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

roller

wiggle jiggle
Messages
637
Likes
504
sounds not really good, @Yuno
do you have any idea how you come about these things ?
could it be accidents or was anything running in the familiy, or any explanation (other than "acquired infection") ?

did you previously notice somehow that there is something wrong ?
pains specifically there, or restricted in movements ... other sensations, things you couldnt do...?

perhaps anyone knows: is there any genetic predisposition for such spine-related things ?
 
Messages
24
Likes
94
Update: I’m currently investigating stem cell / PRP therapy with a neurosurgeon who now deals exclusively with regenerative medicine in Belgium. I had a Skype consultation and he recommended 20 PRP injections up the neck to see if it improves instability, as the back of the throat injection is “very dangerous” although he does sometimes perform it, it seems he tries to avoid it. For the best chance at these treatments working you have to get your body into as good a shape as possible (as you are using your own cells to heal), so I am ordering Lyme and co-infections test from Germany (ArminLabs) to rule those out first. If I find something I will have to get those under control before doing treatment. I hope I’m able to.
The treatment cos is €3,000 and done under local anesthetic. He said 50% of people experience 80-90% recovery and the others are mixed, and try further treatments etc.
I’m trying to avoid fusion surgery if I can.
update - my bloods from Armin showed (very low level/borderline) lyme and reactivated EBV, and apparently the stem cells won't work as well unless that is fixed first. I am booked in with a very high level immunologist London next week to see if theres anything he can do to improve that, with the view of aiming for stem cell/PRP injections before having to go down the surgery route.
In the meantime I've started the Cusack protocol to try to improve my collagen production. 🤞

I'll keep you updated!
 
Messages
25
Likes
115
Location
Scottsdale, AZ
UPDATE: MAY 24TH APPOINTMENT WITH DR. BOLOGNESE

Well, I don't know which box to check, yet!

I just completed my first appointment (video) with Dr. Bolognese, surgical director of the Chiari Neurological Center in Lake Success, NY! I know so many of you are anxiously awaiting the news from my appointment, so following is my “first take.” As my parents were part of the appointment and recorded it, I did not take notes, so this is from my memory. I’m super tired from the exertion, so there may be new layers I will add to this after my father transcribes the audio for me.

While my journey with ME/CFS began in my teenage years, my journey in pursuing this angle of ME/CFS began in November after reading Jeff Wood’s “Mechanical Basis” article. It resonated with me, immediately, as I have had neck, fatigue and PEM issues since high school. A common phrase I heard growing up from my parents was, “You don’t want to overdo it, Jilly, you’ll get sick.” These ME/CFS symptoms have progressively gotten worse over the years; these last 10 years have been especially bad. I am not able to work and am mostly couch-bound with some bed-bound days. Through careful management, I am able to do 1-2 errands a week, and a sitting date night with my fiancé (like the ballet, symphony, movies, etc). If I do too much, I have what I have termed an “energy stroke.” Body shuts down, cannot tolerate light or sound or movement, I have to fully concentrate on making myself breathing because my body doesn’t seem to have the automatic breath in response.

I was a figure skater and champion high jumper with an improper landing technique — instead of jumping up, arching and “snapping” (butt lands on mat), I kept in the arched position and landed on my head and face. At 16, I had mono. (Although I have a theory that this was not my first time with EBV.) Before those cute celebrity bobble-heads were invented, I would always say to my parents, “It feels like I have a bowling ball head on a toothpick neck.” Many of you know that I am currently a patient at Dr. Montoya’s clinic at Stanford and, before that, a patient of the late Dr. Martin Lerner in Michigan. I have been doubly-diagnosed with ME/CFS by two of the top doctors in this field.

Anyway, getting back to Dr. Bolognese…what my take on the route of CCI is similar to a Zelda-like quest 🧝with challenges or tests you must pass or complete to face the final dragon. 🐉 I was told today is that I am past the first challenge: the measurements from my MRI, symptoms and injury sustained for 4 years while a competitive high jumper with an improper landing technique all led Dr. Bonilla to accept my case.

I was told that my measurements from my upright MRI fall “in the shitty part of the spectrum” (had a laugh at that) if you are looking at all people’s MRI measurements. I am in the 70-80% range based on measurement alone for a CCI diagnosis. My history and measurement are encouraging but there are additional things I need to undergo before we are certain of what I have in regards to ME symptoms.

I am “halfway there.” Next, Dr. Bolognese is writing me a script to do provocative — but non-invasive — testing through cervical traction with a PT 4-5 times and keep a diary of those times. I am to see if there is a reduction of symptoms during the traction: fatigue, PEM and what I call “energy strokes.” I am also to get a home traction device from a medical supply center to do at home for two weeks.

