Questions about Middle Fossa surgery

[Dawn]

Hi everyone.

I just had my phone consultation with the house clinic in LA and I was very pleased with the time and details of the conversation.

I was originally told the surgery option was to be the translab, but today I was told that being I have 100% hearing as of right now but do have deficits with my vestibular nerve/system..about 40%, that the best type of procedure to remove my small tumor would be the middle fossa procedure.

So my question is for all the people that have had the middle fossa procedure if you could tell me about it surgery time, post op recovery and how your feeling now?

I would appreciate any thoughts/information anyone can give on this procedure would be great.

Thanks
Dawn

[Captain Deb]

Hi Dawn,
My MF for my 1+cm tumor lasted a mere 2 1/2 hrs with 5 days at St Vincents and another 5 at Seton Hall, the guest house adjacent to the hospital. Had I not been one of the unlucky few to contract persistent post-op headaches, which still plague me 6 years later, I probably would have been good to go in about 6 to 8 weeks. Actually the headaches weren't as bad at 6 weeks as they were at 6 months. Be sure to do your research on radiosurgery as well especially if you have a small tumor-- -I certainly wish I had.

Capt Deb

[Captain Deb]

I'm posting on a blackberry and can't edit--that sentence should read "actuall my headaches weren't so bad at 6 weeks as they were at 6 months"

Capt Deb

Fixed.

[Dawn]

Thank you Capt Deb for your reply

so you have headaches still?  Is that one of the complications with Middle Fossa surgery.  I have been looking up information but haven't found anything about side effects or after surgery.  thanks for the help.

Dawn

[leapyrtwins]

Dawn -

Kate B also had mid fossa @ House.  I haven't seen her on the forum too much recently, but I'm sure if you PM'd her, she'd be happy to share her experience with you.

Jan

[Sue]

Hi Dawn,

Unfortunately, every AN solution has the possibility of side effects that can either be an annoyance, or life altering.  I hope Cap't Deb doesn't mind if I say that I think her headaches have been life altering.  She's had a tough go of it, for sure.  But not everyone has that.  Some people can have headaches with radiosurgery, but I have had no such complication, thank heaven.  Severe headaches can be one of the most unpleasant of side effects, along with severe vertigo, I would guess.  But many people have their treatment and then go on their merry way with not much to complain about. 

Do your research, look at all your options, try to make an informed choice.  Easy to say, hard to do sometimes.  Especially when we can't look into that crystal ball and see what lies ahead with the treatments that we choose.  It would be wonderful if we could do that.   

Take care and best of luck to you,

Sue in Vancouver USA

[Dog Lover]

Dawn,

I had Mid Fossa last Aug. My surgery time was 5 hrs, and I was in the hospital for 4 1/2 days. The first few days suck. No other way to say it. But after I got home I seemed to get better much quicker (typical, I think for any hospital stay). I was walking on my own with no assistance (for balance) 2 weeks post-op and was back to working 1/2 time from home by 6 weeks and full time at the office at 8 weeks. I do remember that I had headaches for the first week that I was home, but I think a lot of that was due to the postion that I was in during surgery - tight tight neck muscles. I went to a massage therapist several times and that was extremely helpful.

Now - at 5 months post op, I feel pretty much my normal self most of the time. I still get tired, but that is inproving and when I'm tired the balance tends to be a bit off. I don't think anyone else notices it, but i am aware of it. Otherwise, driving, working, traveling, etc. Back to my normal life with the exception that I can't hear as good out of my AN ear as I did before.

Cathy

[Raven]

Hi Dawn,

I had two middle fossa surgeries in the span of eight days, the first one was twelve hours and the second one was eight hours. I only spent fours days in the hospital each time. I was never in much pain and my facial issues went away in about a week. Once I got home I used a treadmill to help the recovery process. Rule of thumb is a week to recover for every hour your under. I was driving in about three weeks and back to work in about six weeks. Today I still feel yucky all the time, mainly balance issues, completly deaf in my left ear and tinittus in both ears all the time. After a few months when I didn't feel nay better I was really depressed, my Dr. said the way I'm feeling is the "new normal". So I decided there was no sense in felling yucky and depressed, I couldn't do anything about feeling yucky but I could do something about being depressed..........so I did.

