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- 38
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- Berlin, Germany
@Mânca thanks, with Dr. Gilete and Dr. Oliver in Hospital Tenknon/Barcelona, Spain.
@debored13 thank you
@debored13 thank you
Diagnosed with CCI by doctor Gilete in Barcelona, and MRI done at Medserena in London.
CCI/AAI both confirmed, also hyperlax ligaments. I can put the measures here if need, still waiting for Gilete's full report, he is overwhelmed with work now so it will take a few weeks.
I have been offered a fusion surgery, the area is ready enough for surgery however my fatigue is mild so it doesn't pay off the risk and cost and consequences of surgery.
I have been bedbound for several months in 2018 and recovered from severe to mild now by doing a lot of microbiome modulation, especially FMTs (around 30-40), so microbes are involved for sure.
My guess this is a collagen depletion or certain type of collagen or protein need to build up strong soft tissues, that can be reversed with heavy microbiome work.
I have not been offered any other thing than surgery, no collar, my vertebrae are tilted so it seems in these cases collars don't work.
I would be glad to share my MRI with any researcher.
CCI/AAI both confirmed, also hyperlax ligaments. I can put the measures here if need, still waiting for Gilete's full report, he is overwhelmed with work now so it will take a few weeks.
I have been offered a fusion surgery, the area is ready enough for surgery however my fatigue is mild so it doesn't pay off the risk and cost and consequences of surgery.
I have been bedbound for several months in 2018 and recovered from severe to mild now by doing a lot of microbiome modulation, especially FMTs (around 30-40), so microbes are involved for sure.
My guess this is a collagen depletion or certain type of collagen or protein need to build up strong soft tissues, that can be reversed with heavy microbiome work.
I have not been offered any other thing than surgery, no collar, my vertebrae are tilted so it seems in these cases collars don't work.
I would be glad to share my MRI with any researcher.
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I'm interested in that, can you give us more details please?
i dont want fusion surgery either.
Hi everyone. I’ve had ME for nearly 35 years with significant neck/base of skull symptoms (fluctuating moderate/severe but mostly severe) and have just had a CCI/AAI diagnosis from Dr Gilete. Keen to find out everything I can though I have very limited screen and reading capacity so can’t really manage to read papers and articles. Feeling a bit lost and overwhelmed in this whole new world of structural diagnoses.
@Mânca thanks, with Dr. Gilete and Dr. Oliver in Hospital Tenknon/Barcelona, Spain.
@debored13 thank you
Julia, did you have many hypoglicemic episodes?
The doctor mentioned me a patient who underwent a surger the week of my visit that had many issues with glucose like me, could it be you? Did your low sugar dissappear? He didn't know it the surgery would cure it as this is all so new and its under research.
Im glad you are recovering, please keep us updated.
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- 38
- Location
- Berlin, Germany
@suevu That wasn’t me I guess. I did have sugar intolerance but it was not in my blod just it made me sick with „the flu“.
Thank you for your well wishes. I am out of the hospital as of today and what I am experiencing is magic. Everything is gone. I have post-surgery pain and my muscles are de-conditioned but my energy envelope is gone. It’s gone.
I have been bedbound for a year and I have had an energy envelope since my pregnancy in 2012 and now I feel like I was never that healthy in my life.
I feel like my nightmare turned into a fairytale.
Thank you for your well wishes. I am out of the hospital as of today and what I am experiencing is magic. Everything is gone. I have post-surgery pain and my muscles are de-conditioned but my energy envelope is gone. It’s gone.
I have been bedbound for a year and I have had an energy envelope since my pregnancy in 2012 and now I feel like I was never that healthy in my life.
I feel like my nightmare turned into a fairytale.
CONGRATS, Julia!!!! I know how that feels. It's amazing, isn't it? So glad you are doing so well. Good luck with your recovery.
MEPatient345
Guest
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Oh my goodness.. will you keep updating us on your progress?? Like you mean you feel fully well? How is your brain fog? Did you have any vision issues, light or sound sensitivity that is also gone or improved?
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- 38
- Location
- Berlin, Germany
@Silencio of course I will.
I feel fully well. Soundsensitivity is still there but it is only that „I don’t like a motorcycle right beside me“, nothing more. My brain is so crystal clear that only now I realize for how long brain fog sneaked into my life and built up over many years. Light has not been a real issue for me so that’s the same.
