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Discussion:
Please help!!
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My husband has been having back pain at night. If I rubbed his back the pain would go away. We went to our family doctor, he prescribed physical therapy and to follow up with an orthopedic doctor, but said he thought it was just muscular. The exercises from physical therapy seemed to help. The orthopedic doctor did an xray and said he saw some inflammation and wanted to do an mri to get a better look, but said it was nothing to worry about, he would just need pills or shots to treat the inflammation. He had an MRI last week, then they called him back in a few days later to do one with contrast. The doctor's office said it was nothing to worry about We had the doctor's appointment today. The doctor, who spent about five minutes with us and really didn't give us a lot of information, said my husband has a benign tumor in his back or spine, and referred us to a surgeon. He said he didn't know if the surgeon would want to take it out or what he would do. We had experience with a really good surgeon who did a procedure on my father in law so we said we wanted to go to him. We go see the surgeon this Tuesday. I am upset with the orthopedic doctor, we were in shock and didn't have time to think of the questions, and he was quite abrupt. Does anybody have any information or advice to give about this? Has anybody had a tumor removed? Thanks so much for any information!
Posted on 12/31/11, 12:02 am
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Reply #1 - 01/03/12  2:04am
" Hi Renee,

I don't have a tumor, and don't know anyone whom has one associated with syringomyelia, so I don't know what to expect. However, everything I read states that the best way to treat syringomyelia is to treat what may have caused the syrinx in the first place. So, in your husband's case, if the tumor caused the syrinx, then the thought would be to remove the tumor and hopefully the syrinx will collapse. They say this usually works, although, not in every case.

They typically do not perform surgery on the syrinx itself, they can do more harm than good. Out of the patients that have shunts implanted to drain the syrinx, about 50% have improvement of symptoms. Most do not have improvement, and some may even have worsening of symptoms. Often times, they have to do multiple surgeries because the shunt becomes blocked, or out of place, causing even further damage to the spinal cord.

Any literature that I have read states that surgery is the only viable option for treatment of a syrinx. Then they also go on to state that in most cases, the patient won't advance to the stage that surgery becomes necessary.

Most doctors don't understand syringomyelia fully, so I think the reason for their abruptness is a lack of understanding on their part. You'll unfortunately, most likely, find that even the ones that are familiar with it don't have many answers either. I've even been told, "I just don't know what to do for you anymore." At that point, I guess it's time to find a new doctor.

I would also like to direct you to www.asap.org. You will be able to find some good information on their website. It would be good for you to find a neurosurgeon that specializes in Syringomyelia.

God bless you! "
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Reply #2 - 01/25/12  9:17am
" Renee', I most definitely feel your frustration! The first neurosurgeon I went to was after a car accident. I was having major pain, so they did an MRI and found my syrinx (T-10 to L-1). The neuro was very abrupt with me as well. I was absolutely freaking out when he told me I had a "mass on my spinal cord", but he just acted like it was no big deal. He kept saying it's nothing to worry about, blah, blah, blah. I then decided to see another neurosurgeon who told me that my syrinx was very large and that surgery would most likely be needed soon. Since then, I've seen another neurosurgeon who also told me that it is a very serious condition and that surgery will most likely be needed soon. So my point here is just that it really depends on the doctor you see. I have found that the majority of neurosurgeons aren't that familiar with syringomyelia and that instead of just saying that, they try to cover up their lack of knowledge with "don't worry about it". This is really frustrating to me, because the doctors that have that attitude could cause people to miss out on opportunities for treatment, or even worse, wind up being paralyzed because the proper treatments weren't offered. I'm really sorry you had to go through that! Just know that you are NOT alone! I just made an appointment at the Miami Project with Dr. Barth Green (through the University of Miami). Besides Dr. Oro in Colorado, Dr. Green is the other world-renowned neurosurgeon for this condition. My local neurosurgeon has never done a syrinx shunt surgery, whereas Dr. Green has done hundreds, so my confidence level is much higher with him. It might be an option for your husband as well. Just do a web search for the Miami Project. I hope this helps a little bit! "
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Reply #3 - 02/02/12  7:24am
" Hi renee, just diagnosed with syrinx. Iam not in a position to offer much advice, but i`m in the uk and the treatment i received from the neurosurgeon was also abrupt. Not very helpful with any info, it seems they really don`t know enough themselves. They treat you like guinea pigs as we would say! Hope you get some proper treatment soon, take care. Regards malc. "

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