ANA Discussion Forum
General Category => AN Issues => Topic started by: Will on November 08, 2008, 03:21:47 pm
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Hi all,
Hope you all are doing well. I just found this forum last night and joined a few minutes ago. Just wanted to introduce myself and say thanks for allowing me join. Hope this is the right thread. It is really nice to know one is not alone.
I’ve read quite a bit on a lot of forums over the last month and a lot of people have been real troopers and should be commended for going through their ordeals with very positive attitudes. What better forum than the one that says it all…. “Acoustic Neuroma Association�.
A quick synopsis of my very uncomplicated story. Ten to twelve years ago had to start positioning myself on my wife’s left during our evening walks to hear her. Up until two months ago it’s always been just a bad left ear, both of my parents have hearing aids in both ears, I thought just normal aging. MRI Aug. 4, 2008, dx – left AN 1.5 x 1.5 x 1.6 cm with cystic central necrosis. My ENT referred me to a Neurotologist that he said he would trust with “his� own brain. Bright young guy had done >300 AN’s. He spent one hour explaining everything in great detail and answering every question. My wife and I concluded in 5 minutes that surgery was the only way we should go. I scheduled surgery within one week, tinnitus, pressure, and general anxiety were getting worse. Second pre-op visit he spent just as much time again.
Oct. 20th translab approach, I had lost 90% of hearing in the left anyway over those 12 yrs, but still have 90% of hearing in the right. Surgery was 12 hours long. The usual fierce headaches afterward well managed with narcotics, no nausea, (very well managed with scop patches, and anti-nauseates). Tinnitus remains at same level as pre-op, headaches nearly gone now, managed well with Motrin. Just started Vestibular rehab. which I highly recommend, and doing well 3 weeks post-op. Looking forward to BAHA.
Thanks for letting me share my story. Looking forward to gaining insight through your stories. The lady from Bulgaria is a real trooper, I wish her all the best, and will pray for each and every one of you.
Take care,
Will Scoggins
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Will
Welcome to the forum a place of support and a wealth of information from people's experiential learning. Like you I was diagnosed in Aug 08 but because my symptoms are minimal I have chosen to wait and see; MRI due in Feb 09 (read signature). I do believe I have had the AN for years because I lost my hearing significantly 4 years ago but in reflection I believe I have had a hearing problem for a lot longer. If I had been diagnosed with an AN 4 years ago (My ENT advised to have an MRI then but I got too busy) now I would be celebrating being in W&W for at least four years. I don't want surgery until I have to. It sounds like you are doing really well in your recovery keep up the good work. What is cystic central necrosis?
Take Care
Kimbo :)
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Hi Will, and welcome.
I'm pleased to learn that you've gained something from the website and the forums and have decided to join and post.
Your AN story is relatively straightforward and, fortunately, with few post-operative complications. I trust your recovery will continue unabated. Meanwhile, thanks for your contribution and please plan to visit here often. I'm sure you'll contribute as much as you learn.
Jim
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Hi Will,
Glad you have found us. I'm also glad to hear you are doing well. The hard part is over, now time will heal us. On second thought, maybe that is the hard part. Patience is sometimes difficult but having found this website and knowing I'm not alone in this battle has made a huge difference for me. It has especially been valuable to me post op to learn what to expect. Stay tuned in here. I wish you health and an easy recovery.
Susan
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Hi Will,
What a good positive attitude you have. Sounds like you are having some good early success. I had gamma knife Oct. 21st. Few bumps in the road, but I can't complain much. Best wishes as you recover and welcome to the board. Good support and info here.
Nancy
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Thanks for sharing with us, Will. It sounds like you are in the position to hand out advice to some of us newcomers. Welcome aboard! Glad to see that you are doing as well as can be expected. I have heard a lot of good things about vestibular rehab from the forum.
Maggie
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Will -
you definitely are not alone ;)
I'm glad you found the forum, too and hope you join us and contribute often.
IMO you will love the BAHA - I have one myself and think it is marvelous!
Jan
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Wow, thank you all for responding so quickly. Six responses in as many hours.
Kimbo, a tumor is either cystic or not, meaning kind of a harder outer shell with a soft central portion. My Neurotologist explained that when these tumors start growing fast they begin to outgrow their blood supply in which case the central portion doesn’t get enough oxygen and dies from the inside out and becomes necrotic on the inside. Unfortunately it doesn’t die enough.
