ANA Discussion Forum
Post-Treatment => Eye Issues => Topic started by: Pattiken on September 23, 2012, 12:51:35 am
I am 54 yrs young and in really good health.......I had a swishing sound in my ear for about a year and finally decided to get a hearing test which led to an MRI. Last week I was diagnosed with a right sided 7x8x4 mm intracanicular neuroma extending to the cochlear opening. ENT who told me that I will need middle fossa surgical approach. Probably going to House Clinic as I live in LA. I have so many questions I don't know where to begin.
Do I have to shave my hair on the right side? What's the likelihood of facial (eye and/or mouth) drooping and how long will it last? Is memory or speech affected? How soon after surgery (best case scenario) can I drive, excercise, etc? Is travelling by plane ok? What are long term affects of this surgery? Do these neuromas grow back?
I have read a lot of posts on this site and I didn't find specific answers to my questions. If anyone can give me some guidance, I would be very grateful!
I freely admit that I am scared about this whole process!
Hi, Patti - and welcome. I'm sorry about your AN diagnosis but glad you found the ANA website discussion forums and decided to register and post your questions, which are pertinent.
First: forget about shaving any of your hair. The doctor (an assistant, actually) will 'prep' you by shaving a very small sliver of hair that should be easily covered by the rest of your hair - even if it's short - once the operation is over and the surgery site is healing.
The likelihood of facial weakness following the surgery is approximately 5 - 15%. Usually, the weakness is temporary (a few weeks, perhaps months) due to swelling but in some cases it can be permanent. However, there are therapy and surgical techniques available to ameliorate post-op facial nerve damage from AN surgery.
It's very rare that speech is affected by the surgery but some AN patients do report some cognitive/memory loss issues. Those too, are often temporary but can be permanent although most AN surgical patients adjust to these deficits.
Resuming normal pre-op activities varies greatly and your doctor will be the best judge of what is practical and safe for you to resume, and when you should attempt to do so. Some AN surgical patients resume running, etc within a few months of their surgery. Some need a longer recovery period. I was driving again within 2 weeks of my hospital discharge, with my doctor's permission. However, we always caution AN patients in recovery to 'listen to your body' and never try to compare your rate of recovery to another AN patient as we're unique and what one person does or doesn't while recovering has no real bearing on our individual situation, age, state of heath, etc.
To the best of my knowledge, post-op plane travel is not a problem.
Possible long-term effects of the surgery are loss of unilateral hearing in the affected ear, a diminishing of the ability to balance and lesser issues that are just as problematic such as an eye that won't fully close or the inability to chew on the affected side. Some of these complications can also take an emotional toll on the patient but are usually transient.
Acoustic neuromas can and do re-grow but the rate of regrowth after surgery is less than 5%. Often, non-invasive radiation can be used to destroy a re-growing AN.
Frankly, Patti, there can be no guarantees with an acoustic neuroma and subsequent surgery. History gives us odds and likelihoods but as I stated, we're unique individuals and so its impossible to tell you exactly what will happen in your case. I wish we could, whether it were to prepare or encourage you. Unfortunately, no one can. We can only use our collective experience as AN patients to offer you the best information we can, advice if needed and, most of all, our support.
I strongly suggest you ask your doctors at HEI (good choice) these same questions for a doctor's perspective.
Meanwhile, try not to be frightened or overwhelmed. An acoustic neuroma is benign (not malignant). Surgeons have been removing them for decades and techniques have greatly improved. I'm a good example of an AN patient with a large (4.5 cm) tumor that underwent surgery and coordinated radiation with an excellent result (no real post-op issues and a rapid recovery). I trust you'll enjoy a similar outcome.
Even though it's unfortunate that you have an AN, you're extremely fortunate to be living in the same city as House Research! Many of us have flown across the country (from New Jersey, in my case) to have our acoustic neuroma surgery performed there.
Jim has given you great advice, and I'll add to his comment about post-surgery flying. I flew back to NJ 10 days after my translab and experienced no problems whatsoever. My surgery was almost five years ago and I've flown extensively, both domestically and abroad, since then and have been just fine.
Don't hesitate to contact House with your questions -- I found them to be very forthcoming about all sorts of pre-surgical questions that I had.
Best wishes as your surgery date approaches.
Catherine (Jersey Girl 2)
Thank you Jim for your prompt and very informative response. You have answered many of my concerns and I will be better prepared to meet with specialist tomorrow.
I feel a little less scared!
Thank you for info regarding flying - great to know my wings won't be clipped! As an aside, I lived noth of Boston for 10 years and miss it!
I'm not sure if you mean speech, forming words, or speaking, using the laranyx. Because my tumor was relatively large ( almost 5 cm's ) it involved my lower cranial nerves, namely numbers 9, 10, and 11. The tenth cranial nerve, the vagus, innervates the larynx and some other throat muscles among other functions. After surgery my right vocal cord was impaired and speaking was difficult as well as swallowing.
Since your AN is relatively smaller than mine was, I doubt you will have lower cranial nerve involvement. Also, if your tumor is not large enough to bridge the CP Angle and reach your brain stem and/or cerebellum, it is doubtful your speech will be affected either. If large enough, AN's can compress the brain.
Thank you for clarifying . Sounds like you had quite a time dealing with your AN. Hope everything has worked out with you - it's all a bit overwhelming for me right now. I don't know what to expect as my new 'normal'.
Hi Patti, welcome to the list. It sounds like your questions have been answered.
I had a similar sized tumor and middle fossa surgery with the HEI doctors on 8/1/12. You are soooo fortunate to live close to their offices and St Vincent's hospital which is just across the street. My home is in Oregon. The House surgeons are gifted and the staff at St. Vincent's is exceptional. The ICU staff and regular hospital room staff are specifically trained to work with AN patients. The whole package of care is extraordinary from beginning to end. I have very long hair and they found a way to cut a very small half circle line of hair on the side of my head above the ear that I combed over soon after surgery. No one could ever have guessed I just had brain surgery. If you have any other questions, please feel free to PM me.