hi all
i am in search of info. i have a 9mm tumor at c3 in my spinal cord. i have two shunts to relieve the pressure caused by the syrinx, both blocked within months and now there is discussion about trying to remove the tumor.
has anyone had this op and what was the outcome, i would really apperciate your comments.
thanks
Hello,
I am due to see my neuro doc next week. I also have tumors that are leaking a lot of fluid in my C's part of my spine and are making my right side twitch 24/7. Did the stent procedure affect you much with your day to day life. I dont want to give up my sports as they keep me sain. I have been putting off this surgery as I am a big chicken, eyes and kidneys are one thing but spine and brain make me nervous. The doc also wants to remove two of the four tumors on the cord. He cant get to the ones near the front of C1 so I hope that they arnt the ones causing problems. I would also like to find out if anyone has had spinal tumors removed or does anyone know the leading spinal specialist in the States so I can foward my MRI pics for a second opinion? I understand that all operations are different but is it common for a stent to block? Any info would be appreciated as I am only a week away from seeing the doc and I want to be "The Powerful Patient" lol .
Thanks GREG
I've been told that the leading spinal surgeon in the country is Robert Spetzler at the Barrow Neurological Institute in Pheonix, AZ. I wanted to have surgery with him last year, but my HMO would not let me go outside of California. He's supposed to be AMAZING. He's even been on the Discovery Health Channel, I think. I still have his number, if you want it. (602) 406-4195. I can't make a personal recomendation about him, because I've never met him, but I can tell you that he was recommended to me with the highest regard.
I had surgery at C1, C2 and C4-5 in 1987. I was told the tumors had progressed and if I didn't see the neuro when I did, no telling. But many of us heard that story.
I probably had those tumors for at least 10 years before surgery, before they knew VHL affected the spine. I was having severe shoulder problems at the time. It seemed whatever bothered me before surgery, was enhanced after the surgery. I exercised all the time before surgery (for years) and that is what allowed me to recover as well as I did.
It was my most difficult surgery, but I can walk and talk.
Times are different.
Gale
I have had two spinal cord surgeries in the T11-T12 areas. The second tumor was in the middle of my spinal cord and the surgery was risky, but necessary. I had a difficult time with pain, but I am able to walk and I have all my functions. The only problem I have had is some patchy numbness in my left leg, but it doesn't bother me much. I hope all goes well for you. Make sure you get an experienced surgeon; I think that is the most important thing to consider.
thanks for your replies, i have now found a highly recommended surgeon, so that along with your positive posts has left me feeling far more confident.
re the way my shunts worked..... they blocked very quickly, just a few months, i think the relief was from the pressure reduction during the op. i used to sail but think it was the exertion that caused the syrinx, i cant exercise now as any activity makes me worse...... i look drunk when i walk!
Best wishes to everyone
In 2004, a tumor was discovered growing from c3 - c5, but since it wasn't affecting me, the surgeon decided to just watch it until it became impossible for me to live with. I was shocked it was there, be cause I've had MRIs every year [but missed the previous year because I was moving]. The next year it had grown, but he still refused to operate [he said I wasn't ready - but I think he was afraid it would go badly and he didn't want to end his career with a "failure"]. I didn't like or trust him anyway, so I started looking around for a new Dr. By the time I got one, the tumor had grown to c7. I was scheduled for an MRI, but experienced symptoms accumulating quickly, and pushed to have it dealt with asap. I landed in the hospital, unable to urinate, hardly able to walk and dress myself. My new surgeon was reluctant to operate since it was "too big an operation" for him - but he submitted my case to his colleagues, and somebody agreed to operate because I "would just end up parallyzed anyway if they did nothing." The operation was extremely successful, since I was able to move my legs from the time I awoke. It took several days before I could lift my arms and move them around. I had several weeks of therapy in hospital, and now [a year later] I live at home by myself with 4 cats and home care. I still can't use my hands very well, or walk very well, or lift my head well. I don't cook or write, but I have been driving just around home to do errands and visit my Mom. Most of the time, I don't feel well since I'm so stiff and sore [not much feeling from too much nerve damage and scar tissue and not much bone support in my neck]. It has been very important for me to be able to get out among people and stay involved in my social activities, as tiring as it is and as sore as I am. It would be too depressing to sit at home and be forgotten by society. It's really frustrating having to rely on "home care" when you'd much rather do it yourself!@#@! So it's a lot of work just beng me...........
Dear Gracie,
I am sooo sorry -- I am in similar circs and can empathize with your experience. I have had attempted multiple spinal tumors removal twice -- once at Mayo and once at NIH. Each time, I was worse after the surgeries (but then, maybe I'd be worse w/o the surgeries -- who knows). I am now diagnosed as a Quadriplegic, incomplete. Like you, I do and go as much as possible -- but life is changed forever.
