The federal government in Germany must grant surgery to people with ME/CFS and CCI/AAI

[Silvia-Dortmund]

ME/CFS - who we are!
Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a neuroimmunological multisystem disease. Typically, we suffer from extremely impaired performance accompanied by severe physical and mental fatigue lasting at least 6 months. Depending on the degree of severity, the disease leads to far-reaching disability, as well as confinement to bed and the need for care.
It is estimated that there are 250,000 sick people in Germany; including 40,000 children.

ME/CFS - the rescue operation, which is very expensive and so far only offered in Barcelona
So far, many patients have had the surgery on the unstable cervical spine in Barcelona with Dr. Fund Gilete through fundraisers and/or private funds. Unfortunately, this is not possible for most of the sick people, because they have neither a lot of money nor many friends or allies who can campaign for donations or other campaigns that bring in money due to the long and serious illness.
It cannot be denied that the ME/CFS patients who have been operated on have a good quality of life again and can participate in life. In this regard, there is ample information showing that ME/CFS patients have experienced remission after surgery.

Link to Petition

Please sign and share share share. Thanks!

 

[Rufous McKinney]

there is ample information showing that ME/CFS patients have experienced remission after surgery.

Can you suggest where such information resides?

I feel my cervical condition is the KEY to ongoing worsening of the condition. And nobody is ever going to treat it.

 

[Silvia-Dortmund]

https://www.frontiersin.org/articles/10.3389/fneur.2020.00828/full

https://centenoschultz.com/symptom/chronic-fatigue/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7485557/

https://www.healthrising.org/blog/2...fibromyalgia-pots-craniocervical-instability/

https://me-pedia.org/wiki/Craniocervical_instability

I was sold CCI/AAI on upright MRI; After fighting with a lawyer for 1 year that the health insurance would cover the costs. In the end they HAD to accept it.

You probably know the stories of Jeff and Brea, of which there are numerous by now; But I'm sick myself and don't have everything in my head. from Dr. Giletet also has some videos of successful operations on YouTube.

 

[linusbert]

very interesting, thanks!

so why can't you do the rescue operation? is it money (how expensive is it?)? is it logistics and exhaustion of prolonged travel? probably both.

i was thinking when i would go long routes on main land. i'd ask a friend to rent a Wohnwagen (caravan) and carry me along while i am resting in bed.
of course thats money again.

what are your neurological issues you attribute to the neck?

 

[Silvia-Dortmund]

It's definitely the money. The operation alone costs around 70,000 euros plus. Flight and stay in the clinic.
My neurological problems include: trigeminal neuralgia (like someone stabbing my upper jaw with a knife). ringing in the ears. Tingling in the arms and numbness. Severe pain from the neck to the top of the skull.

 

[Silvia-Dortmund]

https://www.facebook.com/pages/category/surgeon/Dr-Gilete-109903630688668/

https://www.youtube.com/channel/UCBtqRJMiIkhDVdK8eVbp0Tg

https://www.youtube.com/channel/UCjxJWHcca0aJrwuUJy1tLVQ

https://www.youtube.com/watch?v=-HAoeIvu6iM

Elevating the head can provide relief, there are special home traction devices that are not very expensive; or you have someone who can try to pull your head away from your body a little when you are lying down. I also wear a brace to straighten my neck; it brings relief when suffering from an unstable cervical spine.

 

[linusbert]

Elevating the head can provide relief, there are special home traction devices that are not very expensive; or you have someone who can try to pull your head away from your body a little when you are lying down. I also wear a brace to straighten my neck; it brings relief when suffering from an unstable cervical spine.

can you recommend certain products. i am muscle impaired, i cannot build up pressure, so it must be a easy design.
with brace you mean "Nackenkrause"?
i really would like that somebody pulls me on the head, i really have the feeling that i want that, but nobody does. my girlfriend is to soft, i weigh 130kgs and she like 40kg. my physio doesnt want to manipulate. the nursinghome stuff in general doesnt touch people. so nobody here who could do that.

It's definitely the money. The operation alone costs around 70,000 euros plus.

70k... thats a walk in the park for severe disabled people. but then again i just did gene testing for 20-30k but the insurance company paid that.

and i've just read it might not be just one OP, it also can fail / be ineffective.

rigeminal neuralgia (like someone stabbing my upper jaw with a knife). ringing in the ears. Tingling in the arms and numbness. Severe pain from the neck to the top of the skull.

i do not have any pain issues. what i do have though is that tingling and numbness if i put my head in a "straight" position like sitting on a wall and putting the head leveled against the wall. this gives me slight numbness in the face/lipps and sometimes fingers.
what i also have newly are insane episodes of doom'ing headpressure especially in the ear with all kinds of neurological stuff going on, nausea, confusion, brainfog, light and smell sensitivity, tinnitus. i get this if i sit "prolonged" in a position where i have a pillow on my head and look down on my lap where the laptop sits (in bed).
so i get problems either by lying down 180 or in this bent neck sitting position.
i must also say i have a muscle disease where they tighten up, cramp and weaken pretty fast.

i also hear noises in that neck area which sound like a "Zischen" like fluid or gases are moving through.

could it be that kind of neck problem?

 

[Silvia-Dortmund]

https://www.ebay.de/itm/31447320903...&brand=Markenlos&_trksid=p2047675.c101224.m-1

I built something similar here myself and attached it to a door with a coat hook, it works quite well; but they are also cheap on ebay.

That's why I have the petition, so that the state takes care of it and either provides money or ensures that we can have surgery on health insurance companies in Germany. You have a risk with every operation.

