ANA Discussion Forum
General Category => Inquiries => Topic started by: acousticlady on October 13, 2011, 08:17:05 pm
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I feel I should have the surgery but am so scared, I am not able to pick up the phone and schedule it. I've lost all hearing in my AN ear, so translab is the path for me. Any of you have a good translab experience?
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Many, many people have had good translab experiences. I think you will find there are more discussions on this board relating to issues because it is a place where AN patients and their family come to support and help one another. Tips and tricks are shared, and there will almost always be someone who can offer help/support/advice/virtual hugs to those in need. Even those who have had really good outcomes come here to support those who supported them as they made their way through their AN journey.
All the best to you as you make your way too.
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Acousticlady ~
Welcome. You should know upfront that your trepidation about undergoing the 'translab' AN surgery is perfectly normal. It would be weird if you were completely sanguine about this complicated, serious surgery. From your other posts, I can assure you that you're in very capable hands with Doctor McKenna. Although you'll see posts on these forums from folks dealing with post-op problems, please do not assume that these problems are just part of the surgery aftermath. Thousands have undergone the Translabyrinth (and other AN removal surgery approaches) with good outcomes. I'm one of them. I had 'retrosigmoid approach' ('debulking') AN surgery but came through it just fine with no complications. I am not alone. The odds of you having post-op problems are real but relatively small. Please do not allow your fears to control you and prevent you from going ahead with the necessary surgery. This website, these forums and a lot of good, concerned folks who have been where you are, now, are all ready to answer your questions and offer you their support.
Jim
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Acousticlady,
I had my surgery in May with the same questions and fear as your are experiencing. Today I feel better than I had in few years, sinus issues disappeared, blood pressure is back to normal and returned to work last week. I still have a foggy head and balance when too much activity is present around me but it is manageable. Overall I am very happy the results and that I did not wait much longer to have it done. What hospital would you be going to?
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Acousticlady,
I am 7-1/2 weeks removed from having Translab surgery with Dr. Friedman and Dr. Schwartz at House Clinic in California. I had an excellent outcome from having the Translab surgery. My tumor was 5x3.2x3.3 cm and I no facial nerve damage after my 9 hour surgery. I returned to work as an engineer 4 weeks to the day following my surgery. I have numbness on the AN side that hopefully will continue to fade. I started doing some light exercising again this week and am getting back to normal. Personally my stress level went down once I had a surgery date scheduled and I knew when I would have the tumor removed and be able to start recovering. I really want to encourage you to trust your doctors to be able to give you the care you need and know that many of us have positive outcomes from the translab procedure.
Rick
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I had translab surgery in Feb 2009 at House in LA with Dr. Brackmann and Dr. Schwartz. I am fine. SSD--you get used to it. Occasionally a little off balance when I'm really tired--thats it! I had a terrible headache when I woke up from surgery, it eased off daily and the pain meds worked. I left California 2 weeks after surgery and never needed another pain pill. You will be ok. It is important that you select the right surgeons. Just because you are having the translab approach, the skill of the surgeon is still the most important piece of it. Good luck to you and take care! Post as many questions as you can think of...there are alot of us on this site that have had that approach.
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I had a good translab experience. No post surgical issues, bounced back quickly and am living a normal life. :D Not that it was easy in the beginning, but I didn't have much pain, and no problems getting my legs back under me. My biggest hurdle was that my facial nerve was involved with the tumor so it had to be cut and grafted. The first 6 months of facial paralysis were tough, but I have since gotten back a lot of movement. I don't think about it that much anymore.
Vonda
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I didnt have the best Translab experience, with some complications after surgery, but I am nearly 12 weeks post surgery and doing really great now!!! All of my complications got better over a short period of time, and were handled by my doctors quickly and effectivly. As others have stated, this forum is great for support, but often there are a lot of "problems" discussed here, leaving the unknown very scary. I even had to take a break from the site because every post i read caused me to think iwas having problems, but that was not the case. The members here provided me with great support through my journey as im sure they will for you.
Its a very scary thing to face and everyone has different outcomes, good luck with your journey!!