If you are young, I do believe the future for spinal cord injuries is promising -- maybe stem cell therapy. You have my prayers and love,
FYI, it is unlikely that the exertion caused the syrinx. A syrinx is a cyst in the spinal cord. It's a fluid-filled balloon, just like a cyst in the brain, but because it is constrained by the bony structure of the spinal column it looks more like a sausage on the scans.
It is generated by a tumor. They don't need to remove the syrinx, they only need to remove the tumor that is feeding the syrinx (think that the tumor is blowing this bubble). Once the tumor is out, the syrinx will deflate and the liquid will be reabsorbed by the body.
Do whatever you can! Maximize whatever works, and find activities that bring you pleasure. Get out of the house and be with people, at least a few times a week.
All best wishes,
Joyce
Thanks for your concern, susannb! Wouldn't we have one heck of a party if all of us "in the same boat" were to get together? One of the hardest things is experiencing lack of understanding from people who expect me to be able to handle what they dish out - it sems that people think they have permission to treat me poorly if I dare to have the courage to show my face in public. The way some people do not think they should have to extend an extra helping hand to make my life easier is hurtful - it gives me the impression they don't believe me - that they think I'm faking it. Some people treat me resentfully - as if they believe I have no right to be living on my own with 4 cats. Yet, most of the time, people are good - it's just the "1 bad apple that spoils the whole barrel". I'm also dealing with people who think they have a right to control me because they think they know what's best for me. I sure don't need all the extra stress on top of the physical stress of being me! Sometimes I wish I had the temperament to be a hermit.
Dear Gracie,
Again, I can empathize w/what you say. I think relatively few people understand the difference between a "spine" issue and that of a "spinal cord". The loss of human senses (touch, feeling, control of limbs, etc) is just something people can't imagine and/or understand...even if they try. Try not to be discouraged or hurt -- it really is one of many examples of "forgive them -- they know not what they do". Most people would not hurt you for the world -- they just really don't "get it". luv, susan
It's embarrassing to have you give me advice from Jesus - after all, I'm an ordained minister, so I guess I should know better. My reality is that it isolates me even further and frightens me to realize I'm all alone in this world [except for God, who is intangible]. As a divorced person, all I have is my family, who really don't bother to understand either - in fact, my mother laughed at me when I almost fell trying to pick something up from the floor. That's alright - I have long identified with the misunderstood Christ. The problem is - I am NOT him - and besides, he may have SAID that because he had to - but I think he hurt too.............there will be nobody standing at the foot of my cross..................I thought this would be a safe place to share my pain and be understood, because I can't be fixed and don't expect to be.
I have an interview scheduled with the head of the ARC http://www.arcmass.org/ on August 11. We are planning to talk about a radio host who recently said cutting things about children with autism -- that they are just out-of-control kids with bad parents.
As you express, it's hard enough dealing with the disease itself, but dealing with the intentional or unintentional cruelty of others is an additional burden none of us needs.
We had thought to talk about the wider problem for people with all disabilities. I would welcome your own questions to add to this discussion.
Gracie, would you like to be part of the show? Call me at 800-767-4845, ext 4.
Cheers,
Joyce
About 13 years ago I had multiple tumors removed in mulptiple surgieries in the C spine. They left me w/severe nerve damage and right side paralysis. My spinal colum colpased and caused even more nerve damage due to the amount of bone that was taken out of my C-Spine. My entrie C-Spine is now fused w/three plates to complete the fusion. Recently I developed additional tumors in the C and T spine and brain stem. Drs were very reluctant to do another surgery because of my difficulties and instead recommended Stereotactic Radiosurgery (SRS) in which they shout the tumor w/ very focused and strong radiation. So far all treated spinal tumors have stopped growing and the brain tumor has shrank by 30% in 6 months. Very good results. All of my doctors are at UCLA and all have been excellent. I would say that SRS is worth looking into.
Hi there! Well, I had very positive results from my spinal surgery. I had three spinal tumors with a 2cm x 7.5cm syrinx attached to one removed in 1998. I was experiencing numbness, areas of paralysis and tingling. When these were discovered, the doctor told me that I should not have been able to even control my bladder or bowels...they were in the T area. Anyway, I had a spectacular surgeon and he fixed me right up. He warned me of the possible complications of paralysis or death, but we prevailed. He has since removed a brain tumor as well. My surgeon just happened to be the doctor that recently operated on Ted Kennedy at Duke University Hospital. Dr. Allan Friedman is the man!!
Good luck,
Rhonda
Hi, Hollie! Delighted to hear that you had good results from stereotactic radiosurgery (SRS) in your C-spine. For others considering this, don't forget the Questions to Ask Your Doctor about Stereotactic Radiosurgery. http://vhl.org/stereo
Having this conversation with your doctor BEFORE the procedure is even more critical in the spine than in the brain, since the space is even more constrained. As Holly describes, when it works, it's great. But it is not appropriate for every situation. Approach with caution.
Best,
Joyce
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