ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: oHIo on March 06, 2008, 09:48:44 pm
-
Hi everyone. As many of you know, I was diagnosed in June of 07 with a right sided AN and my presenting symptom was severe vertigo. I still have 100% hearing discrimination but my 6 month MRI showed tumor growth and the vertigo continues intermittently. The constant dizziness I could stand, but the vertigo is not tolerable.
After becoming very knowledgeable about ANs due to my research and the great information I got from everyone here, I have committed to surgery (a translab approach) on March 20th. No one (including House) felt they could save my hearing, or get all of the tumor with a hearing sparing approach. Bummer. :(
Thanks to everyone for all of the great support. You have helped me work through the process to come to a decision I believe will provide me with the best outcome for my situation. I am anxious to become a postie.
-
oHIo -
I know how hard it is to make a treatment decision, but it sounds like you have done your homework and you are doing what is best for you.
The next 2 weeks will fly by; you'll be a postie before you know it.
You are in my thoughts and prayers. Best wishes for a successful surgery,
Jan
-
Hi oHIo, I looked back at some earlier posts. It sounds like the vertigo is a real problem; you should soon be over that, which will be a great relief. Congratulations on making the call. I am just a bystander when it comes to surgery, but I have always liked the sound of the trans-lab best, even with the hearing loss involved.
Maybe later you can do like Jan, and get a BAHA. As I understand it, you would then also need an extra toothbrush, a bottle of Dawn dish washing liquid, and some cake string. :D (See the BAHA posts for the story).
Have a great surgery and a nice gentle recovery.
Steve
-
Maybe later you can do like Jan, and get a BAHA. As I understand it, you would then also need an extra toothbrush, a bottle of Dawn dish washing liquid, and some cake string. :D (See the BAHA posts for the story).
Steve
I apologize for getting off topic here, but had to say "Very amusing, Steve". ;D
Jan
-
oHIo~
You will be in my thoughts & prayers over the next few weeks. I am praying for a peaceful couple of weeks as you anticipate you surgery and quick healing after! Where will you have it??
K
-
oHIo - good luck to you. We'll all be thinking about you and anxiously awaiting to hear how it goes.
And Steve - you crack me up! By the way, the dishwashing liquid comes in some very nice scents! You can make your whole head smell like green apples if you want - and no streaks. ;D
Lori
-
oHIo,
Congratulations on making your decision.
Just last week I decided on the translab approach scheduled for May.
Three of the 4 Drs I consulted gave me a 10% chance for saving my hearing, which is still serviceable (68-75%). Bummer indeed!!
I too look forward to joining the postie club.
I'm stocking up on toothbrushes and dish soap for my BAHA.
Many prayers, good luck and wishes are being sent your way.
Syl
-
oHIo: I'll be putting out good thoughts for you. Take a deep breath & exhale, this is quite a journey.
Wishing you all the best, Nancy
-
oHIo,
I am going to be in Eastgate May 9,10,11. I sure hope we can get together at Frische's. Keep in touch. My prayers will be with you on surgery day.
Lois
-
Hey Ohio -I too am having AN surgery a day after you on March 21th - At U of C with Doc Pensak & Theo. I may have had a couple of conversations with you off-line. If not then there are now 3 of us Ohion's scheduled around the same time. Where are you having the surgery?
-
Ha-Ha ..I just a string of e-mails and you are the person off-line..I hope to see you there!
-
Thank you everyone for the well wishes. Nerves are getting the best of me today. I had my preop testing and an anesthesia consult done (no big deal) but we are experiencing a blizzard and driving in the blowing snow with waves of dizziness really exhausted me. Spending over 4 hours round trip on the road for what should have been an hour trip did not help my anxiety.
To help with nerves I have gone on a cleaning frenzy. My friends asked me if I was "nesting" (like a pregnant mom before she gives birth).
