Syringobulbia

[Pooh head]

:eek:I am new to all of this so please be patient. I have been having issues with walking for about 4 1/2 years. I have had to stop working, and have gone to countless doctors who all have collectivly scatched their heads and said I don't know what is causing this. My last doctor was an orthopedic specialist who agreed to do an MRI of my neck and upper back. By chance my brain stem showed on the neck film and there was the cyst! I have done countless web searches looking for answers. I am hopefull that I will finally be able to treat this disorder. I have requested a new MRI with contrast to be done on my brain. Hopefully there will be a clearer understanding of what is going on in there. I have a question though, I can be treated here in Birmingham at a community hospital or go to Maryland for a research study. Anyone out there have an oppinion? I am in need more insight. There are so many complications with this disorder that I just need to make a to choose soon! Yet I need some more info first. My next appointment is 12/19/08. Any advice is welcome!!!!

[Austinsmom]

You need to go to the largest teaching hospital in your area, even if you have to drive a few hours.

here is a site that list very good neurosurgeons at very good hospitals by state www.hydroassoc.org (go to education and support then click Physician Directories)

Go to the best neurosurgeon and have your contrasting MRI done at the teaching hospital (they have better machines) ask if they might want to do a MRA while they are doing the MRI.

Go no where else, no small area doctor should be dealing with this, they are not qualified. many cysts do not have to be operated on.

Well wishes and don't worry to much, keep active as possible,
Hugs
Deborah

[Pooh head]

Thanks Deborah. I am a bit overwhelmed. I apreciate the links, I am sure they will be very helpful.

[linniec]

Pooh,

I assume by Birmingham you mean Birmingham, Alabama. If so, Look no further than the University of Alabama-Birmingham neurology department.
Here's a link, though they have many more:

http://www.health.uab.edu/12853/

Linnie

[chunky]

Pooh; The university facility is the best place to be... that is where I insisted my craniotomy take place... There is always someone there at a moment's notice.
Best of luck to you!!
Donna

[PaJo]

good morning pooh.
i remember in my early days of diagnosis, being so scared and alone... but you are not alone.
i have never responded to this message board, but in this case thought it beneficial. (mainly because syringobulbia is so uncommon...i felt a kinship with you, i suppose.)
13 years ago, i was found to have syringobulbia, syringomyelia, and arnold-chiari malformation, which were causing great changes in my life and functionality. I was blessed to find Dr. T.H.Milhorat in a tiny little office at SUNY-Brooklyn, after some true nightmare experiences with other doctors. He has now created the Chiari Institute, the worlds largest specific clinic for helping us, which is incredible, and also has great video resources on-line for you beginning this journey.
The American Syringomyelia ******** Project, or ASAP, (asap.org)has been another good resource through the years. Truth be told Pooh...there is still so very little info specifically related to syringobulbia, and we are lumped in with syringomyelia, though the conditions vary greatly in their effects. breathe deeply and be patient...as well as discerning with the information you find.
From my experience pooh, many neurologists, other doctors, syringomyelia patients and people in general will say they know the condition and required course...but it is not always so. We are a rare and misunderstood group, with each one of us further having specifics which vary greatly, and too are of great importance in moving forward. Syringomyelia is rare enough, but if indeed it is syringobulbia which you have, very few doctors or others know more than you can find in a day or two online. (and dangerously, many THINK they know, but do not. please do become educated and confident pooh) Be patient and take a proactive role in your care and path pooh....as a wise doctor once told me, nobody can ever know the peculiarities and truth of how i am affected more than my own self.
I personally would seek out the best specialized care and humane medical attention which you can, as i suffered greatly for trusting doctors and neurologists who were not truly experienced in the collection of causes within my body, which are indeed specific and rather uncommon. (for instance, doctors which with good intentions gave me lots of heavy narcotics to kill pain, and other pills to help me sleep and nearly killed me in further depressing my autonomic functions within my brainstem, where lies one of my cysts...)
Doctors seem to despise admitting that they do not know, but the truth of the matter for me is that in dealing with something so specialized and intricate, a general neurologist or community medical center is not enough. this course has led me to live a beautiful, satisfying, and yes; challenging life.
One key pooh, i believe, is to not rush into any treatment. NO spinal taps, NO experimenting, NO surgery, NO shunts...nothing, until you are 100% confident in those treating you and you have a full picture of your situation. (typically for its fragility, syringobulbia does not merit surgeries as does syringomyelia, and is something to be learned about and worked with constantly, rather than a "solution" through surgery or whatnot...but each is different obviously)
Peace and tranquility have huge benefits to one with syringobulbia, and i wish you that in all that you do pooh.