Sarah
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I have to agree with Sarah that it can become frightening to read some of these posts and post op issues before surgery.. mine is scheduled next Thurs 27th,, and it is translab unless MRI tomorrow indicates otherwise,, and I get very nervous reading some of the posts on here,, I have to take a break some times.. but on the flip side,, I know from these posts that everyone's journey is different.. just because someone goes through something does not indicate everyone will.. you just have to do your "homework" and research and try to find a Dr that you are comfortable with .. not all of us can go to House clinic or one of the other premier centers,, but there are competent Drs out there ... find some good support (family and friends, or support group) to lean on and put your trust in the Lord (or what ever your belief system is....) and realize that if it must be addressed,, and not all have to,, then you must proceed.. I had to.. I wanted to deny it for a few years and symptoms only worsened,, so now I have to move on.. I am going into it believing I will be fine,, may take awhile,, but I am moving forward,, I wish you the best, ,we all know you are going through a very difficult time,, but you will be fine,, there are very few really terrible outcomes if you really look at the posts... prayers go up for you and all of us facing this surgery in the near future!! jane
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Jane,
For every single word that you wrote, noted below, I honestly, in all my years on this forum (6 yrs) couldn't agree with you more. VERY well said.... and remember all... for all those preparing for your AN treatment (regardless of treatment), there is this new "family"..... your AN family..... and many of us that are post-treatment fully understand what you are now feeling. Just this lovely reminder that we don't walk "behind" you, but... beside you.... and cheer you on. :)
Thoughts/prayers/good vibes to all for those with upcoming procedures... and know we are all here to help you through it as we truly do understand what it is to "walk in your shoes." :)
Phyl
I have to agree with Sarah that it can become frightening to read some of these posts and post op issues before surgery.. mine is scheduled next Thurs 27th,, and it is translab unless MRI tomorrow indicates otherwise,, and I get very nervous reading some of the posts on here,, I have to take a break some times.. but on the flip side,, I know from these posts that everyone's journey is different.. just because someone goes through something does not indicate everyone will.. you just have to do your "homework" and research and try to find a Dr that you are comfortable with .. not all of us can go to House clinic or one of the other premier centers,, but there are competent Drs out there ... find some good support (family and friends, or support group) to lean on and put your trust in the Lord (or what ever your belief system is....) and realize that if it must be addressed,, and not all have to,, then you must proceed.. I had to.. I wanted to deny it for a few years and symptoms only worsened,, so now I have to move on.. I am going into it believing I will be fine,, may take awhile,, but I am moving forward,, I wish you the best, ,we all know you are going through a very difficult time,, but you will be fine,, there are very few really terrible outcomes if you really look at the posts... prayers go up for you and all of us facing this surgery in the near future!! jane
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Plus for a newbie it is hard to realize that many are on here for a short time and do well. They are back to their normal lives after recovery but with some adjustments. Mainly the SSD. Our finding out about an AN is a very scary time and I remember this fall 10 yrs ago was horrible. That was my first tumor and if I had not become NF2 over time which is rare,then I would have been fine in time. Mainly the SSD. So I feel for all who find out about this and then have to decide what is best for them. Cheryl R
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thanks Phyl for your sweet words of encouragement.. I just stated what is in my heart at this "overwhelming" time in my life.. I do have a wonderful husband and friends and many prayers being said for me.. I know all on this forum are "family" too from the many posts I have sent and read... thanks for all your thoughts and advice over the last few years.. it has helped me.. I don't want to mention everyone by name that has given good advice because I would surely forget someone,, but you "seniors" know who you are.. thanks and will post in a few days after surgeon visit... take a BIG DEEP breath all of us facing treatment and realize we will be well again!!! :)
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Kind of late jumping in, but my translab could not have gone better. I tend to look on the bright side of things, and attitude was a key to my recovery. I'm not sure how to describe my experience, but if I knew before the surgery, what I know now, I would do it all over again just like it happened.
Most of the immediate post surgery posts usually sound pretty good...no pain, a little tired, anxious to go home. The recovery posts are varied...some are up and running around in a few days, some in few weeks, some take months. Age, general health, are all important, but attitude is most important. Be patient, and good things begin to happen. I know you will do well. Keep us posted.
James
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Another late-chimer-in-er...
I had translab too and did well. I did (and still do) have facial nerve issues, but since my AN was pretty stuck to that nerve it was sort of expected. Nothing that I can't deal with and it hasn't negatively affected my life. James is absolutely right - keeping a positive and hopeful attitude is so important. It also helps to have others that have been in your shoes and can really understand what you're feeling. That's where we come in! ;D
Lori
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I had translab in Sept 2006 with McKenna/Barker in Boston. About 6 weeks of recovery, but no lingering issues other than deafness on that side, which was a known outcome. No headaches, no balance issues, no facial weakness, no eye issues, nothing.
I think that a lot of the people who have relatively easy, successful surgeries find themselves spending less and less time on the forum as time goes on - after healing, it's just not a big part of my life any more. The people who are still here and active (not everyone, but a lot) are the ones who face lingering problems and are looking for help and support. As they well should. But that can give you a distorted perspective about how many people have post op complications.
Fact of the matter is that many of the people without complications (which is still the vast majority of AN patients) have moved on and just don't hang out here anymore.
Good luck!
Katie
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Did not respond before because a number of people already did, expressing their good experiences. I, as well, had an excellent experience with translab in May, 2011 with Drs. Friedman and Schwartz at HEI. Other than SSD (but now with the wonderful assist of an Oticon Medical Ponto Pro), I had no post-op issues.
Katie is absolutely right that this forum can be a scary place, when a new person starts reading about all of the problems people have had. This is the big reason I have continued to stay on this forum (along with several others) ..... to let newly diagnosed patients know that the vast majority of AN patients do very well.
The best thing anyone can do is to find the best physician/surgeon possible. This greatly lessens the chance for any post-treatment problems.
Clarice
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Echoing the same as many have already stated. It's scary. Everyone experiences a different healing journey. I'm one of the blessed ANers who has a miraculous success story from the HEI. We're out here and cheering you on! Stay positive. Lean on family, friends, ANers and your faith. Thoughts and prayers to you! ~ Kathy
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Overwhelming is exactly right. I was just like you, with almost total hearing loss in one ear. I was so afraid of treatment--any surgical approach and any of the radiation treatments just sounded almost like death sentences--I just decided I'd keep the tumors. Seemed logical at the time: my hearing was already gone in one ear, so what did I have to lose? Well, about two months after the hearing loss, the nerve damage started. Tingling on the right side of my face, numbness on the right half of my lip, etc.
So I finally made the call.
That wait wasn't the best thing for me, though. The tumor on my right side (I'm NF2, so I had a tumor on each side) was cystic and had gotten dangerously big. It could no longer be removed by the "easier" (according to me doc--not sure if that meant for him or for me) trans-lab approach, so I had to have the ret-sig surgery. This isn't meant to scare you, but I do want you to go ahead and make that call. Waiting will accomplish nothing good, and once the stress of making the decision is over, life really does get back to something pretty close to normal.
We're here for you, if we can help, but you really do need to call.
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The surgery is no cake walk but managable and results are you should be tumor free and that is a very good feeling. I would advise being in pretty good shape going in, I was overweight (still am) and I think that made it a lot harder. I am 5 months post op and still working on that 100% but I do have to stop myself and realize, I really did feel worse before surgery.