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

[Daffodil]

well i am more confused everyday. most of my measurement numbers are normal in terms of brain stem compression but they show that i can flex and extend more than most...so i am just more bendy. the incomplete DMX showed no ligament damage. so can AAI (brain stem compression) be present solely in the presence of loose but undamaged ligaments?

but then dr. G said BAI of 8. i would like at least 2 sources to tell me i have AAI.

although i dont know why because ....surgery is going to be almost impossible to get. oh man, this is the worse treatment for CFS that could have come along. after all these decades of suffering and suicide, THIS is the cure??? a cure most of us cant even get?!! WTF Is this?!?!

and if my ligaments are not damaged, no point in stem cells either.

edit:sorry i am rather emotional at present

 

[StarChild56]

i notice most people are having 1 or 2 level fusions. i wonder if you all have any issues showing up lower down in the cervical spine at all...like some disc herniations or something. or...is your whole neck totally OK except for the upper levels?
thanks

Unfortunately, I have a lot of problems lower down. I have numerous herniations (severe ones, indenting the thecal sac); I have some stenosis; I have some congenital narrowing; numerous bone spurs...dessicated discs...etc. My PCP said that I had the worst cervical MRI she'd seen in all her years of practice (but Dr. B said that mine was the best looking one he'd seen that day so you know it is relative). Just saying that to say, I've had bad neck problems unrelated to CCI/AAI for some time.

 

[StarChild56]

I am expecting the same for @mattie and @StarChild56

 

[StarChild56]

Do you need really deep pockets, a willingness to go into debt, or really good private health insurance in the US, possibly through a spouse/domestic partner or parent, to consider going down this diagnostic route, as opposed to an Obamacare plan or Medicare.

It depends greatly on who/what/where I'd imagine...but I can say that I have Medicare which will pay for probably most of what my primary insurance does not pay (less my deductible - co insurance amounts - which are way less than I would have guessed). I have run of the mill health insurance through my husband's employer and then also Medicare.

Also, the amount you have that is out of pocket max on your policy will help you figure out your - well max out of pocket, lol. Now, if a doctor or hospital is out of network they do not have to abide by that, FYI (but I have found that some doctors WILL accept what the insurance pays vs balance billing).

 

[StarChild56]

You can petition your insurance to cover an out-of-network doctor for necessary medical care

Yes, and in my case and other experience, the doctor/hospital put in for the authorization to your insurance company (not you).

 

[MEPatient345]

I have Medicare which will pay for probably most of what my primary insurance does not pay (less my deductible - co insurance amounts - which are way less than I would have guessed). I have run of the mill health insurance through my husband's employer and then also Medicare.

I have Medicare too and think Bolognese takes it. I have never used my Medicare benefits as have been living abroad. Are there things that won’t be covered, or could they reject paying for surgery?

 

[StarChild56]

I am not having anyone pull on my head, that could make things so much worse!

I hope I am not derailing but in my case, my specialist did in fact lift my head up while I was seated and it felt wonderful to me, I did not want him to let go. During invasive traction, I absolutely loved having my head pulled up and the higher the pressure the better it was.

 

[StarChild56]

I don’t see why two people whose ICC-ME was alleviated by treatment for cci, should need to put a disclaimer saying something that was obviously not true in their case. I’ll leave addressing the rest of this to others, as I’m low on spoons at the moment

This can not be overstated.

Also - my neurosurgeon told me specifically that this surgery would not "cure" me. Emphatically. Immediately. My neurosurgeon explained what the limits of what this surgery are...I would guess that all of the few neurosurgeons that are able to do this surgery would behave in a similar manner so there would be no mistaking that this surgery is not a "cure" for anything but can help with specific symptoms from CCI/AAI.

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.

 

[StarChild56]

Manual traction with a pt is not with a “weight” as far as I know. With a skilled pt it can be done very gently, and they can work up to greater amounts of force. Over time it can worsen laxity and also have a rebound effect after the initial benefit , but it’s also not as extreme as what you’re saying

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]

I have Medicare too and think Bolognese takes it. I have never used my Medicare benefits as have been living abroad. Are there things that won’t be covered, or could they reject paying for surgery?

