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

[Hip]

They may think that is better for privacy reasons, but seem to forget they are on FACEBOOK . Yeah Facebook’s really a safe place to share your intimate medical data.

Indeed! You'd likely have more privacy if you gave your data to the KGB than Zuckerberg!

 

[Daffodil]

i wonder if anyone here has any contact with Jennifer Brea and could share how she is doing now, after the surgery. So far, the only person I know who is in remission from CFS via the surgery is Jeff. I am dying to find more people...do they exist??

 

[humanrising]

I am thinking I will try to get the nerve up tomorrow and bring this up with my GP. I am sure someone has already posted this but this is a long thread and my brain is toast.... is there something that I could print up that might help my sell my case for a MRI to my GP? the bummer is I already had a cervical MRI not that long ago so it ight be a challenge. thanks so much!

 

[Daffodil]

I am thinking I will try to get the nerve up tomorrow and bring this up with my GP. I am sure someone has already posted this but this is a long thread and my brain is toast.... is there something that I could print up that might help my sell my case for a MRI to my GP? the bummer is I already had a cervical MRI not that long ago so it ight be a challenge. thanks so much!

yes show him this paper:

https://www.semanticscholar.org/pap...rden/1b3716733e097c37983a2e403a373260f1ea1d34

also you can tell him about jeff, who has a blog..

i have only begun researching this so i am sure others will have more suggestions

 

[humanrising]

thank you!!!!!

 

[Daffodil]

tell him you need an upright MRI maybe....

 

[Doua]

Anyone in this thread experience chest pressure as a symptom of cci?

I've had ME for over 4 years now but have developed some new and strange symptoms lately.
For the past few months, I have not been able to lay flat, whenever I do I feel severe chest pressure with a fluttering pulse in my midchest. My insides start to shake and I loose my breath, and it keeps getting worse until I sit up. Turning to the right or left side doesn't help, actually makes it worse. I usually put a bunch of pillows and try to sleep sitting up but even leaning my head back on the pillow while sitting triggers the symptoms sometimes. It seems that I have to sit up at all times and keep my head tilted forward. It's really brutal and exhausting I haven't been able to sleep well.
I got an Xray for my spine yesterday and waiting for the results. My doctor said we need to rule out a spine misalignment.
Do those symptoms ring a bell for anyone here?

 

[frozenborderline]

i wonder if anyone here has any contact with Jennifer Brea and could share how she is doing now, after the surgery. So far, the only person I know who is in remission from CFS via the surgery is Jeff. I am dying to find more people...do they exist??

Like Jeff said—for Jens sake , be patient. Understand you want to know outcomes. Unfortunately there’s not much published research on cervical surgeries and ME/CFS. There is research on the overall outcomes of fusion surgery but not specifically in ME/CFS patients. In that sense we’d all be either pioneers or guinea pigs... although the latter is maybe harsh for a procedure in which the overall safety and recovery is studied and tested a lot, just not in our disease.

It must be awful to go through a major surgery and have people be clamoring to know how you’re doing as a case study ... not as a person who people are concerned w. Jen is in difficult position as advocate who is public about her health journey , lets all try and not make that worse. For overall outcomes, you can look at the Fraser Henderson stuff I posted earlier. For ME/CFS outcomes, there is nothing really to go on. It’s a scary and exciting area

 

[frozenborderline]

thank you!!!!!

Just read Jeff’s website. mechanicalbasis.org Has all The info u need

 

[Gingergrrl]

For the past few months, I have not been able to lay flat, whenever I do I feel severe chest pressure with a fluttering pulse in my midchest.

@Doua I have not had this particular symptom but when I read it, it made me think of "Prinzmetals Angina". Have you Googled this to see if it matches at all? I am hoping your doctor figures it out soon (whatever is causing it) and you get some relief. It sounds horrible.

