Jennifer Brea: I have craniocervical and atlantoaxial instability

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There seem to have been a few complications but she is still tweeting.


I think she has recently had one more surgery. Hopefully we hear good news soon.
I think it’s possible that ME and EDS and MCAS patients have unique barriers to recovery from surgery , even if te a surgery that is supposed to solve those issues. But let’s remember that Jen was facing serious breathing issues Bc of the CCI. In many cases surgery may br the lesser of two evils. I think it’s good people are aware of the pitfalls without being dissuaded from the step of seeking diagnosis, which needn’t lead one to get surgery. More diagnosis/knowledge of this condition may lead to better non surgical treatments. Even with good neurosurgeons surgery is often a crude solution for something that may have an elegant molecular solution in the future
 

Gingergrrl

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Ah, okay. Then I have not been tested.
It is possible that you were tested and our doctor tested me (separate from me having a one-off consult with Dr. Chia). I went to Lab Corp but he wrote on the order that the tests must be sent to ARUP labs and we had researched to make sure we had the proper codes. So it is possible that you have done the testing which would be for "Coxsackie" and "Echo" viruses.

Edited to add: I was positive both times that I tested for CB4 and Echo virus 11 but at low levels that most likely indicated a past infection (although no way to ever know for certain).
 

StarChild56

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It is possible that you were tested and our doctor tested me (separate from me having a one-off consult with Dr. Chia). I went to Lab Corp but he wrote on the order that the tests must be sent to ARUP labs and we had researched to make sure we had the proper codes. So it is possible that you have done the testing which would be for "Coxsackie" and "Echo" viruses.
Thank you! That is good to know, I will ask him when I email him next and/or try to review his notes and my lab reports. :)
 
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I noticed my hands developing weird crepe like skin a few years ago and had no idea why. I am attaching photos, would you mind telling me if they seem similar to your crepe like skin?
This same type of skin wrinkling happened to me with very sudden onset after taking 10,000 IU of vitamin A each day for a few days. While the vitamin A made me feel better than I've ever felt in my life the first 2 days, I rapidly declined with severe fatigue, insomnia and brain fog after that. I've since noticed this skin wrinkling some in healthy friends who are in their 30s, so I'm not sure what to make of it. A lot of young people seem to have really terrible skin. It is hard for me to determine whether collagen or keratin is the primary issue. I think I can list about 11 nutrients that are necessary to make collagen, and none of them have helped my skin, even when I take them all at the same time.

I actually had an explosion of spider veins at the same time the skin wrinkling occurred, which I had always thought would make it collagen/elastin-related. However, some people use keratinolytic creams to treat spider veins. The other clue I have is that every hair follicle became visible, but it is the opposite of keratosis pilaris, where a buildup of keratin in the hair follicle causes bumpy skin. Instead, my hair follicles all look collapsed. My hair is in terrible shape (very fine with a lot of shedding), and my lips always look chapped from the keratin (or lack of keratin). I used to be able to effectively treat spider veins with collagen supplements, but now, they do not improve.

I also get some droopy facial swelling that makes my face look much older. It only resolves with frequent B6 intake. I'm thinking the swelling is probably from low albumin in the bloodstream. So I think there is something weird going on with my protein metabolism. Since I took the vitamin A, I've had bad skin and hair and high need for vitamin B6. Vitamin A usually improves skin! I have a feeling the vitamin A needed something to do its job that I didn't have.
 

gbells

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StarChild56

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This same type of skin wrinkling happened to me with very sudden onset after taking 10,000 IU of vitamin A each day for a few days. While the vitamin A made me feel better than I've ever felt in my life the first 2 days, I rapidly declined with severe fatigue, insomnia and brain fog after that. I've since noticed this skin wrinkling some in healthy friends who are in their 30s, so I'm not sure what to make of it. A lot of young people seem to have really terrible skin. It is hard for me to determine whether collagen or keratin is the primary issue. I think I can list about 11 nutrients that are necessary to make collagen, and none of them have helped my skin, even when I take them all at the same time.

I actually had an explosion of spider veins at the same time the skin wrinkling occurred, which I had always thought would make it collagen/elastin-related. However, some people use keratinolytic creams to treat spider veins. The other clue I have is that every hair follicle became visible, but it is the opposite of keratosis pilaris, where a buildup of keratin in the hair follicle causes bumpy skin. Instead, my hair follicles all look collapsed. My hair is in terrible shape (very fine with a lot of shedding), and my lips always look chapped from the keratin (or lack of keratin). I used to be able to effectively treat spider veins with collagen supplements, but now, they do not improve.

I also get some droopy facial swelling that makes my face look much older. It only resolves with frequent B6 intake. I'm thinking the swelling is probably from low albumin in the bloodstream. So I think there is something weird going on with my protein metabolism. Since I took the vitamin A, I've had bad skin and hair and high need for vitamin B6. Vitamin A usually improves skin! I have a feeling the vitamin A needed something to do its job that I didn't have.
Wow, these things are so difficult to tease out!