Your problems sound 1:1 exactly like mine. Maybe you can get a prescription or buy an orthosis. The "Vista Aspen" are very good, they can be adjusted in height and try if your head is lower than your body, whether it's better then. You should do an upright MRI.

 

[linusbert]

You should do an upright MRI.

nobody does this, i even told them i pay myself and they wouldnt do it. no medical indication... this whole neck stuff is alternative medicine... aka psychosomatic in germany.
i really wonder how you got that far in this country. maybe you had luck that your first doctor wasnt a moron and sabotaged every follow up diagnostics.

as long as they do not do the operation in germany and pay for it ... or at least accept this as a real non-mental condition i'd rather wait it out.

for me its even more complicated how to handle that diagnose. is it the cause of everything? or is it a result of myopathy?

That's why I have the petition, so that the state takes care of it and either provides money or ensures that we can have surgery on health insurance companies in Germany. You have a risk with every operation.

already signed.

Your problems sound 1:1 exactly like mine.

you also get this insane ear/head imploding pressure?
how do you fix this when its acute?

 

[Silvia-Dortmund]

I took out legal protection insurance, went to the lawyer and told him that I urgently needed this investigation. After a year, a letter came from the health insurance company that they would pay for this examination. In the private practice in Frankfurt I needed no referral, no indication, nothing. They do it for anyone who pays for it.

Thank you for signed.

Yes, I also have this pressure, I read somewhere that the pressure from the liquid is too high here. A friend who once put her head on my head while watching TV heard sounds like water in my skull. No doctor believes me, although I heard it myself with a stethoscope.

I don't know where you live, maybe you want to contact Frankfurt about the Upright!?

https://www.mrtfrankfurt.de/

The practice is near the train station.

 

[linusbert]

I took out legal protection insurance, went to the lawyer and told him that I urgently needed this investigation. After a year, a letter came from the health insurance company that they would pay for this examination. In the private practice in Frankfurt I needed no referral, no indication, nothing. They do it for anyone who pays for it.

how much did it cost?

heard sounds like water in my skull

if i tell this one of my doctors they would recommend me to drink less water.

I don't know where you live, maybe you want to contact Frankfurt about the Upright!?

https://www.mrtfrankfurt.de/

The practice is near the train station.

i will have a look at this.

i wonder what position makes most sense? i have "up right" in sitting or standing the least problems. for me its more in 180degree lieing position or in this weird bent kneck position but then also only after a certain time, i guess until muscles tighten up.

 

[Silvia-Dortmund]

if i tell this one of my doctors they would recommend me to drink less water.

The upright pictures are taken in function, i.e. in the position in which the head is also "used", e.g. bent forward, tilted to the side, etc.
The pictures were taken on 2 days in a row and it was exhausting, but it was worth it. It costs around €1,500. The practices there are very nice, but there are several such practices in Germany, if that's too far, maybe just google "Upright MRT"

 

[Silvia-Dortmund]

Upright MRI is available in:
Frankfurt, Köln, Hamburg, Hannover and München.

"Exact diagnosis through the natural weight load"

 

[lenora]

Hello @Silvia (I have a daughter named Sylvia)......Well, this is certainly news!

Years ago I had ACM (Arnold Chiari Malformation) surgery. It was actually quite easy compared to the spinal cord (cut into) that I had years before. This was probably 40 years ago. I would say I came out of the ACM surgery without too many problems, but the first was murderous and left me with extreme chronic pain.

I know Jeff White is doing well, but don't know about Jen Brea....one hears (& that's all, I don't know her). My point is this: Any surgery is something to be carefully and thoughtfully considered. Please do that, that's all. Talk to as many people as possible to find out the pitfalls. ACM surgery was totally new when I had it, and yes it helped me, but also left some residual problems.

I've never voluntarily had a surgery since that time....sure I had to have emergency intestinal surgery, had stents implanted after a heart attack (& I was in a coma), but I want to know as much as possible, am now wise enough to ask all questions and find out how long the recovery will be. Also different therapies that may or may not be needed.

I wish you all of the very best but want you to be a careful patient. No one is getting close to my neck, brain or spine again....and I consider myself fortunate to have had the surgery. Yours, Lenora

 

[YippeeKi YOW !!]

Don't know if this is of interest, but just in case .... @Jyoti

 

[Silvia-Dortmund]

Hello @Silvia (I have a daughter named Sylvia)......Well, this is certainly news!

Years ago I had ACM (Arnold Chiari Malformation) surgery. It was actually quite easy compared to the spinal cord (cut into) that I had years before. This was probably 40 years ago. I would say I came out of the ACM surgery without too many problems, but the first was murderous and left me with extreme chronic pain.

I know Jeff White is doing well, but don't know about Jen Brea....one hears (& that's all, I don't know her). My point is this: Any surgery is something to be carefully and thoughtfully considered. Please do that, that's all. Talk to as many people as possible to find out the pitfalls. ACM surgery was totally new when I had it, and yes it helped me, but also left some residual problems.

I've never voluntarily had a surgery since that time....sure I had to have emergency intestinal surgery, had stents implanted after a heart attack (& I was in a coma), but I want to know as much as possible, am now wise enough to ask all questions and find out how long the recovery will be. Also different therapies that may or may not be needed.

I wish you all of the very best but want you to be a careful patient. No one is getting close to my neck, brain or spine again....and I consider myself fortunate to have had the surgery. Yours, Lenora

Thank you for sharing your experience here. I have been lying in a darkened room since 2010, I cannot tolerate any noise or light. I can't get out on the street and I don't have any social contacts anymore. I would rather be dead than lie here alone in bed for another 13 years. I am not married, have no children. I am all alone with this, so the decision is easy.