ANA Discussion Forum
General Category => Inquiries => Topic started by: Shrnwldr on January 29, 2007, 10:36:45 pm
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HI everyone
I had no idea. I had a doctor tell me about 10-12 years ago that I had vertigo and that I had a problem with my inner ear. Gradually I've had equilibrium problems that have gradually gotten worse. I fall often. My family were getting annoyed with my inability to hear. So off to the doctor I went. To make a long story short I had a series of tests ending with an MRI. Bingo! There it was. I have an AN about 2 cm x 1 cm. My team of doctors will be Dr. Jerald V Robinson, Mr. William Hitselberger, and Mr. Michael Stefan. My surgery will be at St. Vincent Hospital and I am scheduling it for June. The procedure will be the translabyrinth..... and my niece has already spoken to Dr. Friedman as she works with him here in Orange County. I am in very very good hands!
Honestly I was stunned to hear the news, then I got onto the internet to read more about this and geesh I became completely frighten. I didn't want nor will I accept the quality of my life deteriorating. I feel very confident with the doctors. I just was not aware of all the post-operative treatments / issues. Thanks to you all I am a bit more informed and have some great ideas for overcoming some issues.
Will update you more as the surgery gets closer.
Thank you again.
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Welcome to the forum! I certainly understand how frightened you are, but please know that we are here to help you in any way that we can. You are absolutely right, you are in the best of hands and we have many members who also had surgery at St.Vincent's.
From diagnosis to surgery, I had 7 days and did not have any info on AN's other than what my doctors told me and looking back that was glossed over. I wish I had more knowledge going into it, that way I would have been better prepared during my recovery. I know reading all the post op issues is overwhelming, but as you said, good to be informed and now you have great ideas to help overcome the issues. You sound very confident, strong and determined, all the things needed for a good and speedy recovery. I will be 9 years post op in July and doing well :)
Cheryl
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HI and welcome! Nice to have another new memeber to this family! you certainly sound like you have the right attitude with this. That will get you a long way in coping with it. Keep a clear mind and try to stay relaxed. It is a scary part, the diagnosis and initial phase of finding information. But, the more information you get, the more confident you'll be.
You're in a good place here, we're all here to help each other.
Ciao, Lorenzo
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Hi and welcome to our special club that no one wants to join! This is a great place to find information, inspiration, comfort and you can also vent your fears and frustrations. We've all been there, done that to different degrees.
You haven't asked, and you seem already set on your method of treatment, but I'm going to tell you that unless your AN is in a precarious location (like very close to your brain stem), you do have options available to you besides surgery. My AN is a bit bigger than yours as it is closer to 2x2x2 and I had radiosurgery. I am only mentioning this since you seem frightened by surgical complications that could arise. We respect each other's method of treatment, so I'm certainly not trying to change your mind, but I'm wondering if you were given the opportunity to explore a different route. Just a thought!
Whatever you decide, I wish you the best in your treatment and recovery. It's not the end of the world to get an AN, but it changes our world somehow or another. It's okay to be angry, frightened, sad and befuddled. I return to angry now and then!
Kindest regards,
Sue in Vancouver USA
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Hi Shrnwldr and a hundred thousand welcomes to you!!
Sorry about the AN but its good to have you on.
I had the translab approach three years ago this comming May. I am doing very well. My only complaint is the single sided deafness but life goes on.
I was not a radiation candidate because my AN was starting to compress the brainstem. I was lucky, no facial issues etc...you owe it to yourself to get a radiation consult unless you just want it out.
Good luck and see you around, Kathy
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Hello and thank you all for your comments,
My doctor and I did discuss the radiation therapy. It really isn't an option. The tumor has grown close to the brain stem (although not yet pressing against it). Given my age and all (I am 57) he suggested the Trans approach. Dr. Freidman concurred.
I would like to not have to worry about this thing starting to grow agai.
I know I am frighten of surgery, but I really think it is because I have never had major surgery before and as with most the unknown sometimes is more frightening than reality.
Once surgery is complete I know that I will be walking walking walking. There is also a martial arts studio close by that has classes in Tai Chi and I will be attending them. Tai Chi is great for balance.
I have many incentives to recovery -- My sisters and I are planning a road trip to Washington to visit relatives the first week of July. I won't be driving but I really would like to go. Also my nephew is getting married July 21st and I want to celebrate this most happiest of occasions with him and his lovely bride. And then there is my daughters 21st birthday to celebrate in September!
