Dear All,
As I am new to this network I thought I would share my story as I am going to need lots of support and advise. As a result of having an MRI for headaches due to chronic sinusitis I was informed by the Radiologist that they found a lesion in my Ponds as well as multiple ischemic lesions in the white matter of gilaterial parieta and frontal lobes. They were not sure what this 5mm lesions was in the Pons and thought it could be MS which would then tie in with the other lesions but to make sure they sent my films to one of the famous teaching hospitals in Shanghai for a final diagnosis - Cavernoma in Pons and Ischemic Lesions in the Brain.
I saw a Neurologist immediately who did a thorough neurological exam on me which she said was perfectly normal.She is not worried about the Cavernoma in the Pons and said that I should not run or do anything that would put pressure on my head...I am to excercise regularly and suggested walking. With regards to the other lesions she said they are not MS but could be from another underlying auto-immune dissorder so with that she has run a full battery of blood trests and will get back to me next week with the results.
She shook my hand and said I am not to worry and to carry on with my life as usual which at first sounded fine but I have been glued to the internet ever since which has put me into a state of panic, anxiety and depression that I saw a Phsychiatrist on Friday night.
I don't like this idea of the 'wait and see' suggestion. I would like to have mine removed before I get any symptoms and damage.I am aware that the neoros don't follow this method but how on earth can one live feeling like you are sitting on a time-bomb??
We are living and working in Shagnhai but my home is in South Africa and I read on one of the threads that a Cavenoma was successfully removed in SA and I would like that AVM survivor to please let me know who did it.
I have just sent an email to Dr.Spetzler asking if he could reveiew my films but have not heard back as yet.
Thank goodness for this support sight as I am so tired of venting to my husband who really cannot understand why I am in this state.
Rochelle.
Welcome to the site. Best of luck with your journey through all this!
Hi Rochelle & welcome!
I'm glad to read you're getting a 2nd opinion from one of the best neurosurgeons treating CM's & encourage you to get as many opinions from CM experts until you are comfortable w/ the direction of care.
You may be interested in joining our sub-group @ http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork.
Best wishes to you.
Here is a discussion that may also be helpful to you @ http://www.avmsurvivors.org/forum/topics/top-neurosurgeon-in-the-us.
Take care & know you're not alone.
If you aren’t comfortable with the “wait and see” advice, you are wise to search other available options. Ron, Kansas said something so clever that I wrote it down so I would remember it. Ron, Kansas said “Neurologists will say wait and see or try different drugs, Radiologists will say treat it with radiation, and Surgeons will say cut it out”. Trust you gut instincts. Good luck.