ANA Discussion Forum
General Category => AN Issues => Topic started by: Kathleen5306 on July 10, 2008, 11:27:40 am
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I have been quiet on the forum for the last few days because I have been researching, interviewing doctors and trying to come to peace with the fact that my CyberKnife from 2002 failed and I have to undergo surgery for my growing AN. I made the decision this morning and scheduled my surgery with Dr. Friedman and Dr. Schwartz at the House Ear Institute for July 30. I am very overwhelmed right now and pretty scared. I would love to hear any good stories, words of encouragement and positive outcomes to give me more strength and to make me feel positive about my decision. As I said in an earlier post, this forum has been a Godsend and in my darkest moments has helped me very much.
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Hi Kathleen-
First of all, I hope that you are feeling some relief at having reached a decision. And, I am happy for you that your date is coming up sooner than later, as the waiting can be quite nerve-wracking.
Do you know what kind of surgery you are having?
So, some might say that it is too soon for me to claim a good outcome - but I do feel that my outcome has been and will continue to be good. Yes, I am deaf in one ear, but I knew going in that SSD was a certainty for me. And, yes, I ended up with facial palsy, but I am assured that it will resolve in time and I am finding that my fear was far worse than the reality. Happily, my balance problems have been very minor and I have not had dizziness or headaches. I was out of the hospital in 3 days and started back to light workk on Day 10 (from my home office, which made it far easier). I was driving on a limited basis at two weeks.
Yes, my life is a little different now, but I have learned some interesting and valuable things about myself during this experience. I can't say I'm happy to have grown a tumor in my head, but I can say that it "ain't gonna kill me!" I consider myself to be a positive outcome on many levels.
It is so normal to be scared, and to feel overwhelmed. There's no hiding from the fact that it is major surgery - but you are being treated at one of the preeminent facilities in the world. What is truly amazing is how quickly your body will heal. When I think about how yucky I felt 10 weeks ago in the hospital, and how much I can do today - well, it is amazing! I won't tell you not to be scared - but do try to take calming time for yourself.
Come here often - you've got lots of support from all us us.
Debbi
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Hi Kathleen,
I wish that I could share some first hand experience with you, but since I'm in the same position as you right now (with the exception of the previous CK), all I can do is pass on some of the positive experiences that others have shared with me.
I also have a surgery date scheduled with the Friedman/Schwartz team in early August. (It was originally scheduled for July, but really felt I needed more time to be psychologically prepared.) I have contacted a few people on the forum who had the same surgeons and received some wonderful replies. I would be happy to PM you and pass on their good stories and encouraging words. (I have to add that even though some of these people had not been active on the forum lately, they all responded within a day. It was at that point that I really began to appreciate the positive power of this forum!)
Have you decided on what approach they'll be using? The comments I have collected are mostly from those who had retrosigmoid, but there are also many great stories (that you've possibly already found in searches) from those who had a translab with the same team. Hopefully your post will bring out some more. Also, here is a story from Crystal who had a translab at House (Luxford/Schwartz) after a failed CK:
http://anausa.org/forum/index.php?topic=2737.0 (http://anausa.org/forum/index.php?topic=2737.0)
You are right, this forum is a Godsend (and is the only reason I'm at least half sane right now), and I'm very thankful to all those who have been down this road and have shared their stories, as well as those who remain on board to share their compassion and support!
Wishing you all the best,
Nancy
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Already my nerves start to slow to only Mach 1 as I read some of your responses. Thank you. I am trying to get a handle on what to expect post operatively. With my previous brain surgery in 1996, there were some things that are "normal" in the ICU following brain surgery that are not "normal" in every day. I wish I would have known that ahead of time because I started to get myself worked up over things that are to be expected. Can those of you who have had translab tell me what you were feeling so that I don't think my reactions aren't okay?
Kathleen
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Kathleen:
I've entered your surgery date on the AN calendar, as you requested.
I'm sorry you're scared but that's a fairly normal reaction. It will lessen, especially as you learn of other AN patient's affirmative surgical outcomes and realize that your doctors are going to give you the best opportunity for a positive surgical result.
I had a huge AN (4.5 cm) that my neurosurgeon 'debulked' down to 2.5 cm. I had almost no post-op complications and was home within 5 days and back to normal activities within three weeks. Then, three months later, the neurosurgeon teamed with a radiation oncologist to 'map' then zap the remaining AN via FSR (26 sessions). Again, no complications. Two years later, I'm fine and my AN experience is becoming smaller and smaller in my life's rear-view mirror, as it were.
You'll very likely do just fine under the care of the very experienced AN doctors at House and soon, you'll be encouraging others who are scared about their upcoming surgery. I look forward to seeing those posts, Kathleen.
Meanwhile, we're here for you whenever you need us and come July 30th, many people will be thinking of you, sending positive vibes your way and praying for you. You're going to be O.K.