Ohio Also...at UC. We've talked offline and will meet in the hospital, I'm sure. I'll be the one with the wobbly gait, bandage on my head and possibly a crooked smile. ;D
Steve...The dishwashing liquid shouldn't be hard to come by since Proctor and Gamble headquarters is in our city ;D I just went to the dentist, so I'll hang on to the new toothbrush they gave me. Cake string...Hmm...I need to read the story, but if I can't find cake string, will a slice of cake do? ;)
Boppie...would absolutely love to see you when you are in. Give me a call.
I appreciate everyone's prayers and good thoughts. I will have my family give Boppie a call so she can send an update.
-
Anthor dumb Q from this newbie... but what is a "BAHA"?
???
-
No question is ever dumb b/c you wouldn't ask if you didn't want to know!! Does that sound enough like the teacher that I used to be? Seriously though, it is true! I would tell you, but others can explain better as I don't even have that!!! ;D
K
-
Hi Calimama1
K's right - no such thing as a dumb question around here! My primary care doc didn't even know what one was.
A BAHA is a Bone Anchored Hearing Aid. It is a small hearing aid that attaches to a screw that's been implanted in your head to send sound waves from your deaf side through the bone and into your good ear, which is kinda the simplified explanation. If you look under the topic of Hearing Issues on the home page, you'll see a lot mentioned about BAHA's. It seems a lot of us have been getting them the past few months. Too bad we didn't look into the group discount....
K - sorry - I think I forgot to raise my hand before I answered that.... :-[
Lori
-
BAHA = Bone Attached Hearing Aide
I just had the surgery 3 days ago, but still don't really get the scientific explanation of how it works (hell, I'm an accountant - I know NOTHING about medicine ;D )
Anyway, I'll explain it this way - pardon my rudimentary description, please - this is the way another BAHA patient described his surgery to me before I had mine and although I was wide awake the entire time, I didn't ask the doc to do a play by play of the action LOL. I plan to get more details from the doc when I go for my post op appt. next week. I'm thinking if I had the surgery, the least I can do is find out exactly how it was done.
In a nutshell, the doc basically lifts up a layer of your scalp, inserts a titanium plate, and attaches a "fixture" to your skull (aka "bone"). I say attaches, but the doc pretty much drills a hole in your skull and inserts the fixture. The fixture lies flush with your skin - doesn't stick out - and is about the size of the tip of your little finger. After the fixture has calcified to the bone, it is strong enough to hold an "abutment" which you attach the processor or "device" to. The abutment is sometimes referred to as a screw. The processor or device is a tiny hearing aide (approximately the size of the your thumb if you measure from the tip to the knuckle).
In contrast to a conventional hearing aide, or a Cros, or a TransEar the device doesn't go inside your hear; it attaches directly to your skull. The bone actually helps the sound travel somehow - I'm not at all sure how, I just know that it does.
I think I'm in over my head here - someone who understands medical stuff needs to help me out. Lori67? Sam Rush?
Jan
-
I too look forward to joining the postie club.
I'm stocking up on toothbrushes and dish soap for my BAHA.
Syl
Syl -
are you planning on the BAHA surgery at the same time you do the translab? I know there are some on this forum that had the BAHA surgery at the same time as their AN surgery and from reading their posts it sounds like it's sometimes easier to get insurance companies to pick up the tab for the BAHA surgery when the two are combined.
In my case I never thought to ask about it because #1) I had no idea what a BAHA was, and #2) I chose retrosigmoid in the hopes that my hearing could be saved.
Jan
-
Jan,
Getting a BAHA at the same time as the AN removal was the plan. I need more details from my Dr., but it looks like it may not happen. I will speak with her Monday.
Syl
-
Syl -
I like the plan - in a way I wish I would have had that option. Having the 2nd surgery was nowhere near as tramuatic as the first, but it would have been nice if we had a game plan that said "if during surgery it becomes obvious that hearing is gone, immediate insert BAHA fixture".
Sorry to hear your plan might not happen :( Good luck with your chat on Monday.
Let us know how it goes,
Jan
-
Jan, I think you explained it quite well for an accountant! ;)
Lori
-
Why, thank you, Lori ;D
I saw you posted your explanation about 2 minutes before I posted mine. Yours is much more scientific, so hopefully between the two, Calimama will get a good idea of what a BAHA is.