I have had very badly chapped lips, but since taking Plaquenil for SS, that has improved a whole lot. I don't know if it is also a keratin issue for me or not, I do need to use lip balm throughout each day though.
 
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I don't see how vitamin A would cause dehydration, but I'm open to the possibility that it is at least partially due to dehydration, because when I first started taking zinc, my skin and fingernails both puffed up and looked very healthy (like it was so noticeable that people commented on it). My fingernails got really shiny and the vertical lines on them disappeared. It was as if they were instantly hydrated. I also stopped having to urinate frequently. So it seemed the zinc did something that allowed me to hold water better. Unfortunately, this effect wore off a couple days later, and now, even high doses of zinc will not cause this effect. Something else has become the bottleneck.

Unfortunately, she suggests drinking more fluids and using moisturizer; neither of which helps. When I drink more water, I urinate it out shortly thereafter. Just drinking water does not mean that it enters your cells and stays there. I don't know what the explanation is, but I assume it has something to do with salt. Like more salt must enter the cell to allow the water to flow in there as water follows salt, and if there is no salt to retain it there, it just goes down the toilet. It is thought-provoking though. I'm afraid brain inflammation alters pituitary function too much to have adequate ADH levels, but maybe there is just something else my pituitary needs to be happy and productive.

But then I will still have to figure out the spider vein issue, which occurred at exactly the same time...
 

Gingergrrl

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Thanks for posting this update and it was very interesting to read. When I watched Unrest in the theater in 2017, I remember not being certain if JenB had POTS because it wasn't really mentioned in the film. She was able to do things in the film that I could not do at that time with severe POTS (like lift a bowl of water over her head to wash her hair) but then, vice versa, there were other things that I could do that she could not.

But what struck me the most is that JenB sat in the wheelchair (and other places) with her legs crossed (often known as "Sitting Indian Style") and this was EXACTLY how I sit for as far back as my memory goes. I sit that way even in a restaurant (if at a booth where no one can see). I sit that way at my computer desk, on the couch watching TV, at my dining table, etc. It is without question the most comfortable way to sit vs. when my legs are dangling straight down, I feel all the blood go to my feet and it is a challenge to maintain that sitting position.

When I used a wheelchair for 3.5 years, this is also how I sat in the wheelchair (unless it was a circumstance where not appropriate to sit that way). When I saw JenB sit that way in Unrest (and in other public appearances), I thought, she must have a huge undiagnosed POTS component to her illness that she is either not mentioning or is not aware of.

I am now able to sit normally BUT if given the choice, I will always sit cross-legged (Indian Style) b/c it is easier for my entire body and brain. The difference is striking but hard to put into words to someone who has not experienced it. When I was much younger, I thought it was just my preferred sitting position and had no idea what it meant (or that it even meant anything)!

Congrats to JenB for 21 days (or maybe more now?) of being free from POTS symptoms! I remember when this finally happened to me around May 2018 and it was an amazing feeling. I don't know that it is gone forever and am supposed to do the NASA Lean test and report my findings to my doctor (and suspect the numbers will still be weird but I have just learned to compensate for them and they are now "normal" for my body).
 

Dechi

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This is very good news about Jennifer. I am so happy for her. After 7 years of hell, what a transformation !

There is something that strikes me though in what she said : she me er experienced fatigue in the 7 years she had ME. Only after her operation did she experience it, from surgery.

I have never heard of anyone having ME without fatigue. This would be very uncommon I would think ?
 

jeff_w

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Hi @Dechi

This is very good news about Jennifer. I am so happy for her. After 7 years of hell, what a transformation !

There is something that strikes me though in what she said : she me er experienced fatigue in the 7 years she had ME. Only after her operation did she experience it, from surgery.
No. She's referring to "regular person" fatigue, as opposed to PEM.

I have never heard of anyone having ME without fatigue. This would be very uncommon I would think ?
Jen had PEM for 7 years.

Jen clarified to me that she felt non-PEM fatigue, for the first time, after her fusion and tethered cord surgery. She's distinguishing between PEM and "regular person" fatigue.

After my fusion surgery, I had some "regular person" post-surgical fatigue. That's normal after surgery. In my own case, PEM was gone and never returned. Also, my post-surgical fatigue went away after a few weeks, and I have tons of energy now.
 
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But what struck me the most is that JenB sat in the wheelchair (and other places) with her legs crossed (often known as "Sitting Indian Style") and this was EXACTLY how I sit for as far back as my memory goes. I sit that way even in a restaurant (if at a booth where no one can see). I sit that way at my computer desk, on the couch watching TV, at my dining table, etc. It is without question the most comfortable way to sit vs. when my legs are dangling straight down, I feel all the blood go to my feet and it is a challenge to maintain that sitting position.
I used to have an office job and I was the only one in the whole building who would sit on his swivel chair, in a suit, with his legs crossed under him like that! At the time I thought I was just eccentric. Now I know why.
 

