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.
My H has been diagnosed with a syrinx and had a second MRI and the Neurosurgeon told us on Monday Dec 26 that he has a pea sized tumor that caused the syrinx or part of it ,
The news was grim, the tumor is inside the spinal cord in the middle, the Dr told us he would have to cut through the spinal cord to reach the tumor, and my H would not come out with out some problems ranging from muscle weakness to paralysis We are going to get a second opinion,but I am sure the diagnosis is going to be the same since our Neurosurgeon was very through .
I was wondering if anyone has something similar to this , and undergone surgery and what was their out come, I am terrified for him, everything on the web is not helping , are there alternative treatments ?
The news was grim, the tumor is inside the spinal cord in the middle, the Dr told us he would have to cut through the spinal cord to reach the tumor, and my H would not come out with out some problems ranging from muscle weakness to paralysis We are going to get a second opinion,but I am sure the diagnosis is going to be the same since our Neurosurgeon was very through .
I was wondering if anyone has something similar to this , and undergone surgery and what was their out come, I am terrified for him, everything on the web is not helping , are there alternative treatments ?
First off, I am not a doctor, and any information I give you I have read on the internet, or is from my own personal experience, and in no way should be construed as advice.
I have an idiopathic syrinx, which means that they do not know what had caused the syrinx. So, unfortunately for me, there is not much at all that they can or will do for me, you usually have to treat the cause of the syrinx, and then hopefully the syrinx will collapse.
The reasons for not doing the surgery, is that the risk usually far out weighs the benefit. They usually say to wait, and if the symptoms progress rapidly, and the syrinx continues to enlarge, it might be time for surgery, unless there is an underlying cause of the syrinx that can be alleviated with surgery.
It is most likely that they want to do surgery on him because of the tumor. If it were me, I would try to diligently seek out a skilled neurosurgeon who specializes in syringomyelia, and it's known causes. Get two or three opinions, as they may differ.
Being that I have not had surgery, I could not tell you what to expect on that end. I was diagnosed a little over 3 years ago. But have been having symptoms for at least 3 years. They have used a wait and see approach with me. I have tried many medications, only few of them have helped, but over time, they lose their benefit, and it's on to the next one. I have one or two or three costly MRI's a year, sometimes scheduled, sometimes due to new or worsening symptoms.
I read someplace that even if they do the surgery, and successfully collapse the syrinx, there may already be permanent irreversible damage. He might not have symptoms progress, but may still experience, at least, the symptoms he had going into the surgery.
Again, I'm not giving any advice in the matter because I am not a doctor. I know how frustrating all of this can be. There is a website you might want to check out www.asap.org.
There is no known cure for syringomyelia. Many websites state that the only viable treatment is surgery, but only about 50% of patients have any noticeable improvement of their symptoms. Some come out far worse than they were going in. Definately a huge decision for you to make.
I will keep you in my prayers.