Hope this helps

John

[Lainie181818]

Hi Dawn
I had mid fossa at House almost 3 years ago. I was in St Vincents hospital for 5 days. My recovery was long, in fact I still feel like I am recovering. My AN was 1.7 cm and I have lost hearing completely in left ear. My dizziness varies daily and depends on tiredness or stress. Make sure you have a good support system physically and mentally. I had facial issues and eye problems, My eye is fine now and my face about 75% back. A great Eye Dr at St Vincents is Dr Michael Roberts, He was wonderful and very realistic about my recovery. LA David still sees him and really likes him. Hopefully you won't need his services. Who is your medical team at House? I suffered from depression pretty badly during the first 6 months, however I was dealing with a lot of other crap at the time. So try and clear your plate of any emotional issues that might be in your life and concentrate on YOU getting better. Fatigue will be a huge issue, don't fight it. For the first few weeks think of yourself as an infant again sleeping around the clock. Its normal we have all been through it.
Now for the good things. After realizing that my life now is different. I do things that normally I wouldn't think of doing. I have travelled more in the last 2 years than my whole life. I fear almost nothing. Yes it helps that my husband is an airline Pilot but now when he says come to Paris or Maui or quite honestly anywhere I go. I went to the Presidential Inauguration last week,  typing this I realise that I have a damn good life. I relish the taste of food and a good glass of wine Ok to those who know me it doesn't have to be that good. I have made some wonderful friends on this website and get together with my LA ANers about once a month. After we have decided where we are going to sit [ due to our deafness ] We enjoy each others company and have a common bond. I would not have met these people had it not been for ny AN. We try and meet patients that come to the House clinic and offer support. Last night we went to a Wonderful concert That Marci arranged for us. Admittedly we had about 2 good ears between the 5 of us but it was great. I found that my sense of humor has helped me throughout but I still allow myself a Pitty Party when I need one. Please contact me if you need to know anything else and hopefully none of this stuff will be relevent to you, after your surgery.
Lainie

[Dawn]

Hi to all that replied, I do so appreciate all the information

Lainie - I don't really have a team at House, I just sent my test results to them for a phone consultation and I heard back from Dr. Joe Fayad, he will be calling me back on Tuesday after speaking with the Neuroradiologist there to determine exactly where the tumor lies

He suggested the Mid Fossa b/c I have 100% hearing right now and 40% deficit with my vestibular nerve.  He said that with the MF procedure he thinks I should get a hearing preservation of 70-75%....when I heard that I was so excited as I was told by one physician that he wanted to do translab and I would lose 100% hearing so this was good news for me!! I will have to ask him who he can recommend in NY/NJ area that can perform this procedure.

I have to say, I thought this procedure would be maybe less post-op problems/complications but by the few of you that did respond I have to say I am a little upset hearing all the problems you have all been thru and are still having to present.

I know there is no great way to treat AN and there will be post-op problems, I have a very physical job...I am a Physical Therapist Assistant which requires me to do a lot of bending/turning and get this....teaching balance exercises....lol
I am worried that I will have problems returning to work. 

Has anyone out there felt back to normal post-op? It doesn't sound this way to me

Thank you all for the help
Dawn

[leapyrtwins]

 

Has anyone out there felt back to normal post-op? It doesn't sound this way to me

Although it took a little while, I did.  Still do 

Jan

[sgerrard]

I know there is no great way to treat AN and there will be post-op problems, I have a very physical job...I am a Physical Therapist Assistant which requires me to do a lot of bending/turning and get this....teaching balance exercises....lol
I am worried that I will have problems returning to work. 

