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

[lenora]

@MikeC....you're more than welcome. If you do go to find out how much the test will cost, tell them you want to negotiate a price before you have it. Our system is supposed to be changing without having to do all this dancing...but I don't know when. Even doctor's don't know how much they can expect from an office visit. The bill you receive shows how much they're trying to charge the insurance co., but often the price is considerably lower (much lower). Yours, Lenora.

 

[Diwi9]

Thank you Lenora.

I had to pay for my upright MRI that included flexion, extension, and rotation. I was expecting to pay at least two thousand dollars for the imaging considering what my insurance had paid for prior MRI's. However, I was only charged $600...which surprised me Perhaps call around and see if you can obtain competitive estimates if you are unable to get insurance to cover the imagining.

 

[MikeC]

Oh $600 is not so bad. Hopefully I can find something around that range in Northern CA. So far the only place I know of is the East Bay Upright MRI.

 

[Strawberry]

Ty

@MikeC if you get in can you message a mod for me? Ive been waiting for months.

i tried for at least 3 months. Hopefully you get in soon, I know they seem to be letting lots in now, but I’m a newbie. I can ask quest if you still aren’t in.

 

[MikeC]

Hi Strawberry, my request is still pending. If you can let someone there know, that would be very helpful. Thank you.

 

[Jyoti]

@MikeC --I am pretty sure you have found the only option. Although it was a year or so ago, I spent a fair amount of time researching the possibilities and it was East Bay Upright MRI. I am with @Diwi9 in suspecting you can negotiate a decent price if you are paying out of pocket.

Best luck with it.

 

[MikeC]

Ah ok, I guess I'll try to see them soon. Thanks.

 

[lenora]

MikeC, @Jyoti and@ Diwi9 are both correct. Almost any medical facility will negotiate prices today. Crazy, isn't it?

Even if you're employed, the cost of premiums is going out of sight. Companies are now frequently just covering the person working for them and giving a small amount for the remainder of the family to find their own insurance. Of course there is a big price gap in what is given and how much has to be paid for new insurance. Plus it's all so conditional.

Everyone should be aware of this: Just b/c you're told that a test or surgery costs X amount of $, it can be negotiated to half or way less in some cases. You do have to watch out and request that anesthetic costs be included if you have to have surgery. That's the final surprise after you think everything has been taken care of. One day you'll receive your mail....and there it will be, their cost for services. If the hospital can't include the cost of anesthesia, then call and try to make a negotiation with them also. For some reason, they always charge and receive the full amount. I'd work hard on all of them.

I hate to make this longer, but also get the name and write down the date these negotiations were made. Get the name of the person right up front. Good luck with both the cost and test results. Yours, Lenora.

 

[Likaloha]

I just had an MRI that I specifically asked for my chiari malfunction to be scanned with my cervical vertebrae to compare to scan from 10 years ago. I got info from all the rest of the scan, but can get no update on my chairi results. Frustrating, but at least I know how bad my neck and back truly are!

 

[lenora]

Likealoha.....It's possible that they've put in an order to have the scans sent to them. Usually at about 10 yrs. (or to be truthful, I don't know when it is today), the old scans are sent to a warehouse. It generally takes time to sort through and find exactly what's required. Ask for copies of both and the radiology reports. Also ask your doctor to read them himself.

I should tell you that ACM Repair surgery is not always the best thing to have done. Sometimes you trade one problem for another, so bear that in mind when talking to your doctor. Have you found a specialist? If you looked under Arnold-Chiari Malformation I'm quite sure you'll find a group that should have this information for you. If not, you could always try the American Syringomyelia Alliance Project...ASAP and see what it's providing these days. This was the group I first volunteered with and, at that time, ACM and SM were together. I think ACM has since broken off from the original group. The same with EDS (Ehler-Danlos Syndrome).....that was added as it became apparent that more and more people had collagen problems. So you may just have to do some digging around, but do it....it's worthwhile. I'm in another group now, but it wouldn't do you much good, so that's why I haven't given you the name. Phoenix is for ME which often remains after surgery. Tread carefully...it's muddy out there. Wishing you well...Yours, ,Lenora.

 

[valentinelynx]

Hi @valentinelynx. That's not a dumb question at all.

LOL. I agree it's not a dumb question. But it was @bensmith 's question, not mine. You probably saw my name next to my response to his question. I'm sure I've done the same at some point!

 

[lenora]

Hi @valentinelynx. Well, my answer was dumb. I don't know where the question came from (Thread), but I appreciate that you called my attention to it. Beautiful cat you have there...very sweet looking. Yours, Lenora.

 

[Likaloha]

Likealoha.....It's possible that they've put in an order to have the scans sent to them. Usually at about 10 yrs. (or to be truthful, I don't know when it is today), the old scans are sent to a warehouse. It generally takes time to sort through and find exactly what's required. Ask for copies of both and the radiology reports. Also ask your doctor to read them himself.