 

[ashleyO]

Also Ashley is in LA and needs help figuring out treatments and testing without waiting until her Mountain View appointment ... if anyone else here is in la and has suggestions for neuros or pots docs , or better pcp ...

hi! I am based in LA as my friend mentioned. I am new to this forum and using forums in general so I'm unsure how to talk to anyone on here but thank you for any advice anyone has

 

[ashleyO]

Hi @Mary! I noticed that you had not been around lately and was hoping that you were okay. At first when you said that my post was very good and informative, I got confused which thread I am in and had to scroll up to see what I'd written earlier



I wish I had good suggestions for LA and my main doctor is also up in Mountain View. I have been up there 5-6 times and now we do phone consults (and e-mails). I have an excellent Endo in LA who treats my Hashimotos/Thyroid and I have an amazing MCAS specialist (he is an allergist/ immunologist) but sadly he is retiring in the next year and not taking new patients.

I still do not have a local PCP (not for lack of trying!) and I saw three Neuros back in 2016 (two in LA and one up at Stanford) and all were horrific. I inquired everywhere I could think of back in 2016 (even in several FB groups) trying to find a good neuro in LA but never found one and I finally gave up.

As far as POTS doctors, my former Cardio (here in LA) was decent and is a very nice man. I would recommend him although ultimately he did not help me (but he tried). I also did a one-off consult with a POTS Cardio at Scripps in San Diego, and he was a nice man and I probably would have gone back to him, if he was not 3.5 hrs south of me. If you want the name of my former POTS Cardio, I can send it via PM. But the two docs who literally gave me my life back are my main doc up in Mountain View and my MCAS doctor.

I wish I could be more helpful!

hi! I would love to PM about any suggestions you may have for LA doctors. I'm hoping to find a better PCP here than the one I have (he doesn't seem to recognize CFS beyond prescribing me antidepressants) and am open to any other doctor I can work with, especially those who take my insurance. I will be seeing Dr. Chheda at Mountain View in April and have an appointment with Dr. John Chia (waitlisted until May 2020 but hopefully getting labs will help). In the meantime I think I need a doctor or specialists who can work with the Mountain View doctors to help give me complete care here at home. Would your MCAS specialist recommend any others who are actively practicing and could help me? Thank you so much for your help

 

[Daffodil]

@humanrising I came across another paper which might be interesting to show doctor if brain fog is a big issue for you:

https://www.ncbi.nlm.nih.gov/m/pubmed/20671380/

 

[Daffodil]

Hi all.
It turns out that Dr. Gilete's report came in much earlier than I thought. The administrator who emailed the report, told me that the doctor thinks that in my case, cervical instability is quite clear. He recommended I get a DMX test to get a better idea of what is going on. As it stands, I appear to fit the criteria of CCI and atlantoaxial subluxation.

There was something in the report saying I might need a type of fusion from C0 - T1. I dont understand...isnt that 10 levels?

I have instability and herniations all the way down it looks like

I was so hopeful before but now I am overwhelmed. I cannot afford a 10 level fusion ever...there is no way. I didnt even know they could do a 10 level fusion. How would I move?

I have no upper extremity symptoms - no neuropathy, no headaches, nothing but brain fog and ME/CFS. No one will do anything for me locally.

I will arrange for a DMX. I would like to get another consultation but it looks like I will have to come up with a lot more money because the American doctors are very expensive and probably will make me travel to see them.

If my neck is that bad, why don't I have more pain or nerve problems or headaches? I just dont understand.

I emailed some questions and will see if the doctor will answer. I asked if there is a traction device I can use to find out if stabilization surgery would clear my brain fog? I asked what he thinks about this occurring right after EBV infection.

I will keep you posted

 

[Daffodil]

hi all. i spoke to the admin person and she suggested a cervical collar though it is possible it wont work while surgery will. i asked if i can do disc replacement combined with fusion and she said you can but what the doctor suggested would be best (this is all pending the DMX).

if i do fusion, guess i wouldnt be able to move my neck much after and it would cost 58K Euros. Disc replacement and fusion is more expensive

i remarked that c0 - t1 fusion sounds extreme but she said if i do 1 or 2 level fusion, i would probably require more surgery later on. if i see an american specialist, he might suggest this because people have insurance to cover subsequent surgeries

this is all hypothetical because it is highly unlikely i can get the money to do this without risking losing the condo i live in. huge risk to take when i dont know if it will get rid of my brain fog

i asked why my neck pain has gotten better over time but she could not explain this.

