I have familial CMs all over my brain and I was diagnosed with a brainstem CM bleed in 2008. I was 16 at the time. I underwent surgery to remove the hematoma. I had to get certain post-operative procedures including tracheostomy and gastrostomy. After spending 6 months at a kids rehab, they were both removed and I recovered progressively. I now use a walker for mobility because I have left hemiparesis. I also have diplopia.
The brainstem CN is still there, but I've had these symptoms since 2008. I know that surgery is risky and there hasn't been any rebleeds since then. Should I avoid surgery or get it removed?
Any help would be appreciated! Thanks!
I'm also wondering, is the reason my hemiparesis and diplopia a result of my three hemorrhages and/or the reason that I still have a brainstem CM?
My first question is what do your Drs recomend? and Do they have a solid idea on what is the root cause of your symptoms.If not maybe it is time for another opinion? As for my advice there are risks in every aspect of this issue we are plagued with sometimes we have to weigh those risks against quality of life. We need to make sure we are living every day to our full potential no matter what that is. In the end I feel it is best to be as fully informed as you can be about all risks with surgery and with out surgery perhaps even write it down on a list pros and cons of each side and see how it weighs out. Sometimes "watchfull waiting" is the best course of action.In the end it comes down to what works best for YOU it is your health and your life! You are certinly on the right track for information this site is full of it. Hope you find everything you are looking for! Hope you are enjoying this beautiful blessd day we have been given! Take care and all the best!
I replied @ our CM community. :)
Thank you all for replying. Exams are starting for me and I did not get a chance to reply sooner. I'm planning to go to Hong Kong in the summer and see neurologists there. I'm hoping that they can provide more opinion on my case, since my neurosurgeon here in Canada recommends not operating and did not give much suggestion.
I know that the rate of recovery is different for everyone, but it has been 4 years post-op and I keep wondering if there is anything else I can do to improve from my symptoms. People have been saying that I'm blessed to be alive...am I just being impatient?
4 years is a long time. However, some members have told me that out of the blue 10 years later that they regained movement. Those cases are very rare. You have one thing in your favor…you are young. The medical advancements over the next few years will be amazing. Keep searching for answers. Never give up hope!
I echo Barbara & encourage you to never give up hope!
Have you been in the care of a physiatrist (a neuro rehab specialist) for your hemiparesis, or seen a neuro opthamologist to help you with your vision??
Continue seeking opinions from CM experts until you are comfortable with the direction of your care & try to live your life to the fullest (within any limitations).