Help with a Syringomyelia
 

Hi,
My name is Jack and this is the first time I've ever joined a group like this but I hope to get more information about my problem. I hope others will be able to tell me, or I can read what is already written, about their experience and where they received treatment. Anyway, I received a heart transplant 22 year ago and the heart is still working fine for which I'm for every thankful to the donor, donor family, and to our Lord God who has always watched over me. But what I'm looking for help with, is a Syringomyelia I first had 5 years ago. At that time I had surgery and a shunt was put in to drain it, It plugged about 2 years latter and a larger one was put it in which lasted another 2.5 years. That lasted another year or so and it also plugged. Now I am facing another surgery for which my neurosurgeon suggested I seek another opinion. So I'm looking for anyone who is experienced with a syrinx and do they have recommendations of any doctors and clinics I can check with?
I'm sorry I rambled on about my self, I normally don't do that. But thank you all for your input into this site and sharing your experiences.
Jack

Hi there. I want to welcome you to our family on Neurotalk. I am not able to give you any info but rest assured, someone will come along and direct you to forums that you will find interesting and helpful.

Again, Welcome

Take care and I really hope you are having a good day. Bless your HEART!!!!

Melody

Nice to meet you!!
 

Thank You Melody, any day the Lord gives me is a good day. I try not to complain because so many people are in worse shape than Iam. I do hope to find a surgeon in the Wisconsin, Illinois, Minnesota area that has had some long term success with treating syringomyelia. But if I have to go further that's OK. The surgeon that did my 3 surgeries suggested I get another opinion.
Thanks again,
Jack

Hello
 

I my name is Jenny and I have Arnold Chiari Malformation and Syringomyelia, I am planning a trip to see the best specialists in the country to pursue the only surgery that will give me some sort of relief, posterior fossa decompression surgery. Unfortunately I have a rare condition so a lot of doctors here in Florida are not educated with what I have. I have an image of my spine and want to know if anyone can tell me if I am looking at my syrinx? Is the white portion my syrinx??? I have MRI's from 2009 and the portion where they say my syrinx is what not this large, so I am trying to find out if it has gotten bigger, the report says syrinx is stable...but they did not have my records to compare so how would they know if it was stable?

Nice to meet you!!
 

Hi Jenny,
I have just had the exact same surgery as you are about to undergo. You are correct, neurosurgery is not common. But that doesn't mean it can't be helped! It is a simple procedure, compared to some others. I suggest that you get some MRIs urgently of your spine, particularly of your cyrinx and your lower brain stem. I am from Sydney and about 5 months ago, I had the exact same thing done. Speak to a neurosurgeon urgently! This surgery will potentially save your life! Take action and most importantly be brave! *edit*

Best of luck to you! X