Ronan,
Good for you to advocate for your father and to get on-line!
Welcome.
RE:
"The doctors say they will be taking only a part of the tumor out as taking the whole thing out will be too risky. Is this a normal procedure? "What your father’s surgeons are advocating is de-bulking of the tumor. This involves removing the bulk of the tumor and leaving residual behind… and watching it via MRI to see if it shrivels up, disappears, or re-grows. If there is re-growth- it can later be treated with Radiosurgery (Gamma knife etc.) This de-bulking approach also has a higher chance of preserving the facial nerve. Because the tumor is big I advise that you and your Dad prepare for the reality that he
could have some issues- post surgery. I initially had balance issues- 6 months later I am now fine there. I woke up with complete Bells Palsy. Almost at 7 months now - I have 60 % facial movement back but I developed synkinesis (this happens in ‘some’ cases). I think it is advisable to leave residual tumor as to not damage the facial nerve (I had 99% tumor removed and now I am thinking they should have left more tumor behind to preserve the facial nerve to which my tumor had completely incased). It sounds to me that your father’s surgeon is advocating the right thing. It is important to be
realistically aware that the bigger the tumor the bigger the chance of residual effects- (post surgery). However know that the mortality rate for this surgery is VERY LOW- as technology
has improved the treatment process tenfold (over this past decade.)
Here is some info from the Canadian group
http://www.anac.ca/endocs/Finding%20Qualified%20Medical%20Professionals%20-%20May%2020.pdfAnd from our ANA site here
http://www.anausa.org/questions_for_physicians.htmlIt is imperative that you chose a well qualified and experienced "neurotologist and neurosurgeon
team" to do this surgery. Also ask what sort of follow up care they offer (physiotherapy etc)
I highly recommend getting these booklets
https://secure.baxinternet.com/~anausa/for_sale.htmlThe Canadian group also has some booklets available
http://www.anac.ca/links.htmlI wish I had bought these and read these
before my surgery.
Again- know that the outcome of AN surgery is very different with each patient. There are people with tumors smaller than mine who have had long term lingering effects from surgery yet there are others with bigger tumors (than mine) that sailed through this with minimal post op complications. My only complaint now, with my surgery outcome, is the synkinesis that came as the facial nerve branches grew back and attached to the wrong muscles. I think that if your Dad’s physician is suggesting only removing part of the tumor this is good -as this will increase the chances of facial nerve preservation.
With a large tumor chances are - it will be a l
ong surgery. I recommend that your father does a blood draw and donates his own blood... a couple weeks before his surgery- in case a blood transfusion is needed (as was my case)
Try to encourage your Dad to get on line and join us. This group was key in my successful recovery- and they are still supporting me as I cope with getting physiotherapy for the face (remember your Dad may
not even have this issue- each patient is totally different).
Please remind you Dad that the mortality rate for this sort of surgery is VERY LOW now-a-days… Nevertheless for some of us it has been a
life changing event and it is advisable to prepare yourselves with knowledge and information.
Here is a good link that explains treatment
http://www.umm.edu/otolaryngology/acoustic_neuromas.htmHere are a few text book pages that explain this- if you are up to reading a medical text book
http://books.google.com/books?id=4NPQ8Mqt-QUC&pg=PA356&lpg=PA356&dq=debulking+large+acoustic+neuroma+tumor&source=web&ots=nahN6Rjc2b&sig=wspU-LOAxgaX527uqPPmm64e-sE&hl=en#PPA356,M1Here is an on-line medical dictionary
http://medical-dictionary.thefreedictionary.com/(to help you de-code their Greek-Latin language
)
If the surgeons are suggesting “multiple surgeries� I would be concerned- mainly because of your father’s age. I had a surgeon who wanted to space my treatment into 3 separate surgeries and I declined being that I had already has a one major non AN relate surgery -that year. (This may have worked for a younger patient but I was not game or up for it.) Basically you need to ask lots of questions of the surgeons -as to what surgical approach (translab or retrosigmoid) they are planning and
how many successive surgeries are they planning to do to remove and/or
de-bulk the tumor (not including radio surgery if there is re-growth).
Gee I hope I have not overwhelmed you. Send me a private post particularly if you have more questions about the 2 surgical approaches – retrosigmoid vs translab.
RE
"I do not reside in the US"Remember that our forum is
global and all are welcome. We have writers from all over the globe.
Which country are you in?4
