Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

jeff_w

jeff_w

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On the topic of regenerative medicine, @PisForPerseverance wrote:

PisForPerseverance said:
Seems Jeff did a picl to try to resolve any last remaining issues after his two surgeries. I don't remember what he did it for, you'll have to ask him.
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I had my cervical spine, beneath my fusion, treated with regenerative medicine. I didn't have the PICL, because that treats the upper cervical joints, which I'd already had fused.

The stem cells did work for me, providing more stability to my lower cervical spine.

Also, I wrote a piece on Health Rising, discussing how CCI and related mechanical conditions might be connected to ME: Could ME/CFS be a Chronic, Ongoing Brain and Spinal Cord Injury – That is Exacerbated by Exertion?
 
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Markus83

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Is here anyone who got his upright mri results from a german upright clinic reviewed by Dr Gilete? I'm unsure about the quality of the clinics and it would help me if I knew were to go for getting scans that will satisfy Gilete.
 
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kelly8

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I'm going in tomorrow for my MRI. I'm nervous that they won't find anything. I was diagnosed with mixed connective tissue disorder by a geneticist. We looked into this because my sister was diagnosed with EDS. I've had issues with my joints for most of my life and I've had 3 major concussions and a couple minor ones. I feel like everytime I look into anything everything looks "normal".

My Dr spoke with kauffman and dr B and has gotten me into PT with someone who is aware of muldowney and treats people with hypermobility. I feel a lot better in a neck brace and improved with traction but not at the levels dr. B was asking for.

I just hope they find out what is wrong with my poor broken body. I sublexed my thumb, hip, jaw and neck in the last week and feel like an 80 year old. (I'm only 40). So many times I go in thinking "please help them find what they need to help me" and I end up disappointed. Here's praying they find what is going on...
 
mattie

mattie

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Markus83 said:
Is here anyone who got his upright mri results from a german upright clinic reviewed by Dr Gilete? I'm unsure about the quality of the clinics and it would help me if I knew were to go for getting scans that will satisfy Gilete.
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Yes.
https://www.medserena.com
All clinics are listed on bottom of that page.
I went to Hannover myself. But they all use the same upright scanner.
 
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Markus83

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mattie said:
Yes.
I went to Hannover myself. But they all use the same upright scanner.
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Thanks Mattie. They use all the same scanner but in Munich they didn't let me do my maximal rotation, side bending, although I told them that I could do much more. Afterwards my doctor told me I have to get new images because it's quite useless if you rotate 45° in mri but are able to rotate 90° in real life. I checked with Hannover and they said I can do my maximal motion range there. So if Gilete was fine with the images from Hannover I consider to go there.

Did you also go in the maximal end positions in Hannover? I don't know how it is to hold such a position for 10 minutes or how long the image aquiring takes. I think this is very hard to impossible. Did Dr Schulze diagnose you with instability or only Gilete?
 
mattie

mattie

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Markus83 said:
Did you also go in the maximal end positions in Hannover? I don't know how it is to hold such a position for 10 minutes or how long the image aquiring takes. I think this is very hard to impossible. Did Dr Schulze diagnose you with instability or only Gilete?
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I would not call it maximum end positions, it was maybe 80-90% of that. For me it was doable. If I recall correctly it was about 8 minutes per position.
Dr. Schulze mentioned the AAI, not the CCI.
 
frozenborderline

frozenborderline

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Had appointment with patel. It was otherwise good but I was almost ready to pull the trigger with him and havesurgery, he seems very smart, and then his PA said they dont use intraoperative traction. In response to a question about how much intraoperative traction they use, e.g. intraoperative traction use is so standard at least in the small sample of elite neurosurgeons that I didnt even consider he altogether doesnt use it. That would mean he just fixes the spine in place eg the benefits of a cervical collar only, but far more invasive, with none of the benefits of traction. If there was solely horizontal instability i could almost see this working although even horizontal instability measurements like the cxa respond to traction bc they may be indirectly caused by vertical instability?? (Dont know the details but I know that henderson has a paper in which he details open reduction of the cxa during surgery by intraoperative traction) . But also not all instability is horizontal. For example my ict, which patel looked at, showed a measurement of cranial settling.

Anyway, if this was true, and it came from the PA so maybe I misunderstood it, it would be something that I think basically rules out Patel as a good option. Fusing in place sounds like a terrible idea. Look, I know I'm just a layperson, but we all have things we study enough in our care to know enough to weigh in on, and for me the idea that there has to be intraoperative traction is one of them. Sadly, I was only offered surgery by patel, not bolognese, so I dont know where to turn for a surgeon that does use intraoperative traction and could squeeze me in quickly. This is not something that's debatable like the proper hardware or their median outcome , this seems like super basic. Henderson and bolognese (and I'm assuming anyone in Henderson's practice like rosenbaum) use intraoperative traction

@jeff_w I wonder if you should remove patel from the website until this is sorted out or provide a disclaimer.

