Author Topic: Hello everyone...  (Read 2925 times)

diverjeff

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Hello everyone...
« on: February 07, 2008, 09:08:51 am »
Hello everyone:
   Wife was diagnosed yesterday with AN. The AN is sized at 1.5 cm x .5 cm.   Long story short, the path to finding the AN started in May 07 when my wife had sudden hearing loss in one ear. She went to a audiologist and was told the loss was psycological.  Not satisfied with that determination she went to another audiologist which referred her to a specialist. The specialist said she had about 90% hearing loss but couldn't see any reason why. Dr. ordered MRI and now we are researching treatment options.
   While having the tumor is unfortunate, we are happy that the tumor is small.  Additionally, it is very comforting finding this website and reading about others with the same afffliction.
   If okay, I would like to ask a few questions. I apologize for the hypotheticals but we're trying to cover all areas before making decisions.

1. Is there a website that might show information regarding a physcians credentials?

2. As bad as I hate ask, where would someone check to see a doctors surgical results both good and bad?

3. How does one verify the number of procedures a physician has performed?

4. What is a "reasonable and customary" cost of say a translab procedure?

5. After surgery (translab) how long is post operative recovery until one can return to normal activities? ie: work, driving, gardening?

Again, I know these questions are highly hypothetical and subjective. I guess I am just looking for opinions.

Thank you to everyone. We have found comfort in reading others who have posted there experiences and accomplishments.

With respect,

DJ
A father gave his son a stick and asked him to break it.  The son broke the stick with ease.  Next the father bound some sticks together and asked his son to break them. No matter how he tried the son could not break the sticks.  The father said, "That my son, is the strength of a family."

Mary 117

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Re: Hello everyone...
« Reply #1 on: February 07, 2008, 12:41:54 pm »
DJ,
Welcome to an outstanding resource. You asked some really good questions. There is a lot of information on this site about the questions you are asking. Look around but keep asking if you need help. I do think it is important to know how many procdures the Doctor does in a year and they should have no problems telling you. It's your head they are going to be messing with (literally).

I lost my hearing in 2 episodes before I was diagnosised with a 2cm AN. Both times my hearing returned to good levels so I opted for the Middle Fossa to try and save the hearing. There is more risk to the facial nerve with a larger AN and middle fossa approach but I did fine. I went to House Ear Institute, which you will see many references to. They are a great source of information and will give you one point of view. Search for many views. I returned to work less then 4 weeks after surgery and have done great with few post-surgery problems. If you want to talk, leave me a message.

Good Luck and All the Best
Mary
2cm AN Middle Fossa, HEI, Dr. Brackmann, 05/24/05
2cm x 1.5cm AN, Middle Fossa, Dr. Brackmann  05/24/05
Mild hearing loss, mild facial weakness, no balance issues

"well behaved women seldom make history"

Esperanza

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Re: Hello everyone...
« Reply #2 on: February 07, 2008, 01:28:49 pm »
Hello,

DJ sorry to see your wife has joined us...  you will undoubtedly find a lot of the information you are looking for on here - this forum is an excellent resource for information and a fantastic support at a difficult time.

Mary - I was wondering when you say you had to 'bouts' of hearing loss and then it returned  - what sort of time scale did it take to return each time and did you have medication?

Thanks
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

leapyrtwins

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Re: Hello everyone...
« Reply #3 on: February 07, 2008, 01:59:58 pm »
Diverjeff -

sorry to hear about your wife, but you'll both be relieved to know that ANs aren't as scary as they sound.

There is a physician link on this website, which may be useful to you.  It doesn't go into a lot of details, but it's a starting point.
Also, if you tell us where you are located, forum members will be more than happy to recommend doctors and tell you of their experience with them, if you are interested.

If you haven't already, you should contact the ANA and ask them to send you some informational brochures.  They will explain a lot about ANs, the usual treatment options available, the possible side-effects of each treatment, etc. 

I had retrosigmoid surgery, as opposed to translab, and was told that the recovery period would be approximately 6 weeks.  I returned to work about 2 1/2 weeks post op.  That said, everyone is different and recovers at a different rate.  Six weeks is a good benchmark, but some recover slower, some recover faster.

The cost of the surgery would depend on a lot of things - length of hospital stay, duration of operation, numbers of doctors involved, who your insurance carrier is, etc.  My surgery was 7 1/2 hours, I had a neurotologist, a neurosurgeon, and an anesthesiologist, I was in the hospital for 5 days and my insurance company was billed approximately $100,000.  That wasn't what they ended up paying in the end since the docs and hospital were in my network.

Jan 

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ppearl214

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Re: Hello everyone...
« Reply #4 on: February 07, 2008, 02:50:43 pm »
Hello Jeff... and welcome to you and your wife.  As you can see, everyone here is more than happy to help.... and provide wonderful support.  You have already been receiving terrific suggestions... and we all know the "information overload" feeling as you all begin this research process.  I'm only going to wish you all a "welcome" right now... always available if need be... Please hang in there... and please tell your wife that we are here to help...