Jim
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Hi Kathleen,
I'm glad to hear the responses you've gotten so far have helped you feel a bit calmer. I'm 16 days post op for removal of a rrecurrent, right-sided AN (from 20 years ago--so I really identify with your frustration at being a member of the "rotten rare statistics club" due to your failed CK!), and am doing very well.
I'm guessing the very short span of time between your decision to go ahead with surgery and the actual scheduled date accounts for some of the panic you initially felt; for me, the wait between the decision (in late March) to proceed with surgery and the scheduled date was initially supposed to be a bit over a month, but ended up being around 7 weeks because one of my surgeons had an emergency case come up and bump me.
I agree with Debbi that the short wait till July 30th may prove to be a real blessing for you. Though ultimately I made my peace with having lots of time to organize, line up support, etc, I definitely would have liked to have this surgery behind me sooner!
Hope you'll continue to draw strength and support from these forums. The ultimate reassurance, I hope,, will come from knowing that you're in really good hands with the House Institute...
Best wishes, and do take lots of decadently, unabashedly, totally indulgent "you" time in the coming couple of weeks!
Carrie
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Hi Kathleen,
I've been following along and as an AN CK patient, I have the utmost interest in your situation (as well as everyone else's here...). I'm glad that the jitters today are easing... and hoping that they don't strike up again in the next couple of weeks. They may, as to be expected, but know that all of us are cheering you on... you are getting terrific stories of success.... you are getting love and support from those that "truly do know what it is to walk a mile in your shoes"... but most of all.... that here, we are truly family (whether you care to have us or not! :D ) but we are here for each other. I'll be cheering you on BIG time on the 30th, you have a terrific team doing the work and know, that thoughts and wishes and prayers for speedy recovery from me to you will be bountiful.
Hang in there... and if the jitters kick up again, oh heck... go for the chocolate... any chocolate... I'll join you on that one!
Phyl
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Hi again, Kathleen-
I had translab, although here in NYC with the Roland/Golfinos team. I can share with you that waking up after the surgery was actually not as bad as I had feared. NYU has a very busy Recovery Room, so there was a fair amount of noise and motion, but they did a good job keeping me off to the side. I had pain, but they were quick to manage it. They also brought me juice and water right away (no ice chips, not sure why). I woke up with facial palsy, so the straw was a little challenging, but I managed to drink an entire cup of apple juice over the course of an hour or so. They let my husband and family in right away to see me, and I think that was a big help psychologiically.
In general, the first 24 hours were the worst, although they weren't as bad as I had feared. They gave me quite a bit of morphine the first day, which caused some interesting hallucinations, but did a fine job of managing pain.
To tell the truth, I think the biggest discomfort was the darned bonnet! It was so tight on my head that it seemed to add to the overall pain. I remember inserting my finger under the edge of it repeatedly trying to loosen it a bit.
Sleeping in the hospital was tough - partly the noise and partly all the meds. I was lucky, though, that I had no dizziness at all so was able to watch a little tv. Couldn't read, though, because I couldn't get my glasses on and my 52-year old eyes can't read without them! If I had to do this again (and I hope I don't) I would take a pair of reading glasses with one arm removed (on the AN side, of course) so that I could read.
BTW, I actually woke up briefly in the surgical suite when they asked me to cough to remove my breeathing tube. I then remember feeling an overwhelming need to throw up (which they cheerfully accommodated) and then right back to sleep.
BTW, if you want to chat on the phone, I am available. Just PM me with your number and we'll find a time that works for both of us. You can also see some pictures on my blog (below) from post surgery if you go back to the first of May posts.
Breath deeply and try to relax.
Debbi, 10 weeks post translab
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Kathleen,
I had translab surgery 10 days ago. My recovery couldn't have been easier. The worse part for me was the decision making. Once I decided to have the surgery I felt a real piece with my decision. This forum has helped me so much by knowing what to expect. For me, not knowing makes me go crazy. My mind is always finding things to worry about. By following others stories I realized that even the problems that some people have aren't as bad if your prepared for them.
My surgery was a little longer than the doctors had expected, but everything went great. I didn't have any pain after waking up. I also got lucky and didn't have any dizziness that most people have. After the first 24 hours my facial nerve decided to poop out on me. Using eyedrops helps with the dryness, but then everything is pretty blurry. It's pretty hard to walk when your vision is so blurry. I find myself holding my husbands hand when we walk now for added support. My vision is really bad to start with. I knew going into this I wouldn't be able to wear my contacts for a while so I took an old pair of glasses and removed one of the arms so I could wear them over my bandage in the hospital the first few days. The problem with that is they don't really stay on your face at the right point. I had to hold them in place to see anything. I found it was easier just to "be blind" most of the time. It also was very tiring to try to focus. I think my eye was more relaxed without the glasses on.