After my first posting I thought it would be more beneficial to tell people who have a fear of the surgery that with today’s modern medicine, surgical experience, surgeon experience, microscopic instrumentation and all we have at our hands today a patient with a simple AN such as mine can reasonably expect a great outcome with few complications. The number one factor I found was that one must find an outstanding Neurotologist who has performed at least >100 AN excisions. Further, the surgeon must be able to explain everything to you, especially what to expect nearly every step of the way so you know what to expect and when. A surgeon with little experience, or a God like complex, can’t tell you those sorts of things. Find yourself a good surgeon! Granted they can’t nail every specific outcome down like degrees of facial paralysis or increase/decrease in tinnitus, but they should get things fairly close so you have no surprises. No surprises makes the post-op period palatable. I know everyone's experience wasn't as good as mine, however, with a good surgeon who discusses all the options and possibilites there is hope.
I am so glad I did it and I am grateful that it was benign and I can hear at least out of one ear.
Will
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Welcome aboard, Will! Thanks for contributing to this forum. Your insights help us all.
Best wishes,
Tumbleweed
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Will, where did you go for surgery and who were your doctors?
Boomer
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Hi Will and welcome,
Not only are you not alone, but you are in very good company! Glad you are doing so well.
All best,
Marci
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Thanks kindly again to all of you, Kimbo, Jim, Susan, Nancy, Maggie, Jan, Tumbleweed, Boomer, and Marci.
Will
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Will,
Your wonderful outcome with surgical approach will be very helpful for those contemplating surgery for treatment. Thanks for posting and welcome to the club!
Where did you go for surgery and who is your doctor? I'm sure many out there will want to know this information seeing you had such a great outcome.
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Hi Will,
Welcome to this forum! You are definitely not alone sound like you are doing amazingly well for just three weeks post-op! I am scheduled for BAHA surgery in January too and can hardly wait!
Wishing you all the best,
Wendy
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Several of you have asked which surgeon performed this:
Joseph Hegarty M.D.
Colorado Springs Ear Associates
Board certified in Neurotology
719/667-1327
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Hi Will,
Just thought I would say "hi" again, and I hope all is still going well. I am from CO also.....Denver area. I think I remember my doctor mentioning Dr. Hegarty as being one of his second opinion docs. Sounds like you are in good hands. Best Wishes.
Nancy ;D
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And a friendly hello to you as well Nancy. Did you get some snow today? We got only a little rain, but Monument got about an inch.
Thank you for writing back. Are you happy with your doctor? You have (from your signature) quite a large tumor. Are you stable and just watching it or preparing for surgery?
Yes, Dr. Hegarty is from the moment you meet him one of those people who is an enigma. I know second opinions are very neccessary sometimes, but after you leave him you don't need a second opinion. I'm a computer guy now, but I've been in the medical field for 35 years and I have met few physicians like him. He leaves no stone unturned, he explains things to you at whichever level you are comfortable, and on and on. I went into surgery knowing what to expect and that's exactly what happened. This event has been a life changing event for me, a very positive experience and a chance to improve my overall health and have a better attitude for the rest of my life. For all of us who have or had an AN, it could have been a lot worse. I lost a friend last year to a brain tumor that is supposedly a cousin to the AN.
Anyway, I won't get too philosophic and mushy, but I hope you (and everyone here) does well. If there is anything I can do let me know.
Regards, Will
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Will, My first message to you just disappeared...sorry about that. I was reading your posting and saw many similarities in our cases. My surgery was one week prior to yours. I don't think that I had your anti-nausea patches, but I only had four little "episodes" of nausea. They didn't amount to much as I was pretty empty. I'm walking real well at home, but outdoors still reminds me that the balance rules have changed. I started back on my exercise bike, and that feels great! We are getting a Wii Fit like many others on the forum. I'm going to try to get my doctor to validate it for a tax deduction. I saw a major difference in my energy between weeks 3 and 4. I also notice that some days I am more dizzy than others. The ANA website has some great little booklets in their store about the big issues of AN. I ordered several and am intrigued with the one on Balance. It provides the entire background information on how our balance works and the three key components of vestibular, visual, and proprioception - the sensors in places like the ankles, knees, hips, etc. Then it explains how our brains have changed from AN surgery and what has to happen for the balance to recover. It's pretty interesting. The one on hearing loss is good as well. That website is www.ANAUSA.org.
It sounds like you are doing fabulous. We apparently both had very talented surgeons. I think that makes a huge difference in the outcome along with that very positive attitude that you displayed. Best wishes to you in this shared journey.
