I'm curious what type of tumor you had and did you have radiation treatment after the surgery? I too had surgery to remove a brain tumor ( Meduloblastoma ) as well as post op radiation to my brain and spine and am now suffering the effects of Ataxia ( lack of balance/coordination/dexterity, difficulty writing, slurred speech, difficulty walking etc). Did your Ataxia begin immediately following surgery? Mine did not appear until 25yrs after and it has progressed over the years. MRIs show evidence of my cerebellum shrinking, softening, and scarring as a result of the tumor, surgery, and radiation. The damage has been labeled " moderate " but it has not progressed over the years. Only the Ataxia symptoms seem to be progressing. Like just about everything with this illness, there is no explanation why the Ataxia took so long appear after the surgery/radiation.
I read your comment with much interest Bob! My neurologist told me recently that additional atrophy, or not, of the cerebellum is not necessarily an indication of symptom progression. He said there's been studies done that prove this. Anyway, that matches what you said regarding damage to your cerebellum being "moderate" and not progressing, even though your ataxia symptoms seem to be progressing. Who knew? ;o)
I had a pilocytic astrocytoma (deep in the cerebellum, as yours). No radiation was needed as it was a benign tumor. As far as I know it took some (two?) days before ataxia came around (for some reason I can't remember...). My ataxia was labelled severe. The damage has neither progressed; on the other hand my ataxic condition got better during some early years after the operation, but now I feel that the symptoms are again worsening slightly (or I am getting older).
Bob and Rose, you are making a valid comment to consider: the shrinkage/changes of the damaged area in the cerebellum do not necessarily go hand in hand with the progression of the symptoms. I think it might be the time to see a neurologist again.
Bob said:
I'm curious what type of tumor you had and did you have radiation treatment after the surgery? I too had surgery to remove a brain tumor ( Meduloblastoma ) as well as post op radiation to my brain and spine and am now suffering the effects of Ataxia ( lack of balance/coordination/dexterity, difficulty writing, slurred speech, difficulty walking etc). Did your Ataxia begin immediately following surgery? Mine did not appear until 25yrs after and it has progressed over the years. MRIs show evidence of my cerebellum shrinking, softening, and scarring as a result of the tumor, surgery, and radiation. The damage has been labeled " moderate " but it has not progressed over the years. Only the Ataxia symptoms seem to be progressing. Like just about everything with this illness, there is no explanation why the Ataxia took so long appear after the surgery/radiation.
Anna and Rose, thank you both for your input. I am having a difficult time wrapping my head around the idea that a procedure to save my life 25yrs ago is now ruining my life. In 2011 I had never heard of Ataxia and scheduled a meeting with the Chairman of Neurosurgery at Shands Hospital in Gainesville Florida which is where I was treated 25yrs ago. I was searching for answers and hoping for a treatment. Instead, I was told this: " You should be thankful you are still alive and learn to live with it ". At the time I was shocked at such a blunt response but as I've come to learn that is all we can really do. Try to figure out what works for you, diet, exercise, vitamins/minerals, etc and try to deal with it.
Anna Heikkinen said:
I had a pilocytic astrocytoma (deep in the cerebellum, as yours). No radiation was needed as it was a benign tumor. As far as I know it took some (two?) days before ataxia came around (for some reason I can't remember...). My ataxia was labelled severe. The damage has neither progressed; on the other hand my ataxic condition got better during some early years after the operation, but now I feel that the symptoms are again worsening slightly (or I am getting older).
Bob and Rose, you are making a valid comment to consider: the shrinkage/changes of the damaged area in the cerebellum do not necessarily go hand in hand with the progression of the symptoms. I think it might be the time to see a neurologist again.
Bob said:I'm curious what type of tumor you had and did you have radiation treatment after the surgery? I too had surgery to remove a brain tumor ( Meduloblastoma ) as well as post op radiation to my brain and spine and am now suffering the effects of Ataxia ( lack of balance/coordination/dexterity, difficulty writing, slurred speech, difficulty walking etc). Did your Ataxia begin immediately following surgery? Mine did not appear until 25yrs after and it has progressed over the years. MRIs show evidence of my cerebellum shrinking, softening, and scarring as a result of the tumor, surgery, and radiation. The damage has been labeled " moderate " but it has not progressed over the years. Only the Ataxia symptoms seem to be progressing. Like just about everything with this illness, there is no explanation why the Ataxia took so long appear after the surgery/radiation.
I agree Bob, we must live with it, as that's all we can do! I was diagnosed 10 years ago with Sporadic (idiopathic) Cerebellar Ataxia (unknown cause). I have no idea why I have this, as no one in my family as far back as we know has/had ataxia, except me! I even had genetic testing last year, which was negative. seeing how there's no cure, I find exercise for strength and balance (I use a cane) helps my ataxia the most. I attend physical therapy twice a week and try to eat as healthy (lot's of veggies and fruit). I also take a variety of over-the-counter supplements. I try to keep a positive attitude and laugh at myself! I won't give up or give in though, just do the best I can and enjoy my family and friends! ;o)