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

[GypsyGirl]

Yes, I have had gentle, manual cervical traction by a PT who was given specific instructions as to what she can do and what she can not do...

@StarChild56 Might I ask - do you have a copy or notes of the specific instructions? Would love to take a look and show my PT. Thanks!

 

[Gingergrrl]

I didn't want to speak out too much since I am only a few weeks post op but so far, I believe that what I needed fixed has been fixed.

I am so happy to read your new posts and that you are feeling well enough to read and type again! You are helping a lot of people by graciously sharing your story and I hope that you are able to rest and take care of yourself during this recovery period.

 

[Daffodil]

Your version of how this works is very, very far from reality. Lots of Americans cannot even afford the premiums for the type of insurance you think we all have (most do not have great insurance). If you could afford to pay someone to marry you plus pay the skyrocketing premiums, copays and deductibles, it seems you would likely have paid for the surgery itself.

lol i guess you re right. plus i cant get divorced after...what about when i need revisions. i have heard of cancer patients doing this, though

 

[hezza]

Might I ask - do you have a copy or notes of the specific instructions? Would love to take a look and show my PT. Thanks!

@StarChild56 me too, I have my first appt w/physical therapist in 2 days& could use all the help I can get on this. Only received very vague mention from Dr B of getting cervical traction from a local PT. No specifics, no instructions.

Also may I ask did you feel you got dramatic results from this type of pt traction? Was it temporary (only while on the table) or were there longer lasting effects (after becoming upright again)?

So glad you are recovering well. Thank you so much for sharing your journey!

 

[valentinelynx]

My policy does not even allow balance billing. That is something people don’t usually look into. It was the reason I chose it. Just in case....

From reading about insurance a lot lately, I think that, for at least some insurances, balance billing is prohibited in-network, but all bets are off out-of-network. Meaning, they may pay at a lower rate if you have out-of-network benefits, but balance billing is no longer prohibited. Be sure to read your own policy with care!

 

[valentinelynx]

I have my first appt w/physical therapist in 2 days& could use all the help I can get on this. Only received very vague mention from Dr B of getting cervical traction from a local PT. No specifics, no instructions.

My instructions were vague as well, but Dr. Kaufman asked me to have the PT call him first. I don't know if Dr. B is open to this. On the other hand, in my communication with my PT, she said all PT's know how to do manual traction. But the key thing is to make sure your PT knows how to manage EDS patients. Perhaps this is less important if you have EDS. But I would emphasize the need to be gentle in approaching your neck.

 

[valentinelynx]

Are there things that won’t be covered, or could they reject paying for surgery?

It all depends on what kind of coverage you have. If you have only traditional Medicare Part A without Part B or a Medigap policy then Medicare pays, I think it's 80% of your costs for things like surgery and hospital care. You will pay the other 20% without any out-of-pocket maximum (an amount you pay per year after which you pay nothing that is part of some insurance plans). So, if your care costs $100,000, you will owe $20,000. Also, Part A doesn't pay for office visits or prescriptions. You can purchase Part B, but if you didn't buy it when you first qualified, there's a penalty added to the premium. Part B has a premium, but it's way cheap compared to commercial insurance. But if you buy it after the first qualification period, they add that penalty forever. It's probably not too bad, still, compared to commercial insurance. There's also Part C (Medicare Advantage), which offers HMO type plans mostly, but they are designed for people who get coverage in local areas in the US.

Medigap plans are additional coverage you buy to cover the things that Part A doesn't cover, including that additional 20%. They also cost more after the initial qualification period, and I think they may also apply pre-existing condition exceptions if you miss that period (although I think these expire after a year, maybe?) My memory of the detail is rusty.

Here's the place to find it all out: https://www.medicare.gov/index

 

[MEPatient345]

Thanks @valentinelynx! I have A and B, I kept paying premiums even though am abroad as I suspected something would be available for us first in the US. I never got the medigap or advantage plans but will look into them more. Thanks for the info.

 

[Sushi]

Thanks @valentinelynx! I have A and B, I kept paying premiums even though am abroad as I suspected something would be available for us first in the US. I never got the medigap or advantage plans but will look into them more. Thanks for the info.

Advantage plans are an alternative to government Medicare. They are run by insurance companies—for profit—and have HMO-like networks. I have government Medicare plus a Medigap policy and so far this has paid 100% of my costs for hospital and physician visits. I can go to any doctor or hospital in the US that accepts Medicare.

 

[frozenborderline]

@StarChild56 thank you

(ps anyone who wants to get married i will sign iron clad prenup and pay $$$)

i think it’s possibly illegal to do green card marriages and while I appreciate the situation , pwME who are already sick probably cannot use any legal hassle

 

[StarChild56]

@StarChild56 Might I ask - do you have a copy or notes of the specific instructions? Would love to take a look and show my PT. Thanks!

Oh I am sorry, no I do not (and I don't know exactly what they were). Because my specialist (the one who takes care of most of my illnesses) spoke to the PT directly.