So you see I have much to look forward to.
I wanted to ask.... Is there really soreness in the neck?
Again thank you all for your positive and encouraging thoughts.
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My other question is i am wondering how much hair do they shave? Can anyone tell me? I have long hair and have absolutely no intention of cutting it off. I just wondering about suggestions though in putting up.... obviously I will not be able to wash it for awhile.
Thank you Sharon
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I wanted to ask.... Is there really soreness in the neck?
I had translab back in Sept. My neck was sore for a few days after, just from being held still in one position for so long. Not a big deal, though.
You're in great hands at House.
Katie
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My other question is i am wondering how much hair do they shave? Can anyone tell me? I have long hair and have absolutely no intention of cutting it off. I just wondering about suggestions though in putting up.... obviously I will not be able to wash it for awhile.
Thank you Sharon
There was another thread about this same topic not too long ago. Try reading http://anausa.org/forum/index.php?topic=2372 (http://anausa.org/forum/index.php?topic=2372). There's even some pictures posted, mine included.
Basically, there's no need to cut off your hair. They shave a bit behind the ear, but that's it. Long hair will cover it nicely and no one will even know. The hardest part will be washing it the first few times after the pressure dressing comes off. After a week or so of not being washed, it takes a few attempts to get all the ooze, dirt, and accumulated dry skin out of your hair again. For me, it took 3 washings every bath for about 5 days for my hair to feel normal again.
Katie
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My AN was close to brain stem and I had trans-lab at St. Vincents 2 1/2 yrs ago at age 61. Back at work in 2 1/2 weeks. symptom free w/ no complications except single sided deafness. Ask about BAHA for single sided deafness next time you talk to the House Drs.
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Hi Shrnwldr and welcome. I have to concur that you are in fab hands out at House Ear Inst/St. Vincent's as they are a leader in AN surgery in the States. You have a fab team and I know many on this site that have shared many of the dr's you have selected. As you can see, some have chimed in with their updates and comments on your team. Have faith in your team.
I think TaiChi is a wonderful way to help maintain balance, as well as keeping inner peace as you deal with some of the anxiety that comes along with the AN diagnosis (I happen to be section 2 in TaiChi and absolutely love it... very calming/cleansing for me). Sounds like you have wonderful plans laid ahead and do hope I get a post card from your travels! :)
As you know... so many individuals react differently to different treatments. Having faith in your team and choice of treatment is the utmost key. Reading and sharing of experiences and knowledge is also a key factor. As you can see, we are all happy to share with you our thoughts/inputs/experiences/watered down drinks and jokes. As I'm sure you have read here, many are doing fabulous... some have on-going issues, many just plug along and "be". No one ever told us this diagnosis was easy (and they'd be lying if they did), but we move along to the best of our abilities, we live, we function, we "are".
Know that we are here for you and cheering you on. You are certainly not alone and we have padded shoulders and will loan out our good ears if you need one. Hang in there... we're here for you.
Phyl
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Seriously this has been the greatest site. I have spent the past two days just absorbing everyones experiences and advice. After getting my diagnosis over the phone and immediately hitting the internet I plunged straight into depressed panic. I talked to Dr. Robinson and he explained everything with knowledge and patience. He even called me after not hearing from me for two weeks to see if I might have any other questions. He calmed a great many of my fears. I am awaiting aprproval from my insurance to go see Dr. Hitselberger. Every doctor I have spoken to has told me how awesome he is as well as Dr. Michael Stefan.
This site though has given me even more hope and etermination that the quality of my life, while an uphill battle in the beginning, will resume. Thank you one and all. LOL Yes I will be posting pictures of my trip. I cant' wait. My sisters and I have not traveled together since little girls and this will be one big adventure! I have taken Tai Chi before in Fullerton and loved it so I was most happy to find a stduio here in Orange to accommodate me!
Honestly I am scheduling surgery for June so that I have enough time on the books at work or I would not wait. I will definitely keep you posted as time goes by. thank you again. :)
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My wife had translab surgery with Friedman and Schwartz at HEC on 1/8. You could not be in a better place. Hits came by to see her and is a great guy. Good luck!
Fred
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I remember how scared I was when I first found out but reading all of these letters and learning what to expect helped releave the tension
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Hi Schnwylder & Sonya and welcome.