If there are reduction of symptoms during the non-invasive testing, then my journey with Dr. Bolognese continues. The next step is to do invasive cervical testing. This would be done in the OR; I don’t know the proper term but it sounds like invasive traction under live, guided imaging. From there (or perhaps before), we will start the surgical discussion.

Also, based on my history of sports (figure skating and high jumping), it is highly likely that I have some form of EDS, (only a few types have a genetic test available).

I wish I had the energy, right now, to elaborate further on my symptoms and history, but I’m pooped! 💩 I don't want to steal this thread, so I've posted this as an update on my original post for people to comment, there.
 
Messages
73
Likes
181
sounds not really good, @Yuno
do you have any idea how you come about these things ?
could it be accidents or was anything running in the familiy, or any explanation (other than "acquired infection") ?

did you previously notice somehow that there is something wrong ?
pains specifically there, or restricted in movements ... other sensations, things you couldnt do...?

perhaps anyone knows: is there any genetic predisposition for such spine-related things ?
Yes, i have quite a narrow spine canal, which I think is congenital and I have found out that I have been having probably a form of light OI from my teenage years on before I developed PoTs. My mother does have it as well, can’t stand upright longtime, faints, etc.....
 

bombsh3ll

Senior Member
Messages
285
Likes
1,003
I've posted about this elsewhere but also asking here in case it reaches a more specific group;

Has ANYONE seen/sent scans to Dr Gilete in Barcelona and been told they are normal?

I am considering C0-2 fusion surgery there for a diagnosis of cranial settling. What is concerning me though is that every single person I have come across online (now a substantial number since I began researching) who has been in contact with Dr G has been diagnosed with something structural and offered surgery.

Statistically this is very unlikely. I would expect only a minority of people being evaluated for this rare disorder to actually have it.

Anyone?

B xxx
 

lafarfelue

Senior Member
Messages
433
Likes
1,211
Location
Australia
I've posted about this elsewhere but also asking here in case it reaches a more specific group;

Has ANYONE seen/sent scans to Dr Gilete in Barcelona and been told they are normal?

[...]

Statistically this is very unlikely. I would expect only a minority of people being evaluated for this rare disorder to actually have it.

Anyone?
Recently, there have been a few people whom have had their MRIs assessed and been told they are not candidates. They have posted to these forums saying as much. I can't recall whom exactly, and there are way too many posts to scroll back through. Maybe @jeff_w is keeping better tabs on this, and had that info at hand? Something like 16 out of 20 were positive for CCI? (Which is not automatically saying that they should ever need surgery.)

Re statistics... are you referring to the general population, or to this chronic illness community specifically? For all we know, the ME community may end up having a significant subset to have CCI and/or AAI (to the degree that produces ME in the body). We have no idea yet.

Also, how rare is CCI really? We don't know that either. There are individuals who are probably completely asymptomatic, just like some with herpes, EBV, etc. Again, CCI doesn't require surgery in all cases.
 

bombsh3ll

Senior Member
Messages
285
Likes
1,003
Recently, there have been a few people whom have had their MRIs assessed and been told they are not candidates. They have posted to these forums saying as much. I can't recall whom exactly, and there are way too many posts to scroll back through. Maybe @jeff_w is keeping better tabs on this, and had that info at hand? Something like 16 out of 20 were positive for CCI? (Which is not automatically saying that they should ever need surgery.)

Re statistics... are you referring to the general population, or to this chronic illness community specifically? For all we know, the ME community may end up having a significant subset to have CCI and/or AAI (to the degree that produces ME in the body). We have no idea yet.

Also, how rare is CCI really? We don't know that either. There are individuals who are probably completely asymptomatic, just like some with herpes, EBV, etc. Again, CCI doesn't require surgery in all cases.
I.know people have been cleared on MRI by Dr Bolognese who also very briefly said my scans r ok, (no mention of traction tho), just concerned everyone consulting Dr gilete seems to be offered surgery.

Even within chronic illness group with symptoms, you would expect some people to be negative for this specific cause.

B xxx
 

Remi

Senior Member
Messages
116
Likes
172
I.know people have been cleared on MRI by Dr Bolognese who also very briefly said my scans r ok, (no mention of traction tho), just concerned everyone consulting Dr gilete seems to be offered surgery.

Even within chronic illness group with symptoms, you would expect some people to be negative for this specific cause.

B xxx
Are you in the Beyond Measurement FB group? I can ask there if you want.
 

bombsh3ll

Senior Member
Messages
285
Likes
1,003
Are you in the Beyond Measurement FB group? I can ask there if you want.
I am not, but would really appreciate if you could ask for me. It just bothers me that one has said I have cranial settling and recommended surgery, and the other said no my scans show no sign of instability (although Dr Gilete did a DMX which Dr B did not see), and also that everyone seems to be recommended surgery by Dr G which makes me think he may be overdiagnosing.