Yes, Dr. Bolognese accepts Medicare.

You need Part B, however - do you have part B?

There is a deductible for Part B - somewhere around $1300 I believe.

Insurance can, theoretically, not cover or deny treatments yes. But the provider (so Dr. B's office, the hospital, the anesthesiologist) would get the authorizations BEFORE they would do the surgery. So you will have a good idea of what you will have to pay out of pocket. Many hospitals also will do a payment plan.

I hope that was helpful. I know it can be very scary and overwhelming.

 

[MEPatient345]

@StarChild56 thank you! Yes I have part b. I hope you are getting along ok post op!! Sounds good for you so far.

 

[Rufous McKinney]

This: swamped now Alert- needs to get widely distributed over in Medical School Land.

I remember college and graduate school. I went to school with Pre-Med majors. Most have no clue: why they are there, what they will do: they just are very motivated to do it.

so: outreach to students, even in biology departments..we really need to just create some one pager and get it widely posted with thumbtacks on all those bulletin boards which sit outside Department head doorways.

 

[StarChild56]

I cannot render an informed opinion on this, not being trained in the field of neurosurgery. @StarChild56 's experience and another person's, I think it was @JenB, was that removal of the invasive traction caused a devastating return of symptoms, but it wasn't clear that it was an exacerbation. If the traction doesn't improve your symptoms, however, then removing it probably wouldn't worsen them. And, (ok, here's an opinion, but it's not a very informed one, just logical, I think): if having traction and then removal of traction exacerbates your symptoms by further weakening your ligaments, you could use a hard collar while carefully working to improve your upper cervical musculature to assist the weak ligaments. I would definitely ask your surgeon about this concern before undergoing traction.

You are spot on. It was AWFUL when I was released from the traction, I am embarassed to say I dissolved into tears immediately. However, that was a temporary worsening of symptoms. Once I laid back down, it went down to my normal symptoms.

I do know that the neurosurgeons @jeff_w is recommending are experienced with EDS patients, which is very important. EDS can affect surgical healing and it is essential that your surgeon is aware of the possible issues before operating.

Could not agree more. Also if you have MCAS, MCAS (which Dr. Bolognese and his team are also accostomed to).

 

[bombsh3ll]

I hope I am not derailing but in my case, my specialist did in fact lift my head up while I was seated and it felt wonderful to me, I did not want him to let go. During invasive traction, I absolutely loved having my head pulled up and the higher the pressure the better it was.

what about when the invasive traction came off though, how were you between them and surgery? Because I would have a few months between trying a halo & if it worked, selling my house to fund surgery. I am worried this may loosen things further.

B xxx

 

[StarChild56]

@StarChild56 thank you! Yes I have part b. I hope you are getting along ok post op!! Sounds good for you so far.

That is good!

Thank you very much and yes, I believe so far so very very good. Tough, too but good.

 

[StarChild56]

what about when the invasive traction came off though, how were you between them and surgery? Because I would have a few months between trying a halo & if it worked, selling my house to fund surgery. I am worried this may loosen things further.

B xxx

I only had a day to wait - the next day I had surgery BUT my symptoms returned to their normal level shortly after being released from traction (where at first it was horrific, the return of symptoms so quickly and worsened). So my assumption is that it doesn't change your symptoms permanently. But I am not a doctor and I only had a day to wait.

 

[StarChild56]

edit:sorry i am rather emotional at present

I'm really sorry that you are going through all of this. I wish we all were just able to get good and appropriate medical care and treatment. Everyone. Oh, and timely, too.

 

[Daffodil]

@StarChild56 thank you

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

 

[rel8ted]

It depends greatly on who/what/where I'd imagine...but I can say that I have Medicare which will pay for probably most of what my primary insurance does not pay (less my deductible - co insurance amounts - which are way less than I would have guessed). I have run of the mill health insurance through my husband's employer and then also Medicare.

Also, the amount you have that is out of pocket max on your policy will help you figure out your - well max out of pocket, lol. Now, if a doctor or hospital is out of network they do not have to abide by that, FYI (but I have found that some doctors WILL accept what the insurance pays vs balance billing).

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....

 

[rel8ted]

@StarChild56 thank you

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

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.