I should tell you that ACM Repair surgery is not always the best thing to have done. Sometimes you trade one problem for another, so bear that in mind when talking to your doctor. Have you found a specialist? If you looked under Arnold-Chiari Malformation I'm quite sure you'll find a group that should have this information for you. If not, you could always try the American Syringomyelia Alliance Project...ASAP and see what it's providing these days. This was the group I first volunteered with and, at that time, ACM and SM were together. I think ACM has since broken off from the original group. The same with EDS (Ehler-Danlos Syndrome).....that was added as it became apparent that more and more people had collagen problems. So you may just have to do some digging around, but do it....it's worthwhile. I'm in another group now, but it wouldn't do you much good, so that's why I haven't given you the name. Phoenix is for ME which often remains after surgery. Tread carefully...it's muddy out there. Wishing you well...Yours, ,Lenora.

Thanks for the reply! Actually surgery is a last resort for me....same for my herniated discs and the rest of the problems that I am trying to deal with!

 

[Prefect]

Can you have craniocervical instability without headache or neck ache?

I'm suspecting this because:

-I constantly feel like objects around me are swimming around, especially when I'm standing. I get some relief by crossing my arms while standing, which I guess is because it stabilizes my spine.
-I've been told by a neuro-opthamologist my eye balls keep shaking when I'm trying to focus, and my head too
-I'm dizzy quite often, have balance problems, and when I walk I feel like the ground is tilted
-I don't do yoga but on any given day I can walk into a yoga class and do everything they do with ease. Too flexible for a guy. But not flexible enough to have EDS. I'm 51 and never hand a joint dislocation in spite of periods of intense exercise. My skin is not stretchy.
-My body is never tired. I don't get PEM
-I have cognitive and concentration problems
-I have constant severe tinnitus
-My heart rate is much faster when I'm standing, but I don't feel body fatigue the way people with POTS do. I can exercise
-I sporadically get pain shooting from my spine down to my hands. My pinky and ring finger are often numb.

I don't even know why I'm asking, because we don't have upright MRI up here in Canada anyways, so no way of confirming if I have CCI or not. Or maybe that's why I'm asking.

 

[lenora]

Prefect...hello! Your symptoms are not inconsistent with those I experienced in my neurological illnesses. Look up Syringomyelia and then Arnold-Chiari Malformation. If you feel that they fit your symptoms rather easily, then a regular MRI should be able to detect both of them. You just need to ask for an MRI that includes the brain, especially the brainstem and the entire spinal cord from top to bottom. That will either confirm or rule out both disorders.

Go to a top neurologist, preferably one who is aware of and has dealt with these conditions, have him read your MRI's (in addition to the radiologist) and then, if surgery is suggested, you absolutely must get a second opinion if not a third. I'm sure you can still mail copies of these results to top doctors in the U.S. Canada may have some now, I don't know. I believe there are now organizations in Canada under the names I gave you...if not, you'll find them in the U.S.

Surgery won't help all people, but it does slow the course of the illnesses. The eye movement is concerning, and you certainly don't more nerve damage than necessary. I would read up on these illnesses (Syndromes, don't you know?) and be able to follow your Dr. when he's talking to you. Have someone else accompany you b/c it can be a lot to take in on your own. I'm wishing you well....Yours, Lenora.

 

[Strawberry]

@bensmith @MikeC I know many many people are trying to get the process sped up, but nothing changes. I can ask questions for either of you, pm me if you want. Hopefully your wait will be over soon! I have no idea the rate before I was let in, but it seems there are lots of new member welcome posts recently so hoping soon for you two!

 

[Prefect]

@lenora thanks for your response. Did you have headaches?

 

[valentinelynx]

Hi @valentinelynx. Well, my answer was dumb. I don't know where the question came from (Thread), but I appreciate that you called my attention to it. Beautiful cat you have there...very sweet looking. Yours, Lenora.

Cherry is a perfect work of art, and she knows it! She is a 17 lb sweetie who loves my husband passionately. She thanks you for your compliments. (Her sister, Shady, is beautiful in a different way, being a tortie & she likes to torment her much bigger sister).

 

[valentinelynx]

Can you have craniocervical instability without headache or neck ache?

Yes.

 

[lenora]

I did not have what you would call major headaches. However, if I lifted anything too heavy or used my arms the wrong way, then I would have severe neckaches (which did disappear after my second surgery).

Now before I hurt myself with sneezing with my l. arm in the air, I had a lot of ME symptoms. You may not have ME at all, and that would be a huge monkey off your back. After I injured myself, I had a lot of pain, especially under my arm, into the l. breast and all up and down the spine & l. side of body. Bad, burning nerve pain & nothing except an ice pad would help deaden the pain. Heat did nothing, but tighten the area and make the pain even worse. There wasn't much in the way of pain relief anyway.

If you can get a regular MRI that includes the places I mentioned, go for it. Certainly better than nothing & 35+ yrs. ago it was the only type of MRI anyway. I had one of the earliest in Dallas @ 3:00 a.m. The machines were used 24 hrs./day because of pent up demand. Symptoms are so diverse...but I assure you that you don't want to hurt yourself and you don't know that until it's done. Neckaches did go up into the back of the head, thinking about it.

@valentinelynx, I don't feel that I can give you symptoms of CCI b/c that was never my problem. Sorry. Yours,l.