Has anyone out there felt back to normal post-op? It doesn't sound this way to me

I thought doglover Cathy's result was pretty good, and she sounds like she is pretty near normal now.  Middle Fossa does seem to have some higher risks, but it can also turn out quite well. Like most things with ANs, it is luck of the draw in the end.

I think having a physical therapist that truly understood the kinds of issues patients have to deal with would be a great thing. If you tell patients that you have been through this, they will instantly feel more comfortable with you, and more inclined to work with you as well. You would really know what you are talking about, and there are not that many doctors or therapists that have actually experienced the maladies they are treating.

Steve

[NL]

Hi Dawn,

I had surgery at House with good results and a fairly smooth recovery, but I didn't have a middle fossa. So since it's middle fossa stories you're looking for, I dug up the "recovery threads" of two of my AN buddies who did have middle fossa's at House. Both had their surgeries in October 2008, and I'm sure either would be happy to talk to you and answer any questions if you send them a PM.

Here are the links to their threads:

Mathilda's Update - http://anausa.org/forum/index.php?topic=7816.0

Cheri's Update - http://anausa.org/forum/index.php?topic=7646.0

And if either of them see your post, I'm sure they'll jump right in.

Good luck and hope this helps,

Nancy

[TP]

I had my surgery a few years ago and have not done much research on the different types of surgical procedures but I would find it very interesting for those of you are "well versed and well read" to share with us in layman's terms what each procedure does. For example, my surgery they cut behind my ear, I have a scar (hole) about 2 inches long and about 1/4 inch deep into my head. I am totally deaf and the good news is I never suffered from head aches after my surgery (occasional head ache but NOTHING like what I had before my surgery). My tumor was on my brain stem. I have no idea if the Dr stuffed my incision with any mesh or metal, I don't think he did but quit frankly I never asked (I didn't join the forum until about 9 months after my surgery.)

I appreciate the explanation, I hope someone can share with us with some short (cuz my attention span stinks) on each type of procedure, I think "newbies" and "oldbies" like me would enjoy reading this.

[JerseyGirl2]

Hi, Dawn,

You ask if anyone ever feels normal again following AN surgery. I had translab rather than middle fossa, but I began feeling normal (or at least 99.9%) at about the 5-month post-surgery point. Extreme fatigue was my only post-surgical issue (hearing loss was my only pre-surgery symptom), and it improved steadily over time. I was certainly out and about and totally back to my regular routine well before the 5-month mark, but I believe it was between the fifth and sixth month that I actually didn't think about my AN much anymore and was "full speed ahead." I think most would agree that the whole AN journey is very individualized, so it's probably wise to avoid too many generalizations. It's also good to remember that not every AN patient posts on this forum, and I do think it's safe to assume that many of the non-participants have excellent surgical outcomes and good recoveries.

I didn't discover this forum until about six months after my surgery -- I had recently gotten my BAHA processor and was looking around for commentary by BAHA users who'd had acoustic neuromas (other BAHA forums I encountered seemed to concentrate on conditions other than AN-related BAHA use) -- and was really amazed at some of the stories here. I was equally impressed with the support and encouragement everyone displayed.

I felt like a total slacker in the AN world after reading many of the accounts of all the pre- and post-surgical issues folks were facing, and, again, really awed by the courage and pro-active attitudes that were so evident. I'm not sure that I could have been that brave.  I concluded that there must be quite a few AN survivors like me -- who really never felt bad nor experienced any pain while they were in the hospital, even in the ICU; had no problems with dizziness, nausea, double vision, etc.; cleaned their plate at every meal; were able to watch television and read a lot in their hospital bed; slept comfortably through the night; and who, other than simply needing time to recover from the physical effects of a lengthy and complex surgery, pretty much cruised through things -- and these patients just never have had an inclination to search out a forum such as this one.

I gather from your post that you're considering House, but not particiularly leaning in that direction.  I had an excellent experience there and cannot say enough good things about the staff, hospital, etc. But as you've seen on this forum, there are many excellent places in the country for treatment, and the most important thing is for you to feel comfortable with your final decision.