Syringomyelia Support Group
Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.
I have been a member of DS for a few years now, I have Neurofibromatosis and fibromyalgia an too many symptoms to name. After many tests and yrs of 30 sec. Dr visits have recently been told I have Syrengomyelia. After losing use of my left hand and major neuropthy my doctor tells me now he can tell me whats causing all my symptoms, anyway surgeon wants to drain syrinx (C5-T2T3). Im terrified dont want a shunt. What has worked? And I just move across the country seeing brand new doc tomorrow.
You never know what might work for you. These dieases are not black and white. We always seem to be working in a gray area.
You are too young to give in. In the end though, you have to make the decision you are comfortable with.
I'll let you know how I make out on Friday. God Bless and good luck to you.
904-953-0853
This is one of the top hospitals in the world, depending on where you live. There are 4 Syringomelia Spinal Institutes in the US. If you type it in online all will come up. The Mayo clinic specializes in Chiari Syringomelia, which involves the brain and spinal cord. The visits cost the same as regular doctors visit. I have the same thing the cyst is at the tip of the brain stem. It is so scary for me and for all of us. Not knowing what to do is the problem I have found. I pray you find a good NR but I would go to someone who knows and has a lot of experience in this field. God bless you.
Wanda
Long story short, was referred to spine center for RA, they did an MRI follow up after xrays. Then MRI found the devil C5-T1. I found that out last week and had a repeat MRI w contrast yesterday. Been pretty worried about what's ahead.
I was scared out of my mind so it's a relief to find folks that have been around a long time.
Hope you find a good DR. I'm lucky that way, already have some of the best.
THE AMERICAN SYRINGOMYELIA AND CHIARI ALLIANCE PROJECT, these people help.... all the information is from asap.
Call Mercy Medical Airlift - 888-675-1405 and leave a message for Cathy @ Ext 215.
Miracle Flights - 800-359-1711 or www.miracleflights.org.
To requesting transportation information referral service for patient transportation flights to and from doctors appointments or surgery, the distance from your home has to be 1000 miles to get a free flight. I am not sure if this 1000 miles is one way or both. I was contacted today by THE AMERICAN SYRINGOMYELIA AND CHIARI ALLIANCE with this flight information. I want to pass it on to all of you who like myself live to far to get the best treatment. Below is information these pilots fly us for free. Please read below and call to see if you can get help to.
Please contact the resources listed below, find out their criteria and what information they would need to have on your behalf to process a flight request on your behalf.
Call Mercy Medical Airlift - 888-675-1405 and leave a message for Cathy @ Ext 215. They require 10 business days notice and Cathy will return your message within 1-3 business days of your call. Keep track of the day you called so you know if you need to place another call into her.
Additional Transportation Resources for future travel:
Miracle Flights - 800-359-1711 or www.miracleflights.org. They cater to children and adults. There is a $50 processing fee for their service, but the commercial tickets costs are free. They require 10 business days notice.
God bless you all I hope this information will help everyone who needs it.
Wanda
Conversely, doing nothing allows the syrinx to continue to destroy nerve fibers in the center of your spinal cord.
Danged if you do, and danged if you don't.
If the neurosurgeon recommends placing a shunt, you can be sure it is necessary. If you trust your neurosurgeon, let that guide your decision.
Good luck dear.