Sonya glad you found us and sorry you're joining our exclusive club. Please know we are here for everyone!
Sch you're in very good hands with House and Tai Chai will def. help. I was so frustrated when I first started doing it at therapy. I found I frustrated easy with things that were hard that before surgery wouldn't have been. Sounds like your trip will be a fun one! Love the postive attitude it will def. take you far! All my best to you!
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Yes Sonya since finding this site I have been blessed and far more positive.
Battyprincess -- My Otologist(spelling?) is NOT associated with the House, but my team of doctors, i.e., Dr. Hitselberger and Dr. Stefan are. Dr. Robinson has done this type of surgery with Dr. Hitselerger for about 20 years or more. My niece works for Chapman Hospital in the Operating Room and knows Dr. Friedman. Dr. Friedman has not only given me a second opinion, but has put in a good word with Dr. Hitselberger regarding me. I have every confidence with my team of doctors that all will be well and in my best interest.
I was wondering since the MRI I have been having these weird sensations on my upper left eye across the bridge of my nose area. It is like being numb is the best I can describe it? Do you all think I should bring this to the attention of my doctor? I know that oftentimes the right side of the brain affects the left side and vice versa.
FYI my insurance approved my visit to Dr. Hitselber -- so March 19th I see him
Thank you again one and all for all the words of encouragement and kindness ~ Shaorn
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From all that I have read you are in the very best of hands. Your determination to move on with your life will definitely make for a smoother recovery.
Being new here I know how wonderful it is to read all of the posts here...you couldn't ask for better support.
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Yipppeeee My insuance gave its blessings to my seeing Dr. Hitselberger. So March 19th I will bring my body and my films to Hitselber's office and meet the man. I am looking forward to this meeting. I have heard so many favorable things about him.
I am grateful for everyday since finding this site.. it is a true blessing. ~ Sharon
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Shrnwldr:
Hi! Sorry you have an AN - but glad you found us.
You seem to be in good medical hands and its obvious that you are educating yourself, which I commend.
Acoustic Neuroma tumors are somewhat complicated but the two main things to remember are that they are both benign (non-cancerous) and operable.
My signature tells my story, as it were, Almost 8 months post-surgery and I'm fine. My balance isn't quite 100% but it's more than serviceable. I no longer sway, 'lurch' or ever come close to falling when I walk. I no longer need to clutch the handrail when I walk up or down stairs. I never experienced any facial paralysis, pre or post-op. I do have an occasional 'dry eye' condition (on the 'AN side') but it's relatively minor and does not even require drops most of the time. A slight 'numb' sensation in a few spots, including the side of my tongue - and that's about all. Oh, I'm deaf on my left side. I have been for about 5 years, so this is no longer a problem for me. Otherwise, I'm good. :) I expect to be even better in another year.
I was driving two weeks after my surgery. I only had to give up my normal routine for about 2 weeks. Of course, no one is going have exactly the same experience, as you know. Some AN surgery patients do better and some do not. There are a myriad of factors involved of course, but its axiomatic that the skill of the surgical team is paramount to having a good outcome, minus any severe complications.
My point is to reassure you that while a diagnosis of a brain tumor is scary, you are very, very likely to not only survive this medical challenge but do so with aplomb.
I wish you well.
Jim
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Hi Jim,
Not just operable, as you know. Many that are small and don't require micro-surgery may have other options as well, including radio-surgery. Can't forget us! :)
Phyl
Shrnwldr:
Hi! Sorry you have an AN - but glad you found us.
You seem to be in good medical hands and its obvious that you are educating yourself, which I commend.
Acoustic Neuroma tumors are somewhat complicated but the two main things to remember are that they are both benign (non-cancerous) and operable.
My signature tells my story, as it were, Almost 8 months post-surgery and I'm fine. My balance isn't quite 100% but it's more than serviceable. I no longer sway, 'lurch' or ever come close to falling when I walk. I no longer need to clutch the handrail when I walk up or down stairs. I never experienced any facial paralysis, pre or post-op. I do have an occasional 'dry eye' condition (on the 'AN side') but it's relatively minor and does not even require drops most of the time. A slight 'numb' sensation in a few spots, including the side of my tongue - and that's about all. Oh, I'm deaf on my left side. I have been for about 5 years, so this is no longer a problem for me. Otherwise, I'm good. :) I expect to be even better in another year.