Most amazingly is this total brain fog freeness. I am talking and singing and talking and on and on. My family is speechless
I feel fully well. Soundsensitivity is still there but it is only that „I don’t like a motorcycle right beside me“, nothing more. My brain is so crystal clear that only now I realize for how long brain fog sneaked into my life and built up over many years. Light has not been a real issue for me so that’s the same.
Most amazingly is this total brain fog freeness. I am talking and singing and talking and on and on. My family is speechless
Amazing! Congratulations! We need to start keeping a list of members who have recovered from CCI surgery. She's the 4th now I think, and the list will keep getting bigger. I have a feeling that people with CCI might a much bigger subset of ME/CFS patients than we anticipated...
MEPatient345
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Oh my god. Amazing. How many levels of fusion did you do? I’m not sure if you are the same Julia from Germany that is in a Facebook group that I am also in for ME peeps w CCI, but if you are, our imaging is almost identical..
Did you have scoliosis or further spine issues?
Did you have scoliosis or further spine issues?
- Messages
- 38
- Location
- Berlin, Germany
@Silencio I haven’t shared my imaging on fb so I don’t think it’s me.
I have had spine issues for 9 yrs prior to ME. Several hernitated discs, scoliosis and severe kyphosis of the cervical spine. CCI, AAI, subaxial instability (actually that was so bad, my spine looked like a spiral when they opened me up). My fusion goes from C0-T1 also they replaced C5-C6 disc and decompressed my almost collapsed jugular veine by bone reduction of C1.
I have had spine issues for 9 yrs prior to ME. Several hernitated discs, scoliosis and severe kyphosis of the cervical spine. CCI, AAI, subaxial instability (actually that was so bad, my spine looked like a spiral when they opened me up). My fusion goes from C0-T1 also they replaced C5-C6 disc and decompressed my almost collapsed jugular veine by bone reduction of C1.
I wonder what made the biggest difference? Since you had several problems, it is difficult to pin point which was the culprit since you fixed all of them.
Did you have a traction test? Did you respond well to it?
MEPatient345
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Ok thank you for letting me know. Oddly you still sound like me for many of those diagnoses, except for the kyphosis of cervical spine. I have been recommended C0 to T1 too by Gilete. Am very excited for you! Please do keep us up to speed on recovery.
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- Messages
- 38
- Location
- Berlin, Germany
@borko2100 no traction testing but I knew from pt before that traction was wonderful for me. I think we’ll never know but I’m sure it’s the combination of all the things that were done in surgery that give me this wonderful result.
Gingergrrl
Senior Member
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- 16,171
I'm so happy for you Julia, thinking how you have probably suffered like all of us and all the arrogance of doctors for years from 2012 that I'm sure you are going to live your new life to the fullest.
So are all your symptoms completely gone? Did you have tinnitus? Can you move your head sideways?
I don't know if this happens in all surgeries, Gilete told me if I had the surgery at least the surgery I needed, I wouldn't be able to look sideways, only move a very small degree to left or right. Probably all cases are different.
Congrats again, you deserve it.
A 6th sense tells me the origin of all the symptoms in ALL of us, is located in that area, some kind of instability, and probably even some kind of nerve or tissue damage that can't even be appreciated in MRIs that could even be affecting those whose MRIs came "negative".
I dont think that such a bunch of complex and weird symptoms we all have are unconnected or unrelated, or some cases have extremely different causes to others, while triggers of course migh be different, I would put all my money on that area for all the typical symptoms pack (brain fog + fatigue + sound and noise sensitivity + PEM)
I agree with you, there is a possibility that the majority of ME cases are due to dysfunction of the brain stem / upper spinal chord. The striking similarity of symptoms between CCI and ME is pointing to that conclusion.
If this is the cause, it is likely that there would be several different groups sufferers:
- dysfunction due to compression / poor blood flow (structural problem)
- dysfunction due to chronic brain stem inflammation (autoimmune problem)
- dysfunction due to problem with brain cell mitochondria (the cells in the brain stem are not working properly)
- dysfunction for other reasons (brain wiring problem, chronic infection (virus), etc.)