for the time being, i will order a cervical collar and get a DMX.

thanks for reading
xo

 

[frozenborderline]

hi all. i spoke to the admin person and she suggested a cervical collar though it is possible it wont work while surgery will. i asked if i can do disc replacement combined with fusion and she said you can but what the doctor suggested would be best (this is all pending the DMX).

if i do fusion, guess i wouldnt be able to move my neck much after and it would cost 58K Euros. Disc replacement and fusion is more expensive

i remarked that c0 - t1 fusion sounds extreme but she said if i do 1 or 2 level fusion, i would probably require more surgery later on. if i see an american specialist, he might suggest this because people have insurance to cover subsequent surgeries

this is all hypothetical because it is highly unlikely i can get the money to do this without risking losing the condo i live in. huge risk to take when i dont know if it will get rid of my brain fog

for the time being, i will order a cervical collar and get a DMX.

thanks for reading
xo

I would not suggest trying to compromise on whatever surgery the doctor suggests. However , maybe you can spend some of your money to obtain a lawyer or insurance caseworker or something to help you figure out if there’s some way you can get US insurance

 

[frozenborderline]

It’s not ideal but ppl from outside the us have also crowdfunded for these surgeries , sometimes with success. If you have such a solid, non clinical diagnosis it may make raising the money a tiny bit easier than raising money for me/cfs in general

 

[Daffodil]

I would not suggest trying to compromise on whatever surgery the doctor suggests. However , maybe you can spend some of your money to obtain a lawyer or insurance caseworker or something to help you figure out if there’s some way you can get US insurance

unfortunately, the only way would be to pay someone in USA to marry me and then wait until i am eligible for medicare. i am not sure how it works because great doctors like henderson may not take that kind of insurance. i have spoken to a lawyer about this stuff before.

this means i will have to contact my father and ask for help. this will not be successful and the phone call alone will make me so stressed and sick, i will be in bed for weeks. this is how it works with him. but know i have no choice but to ask. he has a million or 2 and refuses to help at all (i said some REALLY bad stuff to him in the past)

oh man. this is major, life altering surgery. i dont know. anyway, i guess i will get the dmx and try to quiet my mind for the time being!

thanks for the help, all!

 

[frozenborderline]

unfortunately, the only way would be to pay someone in USA to marry me and then wait until i am eligible for medicare. i am not sure how it works because great doctors like henderson may not take that kind of insurance. i have spoken to a lawyer about this stuff before.

this means i will have to contact my father and ask for help. this will not be successful and the phone call alone will make me so stressed and sick, i will be in bed for weeks. this is how it works with him. but know i have no choice but to ask. he has a million or 2 and refuses to help at all (i said some REALLY bad stuff to him in the past)

oh man. this is major, life altering surgery. i dont know. anyway, i guess i will get the dmx and try to quiet my mind for the time being!

thanks for the help, all!

https://www.internationalinsurance.com/expatriates/usa.php
I found this just by googling. Are you absolutely sure you cannot get US health insurance without marrying someone ? I know that I am ignorant about this, so I’m happy to be corrected , but it seems as if there must be some way for people to get this when visiting the US, since we don’t have nationalized health care and they need to get treatment somehow. Even if it’s complicated, if there’s the most remote ghost of a chance that you can get health insurance that would cover this surgery, that’s a way better idea than trying to pay out of pocket for a cheaper surgery. Or you could try the stem cell treatment

 

[Daffodil]

@debored13 unfortunately, i am absolutely sure. the insurance people get while traveling to the USA would not cover pre-existing conditions. there are some that might cover acute-onset of the pre-existing condition but that's it.

C0 - T1 fusion is done mainly for people with RA who have a lot of pain or with people with Down's Syndrome and such. So there must be other doctors doing, right?

The only place I can think of where there is expertise and its cheap is India. However, we were going to go there once for my mom's laminectomy and a bunch of Indian relatives called us and told us not to go, that she would end up dying in the hospital lol. They all said when you go into the hospital there, you dont come out! This is a popular belief there but I dont buy it. Some of the doctors there have been trained in the USA.

Anyway, I am getting carried away again lol