So Now I'M A Bobble-Head

[comfortzone]

Gosh like so many of you I find I have the triad of dysautonomia like symptoms, EDS, and now a bunch of neck issues. I guess I have swan neck deformity of the cervical spine, a narrower than most congenital spinal canal, some neck cord compression issues, spinal fluid extending further down the cord than most, severe bilat foreaminal stenosis....you get the picture- a messed up neck with the recommendation of plates and screws and other fix it toys on multiple levels... frankly I say NO! It's better to have an unstable neck than endure yet another surgery and have an unstable person! I'd go nuts if I had to go through another surgery.... I have to say NO. I doubt I'd survive it. So I'm just waiting to see if this is a life or death thing or not -- ext/flex CT scan will be read tomorrow.

I think I'll change my name from Nowwhat! to something else -- because with this name I've just added a heap more of problems! Neck instability....whatever!

If my new name is whatever! that could be asking for trouble too.... Help me get a new moniker if you could be so kind - one that will bring health and happiness in the New Year LOL!

[anna]

Hello nowwhat!

I am starting to think up a Abbot and Costello like sketch here now!!!

"You nowwhat, no that would be the old me now it is whatever, whatever next, yes that's right!

Sorry could not help that! Regarding the neck instability issue, my children's main EDS problem is their unstable necks, but we can not get any Dr. to look into this, they are just not listening to me or my children when they say their neck feels like it is 'out' and they have odd symptoms etc. Dr. seem to think necks can only be unstable due to major trauma and that my children are too young for any thing else!!!

[Noreen]

Hey there nowwhat-

So sorry you have joined us bobble heads - it is not fun.

While I have dystonia, there is a difference between when that acts up and the general cervical instability from EDS. The dystonia is like a pulling while the other is, as you say, like a bobblehead. My docs are clueless as to the EDS but I am hopeful you are finding better help. At least the headaches have not gotten worse as often happens when the neck acts up.

[comfortzone]

Hello Anna - Hi Reen :-)

http://www.dchweb.org/resources/documents/Community%20Newsletters/Live%20Well%20Fall%202009.PDF

The above link I provide -- if you haven't already read her story -- this is about MacKenzie (? sp) a teen who had plenty of these neuro/hypermobility issues ~ the article is about her journey with her mom to find answers -- what they did when they found the answers and how she's doing now.... She has a blog also on the internet. As you have lovely kids Anna maybe you'd like to read it...

Long story short - the amazing care and clinical assesments provided by Dr. Clair Francomano -- geneticist and then Dr. Fraser Henderson -- neurosurgeon ... lead this young woman to begin her journey to healing -- and a return to dance - one of her passions.

So there is growing interest among scholars in these kinds of cases -- but it's slow in coming it seems... I'm no expert on this stuff - but my own internet research shows these two docs to be among the front runners in clarity of understanding and also compassion for people with this symptom set... Dr. Henderson I believe does have pediatric surgery experience ... gosh I read his curriculum vitae on-line and it was 23 pages long.... what an impressive career.

I guess my knee jerk response is to say no to surgery in my case -- believing that hypermobile fusions would seem to me - to not be stable that long.... but again I'm no expert and frankly pretty anxious about how life looks right now with all these issues. I end up saying - oh heck I'm old and maybe just fighting old age....

It was these two docs whom I flew out to see the past couple of days....I'm home now and trying to let it all sink in. I guess because of time constraints - my last two tests administered (ct scans) weren't read before I flew home -- so maybe I'll feel differently once I get a handle on the specifics of all the "why's" -- and hopefully speak with Dr. H on the phone...

I LOVED the Abbot and Costello -- I LOVE to laugh and that comment was great.... I guess I've come to see that most of the physicians in the world are clueless about these issues -- and in fact a lot of the ones that are savvy to it all -- come to it because they love to learn....they are scholars and truly wish they had more colleagues that would take interest in these things. In the world of academia -- if a university is not interested -- it can be hard for the front-lines or visionary thinkers....to get support and a dynamic group of like interest docs to confer with.....

So it remains perhaps up to the goodness of patients that wish to help the cause through presentations, lectures, books, websites -- to spread the word - spread the news -- that help is available -- and to also help people to identify in others what they may be experiencing themeselves....It's a rough road for those with 'rare' or 'rare-ish' maladies!

Have a great WEEKEND .... Christmas is just around the corner.... hard to believe!

[sue1234]

I loved that story of Mackenzie! It goes to show that sometimes just having a "diagnosis" doesn't mean that's the end of the journey. I guess that is the mission I am on--find the root cause and fix it!

I can understand that many with EDS have the cranial instability. I don't have EDS, but did have neck issues at some point around the time my POTS started. I can't remember the time frame, and now wish I had made a mention or note of it, but my neck went through a period where it would POP really loud. In no way was it just a variation of normal joint popping. But, since i didn't notice any pain or numbness as a result, I kind of ignored it.