Jan
-
Looks like I will not be getting my BAHA during my AN resection. Many of those who have both surgeries at the same time end up not liking the BAHA. The dr. explained to me that there is a workup that is done before the BAHA surgery. What it comes down to is that how can I test the BAHA if my hearing is still intact? Though the BAHA surgery is reversible, I don't think I'd want my head cracked open a 3rd time for something like this. I'm fine with having to wait until I heal from my AN surgery.
Syl
-
Syl -
the good news is that BAHA surgery after AN surgery isn't a big deal (at least IMO). It in NO way compares to going through AN surgery (thankfully) :) For my AN surgery I was "out" for 7 1/2 hours, for my BAHA surgery I had local anesthesia and it took about 90 minutes from start to finish. I literally could have hopped off the table and walked out of the OR if they would have let me.
Also, just to clarify things, for a BAHA implant, your head isn't opened up again. I thought so too, and was hesitant to have one, but several members of this forum who had one before me told me otherwise. Now, it's my turn to pass along the good news ;D
Once you have the AN surgery and your head is healed, try the demo and go from there. I absolutely loved the demo and decided on the surgery; you may or may not decide it's right for you.
Jan
-
Jan
So tell me does what I said make sense? That you can't really appreciate whether a BAHA is right for you while your hearing is still intact?
Syl
-
Best of luck to my fellow Ohio-ANs ;) I see Dr. Theo on the 24th for a consult.
I want to get off subject for just a sec. Would either of you be willing to share who else in Ohio you have seen for your AN issues? I am having to pay for my consult out of my own pocket because my insurance company is giving me a bit of a runaround. I am from the Toledo area and I work for a health care facility and have somewhat privatized insurance, so seeing any kind of specialist for this is considered "out of network". I have seen Dr. Lee at Cleveland Clinic. My insurance company is now recommending I see a Dr. Babu at the Michigan Ear Institute, but they are balking at covering my visist to Dr. Theo.....It's so frustrating to have AN anyway and then to get the insurance run around too......AGH! Anyhoo....I'd love to hear any kind of feedback on who else you may have gotten opinions from here in Ohio. Thanks much!
Good luck to you both in the coming weeks.
Melissa
-
Jan
So tell me does what I said make sense? That you can't really appreciate whether a BAHA is right for you while your hearing is still intact?
Syl
Good question, Syl. I don't know.
I was totally impressed with the demo, but I was SSD when I tried it.
I'm going to have my bandage & cap removed tomorrow morning and will ask the doc your question.
I'll get back to you,
Jan
-
Daydreamer...I have also heard great things about Dr. Bradley Welling at Ohio State. I did not do a consult with anyone else in Ohio. My insurance is an HMO, so I did get 2nd opinions via phone consult. My comfort level with my surgeons here influenced my decision to stay in Cincinnati.
-
Jan
So tell me does what I said make sense? That you can't really appreciate whether a BAHA is right for you while your hearing is still intact?
Syl
Syl -
asked my doc about this today. He said that the BAHA is only for those who are completely unilaterally deaf. For those who have some hearing remaining, the option is conventional hearing aides. So, the BAHA wouldn't be right for someone with hearing still intact.
Jan
-
DAYDREAMER: I talked with Dr Welling @ Ohio Universtiy and I would recommend him. I also built a friendship with a wonderful woman who had him do her surgery and she can't say enough good about him. I am having Theo/ Pensak do mine on the 21st. I have heard Dr Lee is a good surgeon but I have not heard much about his experience with AN's. There is another Dr in Chagrin Falls that my ENT recommended, Dr Megerian.He looks good on paper but have not visited him.And best of luck to you too!
Best of luck to my fellow Ohio-ANs ;) I see Dr. Theo on the 24th for a consult.