Tagging some other folks in who I think are involved enough in the discourse that they should know about this. @JenB @Hip @valentinelynx
 
rel8ted

rel8ted

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frozenborderline said:
Had appointment with patel. It was otherwise good but I was almost ready to pull the trigger with him and havesurgery, he seems very smart, and then his PA said they dont use intraoperative traction. In response to a question about how much intraoperative traction they use, e.g. intraoperative traction use is so standard at least in the small sample of elite neurosurgeons that I didnt even consider he altogether doesnt use it. That would mean he just fixes the spine in place eg the benefits of a cervical collar only, but far more invasive, with none of the benefits of traction. If there was solely horizontal instability i could almost see this working although even horizontal instability measurements like the cxa respond to traction bc they may be indirectly caused by vertical instability?? (Dont know the details but I know that henderson has a paper in which he details open reduction of the cxa during surgery by intraoperative traction) . But also not all instability is horizontal. For example my ict, which patel looked at, showed a measurement of cranial settling.

Anyway, if this was true, and it came from the PA so maybe I misunderstood it, it would be something that I think basically rules out Patel as a good option. Fusing in place sounds like a terrible idea. Look, I know I'm just a layperson, but we all have things we study enough in our care to know enough to weigh in on, and for me the idea that there has to be intraoperative traction is one of them. Sadly, I was only offered surgery by patel, not bolognese, so I dont know where to turn for a surgeon that does use intraoperative traction and could squeeze me in quickly. This is not something that's debatable like the proper hardware or their median outcome , this seems like super basic. Henderson and bolognese (and I'm assuming anyone in Henderson's practice like rosenbaum) use intraoperative traction

@jeff_w I wonder if you should remove patel from the website until this is sorted out or provide a disclaimer.

Tagging some other folks in who I think are involved enough in the discourse that they should know about this. @JenB @Hip @valentinelynx
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Ask for clarification if you think you misunderstood. You need to use a surgeon that uses a procedure you are comfortable with. His staff is amazing & they will respond to you.
 
jeff_w

jeff_w

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558
frozenborderline said:
Had appointment with patel. It was otherwise good but I was almost ready to pull the trigger with him and havesurgery, he seems very smart, and then his PA said they dont use intraoperative traction.
Click to expand...

You'll definitely want to check with Dr. Patel himself. Some questions to ask might be: "How do you determine the optimal position to fuse a patient?" And, "Do you ever provide vertical lift in the positioning process?" And, "How do you correct for cranial settling?"

Let us know what he says.
 
frozenborderline

frozenborderline

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jeff_w said:
, "How do you correct for cranial settling?"
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I will ask this, but ita my understanding that even "horizontal" instability like retroflexed odontoid , may be corrected by traction, as in the henderson paper , which I will dig up in a bit? Like the only other way to correct the cxa would be to tilt the head backward before fusing, which I doubt they do, and would be bad lol

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5748419/
 
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frozenborderline

frozenborderline

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4,405
rel8ted said:
Ask for clarification if you think you misunderstood. You need to use a surgeon that uses a procedure you are comfortable with. His staff is amazing & they will respond to you.
Click to expand...
I will ask for clairification. I will say I dont really want to be a "problem patient" and I know surgeons hate patients thinking they know more, but like I explain in my post, this is a really non negotiable issue... if the PA explained it wrong, then no big deal, if he is correct that they dont use traction, or correct the cranial settling/retroflexed odontoid before fusing , then I dont see why I, nor anyone else who has the same response to traction and etiological understanding of cci, would have surgery with him.
 
K

kelly8

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191
I got my scans back and have been on the fb page with them. I wasn't sure they were going to find anything and then they did. My dens is tilted towards my spinal cord. The people in the fb group said my scan looked awful. I've made an appt with dr.b but the earliest they could see me is the end of June.

I'm still not sure if they will operate on me because I am mostly functional and can work. I do have restricted movement because randomly if I turn my head certain ways it feels like I'm getting electrocuted and I can't breathe for a couple mins. But otherwise I can function and I do a job that is rather physical.

One thing my PT and I noticed is that when I get PEM my muscles tense up and don't relax. Eventually after days they collapse. She thinks it is because my muscles are trying to protect my spine. So when I overdid at work the other day and was starting to get into my PEM stuff she recommended magnesium. I had taken it before but not to reduce PEM. I went home and took magnesium with each of my supplement doses. I took an Epsom salt bath and drank a couple natural sea salt electrolyte drinks.

I was able to reduce the length of my PEM. Still had a couple bad days but it didn't go on for days like usual. I'm still tired but not anywhere near as bad as I could be. It might be something to consider for people dealing with this CCI issue. My muscles are usually tight anyways and have trouble relaxing but perhaps when I overdo it they just get so tight because they are trying to protect my bones and brain. Just a thought....
 
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