Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Has anyoneone on this board had a hemangioblastoma removed from the deep (middle) of the cerebellum? I wanted to find out about the side effects. I had one removed on 10/03/07 and am having trouble with my fine motor skills, balance and at times my vision. How long will this last or does it get any better!? I've had 2 previous surgeries in the cerebellum and have never had this kind of problem before.
Thnaks for your help,,
karen Gambon
Hi Karen,
My 19 year old son had a cerebellar hemangioblastoma the size of a golf ball removed in Feburary 2007. He suffered from a severe loss of motor skills - fine and large, he lost his sense of balance, had to relearn walking even. It took a lot of therapy of all sorts - physical, occupational and otherwise to get him back to anything resembling normal.
Because he was young and fit he did better than most, according to his surgeon. At this point his handwriting is still an issue, and I see that he walks differently. His stance is wider, his balance is not always perfect. He has accepted this as his new "normal". I hope that over time it all improves, but I do not see that happening.
Since then he has had two lesions in other parts of his brain removed with gamma knife and is facing two spinal tumors that will be removed in a few weeks.
Have you had much therapy since the surgery? In my sons case it took 3 months of therapy to get him to where he is now, and some work on his own after that.
I would be happy to tell you more specifically the things that he did that helped him.
Feel free to email me at albatten@aol.com
God Bless,
Amy
Our expereiences are similar - my first brain tumor (see my blog) was not found for months since there were no CT scans yet, so it grew large and split my skull in an effort to grow. I developed many problems - loss of weight, not eating, not cycling, double vision, slurred speech - besides the terrible headaches. It was removed urgently and I returned to a totally normal life. I also had no effects after tumor #2 (2 years later) and tumor #3 (19 years later). Tumor #4 brought a new challenge, as I experienced changes in nerve damage, balance, and fine motor skills. All tumors were removed from the same surgery site. While these results did improve gradually, I never got to the point of "normal". I never wrote again (except to sign cheques), and when I tried to run, I felt clumsy like a toddler. Now, of course, I'm having an even harder time, because of a very large tumor just removed from my spinal cord (see my comment in ideas for radio show).
All I can say to you is that you need to develop a calm attitude about the way you need to live. It will not help to struggle and get upset. You need to realize what is possible to do in your own way, and accept the new "normal" for you. It's hard to do - especially when your family and friends expect more from you than you are able to give. It's harder because this is such a rare condition, and "normal" people do not understand why it is difficult or impossible for us to do "normal" things. It doesn't fit into anybody's frame of reference - it's not a stroke, MS, or cancer - although has similarities to these. There's an added danger for vhl victims - because it's rare, it's too easy to sit back and be wheeled around helplessly in a wheelchair - because it makes people feel good that they are "helping". After I got my walker, and used it awhile, I realized it was only allowing me to be disabled. I need to try to do some walking without it - in a safe environment of course. One of the best things I've done is take a role in a community play. I'm forced to hobble around the stage on my own (with a cane). It was absolutely terrifying at first. But it brought out my inner strength, and confirmed that I don't know what I can do until I try. I still do need help - but I realized that I have to be vocal and firm about the kind of help I need. Do not allow people to assume they know what's best for you - lest you get put in a box, labelled, and shelved like a Christmas decoration, until such a time you become useful again.
Karen,
Hi there, my name is Christy Taylor.
I'm like you, I had my third brain tumor removed just this past July 9th, 2007. The last two I had removed were on the cerebellum and I had no problem after surgery, but this last one, was on the brain stem and I have little and at times no usage of my left hand, my fingers stay numb feeling all the time. I had PT and OT therapy while in the hospital in Maryland at the NIH there. They all tell me that within time I will get all the usage back in my left hand. I can't really be of any help but to tell you from what I know and from what the Drs. all tell me about surgery. I wish I could be of more help.
Thanks,
Christy Taylor
Hi there! I'm Simon and like most of you I recently had a hemangioblastoma removed. Mine was conected to the right side of my spinal cord and to the base of my cerebellum. The only thing I am thankful for is the fact that mine was incased in a cyst that prevented the tumor to grow any larger.My surgery was on Oct.17th of this year and am doing well except for the fact that I have loss of sensation on the right side of my body. I try to look at it with some humor (I call my leg the log and my hand the rock on a stick.....lol) I know some may think that is morbid but hey it's better to laugh than cry.Next month I go to have the tumor in my left eye checked on and then I am supposed to have the 3 tumors on my kidney checked.They haven't told me any exact surgery dates because I don't have insurance so they don't look at me as a top priority of course......well anyways just know you have someone out here who understands and just think they could cut us in half glue us together and make atleast one workin' body...lol...as I said I have a sick humor sorry if I offended.Feel free to e-mail me anytime and I am new to this site...Is there ever any live chats on here or do you know of any?
Peace and love,
Simon
Thank you for your informative and inspirational comment. My daughter is facing deep cerebellar surgery in three weeks at UCSF in San Francisco. This is the first time the doctors have decided to go after this tumor to actually remove it. We have been told the surgery will be very long, but the docs have said little about the aftermath - time in the hospital, medications, etc. They have indicated that she may have trouble swallowing - post surgery. I realize every VHL case is unique, but it would be helpful to have the details of the experience from someone who has been through it. It is very heartening to know that this surgery is being performed and that folks are coming through it with hope for improvement.
Thanks,
Anne
I had a tumour removed from the cerebellam in July 2008 and a second op June 2009 where the surgeon felt that "he had missed a bit" I recovered very quickly and was back at work after 3 weeks. Just recently I have started to feel very sick. Yesturday I had an MRI an all looks resonably OK but I have been sick again today. I am OK if I rest or keep relitivaly still. Does anyone know how long this might go on for. I am wearing a scopoderm TTS hyoscine 3 day anti sickness patch which seems to help a lot.
I had a tumour removed from the left cerabellum in July 2008 and a second op in June 2009 as the surgen thought that he had "missed a bit" The tumour is none malignent and I do not have "Hippal von Landue" sydrom or jean .I recovered both times quite quickly but this time I have started to feel sick I had a further MRI yesturday but was sick again this morning. All seems well with no further tumour although there was a light grey area which concern me and made the surgen unsure again. Does anyone know how long these sick syndroms might last.
My husband has had a few tumors removed from that area.. He as well suffered loss of motor skills and balancing problems. With physo therapy he has regained. Just stay positive and keep working at it.
Add to the discussion