Once I got home I had some issues with food. Everything tasted like metal. I didn't want to eat because everything tasted so strange. I found myself getting sick from the steriods and my other meds. My husband got me some instant breakfast drinks that kind of helped me get over the hump of eating. I had to force myself to eat something so the meds woudn't make me sick. Once I was able to eat I started feeling better.
I'm definetly glad this is behind me. I know the fear of surgery was way worse than the reality is. For me, having my wisdom teeth pulled was worse than having AN surgery.
Rosalie
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Rosalie
I am glad you got to hold your husband's hand alot! That is something I can look forward to! Just like you, I am much better off knowing what to expect and being able to hear so many stories of success. Thanks for sharing your story and I wish you a continued recovery with your facial nerve. Take care of yourself and let your body keep healing. All the best,
Kathleen
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Kathleen,
Hope you are feeling a little better about your upcoming surgery. At least you don't have long to wait. You will be a "postie" before you know it. I had the translab procedure done almost three years ago now. I ended up being in NICU for three days and five more days in a regular room. I remember the nurses were really good at helping me manage the pain. That helped a lot. I ended up with facial paralysis that has been slowly getting better over time. I have adapted well. Now I can even smile. Even though I have some facial problems I was lucky enough to have no balance problems. I think I even ended up with more energy after awhile. I've gotten into running and biking, which I do on a daily basis now. My life post AN is even more active than it was before the surgery.
We will all be thinking of you when you have your surgery.
Jean
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Hi all,
I have been recently been diagnosed with a 3cm AN and have been visiting doctors here in Cleveland. Luckily we have a lot of them! I am 48, a musician (a singer) and I am terrified of oh so many things regarding this surgery. It is wonderful to know there are people out there who have come through it. I will write again once surgery is scheduled and again after to report on my recovery. My husband is a wreck and my 20 year old son hasn't hugged me this much since he was 2. I guess it's a silver lining.
Marci
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Hi Marci,
I am sorry you received this unwelcome diagnosis. You luckily have found a place where others truly understand. It is a shock when given the news and we will all be there for you. I guess the good news in all of it, is that it is not cancer. I know, still daunting. Hang in there. I am cheering you on!
Take care,
Mary
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Marci,
Welcome to our little place. We all "get it" and know what you are going through right now, during and after surgery. You are hard pressed to have anything go wrong that someone hasn't lived through yet. In fact, I just had surgery a couple of months ago to remove a 3cm AN. We're all cheering you on and will answer any questions you have. The surgery will be the easy part of it all for you! Tell us more about the surgical approach and all! Good luck and welcome!
Brian
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Thanks. It is extremely comforting to have a community, even a virtual one, where there is a shared experience. I will know more after my second opinion on Monday, and perhaps I will even have a surgery date. Thank you for the warm welcome.
Marci
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Hi,
I had trans-lab surgery at House Ear Clinic/St. Vincent Medical Center exactly 6 months and 2 days ago. Dr. House and Dr. Schwartz were my surgeons. Everyone with whom I dealt at House, St. Vincent's, and the Seton Guest Center were outstanding -- very professional and compassionate. I live in New Jersey and am delighted that I made the trip to LA. I was quite fortunate in that I experienced absolutely no nausea, dizziness, facial, or vision problems before or after my surgery; my only symptom prior to AN diagnosis was gradually diminished hearing. I don't know how unusual this is, but that's the way it was with me. My main post-operative issue was extreme fatigue. It improved gradually over the course of time; at five months post-surgery I was feeling almost back to normal. I can (almost) honestly say that now, 6 months out, I seldom think of my surgery except when I'm on this forum. I should also mention that I received my BAHA implant at the time of surgery. I started wearing the processor about a month ago (I have the Intenso model) and am happy with it. Since my brain had already adjusted quite well to my virtual SSD prior to surgery, it's taking a while -- probably a bit longer than those whose hearing loss was quite sudden -- for it to learn yet another version of hearing!!! Best wishes as you approach your surgery. Know that you are in very capable hands and will receive the absolute best of care.
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Welcome, Marci and JerseyGirl2. I hope you'll both consider starting your own threads, so as many folks as possible will be aware you've come aboard!
JerseyGirl2--It sounds like you did fabulously! So glad to hear it, and glad to hear that your adjustment to the BAHA is coming along. It must be wonderful to be starting to feel like your surgery was a long time ago, even though, of course, it wasn't very long ago at all! That's a really wonderful sign... I had surgery myself on 6/24, and boy will I be delighted when my energy level bounces back to its normal quasi-manic level...
Marci--I'm so glad you've found us and are finding these forums a source of strength and support. Glad to hear, too, that your husband and son are being so caring! Please do keep us posted, and do come back to ask any questions that may come up for you.
Carrie
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Ok Carrie, I started my own thread. Thank you for the support. You've just recently had surgery. How are you?
Marci