When I found myself short of breath with non stop heart palpitations, struggling to regulate my breathing and couldn't swallow following a very strong vertigo episode last February, I ended up in the hospital for 2 days, with 3 neurologist telling me my symptoms were not related to my condition. I was told I had a "anxiety attack". At first, I was furious. I do not have anxiety. Then, being repeatedly told this, I thought "maybe I do have anxiety? How can they all be wrong"? When I got to Arizona and we told Dr.Spetzler assistant this, he was speechless. How can all neurologists know that the brainstem control all these things, see that there is a Cavernoma on my brainstem, and say it is not related? Because they learned this, but they also know "if the brainstem bleeds, the patient dies". That's it. I was not dead. I was there begging them to help me, therefore, it could not be related :)
It even goes deeper than that... where exactly in your brainstem is it located? Different location affect other things as well.
Click here to learn about Brainstem: Pons
Click here to learn about Brainstem: Medulla
Click here to learn about Brainstem: Midbrain
Click here to learn about Brainstem: Thalamus
"Located" can mean "in" it, or next to it. Its one of those complex world where it does not have to be inside of it to be affected by it. I found myself having all those symptoms, because the brainstem is so small, that it doesnt need much blood to spread and affect all surrounding areas.
Not only is it SO important to find a neurologist that specialize in the condition, but finding one that is familiar with the location of the Cavernoma is not only important, but crucial! That's where Dr. Spetzler came in. He is the number one neurosurgeon in the world when it comes to Brainstem surgery. He has done more than anybody else in the world. To him, operating in the brainstem is not only something he is used to, its routine! That's what he does, simply because people from all over the world come to it for that. There are so many amazing neurosurgeons out there, but when it comes to the brainstem, no surgeons has done it more than Spetzler. However, there are some times when even Dr.Spetzler wont operate in the brainstem. By his nurses, I was told there are 2 reasons:
1)There is no way he can take the cavernoma out without leaving you with a very high rate of severe deficits now, to the point that you would be worse off then just leave it alone to run its course. In other words, why get yourself in this situation now if you still have years of decent quality of life ahead.
2)Your health is so bad right now, and your condition so poor, that the surgery will kill you... so why die now?
When I was told surgery was an option for me, the hardest, as you know, that it was a damned if you do, damned if you dont. He told me that he could not tell me what was best. However, If i chose surgery, I had a very high risk of deficits, but my chance of survival with the surgery was much greater than the 1% I was given if I didnt do anything. It was incredible hard to choose surgery "now"... knowing that maybe i had 5+ years left until this happens naturally. Did I really want to live with deficits now, or did i just want to die later.... Being a mom naturally determined that for me. I was completely ready to go thru this recovery and slowly regain my quality of life. Knowledge is power, but you have to dig to find it!
All this said, I had to find a neurologist to follow with since I came back home. I need follow up MRI's every year and a neurologist to follow with when it comes to my recovery, symptoms, deficits... even if that ends up being just one visit a year :) My neurosurgeon here was great. He was not specialized in Cavernoma or Brainstem lesions, but he was great and caring. However, a neurologist is what i needed to find, not a neurosurgeon. Did I want to go back to the Neurologists that told me it was having a anxiety attack because they couldnt see the bleeds on their Scan, because they only way to see a drop of blood in the brainstem is thru surgery? NO. So, i didnt want to see them again. I am not bitter, I just didnt want to waste my time telling them they were wrong. hehehe So, thru my facebook page, I was told about a very nice neurologist group in Dayton, Ohio. They needed a referral from my Doctor in order to see me, so i called my Doctor. He is the one that referred me to my neurologist so i simply told him that she was not specialized in my condition and couldnt help me much. He didnt hesitate, and apparently he faxed my stuff right away and referred me because the Dayton Institute of Neurological disorder called "me" and gave me an appointment. I saw him yesterday and will write later about the appointment. I was more than happily surprised to find out he is a "Specialist in vascular and interventional neurology". It was a very nice appointment. He was very excited to follow one of "the man" (Dr.Spetzler) patient. I will write about the update later. I can tell you that I apparently had to go all the way to Dayton to find a Neurologist that understood the power of a cavernoma in the brainstem and the effect it has on it versus a anxiety attact. hahahaha