I was driving two weeks after my surgery. I only had to give up my normal routine for about 2 weeks. Of course, no one is going have exactly the same experience, as you know. Some AN surgery patients do better and some do not. There are a myriad of factors involved of course, but its axiomatic that the skill of the surgical team is paramount to having a good outcome, minus any severe complications.
My point is to reassure you that while a diagnosis of a brain tumor is scary, you are very, very likely to not only survive this medical challenge but do so with aplomb.
I wish you well.
Jim
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Hi Sharon,
I can not say enough good things about Dr. Hitselberger. He is totally awesome! He is one of the nicest doctors I have ever met. He has been doing these surgeries for years and as everyone knows, numbers do count when it comes to AN surgeries.
When I had my consultation with him, I asked him how many people have died from AN surgery that he has performed, he said not a one and he didn't want me to ruin his record! I had a good laugh!
I am 1 1/2 years post surgery and am doing great. I have sent Dr. Hitselberger notes and letters of my progress and he has always responded back. He is very considerate. If I had to do it all over again, he would be the man. I wish you the best. If you have any questions, please send me a personal email. Ann
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Was just curious if anyone here has had their AN treated through Kaiser here in SoCal. Getting from diagnosis to the neurosurgeon only took two weeks so I'm thankful for that. I'll be treated in San Diego, at the Kaiser facility there. My neurotologist is a Dr. Cueva and the neurosurgeon is a Dr. Mastrodimos.
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I have another question. My tumor is on the right side and yet my balance problems seem to affect my left side. When I fall I fall on my left side. Is this right side affecting left side? Even when I walk I have a tendency to verve to my left.... does that make sense?
Sharon
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Was just curious if anyone here has had their AN treated through Kaiser here in SoCal. Getting from diagnosis to the neurosurgeon only took two weeks so I'm thankful for that. I'll be treated in San Diego, at the Kaiser facility there. My neurotologist is a Dr. Cueva and the neurosurgeon is a Dr. Mastrodimos.
Hi,
My brother had AN surgery performed by doctors Cueva and Mastrodimas in San Diego. He really liked them and overall, had a good experience. Let me know if I can answer any other questions.
Jeff
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Actually, I'm off the hook. The tumor, which walked like a (AN) duck, and quacked like a (AN) duck, turned out to be a goose! Actually a meningioma (sp?) that affects feeling, not movement in the face. Surgery would leave me feeling exactly like I feel now, but without a tumor. The course of action is annual MRIs and I have to look for symptoms developing, but no surgery. I'm grateful for that. Good luck to everyone in their battles with AN!
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Actually, I'm off the hook. The tumor, which walked like a (AN) duck, and quacked like a (AN) duck, turned out to be a goose! Actually a meningioma (sp?) that affects feeling, not movement in the face. Surgery would leave me feeling exactly like I feel now, but without a tumor. The course of action is annual MRIs and I have to look for symptoms developing, but no surgery. I'm grateful for that. Good luck to everyone in their battles with AN!
Glad to hear you found your answer, alknows. Even though meningiomas are nothing to sneeze at, my hope is that your docs and the MRI's will be kind to you.
Best wishes to you.
Phyl
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When I was diagnosed 3 years ago, I also immediately went to the Internet and scared myself and my husband to death! I wish I had waited until I had had my first apt with my AN doctor. Without a 'guide' surfing was frightening. I wish I had found this website sooner to be able to vet information. I encouraged my doctor to caution newly diagnosed patients to be careful about too zealous information gathering on the web. I too had numerous visits on various options and can't stress enough the importance of asking many many questions. We had my step-daughter come to all of our apts to take notes. It was invaluable to us as we could just listen and not worry about capturing information. It also really brought us all closer together as a family. Good luck and please don't be afraid to ask questions over again to make sure you understand. Hang in there! ;)
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I have another question. My tumor is on the right side and yet my balance problems seem to affect my left side. When I fall I fall on my left side. Is this right side affecting left side? Even when I walk I have a tendency to verve to my left.... does that make sense?
Sharon
If I remember correctly, the right side of the brain controls the left side of the body as the left side of the brain controls the right side of the body. As for your ? re: neck soreness. You can help your neck ahead of time by routinely stretching the neck muscles before your proceedure. This will make the muscles supple increasing your chances of little or no neck pain.