If you can find out anything I would be really grateful.

B xxx
 

Remi

Senior Member
Messages
116
Likes
172
I am not, but would really appreciate if you could ask for me. It just bothers me that one has said I have cranial settling and recommended surgery, and the other said no my scans show no sign of instability (although Dr Gilete did a DMX which Dr B did not see), and also that everyone seems to be recommended surgery by Dr G which makes me think he may be overdiagnosing.

If you can find out anything I would be really grateful.

B xxx
@jeff_w has a lot of experience with the CCI groups - do you have an idea about this? @mattie?
 

lafarfelue

Senior Member
Messages
433
Likes
1,211
Location
Australia
just concerned everyone consulting Dr gilete seems to be offered surgery.
I just read a couple of your posts in other threads on your concerns re Gilete and better understand the context of your query. I hope you get some responses from anyone who's seen him!

Semi-relatedly: It'd be interesting to see if there's a difference between what Dr Gilete sees as 'important' and what the other 3 that Jeff W recommends see as 'important'. I remember someone mentioning here or on Twitter that many other neurosurgeons won't even diagnose (or is it operate?) on anyone who didn't display evidence of severe or blunt force trauma, even if they had CCI.
 

Remi

Senior Member
Messages
116
Likes
172
I just read a couple of your posts in other threads on your concerns re Gilete and better understand the context of your query. I hope you get some responses from anyone who's seen him!

Semi-relatedly: It'd be interesting to see if there's a difference between what Dr Gilete sees as 'important' and what the other 3 that Jeff W recommends see as 'important'. I remember someone mentioning here or on Twitter that many other neurosurgeons won't even diagnose (or is it operate?) on anyone who didn't display evidence of severe or blunt force trauma, even if they had CCI.
It's worth joining the Beyond Measurement group on FB and there is a related Doctor's Review group as well. Many have consulted at least 2 of the 4 surgeons, so can comment on the differences.
 

Remi

Senior Member
Messages
116
Likes
172
I didn't know that. They are pruning inactive members, maybe accepting requests to join will resume after that is done.
 

bombsh3ll

Senior Member
Messages
285
Likes
1,003
I also read on Dr Henderson's website that radiological findings can be very minimal yet symptoms very severe in CCI & related disorders. I think Jen Brea also said her MRIs weren't dramatic, but the DXA showed it.

I have read a number of positive experiences re Dr Gilete though. Another patient with EDS, Ali who had a blog at zebralife which no longer seems to be active, also saw Dr Gilete in 2017 and was recommended full neck fusion, but went to the US where only C0-2 was recommended. She ended up having her surgery there. The US seem more conservative, but then again more money is made when people need further fusions down the road.

B xxx
 

debored13

Senior Member
Messages
2,131
Likes
2,878
Location
Vermont, school in Western MA
I had my appointment with dr bolognese. It seems he has diagnosed me with cci. I want to see it in writing before I celebrate too much, but he said something along the lines of your measurements being consistent with cci, and said while my response to traction is indicative of cci, and my need for a collar, that he would require further testing, including invasive cervical traction, before doing surgery. Rather conservative surgeon, but I think he really knows what he’s doing. Will also send scans to gilete.
 
Messages
24
Likes
94
update - my bloods from Armin showed (very low level/borderline) lyme and reactivated EBV, and apparently the stem cells won't work as well unless that is fixed first. I am booked in with a very high level immunologist London next week to see if theres anything he can do to improve that, with the view of aiming for stem cell/PRP injections before having to go down the surgery route.
In the meantime I've started the Cusack protocol to try to improve my collagen production. 🤞

I'll keep you updated!
UPDATE:
I saw the Immunologist Consultant in London - he was excellent! He went through my Armin Labs blood report line by line (spoiler, do not use this lab - they are famous for not allowing outside bodies to assess their methods, which is why no government agencies will use or recommend them).
Any way, this immunologist is studying and doing trials on people with "SEID" (ME/CFS) or "flu without fever" as he calls it. He's involved with NICE and is regularly funded at very high levels for studies, so I think we really want this guy on our side! >> He's interested in the CCI/AAI link, and asked me to send him anything I think he should see.. Do any of you have solid studies linking CCI/AAI/Chiari to immune disfunction ?? Or can you tag anyone who might know? [edit: tag: @Hip ?]

I think the next step for me is to visit Dr G for DMX and angiogram, and then send those to Dr B for a second opinion!
 
Last edited:

bombsh3ll

Senior Member
Messages
285
Likes
1,003
It seems he has diagnosed me with cci. I want to see it in writing before I celebrate too much, but he said something along the lines of your measurements being consistent with cci,
Please can I ask what scans he measured these from?

B xxx