Had an appointment with Dr. Bolognese

crypt0cu1t

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I had my first consultation with Dr. Bolognese today and he looked over my MRI and said that I have retroflexed odontoid and he thinks this COULD be causing some of my issues.

He wants me to try traction with a physical therapist and he suggested that I do neck strengthening exercises at home, and he also ordered an EMG, but he didnt seem very convinced that I have anything structural going on and leaned more towards the autoimmune component of my illness, so I'm not sure what to think.

Anyone have any input?
 
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Malea

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In my understanding a retroflexed odontoid can cause brainstem compression.
If your images are supine images maybe it would make sense to do upright scans additionally to get more information about the possible brainstem compression.
 

valentinelynx

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I had my first consultation with Dr. Bolognese today and he looked over my MRI and said that I have retroflexed odontoid and he thinks this COULD be causing some of my issues.

He wants me to try traction with a physical therapist and he suggested that I do neck strengthening exercises at home, and he also ordered an EMG, but he didnt seem very convinced that I have anything structural going on and leaned more towards the autoimmune component of my illness, so I'm not sure what to think.

Anyone have any input?
Why not try the traction with a PT, like he suggested? If you don't think it makes any difference, then you've learned something. The PT can give you neck strengthening exercises, as well. The EMG will also provide clues about whether you have problems with your neural transmission. The idea here is to tease out whether the retroflexed odontoid is causing brainstem compression. If it is not then the traction won't help.

I'm curious about the EMG, though. Did he say what he was looking for with this test? I'm more familiar with this for teasing out whether peripheral weakness/pain/paresthesias are coming from nerve root compression (as from a herniated disc) vs. a peripheral cause (like carpal tunnel syndrome).
 

crypt0cu1t

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Why not try the traction with a PT, like he suggested? If you don't think it makes any difference, then you've learned something. The PT can give you neck strengthening exercises, as well. The EMG will also provide clues about whether you have problems with your neural transmission. The idea here is to tease out whether the retroflexed odontoid is causing brainstem compression. If it is not then the traction won't help.

I'm curious about the EMG, though. Did he say what he was looking for with this test? I'm more familiar with this for teasing out whether peripheral weakness/pain/paresthesias are coming from nerve root compression (as from a herniated disc) vs. a peripheral cause (like carpal tunnel syndrome).
I'll definitely be trying it since hes ordering it, it wouldnt hurt to try it!
 

Sidny

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He said that Inwas born with it and it's unlikely to be causing any issues
That’s what the docs were saying about my cyst but I think it’s an easy out for them to use the “congenital” label. My intuition tells me mine developed as a result of an infection (due to severe pain and stiffness in the area it showed up on my scans) Interestingly a google search turned up infection as a potential cause of subarachnoid cysts. An actual operation to deal with it though seems risky and probably a last resort option (for me at least)

Hope your answer and remission lies outside of having an invasive surgery.
 
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crypt0cu1t

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That’s what the docs where saying about my cyst but I think it’s an easy out for them to use the “congenital” label. My intuition tells me mine developed as a result of an infection (due to severe pain and stiffness in the area it showed up on my scans) Interestingly a google search turned up infection as a potential cause of subarachnoid cysts. An actual operation to deal with it though seems risky and probably a last resort option (for me at least)

Hope your answer and remission lies outside of having an invasive surgery.
I'm pretty sure it is causing at least some issues but it doesnt explain why I went into remission from high dose IVIG, So my gut tells me that I have an underlying autoimmune issue that's my main problem and the cyst is secondary imo.

I actually believe that my AI issues were probably triggered by an infection but I think the infection is probably long gone (if i did have one)

How are you doing bro?
 

Sidny

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Infections with these intracellular devils I think are hard to rule out as “past” imo. I think even in latent forms they’re still expressing proteins our immune systems constantly react to hence what the medical complex calls “autoimmunity”- just my opinion though -the fact that you achieved remission with IVIG is a good sign and all that matters really.

I’m hangin in there bro but probably a bit worse overall. Thank you for asking, hope your upcoming treatments bear more lasting results this time around.
 

crypt0cu1t

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Infections with these intracellular devils I think are hard to rule out as “past” imo. I think even in latent forms they’re still expressing proteins our immune systems constantly react to hence what the medical complex calls “autoimmunity”- just my opinion though -the fact that you achieved remission with IVIG is a good sign and all that matters really.

I’m hangin in there bro but probably a bit worse overall. Thank you for asking, hope your upcoming treatments bear more lasting results this time around.
That's a solid theory man and Its hard to ever really know for sure. I think it is very likely for a lot of people but for me I just dont have any evidence of infections at all which frustrates me. We do however keep finding evidence of Autoimmunity.