SUE
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Hi Will,
We haven't gotten any snow or rain, yet....Seems like you guys down there are always ahead of us with the snow. Might want to check my signature again. My AN is small, and maybe you were thinking cm instead of mm :). I had gamma knife at Swedish Medical Center by Dr. Robert Feehs on Oct. 21, 2008. So, I am a new postie, as they say. So far I have only hit a few bumps in the road. The reason I know of Dr. Hegarty is because I asked Dr. Feehs who he recommends for second opinions. Dr. Hegarty was high on the list. It is great that we have such good doctors in this area. I was with another doctor before I changed over to Dr. Feehs. The way you describe your doctor pretty much fits for how I would describe Dr. Feehs. I love it when a doctor talks without all of the big medical terms......like, imagine your AN is an orange (I can relate to those kinds of examples).
So sorry to hear about your friend. How sad. Just when we think we have it bad..........My thoughts are with you, and thanks for sharing your story. Send the snow up this way. I always love the first snow of the year.
Nancy :)
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Hi Will-
I just wanted to say a belated hello and "welcome!" I have been off the forum for a few days and missed everyone. Glad you found this group - this forum has been of so much help and support to me and I can't imagine going through the "AN Adventure" without all these folks. As I commented on my blog the other day, I have made so many new friends here - hopefully you'll find the same!
It's been a beautiful week here in New Jersey by the way - sunny and temps in the 50's. And, no, for all who are wondering - Beautiful Day in New Jersey is not an oxymoron! ;D
Debbi
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Sue, Nancy, and Debbi,
Great to hear from you all. You’re all so positive which is definitely something we need to keep in the front of our recoveries.
Nancy, you’re right, I can’t believe I misread mm for cm. Big difference, and wonderfully in your favor and also much more of a candidate for GK. Hope you get some snow soon.
Sue, yours and my situations and outcomes uncannily do appear very similar and I’m so glad that you feel like your physician was a perfect match for your needs. So glad you are doing well.
I will say that for as positive as I have been in my postings since surgery, yesterday I found out what people mean by the “brick wall� 2-3 weeks post-op. It is never a dull moment healing up from these things. When going for walks in the bright sunshine, nice weather, and you’re feeling good it’s like “this is nothing, I feel great�. But after vestibular rehab, or just some days when you have no energy and you have the all day headache, what a set back, the brick wall some are talking about. It’s so difficult making that balance between pushing yourself to get better or just laying back and taking the healing break that you’re supposed to. Up one day and down the next rollercoaster.
One fantastic event that took place this week is that my taste buds came back almost overnight. Before surgery I lived to eat, but after surgery it was a real chore because nothing tasted like it should, not necessarily metallic, but just not good. Within 48 hours all that changed and now everything tastes like you expect. Some of you, like me, may have also experienced throat dryness and have had to choke down some of your food like bread and chicken. That is still going on, but I try to eat food that is very moist like soup or Wheaties. I was wondering over that past couple of weeks how long it would take for taste to return, if it ever would. Wonder what the statistics are on that.
I wish you all the very best,
Will
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Hey Will-
Glad your taste came back! Believe it or not, that was one of the things I worried about a lot before surgery - like you, I love to eat and I just couldn't imagine life without taste!
Don't worry about hitting the walls sometimes. I'm slightly more than six months post op and I still hit walls sometimes. Each week gets better, though. Give yourself time and be patient with yourself.
Debbi
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Will,
Glad you are still on your way with the good attitude even though you have hit a few bumps. I had some good news today. I thought I was having some hearing issues, and when I had a hearing test today, the hearing in my AN ear is the same as before GK. Maybe I had some allergy/sinus stuff going on that threw me off. Keep on posting. You inspire us, and this board is a great support.
Nancy
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Hi Will, thanks for sharing your story and helping out all those here looking for more information.
Wishing you a speedy recovery with more good days ahead.
Trish in Toronto Canada
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great to have you will glad things are well, by the way whats a BAHA
bill
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Hi Will,
We got our snow today. Thanks for sending it up this way. However, it didn't cover the ground much, and it melted by the afternoon. Still, winter is here and fun time in the Rockies is on its way. Hope you are doing well.
Nancy ;D
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Hey Will and welcome.
Sounds like you are doing really well. We feel good, we push, feel bad, stop pushing, and so on until you're pretty close to good as new. Keep up the good work.
Best wishes,
Marci