Tracking CCI / AAI MRI & Treatment outcomes

I have been tested for CCI / AAI / Chiari / Spinal Stenosis with specific scans and tested

  • Positive

    Votes: 49 75.4%
  • Negative

    Votes: 16 24.6%

  • Total voters
    65
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I am already in touch with her. She told me that she doesn’t necessarily identify as an ME patient but as hEDS/ severe POTS. but she did have PEM (she said worse after every activity). So she sounds like an ME patient. She says that since surgery she is less tired, less brain fog, can tolerate light and sound and social activity. So she does seem to be doing quite a bit better, if not fully recovered.
She was diagnosed with ME (CCC) by an ME specialist and identified as an ME patient before being diagnosed with POTS and later cervical instability (and recently hEDS). I Know her from the ME community in Norway.

This is a public forum, and I don’t want to expose information about her that she has not shared on her Facebook profile or in public groups. But I think she has been open about not doing well this summer (although, as she writes on her profile, the past week she’s fortunately better) and about getting a personal assistant to help with daily needs. Generally speaking; even though some symptoms improve, other symptoms can worsen or persist so that the functional level is (mainly) unchanged.
 

Silencio

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@tornerose It’s hard to discuss someone else’s story, since people may give a more positive slant one week and not the next.
Good to know on ICC. I have noticed that sometimes when people get an EDS diagnosis of some sort, they might abandon their ME diagnosis, feeling it was wrong.
 
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@Silencio I disagree with your conclusion about EDS/ME/CFS diagnosis. I was diagnosed with CFS and a few years later EDS. This was years ago, long before this recent discussion of CCI. Anyway I do not think having EDS means you don’t have mecfs. And I don’t think they are the same thing. There definitely needs to be more research into all this. As is everything is getting very blurry and confusing.
 

Silencio

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@Silencio Anyway I do not think having EDS means you don’t have mecfs. And I don’t think they are the same thing. There definitely needs to be more research into all this.
Oh well that is good to know. It was just something I had noticed from talking to some EDS patients. Yes.. research needed. It is getting confusing and hard to know what to think.. I think this could be a situation where every individual is different and there won’t be clear answers..
 
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@Yuno Very interesting. Do you know anything about symptoms and measurements of this unfortunate guy?
Yes, she commented on this, but I don’t recall a 100 % and I don’t want to set off any rumors, which might later prove to be wrong.
It’s really easiest to ask her yourself. They are very open about this.
They are quite swamped at the moment, so I doubt she would answer an email regarding this topic.
But anyone who has an appointment in person or with Skype can very well ask about how many ME /CCI patients they have already operated on and what the respective outcomes are.
 
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Thank you everyone for the helpful responses! So far the answers I'm seeing are indicating only one possible case with no significant improvement: the male patient that @Yuno heard about from Dr. Gilete's assistant, who was "only moderate". I would describe myself as "only moderate" and yet I am unable to continue my career, and feel that I'm pretty useless in my present condition. It would, of course be helpful to know the details of that patients' presentation and if he had experienced positive effects from traction. Does Dr. Gilete perform invasive traction before proceeding with fusion? Another interesting question is, what is the longest period an ME/CFS patient has been ill and recovered after CC fusion?

I was looking at a slideshow from Dr. Henderson called "Five-Year Follow Up of Craniocervical Fusions". The patients were largely EDS patients I believe. None were identified as ME/CFS patients. Only 30% reported improvement of fatigue post-op (see slide at 21 min). The symptoms that did improve in most patients are those one would specifically associate with brainstem compression: vertigo, headaches, balance issues, neck pain, muscular weakness and such. Also, few patients resumed work or school post-op. They attributed their inability to work to residual symptoms from connective tissue disorders such as musculoskeletal pain, POTS, GI disorders, and fatigue: the precise symptoms that many of us would hope to have resolved! Yet, those ME/CFS patients who have to date had the operation and improved are reporting resolution of these symptoms. I'm wondering why the discrepancy.
As far as I know DR. Gilete does not usually perform invasive traction trials before surgery, nor does he ask all of his patients to try traction.
I asked whether I could do an invasive traction trial and he said yes, but a negative response wouldn’t mean 100% negative for the surgery.
 

Malea

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I asked whether I could do an invasive traction trial and he said yes, but a negative response wouldn’t mean 100% negative for the surgery.
@Yuno Do you mean the halo trial? Or does he perform real Invasive Cervical Traction like Dr Bolognese does? 🤔
 
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@Yuno Do you mean the halo trial? Or does he perform real Invasive Cervical Traction like Dr Bolognese does? 🤔
No, as far as I no, he does not perform the “real invasive traction “ a la Bolognese , but he does the invasive halo trial, which is hugely expensive by the way. 8 k for 2days. 😳
 

Malea

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Okay, thanks. I think he doesn’t do any measurements and images with the halo so this would yet again show only clinically if the vertical CCI diagnosis is correct 😑
 

bread.

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I wanted to report another success story from surgery that has been reported in a Facebook group for ME patients with spine diagnoses like CCI, AAI and stenosis.

A young woman in the Netherlands who was bedridden with severe ME, and also suffers from EDS, had fusion surgery with Dr. Gilete in sept 2018. She was fully bedbound, she suffered seizures, and couldnt tolerate light, sound and heat before surgery. Since surgery, she is no longer bedridden and is living normally and independently except for some fatigue, which can be a feature of hEDS and CCI, and which Dr. Gilete has told her could take time to resolve. This information came from her mother who reports her changes as “amazing”.
who is that woman? any reports about that? ty!
 

bread.

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Her mother reported again recently and said that she is 50 to 60% improved. She has EDS and ME.
Generally, it is easier to follow these stories if you are on Facebook in the diff groups for ME and CCI.
are you still considering surgery?
 

Malea

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Oh god I just realized this thread was derailing again. Sorry @mattie

I have big problems cognitively to realize in which thread I am because every thread title around the topic has „CCI“ in it. 🤯
 
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