Cleveland Clinic Tomorrow

[Maxine]

Tomorrow I go to the Cleveland Clinic to see a spine specialist and have an EMG.

I'm prepared for ignorance----especially related to my CCI (cervical/cranial instability) related to EDS. Docs can't make the connection with EDS, only Injury or rheumatoid arthritis. It is so ridiculous because the end result is the same, only my joint damage is from joints that are too loose, verses stiff joints from rheumatoid arthritis.

Unfortunately heads are heavy, and as an added inconvenience my neck has to hold it up. If one has EDS, and it happens to affect this area they are not taken seriously. However, docs that specialize is EDS understand this and pass it on, but they aren't taken seriously either----other then a handful of NSGs or a couple orthopedic surgeons.

The NSG I'm seeing has a good bio, and I hope he's willing to at the very least listen to me. The neuromuscular doc from the CC that I saw last month would like to see me again next month for follow up. I think he's a good doc, but no bedside manner-----JUST BLANK. Maybe he's paying attention to those lesions in my brain, and wondering if that is also causing some problems.

The neurologist I see locally was checking me for MS, but the MS specialist she sent me too said I didn't show the signs. It's hard to tell sometimes though, as symtoms of ANS dysfunction can mimic MS. Some EDs patients also develop MS secondary to the EDS, as brain lesions can also be caused from EDS. Myelin has collagen in it too-------------or it's affected by it. Collagen is everywhere in our body.

My neck has gotten so bad that I'm pulling muscles and deep tendons on my neck. My mid spine has issues also, and now I'm feeling the discomfort more in my lower back. It's an annoying kind of pain, and my hips are affected too. I guess I hurt all over, as my joints and ligaments are failing me due to the EDS, but the most important right now is the CCI, other spine instability and desiccation.

I'm praying and keeping my fingers crossed that I can get some headway on some of this. Still waitng for insurance approval to be admitted for the virtual colonoscopy prep. As you remember, last year I had a barium enema with double contrast which is a pretty good screening test, but when I went to NIH, Dr. McDonnell wanted me to have a colonoscopy to take a closer look at the multiple diverticuli in large bowel which seem excessive since 3/4 of bowel is covered.

My BP has been really low and unstable, so PCP decided against me doing the prep for colonoscopy and ordered this as in patient. Of coursse he cancelled the reg. colonoscopy due to the instability of spine, and didn't want me to be sedated and not able to control my body mechanics during the test.

So many obstacles to overcome.

Maxine :0)

[mkoven]

Good luck! As you know, not many docs recognize or treat this. It seems to be a small handful of neurosurgeons, who, trained as surgeons, are less able to talk about conservative management.

I don't know what to make of my own cci and what to do about it. I would be very reluctant to undergo a surgery that not that many are versed in and is considered controversial. They do this routinely at TCI, but as you know, there is a lot of controversy swirling around them. For now, I'm doing what I can to avoid getting worse. I have to keep reminding myself about proper head position, and using my mid-back muscles to keep my head erect and back, while keeping my shoulders down and neck back. I've been various types of scapular stabilization and pectoral release exercises for this. I've also learned how often I let my thoracic spine flex, rather than work on mild extension, with chest lifted and shoulders back. It does help.

Besides that, there is only the brace. and then surgery. and the surgery does seem pretty extreme. And I really wonder what fusion will do to the rest of an eds spine. I was told that at this point my situation is not life-threatening/emergent, by Francomano and the neurosurgeon I saw in DC who does treat this. Right now it does seem to me that this is something one has to "live with" as long as possible--like lots of other eds unpleasantness.

So I guess I would probably make sure I knew what my expectations were going in, what you will do if they are not met, and whether there will be a better place. But just like I don't like taking drugs that have just been released, I'm not enthused about trying out new surgical procedures.

[Maxine]

Mkoven,

Thanks for your thoughtful reply.

My expectations aren't high, but I would like them to give me some kind of insight on this vertebral artery. I want to find out if this situation is emergent. Dr. Durrani who is an orthopedic spine surgeon said my vertebral artery is being kinked, and that this a dangerous way to walk around. The trouble is that this right vertebral artery is already enlarged, and it's pressing on the brain stem per Dr. Heffez in Milwaukee in 2002. At the time he worked in Chicago. As you might know, the left vertebral artery is missing, so this is why the right one is enlarged. I'd hate for this thing to blow from the combination of instability, poor vascular tone, and the artery being enlarged already.

I would think that smeone there has some commn sense and can offer some kind of advise on this. Surgery is something I want to avoid, but I want more opinions, as I have the other complication with the vertebral artery. The problem is that if they don't believe EDS can cause CCI, then they may not be concerned about the enlarged artery. There's a lot of liability there-------and quite a challange for any surgeon when dealing with arterial issues. that's why I'm going to the cleveland clinic hoping that they will at the very least listen to this combo and keep an open mind. I'm going in with the credentials of Dr. Tinkle (EDS geneticist), Dr. Nazli McDonnell, (Heading the EDs study at NIH--also a geneticist), and Dr. Durrani (orthopedic surgeon who has experience in CCI). All of them have great credentials, and NOT connected with TCI. Although I do have records from TCI, I don't mention the docs when I'm at appts.

I also have this swelling on the right side of my neck near my clavical-----and this is something visual they can see----

I understand not wanting surgery, and the cascade effect it can have on an EDS spine. I'm an example of that. I didn't have this instability until 6 months after my cervical spine fusion on c5, 6, and 7 along with a titanium plate. It has gotten worse though the years, and my WHOLE spine is affected. When I wore my hard cervical collar, I was working my thoracic spine too much. Dr. Durrani told me I also had a desiccated disc on T-8-9. Then when I went to NIH Dr. McDonnell told me my whole thoracic spine is desiccated. Believe me, it feels that way---------------sometimes it feels like it's caving ing, and it hurts all the way through to me chest. It's so bad sometimes it stuns me how I manage some days. It truly feels like something is pretty bad, and it might kill me right then. The pain is so sharp and intense, and when it hurts like this in the back of my head it's pretty scary. I have a lot of excessive movement back there.

I'm a pretty good advocate for myself, and I can throw out a pretty good argument on this with most docs. I used to be more of an advocate for other patients, but I have found I would be too tired and worn down to do it for myself. Now I feel like I'm doing for the good of all people who have EDS and CCI. I'm determined to get the Cleveland Clinic to take this on. However, some Docs just have narrow thinking and there's nothing you can do-------------It depends on the size of the EGO.

Maxine :0)