did you try a Philadelphia collar youtself mattie?
Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS
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Also, I am thinking about Jen's issues worsening after anaesthetic when the neck is forcibly extended to intubate, and Jeff's screws coming out when the physio pulled on his neck - what if you get fused then at some point need another general anaesthetic? How could you be safely intubated without neck extension?
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mattie
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An Aspen Vista. It helped with traveling.
Remi
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In this thread, @jeff_w says that only the invasive halo traction relieved POTS.
"When I put on the cervical collar prior to my halo, it didn't help my ME symptoms at all. I didn't get enough lift from the collar alone to alleviate brainstem compression (POTS, PEM). The collar only took care of my overt CCI/AAI symptoms (dizziness, etc).
What did eliminate my ME symptoms was invasive traction from the halo, which provided enough lift to eliminate brainstem compression, and then after that, the fusion surgery."
I haven't read that @JenB 's POTS disappeared before fusion.
Thanks, I really appreciate all the info. I am so scared, reading lots of both positive and negative stories. Did Dr Gilete say whether the fusion was expected to be good for your whole life or likely to wear out or need redoing at some point, like certain other orthopaedic surgeries?
If I spent all I had on this I would want it to last the rest of my life. He actually suggested to me to get fused beyond C2 due to very mild signs of instability there that are probably inconsequential now but may become weakened due to adjacent level syndrome if I am fused above.
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I am also worried that if I started wearing a hard collar I would become dependent on it with further weakening of the muscles, but I guess if the collar helped me enough that I wanted it on all the time, it would be a signal that surgery was definitely needed.
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His evaluation report said the same thing on mine but it read more like a general disclaimer at the end rather than a note specific to my case?
Remi
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I think there is a maximum of 4 hours per day recommended for the collars to avoid weakening of the muscles. Maybe core strengthening exercises are recommended anyway for these problems and specifically when wearing a collar?
roller
wiggle jiggle
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would it be helpful, to have a cci-patient-library, sort of, in this forum ?
where everyone posts their scans (if such files are not too large) and the evaluation reports.
means, findings and results (reports, MRI etc) before and after surgery ?
what would speak against this ?
(privacy issues perhaps ?)
where everyone posts their scans (if such files are not too large) and the evaluation reports.
means, findings and results (reports, MRI etc) before and after surgery ?
what would speak against this ?
(privacy issues perhaps ?)
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I have a question for those people who have communicated with Dr Gilete's clinic.
I sent him my scans and just received a reply that he is interested in reviewing my case followed for different review/report options and their relevant prices.
My question is.... is this a standard reply he sends to everyone before looking at anything? Or is his interest sparked by the scans?
The reason I am asking is that, like so many of us, I am broke... having spent so much over the past 7 years trying to get answers for this horrid condition. On the other hand it was I who send my files to him, I should have expected that an answer would cost money. I guess I had hoped for a "Yes we see something, if you want to know more you have to pay." Not a complete unknown of whether it is just another red herring.
I sent him my scans and just received a reply that he is interested in reviewing my case followed for different review/report options and their relevant prices.
My question is.... is this a standard reply he sends to everyone before looking at anything? Or is his interest sparked by the scans?
The reason I am asking is that, like so many of us, I am broke... having spent so much over the past 7 years trying to get answers for this horrid condition. On the other hand it was I who send my files to him, I should have expected that an answer would cost money. I guess I had hoped for a "Yes we see something, if you want to know more you have to pay." Not a complete unknown of whether it is just another red herring.
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I have just got back in touch with them after a bit of a hiatus due to worsening symptoms and of course being inspired by Jeff, Jen and now Mattie. Was this reply before or after you paid the ~250 euros for initial evaluation?
I have just paid for a new evaluation with further scans, and will follow it up with a skype consult.
My first response included possible cranial settling and C2-3-4 instability. Following consult in Barcelona and DMX scan it was cranial settling with only very minor lower level instability. I was offered C0-2 fusion, with suggestion to consider fusing the lower levels to avoid developing weakness there as a result of surgery (adjacent level syndome).
They are absolutely swamped at the moment due to all the online publicity this has been getting.
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We could always leave our names & any personal data off the reports. I would be really interested to see other people's reports.
I think it is less useful and potentially harmful to post medical imaging online for interpretation by non-medical personnel, as is the case on other forums. This invites misinformation/speculation about possible diagnoses that are not necessarily accurate and can cause a lot of anxiety and uncertainty, or conversely false reassurance.
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mattie
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Adjacent segment disease is a well known and documented complication.
In my case he expects the hardware to last and thought the risk of adjacent segment disease to be low.
(h)EDS patients have a greater risk of complications and the need for additional surgery as their connective tissues may continue to degrade. In some cases he indeed recommends fusing the entire cervical spine to prevent the need for additional surgery at a later stage.
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I think if I had it done, I would take his advice regarding lower levels. It just makes it more complicated and expensive, but I read that adjacent level syndrome affect about 6% of people every decade post-fusion (that wasn't specific to EDS). I am not actually sure if I have EDS as other than having severe POTS I don't really meet the diagnostic criteria in terms of flexibility.
Thanks so much for the helpful info Mattie. I spoke to Amy again this morning and am having a further skype evaluation with a couple of new scans in the next few weeks.
I am just scared of major surgery, being so unwell to start with. My kids are young & I don't want to leave them if anything went wrong, but with me like this they don't really have a mum anyway.
I guess you reach the point where you feel you have nothing to lose. It was just a little unclear diagnostically in my case as I have no focal neurological symptoms eg numbness in an arm or leg, or breathing problems like Jeff or Jen did, but I have everything they did prior to that last stage.
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Yes, you do have to pay to get a meaningful opinion, & fill in a questionnaire regarding symptoms etc.
Based on that he will likely make a provisional diagnosis & maybe suggest further tests/consult.
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mattie
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I totally understand.
Obviously I will never ever recommend this surgery to anyone. Even if I would recover to 100%.
If you decide to have this surgery in the hope of improving your ME or dysautonomia symptoms you must understand and accept there are 0 guarantees, there will be risks and side effects and you will be a guinea pig. The relationship between CCI and ME remains unclear; we only have a few anecdotal success stories. More research is desperately needed.
Definitely share all your concerns with Dr. Gilete.
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Thanks for that B,
Do you know how much Dr Bolognese charges for his initial evaluation? (I've sent him my scans and forms as well.)
Yes I will do, that is why I have booked a further Skype consult so that I can ask the questions I need to ask & be clear about the risks of perioperative mortality.
I personally feel that as long as the surgery didn't kill me or leave me paralysed or on a ventilator, it is worth trying, because without that I will never know.
Amy told me they are now requiring a MR venogram pre-op, and an opthalmology examination, was that the case when you were there recently?
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Remi
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$300