Now, after reading her story, I wonder. I have some of the same odd symptoms she does, such as trouble breathing when laying down, trouble swallowing things in certain positions. I can see my esophagus is not straight! Due to knowing this, I would love to have an upright MRI now, to verify the things I know. I can just imagine my neck would show similar results as to hers, with me having a "bowing" forward, and a lateral curve.

So, I guess my point is, I can see where a cranium not sitting straight on top of the spinal column can cause circulation issues,along with nerve issues. I was just thinking about ordering a book called, "The Downside of Upright Posture". The author, a retired chiropractor, has spent a career understanding the issues of misaligned craniums sitting on the cervical spine. He doesn't necessarily mention dysautonomia, but instead looks at neurodegenerative diseases due to "backflow" from circulation. Well, I could see it applied to dys. issues, just like Mackenzie had brain tissue actually being compressed in an upright position, but NOT in a lying down position, as her previous MRI showed.

So, how do we get an upright MRI? Which doctor is most likely to order it?

[comfortzone]

Hi Sue...

I'm not sure which diagnostic centers offer the equipment that can do the upright MRI's ... sorry I'm no help there (although maybe Dr. Hendersons office staff could give suggestions?)... But that being said -- not all of the EDS neck issues are truly cranial instability - but can also be cervical neck instability - meaning the relationship of the neck vertebrae to one another - maybe with the head in right relationship with the neck. I think maybe that's what I'm facing.... or something like that. In that case the positions of extension and or flexion -- with the neck bones as they are -- might compress the spinal cord causing neurological issues. This can be a test that most all diagnostic centers would offer - the CT Scan of the cervical neck in extension and flexion.

That is fascinating the book you mentioned -- I don't yet understand the pathophysiology of this symptom -- But only twice in my life did I see a direct relationship with neck manipulation and big time nausea.

First time was when I allowed a chiropractic clinician mess with my neck - with her promising she knew a lot about EDS and wouldn't do anything that could or would compromise my health. Well whatever she did........... Had me leave walking to the check out desk.... and suddenly get very nauseated and faint. I couldn't even check out - had to sit in the waiting room. It was a lousy clinic - any other place I'm certain would have called the doctor over to check me over before I attempted the drive home.

The next time was immediately after my extension flexion CT Scan. I was feeling just awful after that exam and had to go to a restaurant and eat before I drove back to the hotel.........I fully believe there is a connection there ... yuck - makes me sick just thinking about it. Eating something salty and the distration of a yummy Baltimore crabcake finally brought me relief and I began to feel human again lol...

Not sure where you live - but I wonder if the office staff of Dr. Henderson could/would help out people that stumbled upon McKenzies article wondering where they too could obtain similar diagnostics for similar issues.... Also the EDNF website has a directory of physicians state by state that know about hypermobility things.... And while maybe while you haven't the dx of EDS ... you sure could utilize all phone numbers and office staff etc... of any doctor to narrow down who might help you get the studies that make sense to you.

It's crazy trying to figure it all out - when you are stressed and not feeling well etc... But you don't know unless you put yourself out there and try knocking on a few doors.... Any clinic that deals with Chiari Malformation and Chiari issues perhaps could lead you to a doctor and a center that offered the tests that go along with that diagnosis.... Don't think I have that Chiari thingy - but somethings going on....

The scariest is the lack of my ability to remember things short term ... my memory is shot... dunno why that is though.... I have so many other issues - the whole memory thing is repeatedly put on a back burner - yet I keep mentioning it with each doc I see. Tonight I cooked at the restaurant - and for the life of me I couldn't remember which plates each entree went on. Almost like I had a severe intellectual deficit... it was so embarrasing... Heaven help us all!

Good Luck with your seeking what you deserve - the best care to get you feeling your best - and ASAP :-)

[anna]

We have decided to try and find a Dr. that will listen to my children about neck issues as we really think that this might be the key to the many symptoms my children and I have.

We took my daughter to a Osteopath once not a good move made her feel so ill after. Oddly enough my daughter felt really ill after having Acupuncture to relax her neck muscles, I wander if that might point more to instability as when her neck does relax she gets more symptomatic. Maybe as her neck alignment becomes more precarious as her muscle are no longer able to hold things together!!

[hilbiligrl]

I too have the bobble head, alot. But i don't know why it does that. It's as if, if im sitting up, or standing, or sitting in a car... well, i need support for my neck... my head will just flop.... my family has seen me do this lots.... and its usually when im at my worse level of exhaustion (a state that i can be in for days/months).... It's like i wish they made something that i could support my neck and head to stay up! I also have always had this intense burning tingling inside the base of my head where it meets the neck, but its on the inside like inside the spinal cord burning and tingling..... no doc in my town knows anything about any of this, so i have to wait on vanderbilt to get the ball going in feb to get some answers.....

hilbiligrl