Hey guys its been awhile I have been bouncing from this hospital to that Dr to blood draws and pain med refills. But otherwise all is well .... Last time I posted something I was in a bad place and didnt know what to do with Waner vs Suen. Well I did go see Dr. Bernstein and Dr. Waner in NYC they were the NICEST you could ask for. They say (unlike my other docs here in GTU in washington DC) That yes it is a very angry AVM and will need alot of work. BUT they are very hopeful and will be able to fix it .... and im not going to loose the feeling in the right side of my face .... I was super worried about that. They also say that with a full resection of my ear I will NOT loose my hearing ... which I was also concerned about ... but all I hear right now is the blood pumping all day long "whoosh whoosh whoosh" is all I hear and lemme tell you with working in the veterinary field and having to listen to hearts all day its a challenge. I bought the best of the best stethescope and just use the "good" ear.
Surgery is scheduled for May 17 for sclerotherapy through the groin and injections in my face with Bernstein. Then I hang out in the lovely hospital .... (yeah right) and go to have full resection with Waner on May 20th. So its happeneing soon .... im just trying to enjoy my birthday which is April 15th but its like the closer we get to my birthday the sooner I have to start packing again for NYC....... sooo yeah ..... They do also say I am going to have to visit then 8 months later to make sure its not coming back .... unfortunatley mine will not be able to be completley resolved so it I will be going to NYC at last once a year... if it starts up again they will perform it again ....
Hear's (pun intended) hoping for a successful outcome.
My wife had a bruit due to a brain AVM. As she completed embos, the bruit got quieter, finally going away. SHE MISSED IT! Every since she was a child, the noise helped her relax and go to sleep at night. Thankfully, now it doesn't bother her.
Want to start with wishing you an early Happy Happy Birthday on April 15th!!! Sounds like you have a great medical team working with you to deal with this very angry AVM to help give you your life back and will bring a lot more Peace into your life! Please do keep us posted on how things go - your AVM family is proud to be with you every step of the way :-)!
Hello I know how you feel about the constant whooshing...I can not believe you are working! I could not sleep at all. Once they did the embolism the whooshing stopped and only a dozen times have I heard it and mine was operated on last Jan so over a year. I just turn my head the other way and it stops. The doctors wanted to go back in after six months but my head pain got worse from the long surgery. If I still keep hearing it I will go in for a check up.
Best of luck to you. I know its scary as &**))! but you will feel so much better in the long run. Happy early birthday to you! You are going to fine and you will heal and be closer to your old self again.
Good for you for finding the right doctors. It is so important to find the correct doctors. Its shocking how many neuros who dont specialize in this field try to operatte on us.
Let us know how it goes and I will be praying for you and sending positive thoughts
Hi K This is weird, around 5 years ago, I started having hearing loss, in my right ear, I had hearing aids but really couldn't come to terms with these, so I went to an ENT surgeon who informed that I had Otersclerosis, which is softening of my stapes or "stirrup bone"
I had an operation to replace this with a Platinum "piston" which vastly improved my hearing in that ear that I don't need any hearing aids.
Around a year or so later, the hearing went in my left ear, and I had the same op to replace the stape.
I used to have this awful whooshing sound myself and the ENT guy told me that there are Arteries very close to the cochleia and I could hear the blood going through this.
Since having my stapendectomy I don't get that sound at all, or the tinnitus that went with it.
However I have recently just been diagnosed with an AVM on my left frontal lobe (which I have had since a child) and can't help feeling these are related. I am going to ask my Neurosurgeon about this and will let you know the results when I get them.