...and please take time for yourself. You are just as important during the AN journey. We're looking out for you as well.

Again, welcome
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jim Scott

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Re: Hello everyone...
« Reply #5 on: February 07, 2008, 05:20:18 pm »
Hi, Jeff:

I'm sorry you and your wife have a reason to visit this site but I hope you find it useful. 

I'll make a stab at answering your questions.


1. Is there a website that might show information regarding a physicians credentials?

There are a variety of ways to do this including simply asking the doctors office (look at his/her diplomas and any board certifications when you visit).  You can also check with the local medical society (if the doctor is a member), a local hospital (if the doctor is on staff), or an HMO to which the doctor belongs.  Just typing the doctor's name into an internet search engine might bring up useful information.

2. As bad as I hate ask, where would someone check to see a doctors surgical results both good and bad?

That could be accomplished by asking the doctor if he has any former/current patients you may speak with, if the patients are open to do so (they may not be).  Even if this isn't feasible, you will be referred to a surgeon and your primary care physician should have some knowledge about the surgeon he sends you too.  Ask.  Don't accept vague answers...this is very delicate surgery and the skill and experience of the surgeon and his (or her) team is vital to increasing the chances of a good outcome (few or no complications).   

3. How does one verify the number of procedures a physician has performed?

A surgeon should be trustworthy enough to tell you the truth and if he or she is evasive (I encountered this), this doctor is probably not highly experienced in this procedure.  Run, don't walk to the nearest exit. 

4. What is a "reasonable and customary" cost of say a translab procedure?

Ask your insurance company. They set these numbers, which can be arguable, in some cases.  Costs vary, as you might expect, but my total bill (tests, surgeon, anesthesia, nerve monitoring specialist, operating room and ICU as well as regular room charges (5 day stay) came to just about $100,000.  The highly experienced and well-respected neurosurgeon who performed the bulk of the operation (retrosigmoid) charged $23,000.  His assistant (another neurosurgeon) charged my insurance company $5,000. for her services.  Your costs may vary, based on your location, your doctors fee schedule for your wife's specific surgery (trans lab) and hospital prices.  Medical insurance usually covers most of it but I ended up owing a few thousand dollars in initial co-pay charges. Be prepared.  Fortunately, most hospitals and doctors will accept a monthly payment plan and I availed myself of that option in a few instances.

5. After surgery (translab) how long is post operative recovery until one can return to normal activities? ie: work, driving, gardening?

As already mentioned, that will be different for each patient.  My surgeon was very conservative and told me my recovery would be measured in 'months, not weeks'.  Yet I was driving again within two weeks of getting out of surgery.  Even with the best recovery, your wife will be better six months after her surgery than six weeks after.  However, your doctor, if he is diligent, will schedule frequent follow-up visits for his post-op patient and he'll use her responses to his questions and a few simple tests to determine when she can return to normal activities.  Six weeks is a realistic expectation, assuming the surgery goes smoothly.

Again, I know these questions are highly hypothetical and subjective. I guess I am just looking for opinions.


Well, I've offered the best responses I could come up with on the fly.  I urge you and your wife to use the internet to learn as much as you can about acoustic neuroma tumors.  With such a small AN, radiation, which is non-invasive (no surgery) may be a viable option for your wife and worth her consideration.  We're all here to help in whatever way we can.  I hope I have.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

diverjeff

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Re: Hello everyone...and Thank You...
« Reply #6 on: February 07, 2008, 09:45:00 pm »
A very special Thank You to all.  I cannot begin to explain how reassuring your comments.   The AN website has been a fount of information for both us and our families. A common thread seems to be the House Institute. I've noticed the institute offers an email opinion so I'll send the MR films this weekend. Also,  the physcian we have been referred to (Dr. d***ens in Little Rock, Ar.)  is on the AN website.

ppearl214 said, "and we all know the "information overload" feeling as you all begin this research process." No truer words have ever been spoken.  But, thanks to you all and the AN website, we're nibbling away at this elephant.  Will update information as available.

Safety & blue skies,

DJ
A father gave his son a stick and asked him to break it.  The son broke the stick with ease.  Next the father bound some sticks together and asked his son to break them. No matter how he tried the son could not break the sticks.  The father said, "That my son, is the strength of a family."

Kaybo

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Re: Hello everyone...
« Reply #7 on: February 09, 2008, 10:05:27 pm »
Hi!
Just wanted to let you know that you are more than welcome to contact me as a person who has had a translab. and am living a very full and almost completely normal life 12 years later.  I'm glad that I didn't have to go thru all of these decisions when I was diagnosed!
Let me know if I can help in any way...
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!