ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: mindyandy on January 06, 2012, 01:32:50 pm
-
Dr. Friedman went over my scans and phoned me today. He said if I wanted to opt for surgery then Retrosigmoid is the approach is wanting to take. He said that my AN has slowly grown since my CK in 2008. He wants to preserve my hearing as nuch as possible. Of course since I had radiation my percentages are a little lower for hearing salvage. I have very good hearing now so I'm hoping.
I asked about the facial nerve whether its exposed 1st? He said no its exposed last.
He also said my TN may or may not go away. He thinks it will but is uncertain because it could be caused by the radiation.
Anybody out there have Retro? If so tell me your story.....
-
Mindy ~
Retrosigmoid approach is the favored surgical approach in many AN cases.
I underwent 'retro' in 2006 (not at HEI) to expose and debulk a very large (4.5 cm) acoustic neuroma that was impacting my brain stem. The neurosurgeon reduced the tumor about 40% in size and it was later radiated, as scheduled (via FSR). My 'retro' surgery was fabulously successful. My symptoms (intermittent stabbing pain at the AN site, dizziness, loss of the sense of taste, fatigue) all disappeared almost immediately following the surgery. I suffered slight double vision for about 2 days, which then disappeared. No headaches at all, before or after the surgery. I was out of the hospital within 5 days and driving - with my doctor's permission - within another week. I enjoyed a relatively rapid, uneventful recovery although I lost some stamina (but I'm ancient, which may be a factor, y'think?). Now, 5½ years later, I'm doing great!
I hope that you'll have a similar experience and that my story is helpful to you. :)
Jim
-
I am having Translab with dr. Friedman on the 25th so I am not up on your procedure. However, I am glad to see you moving forward Mindy.
-
Hi Mindyandy,
I just had retrosigmoid in Boston 9/27/11 for a 1.4cm tumor. Pre-diagnosis symptoms were tinnitis, decreased hearing on AN side, and slight balance issues. The surgery went really well. I spent one night in the ICU and then one night in a regular room. I was very fortunate to have my hearing preserved (~70%) and not to have dizziness or nausea post surgery. I had some slight wonkiness. The physical therapists set up all sorts of obstacle courses in the hall with glove boxes which I had no problem manuevering so I got to go home after the second night. The worst part of the hospital was that my neck was extremely sore from being in one position for 9.5 hours. My jaw also hurt from having the breathing tube in for so long. Once at home I walked outside every day (10-15min) and the slight wonkiness resolved within a few weeks. I still have tinnitus. I only needed to take the hard core pain meds for a few days and then just tylenol. I did buy a seat for my shower since water flowing over my head made me very dizzy the first few showers. I did have the post surgery fatigue so I slept a lot! I had mild headaches for the 5th through 9th weeks post surgery. The pain was not bad enough to have to take any medicine. Now I dont get any headaches. I have read many stories on this site where people who undergo retrosigmoid unfortunately do battle headaches. My tumor extended outside the IAC so I was only a candidate for retrosigmoid or translab. Since I really wanted to save my hearing I chose retrosigmoid. I chose a surgeon who had lots of experience with this approach. It definately ended up being the right choice for me. So far so good - thank god! I hope you also have an uneventful procedure. From what I have read on this site HEI is a great place for surgery. Best wishes!!!!
-
Mindy,
I also had retrosigmoid for a previously radiated tumor. I didn't have any useful hearing left at the time of surgery, but my neurosurgeon specializes in retrosigmoid. Like Dr. Friedman, he said that with retro the facial nerve is exposed last. In his opinion with translab it is exposed too soon, making it more vulnerable.
Because my tumor was large, and had been radiated, all the doctors I had consulted with gave me very poor chances of hearing preservation. However Dr. Akagami was able to save my facial nerve - I woke up with very light facial weakness, unnoticeable, which went away within a few weeks. I had a very good recovery, no balance issues and no headaches. My only complaint was the sore neck and shoulder, which was due to a previous injury that was aggravated by the positioning during surgery. This took quite a few months to improve.
I know you are also concerned about the TN. I didn't have TN, but my trigeminal nerve was impacted by the tumor, causing facial numbness, metallic taste and dry eye. After surgery the symptoms fluctuated for a while, and then completely disappeared. I have been told that the trigeminal nerve is very resilient and can heal over time. So for sure there is hope that your TN could resolve.
I think that if you eventually decide to have surgery Dr Friedmann will be an excellent choice.
Marianna
-
Had retrosigmoid approach 5/31/07. Chose it over translab because my hearing was diminished but I had decent word recognition. Odds of keeping your hearing with retrosigmoid aren't good, but obviously they are much better than with translab - where hearing loss is pretty much a given.
Long story short, my AN was wrapped around my hearing nerve and the docs had to sacrifice the nerve in order to remove the entire tumor; so I'm SSD which is my only permanent "issue" from my AN surgery.
I never had tinnitus (before or after surgery), I have no headaches related to my AN surgery, and I only had slight facial paralysis 24 hours post op (single dose of steroids cleared it up).
So I was very happy with my choice of retrosigmoid.
Jan
-
All these stories. I just love it. This helps me very much. I just love this place.....you guys are the BEST.
Mindy
-
Just received a message from Rita the surgery scheduler from Dr.Fridemans office. When I call her back tomorrow I will have a surgery date. :'(
-
Retro here.
Reading your post really made my hart go out to you. Regrowth after CK. What a bummer.
I'm over a year out and can't feel most of my head in the area that was operated on. I was told the nerves should grow back. But they never did. Its allot better than the 10% chance of nerves growing back and causing chronic pain.
My hair is also growning funny around the scar area.
The up side to Retro, that I haven't seen on these forums, is that your ear (outside looks) won't be messed with. I know a local girl that had translab and her ear is not sticking out as far as it used to. And it looks funny when she pulls her hair back.
As far as Tinnitus goes.
Its just annoying is all. Its not painful. Its something you can live with just fine.
William Shatner speaks about his tinnitus
http://www.youtube.com/watch?v=E7bL9BhESYA
A scientific explanation of tinnitus.
http://discovermagazine.com/2010/oct/26-ringing-in-the-ears-goes-much-deeper
P. S. Don't forget your carmex