Denise,Hugs to you my fellow Canadian. I know this whole realization of having an AN tumor is freaky – and I would be a bit worried if you weren’t a little stressed out.
Who the author of the Neurotology textbook is will depend on whether the translab has a better view or not. I went though this very issue when trying to pick the Retrosigmoid over the translab. It was an ongoing pendulum as I gathered information and talked to expert surgeons and experienced patients.
Because we were not 100% certain I had an AN tumor (or something else like a meningioma) and I still had great hearing we chose the Retrosigmoid. At 4cm I did not have the radiation option due to the already compressed brainstem (A tumor will swell from radiation before it dies and shrivels)
When I woke up SSD, learning the tumor was in fact an AN and I had full one side facial palsy I did lay there thinking,
“uh oh maybe I should have had the translab??!!� The surgeons kept telling me that it would not have made much of a difference and many translab patients can get facial palsy too (and there are some on thi svery forum who experienced this- so it is well documented). I did not know what to believe 5 months ago. I was not sure I believed them when they said that my facial palsy would resolve as they explained they left residual tumor along near the tumor encased facial nerve. They explained my facial nerve was not damaged but more traumatized (and this can happen with translab too.)
Here it is 5 months later and I HAVE regained 50% + movement back in my face. 99% of the tumor was removed.
So they have proved themselves to be right -
after all. (Up until now I have been hesitant to comment on whether I made a good choice or not.)
The concern with radiating tumors is that this can change the nature of the tumor and often making it more adherent to the brain- if it needs to be surgically removed later-on . Radiation WILL change the nature and the consistency of the tumor. (Hopefully change it enough to kill the thing -but not always.) This has been well documented. However there have been many successful radiation stories too (Lorenzo comes to mind)- but often they do feel pretty darn awful after the treatment as everything inside the head is swollen and irritated (much like us surgery folks experienced also.) There are other issues with radiation as it can affect areas other than just the tumor location. An experienced radiation surgeon (GK etc) with an excellent record of precision -is key as… with micro surgery.
Even if the tumor does come out chances are your tinnitus and full feeling will remain. However if you have the tumor surgically removed you will have a pathology/cytology report of the dissection. If it stays there with radiation treatment you will never kwno the exact make-up of those tumor cells. If your hearing is sacrificed then you WILL loose your directional sound. This is a major adjustment as I cannot tell where sounds are coming from. Cochlear or BAHA implants will not correct loss of directional sound. Keep in mind some Retrosigmoid patents with smaller tumors, than mine, have maintained some directional hearing (NOT translab though- no a chance at all!)
EG.
Yesterday I could not, for the life of me, find my cell phone. I did my old trick of phoning it with my house phone. I could hear it ringing but it took me over 10 minutes of calling it to locate that it was ringing from a coat pocket hanging on a hook. (Thanks to my lab retriever for helping me out)
I am going to give this more time- as I know that the body heals and a ‘brain can retrain’ to adjustments… then I will look at hearing aids for SSD.
Ultimately Denise- the decision will be yours- and yours to live with. You
do have an AN tumor. Soon you will find out if there is any recent growth
or not. Wait until then before you worry too much. Once you have more information
then decide if you want to act – or continue to wait and watch.
I was not prone to headaches prior to Retrosigmoid surgery and I do not have headaches now – after my surgery. (Headaches have been issues with Retrosigmoid patients – for me it has NOT been). The only drug I am on now is caffeine from caramel lattes.
Soon Dr Agrawal will be up there with Dr. Parnes – once he has finished his fellowship at Stanford University.
http://med.stanford.edu/ohns/faculty/ (scroll down to see his photo)
He has just trained with one of the most objective surgeons- in the world. Dr. Agrawal returns to Canada sometime in June. Maybe ask him for his opinion. I sincerely believe he will give you an objective one. Don’t be fooled by his youthful appearance... Dr Agrawal is well educated and has had lots of state-of-the-art technology hands-on-experience (on my brain included!
). Best of all he has
great people skills… and may be able to put your mind more at ease. His teacher, Dr. Jackler, was very good at doing that with me. It is Dr. Agrawal that stays connected with me post surgery- and he has put mind at ease also.
More HUGS.
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