Dechi

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Hi @Dechi



No. She's referring to "regular person" fatigue, as opposed to PEM.



Jen had PEM for 7 years.

Jen clarified to me that she felt non-PEM fatigue, for the first time, after her fusion and tethered cord surgery. She's distinguishing between PEM and "regular person" fatigue.

After my fusion surgery, I had some "regular person" post-surgical fatigue. That's normal after surgery. In my own case, PEM was gone and never returned. Also, my post-surgical fatigue went away after a few weeks, and I have tons of energy now.

Thank you for clarifying. But I’m still confused as you are talking about PEM, which to me is not fatigue. I mean increased exhaustion is part of it, but PEM is not fatigue.

Fatigue is that permanent, 24/7 feeling of physically and emotionally carrying the world on your shoulders.

Very interesting though that she experienced « regular person » fatigue for the first time in 7 years. This sure is a very good sign of something truly amazing going on. That regular fatigue feeling is precious. It actually feels good. :)
 

rel8ted

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No. She's referring to "regular person" fatigue, as opposed to PEM.
I think this is an important clarification. To me, PEM is an all encompassing & relentless fatigue that makes functioning an Olympic event. I vaguely remember regular person fatigue from my early twenties, working 2 jobs and getting a good night's rest because my energy was spent. PEM is definitely more of a feeling of having a mortgage on my energy levels that won't be paid back for decades. :pem:
 

Gingergrrl

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I used to have an office job and I was the only one in the whole building who would sit on his swivel chair, in a suit, with his legs crossed under him like that! At the time I thought I was just eccentric. Now I know why.
I also sat that way at work when I was in my own office typing up my notes or even in staff meetings (but of course never sat that way when meeting with patients). I also thought that I was just eccentric or it was my preference and did not realize the significance of it until many years after I was too ill to work any more.
 

Hope4

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I used to sit "Indian style" as it was always much better for me. When I got so that way was often too hard, I started to get chairs with a lower seat, so that my bottom is a bit lower than my knees. When I do exercises on the floor, the only way I can sit comfortably is "Indian style".

Otherwise, I feel as though my energy is getting away from me, and it feels as though I can't stay sitting up.

For me, the fatigue, the feeling worn out, is as @rel8ted put it. I feel behind on catching up, and it feels as though I won't get caught up, for as far ahead as I can see. And many things can make that much worse. With enough restorative rest, and with lower demands on me, I can get somewhat less behind on that. If the demands on me do not lessen, the rest is not restorative.

@Murph @Diwi9 @Gingergrrl Do you have ways of balancing your energy flows, or how you approach posture, or any ways to resolve whatever it is that requires the "Indian style" sitting? Thanks. :)
 

valentinelynx

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No, headaches are not required. (They also aren’t a required symptom of spinal fluid leaks.) I don’t think you should consider anything to be a required symptom just because it’s on a symptom list. My impression is that required symptoms are generally only a part of diagnostic criteria that are syndromes, i.e., where the pathology is unknown. With most conditions, no symptom is present in 100% of cases.

I never had shortness of breath. I stopped breathing full stop. I don’t know if you have CCI but that isn’t the most important thing. What is important is that you had an accident and now have chronic neck pain. There can be many structural reasons for this, and you should try to figure out why.
Ok, time for me to add another to the mix, I guess... The doctor @Gingergrrl and both see for ME/CFS treatment sent my (supine) cervical MRI (done for C6 radiculopathy a couple of years ago) to Dr. Bolognese, and he read it as possible CCI. I've been wondering whether it could be true because: a. I rarely have headaches anymore, and, b. I rarely have neck pain any more.

I did have a pretty dramatic trauma to the neck many years ago (a few years before the sudden onset of my ME/CFS symptoms), in which I fell on my neck during an Aikido fall (instead of landing on the shoulder and rolling out of it, I landed on my neck, with sudden severe pain and a stunned feeling). For many years after that I had problems with neck pain and spasms. This gradually improved and now only occurs if I spend too much time sitting with a laptop.

So, I'm wondering how essential constant neck pain is to a CCI diagnosis. I have EDS and plenty of other symptoms. Haven't really noticed any breathing issues, or changes in symptoms with neck position. I've had one session of PT with cervical manual traction, and I felt amazing after that, for several hours: like I was high on something good. ;) We'll see if this occurs with repeated exposure, or with home traction & cervical collar use.

On the one hand, it would be great to know there's a reversible cause of my symptoms of the past 25 years... but the prospect of spinal fusion surgery, especially in the high cervical region, is rather terrifying!