From my point of view it was very "simple" - I lay on the table, I have pillow under my knees and she cradles my head with her hands very gently but firmly. She is sitting on a chair or stool by the top of my head. She starts to "pull" (for lack of a better word straight back. But she also asks how I feel; frequently carefully adjusts her "grip"; we take breaks. Once we worked out what worked best for me - it turned out to be only a total of 10 to 15 minutes of traction usually with one or two short breaks. This helped eliminate any rebound type effects later.

My PT is amazing, though, and she has her doctorate, and she is also a pediatric PT. So she is really, really good.

After I'd been in PT for about 2 months, she called my specialist to talk to him about doing a little myfascial work, which he approved and she then started doing that - which was also really wonderful.

 

[StarChild56]

I am so happy to read your new posts and that you are feeling well enough to read and type again! You are helping a lot of people by graciously sharing your story and I hope that you are able to rest and take care of yourself during this recovery period.

Aaw thanks, @Gingergrrl I really appreciate it so much. And I rest - all day, every day lol.

 

[StarChild56]

me too, I have my first appt w/physical therapist in 2 days& could use all the help I can get on this. Only received very vague mention from Dr B of getting cervical traction from a local PT. No specifics, no instructions.

So sorry that I don't But I would just say, it should be gentle and they should not pull on your chin (I saw a video posted here somewhere and the PT was pulling on the skull and chin) - cradle your skull well with their hands, it should not HURT at all...and they should do nothing really more than pulling straight back (maybe a teeny angle change but not much). Go slowly - she would increase the pull gradually and check in with me. Take breaks to see how you feel.

Try to find the most highly qualified PT possible and I picked mine first based on the Yelp reviews.

Also may I ask did you feel you got dramatic results from this type of pt traction? Was it temporary (only while on the table) or were there longer lasting effects (after becoming upright again)?

Yes - at first, with PT 2 x a week (which I didn't even know if I could manage, I spend almost all of my time reclining in my chair/bed) - I was having 28 or so migraines a month; my migraine meds were only taking some of the pain away so I was still in a good deal of pain - well, they went down by about half and they started responding to meds MUCH better. That lasted for a few months but then started waning and my migraines started worsening and not responding to meds BUT still, they were not as bad as before.

The wonderful feeling I had while on the table while she was doing the manual traction only really lasted while she was doing it; but I would feel a little more relaxed in muscles afterwards for a while. Though sometimes that night my muscles would hurt (rebound perhaps)

So glad you are recovering well. Thank you so much for sharing your journey!

Thank you so much, I appreciate it and I am glad if anything I've shared is useful for another. I've learned so much from PR. Especially @jeff_w , @JenB & @Gingergrrl but many many other posters as well.

 

[valentinelynx]

Advantage plans are an alternative to government Medicare. They are run by insurance companies—for profit—and have HMO-like networks. I have government Medicare plus a Medigap policy and so far this has paid 100% of my costs for hospital and physician visits. I can go to any doctor or hospital in the US that accepts Medicare.

I think, if you can afford a Medigap plan, then that in combination with Part A and B, gives the best coverage, because, as @Sushi pointed out, it's national: you can see any doctor as long as they accept Medicare. I signed my husband up for a Medicare Advantage plan because it was more affordable (no additional premium beyond the standard Plan B premium) and the coverage is pretty good if your needs are low and can be taken care of locally (you don't travel much and don't have exotic illnesses requiring one of four surgeons in the world! ).

 

[valentinelynx]

i think it’s possibly illegal to do green card marriages

Indeed it is illegal to marry expressly for the purpose of facilitating immigration. Here's a summary from a legal site:

Is a Marriage of Convenience Legal?​

Marriages that are entered into for reasons other than love are generally legally so long as the individuals follow all the marriage requirements for a legal marriage, such as having a valid marriage license and being of age to marry. Certainly, people marry for reasons other than for love. However, when two people marry with the intent to commit fraud, such as marrying in order for one person to gain U.S. citizenship, it is illegal.​

​

What are the Consequences of a Sham Marriage?​

Sham marriages carry severe penalties with them. For example, if the sham marriage is based on immigration fraud, penalties can include:​

​

A $250,000 fine;​

Permanent removal out of the United States (i.e. deportation);​

Loss of current immigration status;​

Lifetime ban on obtaining U.S. Citizenship;​

Annulment of marriage; and/or​

Possible conviction of a federal crime.​

If one person created a sham marriage (i.e., one party intentionally deceived the other), the guilty party may have to pay retribution. This is typical if the arrangement resulted in losses to the innocent party. Often the marriage will be legally annulled. Serious offenses may be recorded on one’s criminal record.​

So how does U.S. Citizenship and Immigration Services (USCIS, who evaluates marriages inside the US) know if your marriage is "sham" or not? Well, one way is that they interview you and your spouse-to-be to determine if it seems like you are in a real relationship. Here's one description of this:

