ANA Discussion Forum
General Category => AN Issues => Topic started by: Dawn on January 24, 2009, 07:29:39 pm
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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
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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
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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. :)
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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 (http://anausa.org/forum/index.php?topic=7816.0)
Cheri's Update - http://anausa.org/forum/index.php?topic=7646.0 (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
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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.
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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.
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sorry about all the underlining in my previous post -- not sure how that happened. Maybe I'm NOT back to normal.
Catherine (JerseyGirl 2)
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fixed Catherine... with the magic button that Mods get! ;) No worries... will give underlining and BOLD and Italics lessons later this week!
Carry on! :)
Phyl
sorry about all the underlining in my previous post -- not sure how that happened. Maybe I'm NOT back to normal.
Catherine (JerseyGirl 2)
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Hi Dawn,
I'm glad to see that middle fossa is a possibility for you. With 100% hearing in your AN ear I thought that translab might have been indicated becuase of the tumor location. If you can save your hearing that would be wonderful. I hope this works out for you. As for returning to normal post-surgery, besides being SSD my balance issues are much better than they were before surgery and even if they never get better then they are right now, they are not a major obstacle in my life and don't prevent me from doing pretty much everything I did before. Call me crazy but I plan to try bike riding and horseback riding in the spring and see what happens.
Best wishes,
Wendy
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I think that depends on what your present "normal" is. Mine was windsurfing, sailing, rockclimbing, boogieboading, running, skipping, jumping, and all sorts of nutty stuff like that! Now I have the New Normal. A very different life, but a good one thanks to good docs and the right meds and the support of this formum. Not eveyone ends up with headaches, especially if you don't have them to begin with.
Capt Deb
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Thank you all for your posts they are so helpful to me....as you may be able to tell, I am very scared/nervous/upset...etc I know you all went though the same thing and many are still going through it.
Jerseygirl - thank you for what you wrote it was very reassuring to me to read that. I would love to go to House but I live in NJ and at present just couldn't afford to go out there for the procedure and recovery time. I have 2 young kids and wouldn't want to be away that far for too long. I am setting up a consult with Dr. Post to get his opinion on what procedure would be best for me. I currently have 100% hearing in both ears and a 40% deficit on my vestibular nerve. I am also going to ask Dr. Joe Fayad from House tomorrow when he calls me back for referrals out here in NY
Thanks again
Dawn
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Dawn,
I'm positive you'll do absolutely fine in New York! I imagine you've read many posts here from folks who've been treated in NYC and they are certainly passionate about their doctors and the treatment they received. And I think you can be confident that Dr. Fayad will give you good advice.
I have to say that when my New Jersey doctor said "Go. To. House." immediately after giving me my AN diagnosis I was pretty taken aback and almost as stunned by that suggestion as I was by the diagnosis. Northeasterners (I'm a southerner, by the way) tend to be rather, shall we say, northeast-centric, so the thought of leaving the area for just about anything can be a shock. I actually kept my "going to Los Angeles for surgery" under wraps for as long as possible. I figured people would think that I must be on my death bed and CA was the only place that could treat whatever malady I had, or that I must be entering a rehab facility along with Paris Hilton and Britney Spears (this was about the same time that Britney's issues were in all the headlines). I'm very thankful that our only child was in graduate school at the time so I didn't have to face the dilemma of leaving a young child at home -- that's hard to do regardless of the issues.
I received a mailing from the New Jersey Acoustic Neuroma Association yesterday announcing a February 22 get-together in Toms River. There's nothing on their website (www.ananj.org) yet about this meeting, but if you're interested, please PM me and I'll send you the contact e-mail addresses to RSVP. I've only been to one ANANJ event -- an excellent mini-conference in Berkeley Heights last fall which was quite well attended -- so I don't know how large a crowd these smaller meetings attract. It might be helpful for you to talk one-on-one with people in different stages of the AN journey. Let us know what you hear from Dr. Fayad!
Catherine (JerseyGirl2)
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Hi Catherine,
I did get the flyer about the AN conference in Feb...
I had my consult again with Dr. Fayad he wants me to go for another type of hearing test to see what the results are, he said if they are not "flat" then there is a good chance I can retain 60-75% of my hearing with MF surgery. He also said it is a little bit more tricky of a surgery b/c the tumor is deep in the IAC but that he treats it a lot.
He is sending me prescription for the hearing test he wants and will look into any docs in the NY City area that do Mid Fossa surgeries....
If anyone knows of any or have had this surgery in NYC area please let me know doctors names and how they did
Thanks to all
Dawn
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I had middle fossa on a relatively small an (shouldn't have had it in the first place) - i was back at work in 6 weeks. I have had severe headaches since - thats 7 years now. I have a headache every day and for about 2 weeks in a month, they are debilitating. My hearing was around 70% at time of op and i lost it all. MF does not guarantee hearing preservation. I have SSD and tinitus.
The worse part is that it grew back and now i am faced with further action. i will be radiating the bast..d (excuse the french).
the top Sydney surgeon has now stopped doing MF because of the side effects from post op. Maybe i have blinkered vision but there seems to be a lot of posters that have had MF that have had some pretty severe side effects. Luckily, there are others who have come through it fine.
laz
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I'm not from the NYC area, but Drs. Golfinos and Roland have a wonderful reputation among forum members. Those doctors are in the NYC area. Debbi, who lives in NJ, used them for her surgery and raves about them.
Regards,
Brian
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Dawn,
I'm pretty sure Wayne (wcrimi) had middle fossa with Drs. Post and Smouha at Mount Sinai in New York. I know he retained his hearing but I'm not sure to what extent. I'm pretty sure I remember him saying Dr. Post was also able to save his vestibular nerve -- he might have done a graft. You should PM him, I'm sure he'd be happy to let you know.
Wendy
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Thank you,
Larry sorry to hear of your results and wish you luck with the next course of treatment
Wendy - Thank you I will PM him to find out. I am going to make appt for Dr. Post and maybe I will for Dr. Golfino, I see his name on here a lot and was thinking of him too....How have you been since your BAHA surgery? Hope you are well.
Stay safe to everyone in the NY/NJ area tomorrow with the snow and ice
Dawn