Tracking CCI / AAI MRI & Treatment outcomes

[rel8ted]

Is your conclusion that the surgery made you worse?

Not worse per se. I had a badly deteriorated disc that needed replacing, the instability was causing cord compression. Although I was assured at my follow-up that I should return to my "normal," I cannot lift more than about 10 pounds comfortably and I have less energy for sure. Was hoping for some brain fog and reduction of neuro symptoms, but that did not happen. I have less pain in the area of the replaced disk, but much, much, much more pronounced tethered cord symptoms. I would have the ACDF again knowing all of this, but there was a significant amount of cord compression. In other words, because it was pretty much not an option, I do not regret it, but would not recommend it unless it were for dire circumstances. I hope that all made sense.

 

[EnigmaCo]

Not worse per se. I had a badly deteriorated disc that needed replacing, the instability was causing cord compression. Although I was assured at my follow-up that I should return to my "normal," I cannot lift more than about 10 pounds comfortably and I have less energy for sure. Was hoping for some brain fog and reduction of neuro symptoms, but that did not happen. I have less pain in the area of the replaced disk, but much, much, much more pronounced tethered cord symptoms. I would have the ACDF again knowing all of this, but there was a significant amount of cord compression. In other words, because it was pretty much not an option, I do not regret it, but would not recommend it unless it were for dire circumstances. I hope that all made sense.

Thanks for ur honesty...

 

[LilyChou]

@mattie HEY
I JUST STUMBLED OVER THE ARTICLE ABOUT J.Brea RECOVERY and your operation/diagnosis. I have a really important question : it‘s written in the article that you have been diagnosed in germany.
could you pls tell me where and who diagnosed you because I would consider going there. (I live in germany) . Thanks

 

[LilyChou]

ps: I tried to read all 23 pages of the topic here but I‘m zoning out , and cant focus. been not really able to read anything in the last months/year, I am sorry if you already mentioned it somewhere but I would consider that option for me since ME got worse for me after brain trauma/neck injury

 

[Tella]

ps: I tried to read all 23 pages of the topic here but I‘m zoning out , and cant focus. been not really able to read anything in the last months/year, I am sorry if you already mentioned it somewhere but I would consider that option for me since ME got worse for me after brain trauma/neck injury

Cfs is a mind body condition (as most are but cfs more so). All doesn’t work well as chronic stress leads to a trigger after which u get sick.

 

[LilyChou]

hey, I have ME/CFS for 9 years by now. I know about that mind body connection and I did eliminate stress and focused on my emotions, thank you.
time to focus on the other things too.

 

[mattie]

could you pls tell me where and who diagnosed you because I would consider going there. (I live in germany) .

https://www.medserena.com/kontakt/
You can find all Upright MRI clinics in Germany at the bottom of that page. Diagnosed by Dr Gilete in Barcelona.
I would recommend to read as much as you can on this subject before moving forward.

 

[LilyChou]

thanks

 

[JAH]

Not worse per se. I had a badly deteriorated disc that needed replacing, the instability was causing cord compression. Although I was assured at my follow-up that I should return to my "normal," I cannot lift more than about 10 pounds comfortably and I have less energy for sure. Was hoping for some brain fog and reduction of neuro symptoms, but that did not happen. I have less pain in the area of the replaced disk, but much, much, much more pronounced tethered cord symptoms. I would have the ACDF again knowing all of this, but there was a significant amount of cord compression. In other words, because it was pretty much not an option, I do not regret it, but would not recommend it unless it were for dire circumstances. I hope that all made sense.

Can you tell me what are “tethered cord symptoms “?
Thanks and I hope there’s a chance for more improvement for you soon.

 

[Seattle08]

heds per rheum and neuro (Multiple hernias and dislocations, flexibility, prolapse);
dr b scheduled surgical traction oct 21 Based on traction trial and films;
neurogenic bladder thru urodynamic studies;

neuro said syringomyelia but I think dr b said might be artifact?
multiple tarlov cysts on cervical area and low back;

severe degeneration lower back/si and scoliosis areas in spine -lordosis (lost curve)- may be unrelated or possible cause of some of pain;

dr b and neuro say probable tethered cord based on symptoms and history and films (dau has definite dimple)
mild chiari 3-5 mm dx in 2008 (rheum sent films to michael rosner but not evident on recent mri- ?). Ignored at time bc didn’t seem neck was a problem, but been downward spiral since then.

tilt table test positive for pots;

mcas dx from gi stains;

neuro and dr b says cci that could benefit from surgery or maybe just viscous spinal fluid - so unclear what that means;

Multiple scans - mri, cine mri, neck and brain mri and ct, xrays.
neuro said if positive on surgical traction and bolt for pressure, they could just proceed to surgery.
so I will report what he finds, but want to know options if surgery recommended. I had thought I would just go get assessment... and then have time or months to prepare for surgery if warranted and time to research alternatives.

but want to weigh in here to hopefully compress the research I would need to do if presented with option.
thank You!