I want to get off subject for just a sec. Would either of you be willing to share who else in Ohio you have seen for your AN issues? I am having to pay for my consult out of my own pocket because my insurance company is giving me a bit of a runaround. I am from the Toledo area and I work for a health care facility and have somewhat privatized insurance, so seeing any kind of specialist for this is considered "out of network". I have seen Dr. Lee at Cleveland Clinic. My insurance company is now recommending I see a Dr. Babu at the Michigan Ear Institute, but they are balking at covering my visist to Dr. Theo.....It's so frustrating to have AN anyway and then to get the insurance run around too......AGH! Anyhoo....I'd love to hear any kind of feedback on who else you may have gotten opinions from here in Ohio. Thanks much!
Good luck to you both in the coming weeks.
Melissa
[/quote]
-
Thanks to everyrone. I'm at the final countdown of less than one week. Looking forward to being a postie. Good luck to my fellow Ohio ANers. I'll let everyone know how things go. Praying for a speedy recovery with no complications for everyone.
Ohio Also...I'll look for you in the hospital so we can race down the hall. ;D
-
Ohio Also...I'll look for you in the hospital so we can race down the hall. ;D
Oh, that should be quite a sight - two drunken sailors with matching haircuts zig-zagging down the hospital halls! I think it would more like bumper cars than a race!
Good luck to both of you!
Lori
-
Oh, that should be quite a sight - two drunken sailors with matching haircuts zig-zagging down the hospital halls!
Lori
Wonder if we can get someone to take some video of that ;D
Seriously, though, best of luck to you "pre-posties". Waiting for your big day can be very stressful. Relax, put yourself in the hands of the doctors, and go from there. I'll be thinking about you and hoping for the best.
Jan
-
You ladies are a hoot! I'm up for a video of us..How 'bout you Ohio? Maybe we could be the opening act at the next ANA Symposium!! We wouldn't even need to have go for a fitting as our costumes willl already match (and fit perfect, I'm sure)!
-
Ohio & Ohio also, best of luck!! Keep that positve attitude & you'll do great!! Can't wait to hear about when you're all done!!! We need to have an Ohio get together being I'm from there also!! We can play games like who can stand on 1 foot the longest with their eyes closed!!!
Try it now so after surgery you can work towards that goal!! LOL! Relax, this will all be behind you very soon!!
Nancy
-
I can supply the video cam but need to make sure I'm shot from my "good" side (instead of my backside...you know how hospital gowns can be ;D ) Who knows, we might win the grand prize for funniest hospital video.
Ohio Also...on which side is your AN? While we're wobbling down the hall we'll have to position ourselves so we can hear each other yell, "Your gown's open in the back" ;)
I've got a million things to do before surgery and am working 12 hour shifts the next two days. I'm trying to stay busy to keep my anxiety level down. I'll be glad when I am an official postie.
NW...what part of Ohio? Seems we've had a run of us who have nothing better to do than grow an AN.
-
Ohio, NW, Daydreamer & an NW's guardian angel (postie) - We are buidling quite a clientel in Ohio. We all need to meet in a central location, once this is over.Daydreamer, I hope you have found a doctor that you are comfortable with. NW & her guardian angel had Dr Welling @ Ohio State. Ohio & myself are having it done at Universtiy of Cincinnati this week w/two different team of doctors but I am sure we are both in good hands.Ohio,be careful not ot overdo it this week as you want to be healthy for your surgery. Maybe a little more prayer and a lot less work :) Will you be admitted Wed or Thur? Mine is 7:30 am Friday, & will be admitted just before. Yes, the gowns are stunning. Another postie I met said to have someone on hand ready to dress you in a pair of pj bottoms for the backside gown issue!
-
Hi Ohio-
Just wanted to add my best wishes and prayers for a successful surgery. And, in a new take of an old Irish saying - "May the wind always be at your back and all your roads be straight!"
Let us all know how it goes. We newbies need to learn from you soon to be posites!
From your neighboring (almost) state, New Jersey,
Debbi
-
Well, all this talk of hospital gowns - maybe we better keep the wind down? How about an even newer take - "May the wind be just a slight breeze so as not to blow open poorly fitting hospital garments or knock over wobbly AN patients and may all your roads be straight (and the walls covered in bubble wrap..)."
