

His references in that article are a bit behind the times. NICE guidelines have been updated - finally. He could get in touch with the ME research team in Norway if he wanted to. Recently a woman in Norway had a remission from taxol - a treatment for her breast cancer. But true - ME/CFS does tend to be an umbrella diagnosis if the diagnostician doesn't know what they are doing - most don't.

Not sure if you realised there are two links in my previous post? Just the bit you quoted pertains to the other article from what you are talking about

 

[Marylib]

Sorry @Husband of - I think I have read them all. I am not good at the quote/reply function. Surgery is a serious business - that's all I know. Best place I know for info and experiences is the FB group ME/CFS+ Brain and Spine. Some people leave the group when they no longer have problems - like if they are cured. Otherwise, people go there for help and some get really pissed off if someone discourages surgical evaluations. As for my perspective, it seems you need alot of money and alot of luck. In the US, they find ways to get their medical insurance to pay for it - and you need a sizeable income to afford the medical insurance.

 

[Marylib]

Some also leave the group if they are not cured...so there's that...then the go-fund-me's show up.

 

[Husband of]

regarding diagnosis, I think even with the most recent international consensus criteria, it is very difficult to differentiate MECFS from other conditions. PEM Is a defining difference, but you could easily think you had PEM when you don't. PEM s described as a worsening of symptoms after activity. Well, if you are depressed and you try and do something you are likely to have given your depressed brain confirming feedback as to how pointless and or hopeless your situation is, making you feel worse the next day., and you'd have worse brain fog (of the type depressed people get which is different but could easily be described the same way), more lethargy (could be described as fatigue), etc.

this is why I think I biomarker for pem would be amazing, to differentiate from some other potential illnesses, although I think if someone is just sick with a virus they will also get pem (same type of pem as in mecfs)

 

[Husband of]

Sorry @Husband of - I think I have read them all. I am not good at the quote/reply function. Surgery is a serious business - that's all I know. Best place I know for info and experiences is the FB group ME/CFS+ Brain and Spine. Some people leave the group when they no longer have problems - like if they are cured. Otherwise, people go there for help and some get really pissed off if someone discourages surgical evaluations. As for my perspective, it seems you need alot of money and alot of luck. In the US, they find ways to get their medical insurance to pay for it - and you need a sizeable income to afford the medical insurance.

Given this guy thinks This TOS thing is occurring with some people who have been diagnosed with MECFS, and given the treatment for it is less expensive and dangerous, it sounds like something people should consider concurrently if they think they have AAI or CCI even if they do have one of those things.

 

[JelenaS]

Well some fresh news from Croatia.
I went to the genetic specialist and today she received me. She said that I have EDS all my life, but I didn't know (I am almost 50 now).
Neurosurgeon in Croatia wants to do CT of my cervical spine. I will do CT this friday. Dr Gilete is on hold for me right now.

Hello Marelica! I have recently been diagnosed with ME after 9 years of symptoms. Since I got my diagnosis I have been reading day and night and finally found something I could catch onto. In 2013. I had a whiplash where I have injured my neck, but never visited a doctor. After that the pain was coming back sometimes, but I ignored it. The symptoms of ME started some months, not close enough so I could attribute it to the injury I had. Anyway, with diagnosed ME and the stories of Jennifer Brea and others I connected the dots and I suspect I have craniocervical instability. Since you are from Croatia, a neighbour country (I am from Serbia) and looks like you have already been through similar journey, I would really appreciate if you could contact me and help me out.

 

[Zebra]

TOS-CVH is a nearly unknown phenomenon. I was naturally diagnosed by the author of the only paper on the subject (Kjetil Larsen)

This is remarkable information @Bowser.

Did you already create a thread on this condition?

If not, and you feel up to it, would you consider starting a new thread to reach a wider audience?

It seems like you have a wealth of knowledge on the condition and a very unique experience of getting diagnosed!

Please forgive me if such a thread already exists.