 

[Donsboig]

I was diagnosed by Dr Bolognese and a UK neurosurgeon as having mild CCI based on measurements of CXA, Grabb-Oakes and atlas-axis angle in rotation.

However, my symptoms are (relatively) mild and straightforward, so they both felt that I was clearly not a candidate for surgery.

One of the scans for this investigation (CT venogram) did reveal that my internal jugular veins are severely squashed on both sides between my styloid and C1 transverse process bones. I am hoping to follow this up with Dr Higgins.

More details in my post here

 

[Grigor]

Is the tracking of the outcomes from surgery still happening? I know there was a survey.

 

[frozenborderline]

have lots of disappointment with bolognese and his office. He's very smart but has major blind spots. Because of him I am left out in the cold and suffering for a long time without help . I am too tired to write up my whole experience and we cannot post videos here but if anyone must know my experience I can message it to you, for the full details.

All i can say is his screening methods are extremely flawed and he misses a lot of cases


Leaving severely ill people to suffer without help. I also have to wonder if it's even worth seeing him if you don't already see Kaufman or chheda, the high end internists/mecfs docs, who advocate very intensely for their patients AND have a working relationship withbolognese, so he respects them. I don't have a primary me/cfs doc that organizes treatments for me, mine is extremely scattered and spacy, and will not advocate for me. But I couldn't afford Kaufman, or thought I couldn't and didn't consider fundraising for it, earlier in my illness. I think if you looked at a study of patient outcomes for bolognese, it's more likely that kaufman patients get the surgeries they need without being overlooked by bolgonese , and that he helps with the advocacy and communication that are very very difficult for me/cfs patients that are severe.

 

[frozenborderline]

I think really the only way to have a full remission with this illness is to either catch it early or have access to the best doctors and caregiving resources and some money (not rich just middle class or something), or catch it early, ideally both.

The cci neurosurgeons are swamped with cases and make hasty dismissals even of people who have severe measurements and symptoms. I've been in a collar for years, and am left without treatment even though all my measurements and response to traction. Indicate surgical level of cci. And if I had dr kaufman as a doctor I'm sure I'd be having surgery or had it already.

 

[ehc918]

@frozenborderline It’s also unclear if any other people have had a full remission. Most people seem to need not just fusion, but often additional surgeries as well for things like additional instability, tethered cord, styloid removals, stents, etc. This is so complex, and hard to pin down what is coming from what. I’m so sorry for your struggles.

 

[bensmith]

@frozenborderline do you see levine?

 

[frozenborderline]

@frozenborderline do you see levine?

I don't want to mention who I see publicly bc they could treat me worse as a result of criticism. I'm easily identifiable by my posts. U can dm if you want to know who I see.

 

[frozenborderline]

@frozenborderline It’s also unclear if any other people have had a full remission. Most people seem to need not just fusion, but often additional surgeries as well for things like additional instability, tethered cord, styloid removals, stents, etc. This is so complex, and hard to pin down what is coming from what. I’m so sorry for your struggles.

To be clear while the kinks aren't totally ironed out I do believe the surgery and theory is very promising. Mechanical problems aren't the only issue for me but they're a big one. Biggest problem though is identifying what's going wrong to degrade the collagen, I wish most doctors thought that way

 

[bensmith]

This is a big conern i have. Ill have to have surgery pretty soon at this rate, but like you said without knowing why our colegen us going down, fear im putting the cart before the horse. Jen and jeff were very lucky to have
It cleared up before surgery.

 

[valentinelynx]

Is the tracking of the outcomes from surgery still happening? I know there was a survey.

I think the poll at the top of this topic is still open, but don't know how many see it these days.

Here's @Hip 's ambitious survey: "CCI SURVEY – for all ME/CFS patients tested for CCI and related conditions (please answer whether tested positive or negative)". If you page down in @Hip 's opening post of the thread you'll find a discussion of the survey results and a link to a graph of the results.