"At the interview, questions will typically focus on the history of your relationship, your day-to-day activities as a married couple, and your future plans together. The interview is also an opportunity for you to present extra evidence to prove the authenticity of your marriage.​

​

Check out this list of common interview questions, which can get very personal. It’s important to answer the interviewing officer’s questions honestly, directly, and succinctly."​

If the agents suspect your planned marriage is one of "convenience", then you may be subject to the so-called "Stokes Interview" where they interview you and your intended separately (like interrogating the suspects in a crime to see if their stories match). Some reasons for this are:

In general, there are at least three reasons that a couple would get the extra scrutiny of a Stokes interview:

"USCIS has identified general “red flags” that suggest the possibility of a fraudulent marriage (for example: a large age gap between the spouses, a very short marriage, very different cultural backgrounds, or different addresses showing up for the spouses online).​

USCIS has uncovered potentially adverse evidence about the marriage based on an FDNS investigation.​

During the course of a regular interview, the USCIS officer can choose to switch to a Stokes interview format if new information has come up that they want to explore more."​

The FDNS is The Fraud Detection and National Security Directorate (FDNS) of the U.S. Citizenship and Immigration Services (USCIS). They also conduct surprise site visits (come to the home of the married couple) to investigate the true nature of the relationship. Here's a page on this. It's pretty scary!

And, if you intend to terminate the marriage after getting your green card, you have to be very careful, as that is a red flag. The green card you get from marrying a citizen is "conditional" for the first 2 years, then you apply for a 10-year green card. If your marriage ends before that time, you will have to jump through a zillion more hoops to prove the marriage was legit to begin with. There's also complicated financial implications: the citizen spouse is legally responsible for supporting the immigrant spouse for 10 years after the spouse gets their green card. This is so if the citizen dumps the immigrant, the immigrant won't be dependent on government support (welfare). The governments has put a lot of thought into making this path to citizenship as difficult as they can!

 

[Daffodil]

@valentinelynx lol thanks, i know all that. i am just really desperate is all

 

[Daffodil]

hi all. so i spoke to Dr. Gilete via Skype just now...what a great guy! He said he needs a DMX (i had sent him a partial one) and he wanted a cervical venogram too. He says he has seen cases like mine, where there is extreme fatigue and brain fog but no other upper body symptoms.

I asked if cases like mine have improved after surgery. He smiled and said "yes"

He said pending further tests, instead of entire neck fusion, I could also be a candidate for C0-C2 fusion and disc replacement for the other discs.

I told him I cannot afford surgery and was going to try stem cells. I asked his opinion on this and he said he does not have an opinion because he just does not know how they would work in this situation. I asked him about his success rate when he was using stem cells years ago but he said that was for the lumbar area and I got the feeling he was less than impressed with the results anyway.

I asked if my ligaments are just loose or damaged. I asked if i had hypermobility...but he wanted to wait for the further testing to determine. He says its quite clear from the measurements that I have instability and likely AAI

I asked if there were any other eds-literate neurosurgeons, like in the 3rd world or other countries, but he said no

If anyone knows the details of the venogram required, please PM me....I am waiting for an answer from the surgeons office but I need to book it asap...oh also..... @mattie did you have to go somewhere special for this test? i have called 2 MRI places but they say they do not do it. maybe there is special contrast involved...?

thank you!

xo

 

[Mere72]

I am interested in pursuing CCI/ AII assessment, but I have extreme sensitivity to all medications. I have always said I could never have surgery if I needed it... Are there any others on here who have this high sensitivity (I know a lot of us do), and have been able to tolerate CCI surgery with all the post-op pain meds, etc? I'm afraid my dr will rule it out and won't give me an MRI order, knowing how I react to everything. Dr ruled out a thyroid iodine uptake scan, for this reason. Any thoughts on this would be helpful, both to assuage my own fears as well as helping me present it to my doctor. Also, could this medication sensitivity be caused by CCI/ AAI?
Thank you!

 

[Cort]

A doctor in New York is looking for people in the area who are able to properly assess CCI/AAI - does anyone know of any?

We should make a list of good diagnositicians. I'm happy to put on Health Rising.

 

[Sushi]

I am interested in pursuing CCI/ AII assessment, but I have extreme sensitivity to all medications. I have always said I could never have surgery if I needed it... Are there any others on here who have this high sensitivity (I know a lot of us do), and have been able to tolerate CCI surgery with all the post-op pain meds, etc? I'm afraid my dr will rule it out and won't give me an MRI order, knowing how I react to everything. Dr ruled out a thyroid iodine uptake scan, for this reason. Any thoughts on this would be helpful, both to assuage my own fears as well as helping me present it to my doctor. Also, could this medication sensitivity be caused by CCI/ AAI?
Thank you!

Have you looked into a genetic cause for drug sensitivities? My doctor ordered a pharmacogenetics test and it spelled out why I was sensitive to many drugs and how to adjust the dosing on individual drugs.