Good luck to the whole state of Ohio! You guys should get a group discount. ;D
Lori
-
Hi Ohio, I'm from Warren, Ohio. I cannot believe all the Ohio AN's popping up all over Ohio. What area are you from? I truly believe this summer we all need to meet.We'll have to figure out who sits on what end or near the wall!! Question for you, I see you work 12 hr days. What do you do? I also worked them, but I honestly don't think I can yet & I'm 5 months post op. Yay!! Actually 5 months today!! Did your Doctor tell you what or when you could work them again? Or if you should. I'm curious to know that.
Any way I want to wish you the best. You & OhioAlso are in my prayers. I'm sure you are ready to have this done as I was. The stress of waiting is the worse. There are so many hurdles to get over & you'll soon be on the other side of the main one. We are all here for you.Take care & God Bless. Looking forward to hearing from you.
Nancy
-
Nancy...
I'm in the burbs of Cincinnati. I'm a pediatric neuro nurse. I see the doc tomorrow to discuss (again) expectations after surgery, including work. His scheduler made some comment (kidding I hope) that I would have to be off work at least two weeks. I was told no lifting anything over 5 lbs. (a gallon of milk weighs 8 lbs.) for a month. We'll just have to see how it goes before I figure out my return to work schedule. Tomorrow is my last day of work before surgery.
An Ohio reunion sounds good. We could meet at Cedar Point or King's Island and take in some spinning rides. Oh wait, we've already done those without the rides! Virtual reality at its finest.
Ohio Also...I'm going in at 0545 the morning of surgery for a 0730 surgery. Winding down on the work and taking every spare moment to sneak in an extra prayer. I'll be saying one for you also.
-
Nancy...
I see the doc tomorrow to discuss (again) expectations after surgery, including work. His scheduler made some comment (kidding I hope) that I would have to be off work at least two weeks.
Nancy -
hate to burst your bubble, but most docs say that recovery time post op is typically 6 weeks and - although everyone is different - 2 weeks is pretty fast. I had minimal side-effects and only returned to my desk job part time after 2 1/2 weeks; it took me 4 weeks to return full time.
Your job sounds much more physically taxing than mine. Don't rush back to work; allow yourself time to heal.
Best of luck,
Jan
-
I'm game for an Ohio get together......I'm from the Toledo area... :D I never knew how many of us there were from Ohio.....great to hear from people who see some docs I'll be seeing.
Melissa
-
oHIo, sending wellness wishes and healing huggles going into tomorrow... hang tough... we're here to cheer you on! :)
Good vibes, good vibes.... :)
Phyl
-
Just a HEAH to all those who are graciously providing support to us Ohioans. Two more days for me and only one for 'Ohio'. Getting a little nervous and emotional with this coming..Like today for some reason it just came on. I guess I think I'm accepting this just fine when in actuality I am just stuffing it....So Me! Thank you all for your continued support & especially the sense of humor...It goes a long way! You're in my prayers Ohio!
p.s No high wind warnings in the forcast that I can see!!
-
oHIo
I know tomorrow is the Big Day. You are in my thoughts and prayers for a very successful surgery.
Sending Big Healing Hugs :-*
Ohio Also
You are also in my prayers. Healing Hugs to you also for the day after tomorrow :-*
Hang tough and let us hear from you both, we are all here for you!
Glenda
-
Good luck everyone :)
Looking foward to hearing from you when you're all posties.
Jan
-
((((HUGS)))) to both of you! Wishing for a successful outcome and please post when you can ..... again ... tons of ((((HUGS))))
-
Prayers for peace and healing to you both!
K
-
For those following this thread...Ohio is in a regular room today. She is fine. Good news that it is finally time to get some sleep, Ohio.
-
Good news! Thanks for keeping us informed, Boppie.
I hope the other Ohio-ans (or should that be "Ohio-AN's) do well also!
Lori
-
Thanks, Boppie.
Good one, Lori - "Ohio-AN's" - you amuse me ;D
Jan