Thabjs dude I'm hoping I will be able to stick with plasmapheresis and that it helps. I go on the 5th.
 

Gingergrrl

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He said that Inwas born with it and it's unlikely to be causing any issues
That is good to finally have an answer re: the cyst. I just found out I have a small cyst on the right side of my neck (where it meets my shoulder) and my doctor wants to monitor it for 3-months and then decide if I should have it surgically removed. This is super minor and she said 100% it is not lymphoma based on how it feels and the location. I might start a new thread about it at some point to not take this off track :nerd:

My intuition tells me mine developed as a result of an infection (due to severe pain and stiffness in the area it showed up on my scans) Interestingly a google search turned up infection as a potential cause of subarachnoid cysts.
I forgot that you also have a cyst like cryptocult. It makes sense that it could be congenital or from an infection. I wonder how they are able to tell the difference (or can they not tell)?

I actually believe that my AI issues were probably triggered by an infection but I think the infection is probably long gone (if i did have one)
My two main doctors believe that this is what happened in my case and I 100% agree. They feel that the severe case of Mono/EBV that I had in 2012 eventually shifted in autoimmunity (once the infection was gone).

I’m hangin in there bro but probably a bit worse overall.
I had wondered how you were doing @Sidny and am so sorry to hear that you are feeling worse overall :(

Thabjs dude I'm hoping I will be able to stick with plasmapheresis and that it helps. I go on the 5th.
Wow, that is soon! Please let me know how it goes with the PP?!! :jaw-drop:
 

nyanko_the_sane

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@crypt0cu1t if you look at Jen Brea's recovery, I would tend to believe that if you have some kind of compression issue going on, the recommended therapies might make an immediate difference. If you don't feel any better, it's back to the drawing board. You just never know. Good luck!
 

crypt0cu1t

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@crypt0cu1t if you look at Jen Brea's recovery, I would tend to believe that if you have some kind of compression issue going on, the recommended therapies might make an immediate difference. If you don't feel any better, it's back to the drawing board. You just never know. Good luck!
Yeah I dont know much much I'm buying the compression issue for myself just because I dont think IVIG would have put me in remission if that were the case
 

nandixon

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Yeah I dont know much much I'm buying the compression issue for myself just because I dont think IVIG would have put me in remission if that were the case
Surprisingly, it actually seems that it might be possible, in theory. There seem to be several studies (preliminary ones, perhaps) that mention the potentially beneficial antiinflammatory effects of IVIG in spinal cord injury (SCI):

https://www.google.com/search?q=spinal+cord+injury+ivig&oq=spinal+cord+injury+ivig

and there appear to be several ways in which immunological findings related to SCI might overlap with those that we may be seeing with chronic brain stem compression (e.g., from CCI) and with spinal cord compression (e.g., from cervical spinal stenosis), despite SCI being a more acute process/event.
 

crypt0cu1t

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Surprisingly, it actually seems that it might be possible, in theory. There seem to be several studies (preliminary ones, perhaps) that mention the potentially beneficial antiinflammatory effects of IVIG in spinal cord injury (SCI):

https://www.google.com/search?q=spinal+cord+injury+ivig&oq=spinal+cord+injury+ivig

and there appear to be several ways in which immunological findings related to SCI might overlap with those that we may be seeing with chronic brain stem compression (e.g., from CCI) and with spinal cord compression (e.g., from cervical spinal stenosis), despite SCI being a more acute process/event.
Damn this has me intrigued now! I'll be going down the rabbit hole researching all night now so thanks 😂😂😂
 

Gingergrrl

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There seem to be several studies (preliminary ones, perhaps) that mention the potentially beneficial antiinflammatory effects of IVIG in spinal cord injury (SCI):
I used to participate in two private IVIG groups on FB during the two years that I was getting IVIG and there were many cases where the exact diagnosis was unclear (both immune deficiency and autoimmune doses of IVIG) yet the person made incredible recoveries. I learned from that experience that the exact diagnosis is not necessary in order to benefit from IVIG. I never heard of it being used with spinal cord injuries yet nothing would surprise me re: the endless uses for IVIG.

Damn this has me intrigued now! I'll be going down the rabbit hole researching all night now so thanks 😂😂😂
Yes, I know that rabbit hole very well and spent several years there. Let me know when you come out what you have learned re: this issue ;). I still have moments that I wonder if my long-standing neck issue is somehow related to my autoimmune issues (although I am still about 95% that they are separate in my case).