What would you do differently?

[SDTom]

Hello,
This partially to help me but mostly to help those who have not had surgery yet. If could turn back the clock I would probably send my MRI to House. I don't know if it would have made any difference but I think they are better Drs. than I had in Sioux Falls.  It would have cost me more money but I am not sure you can put a price on health. My second surgery was at Mayo and I cannot say enough nice things about them.
Tom

[CHD63]

Tom .....

As I know you know, we cannot turn back the clock and redo things.  That being said, we have said many times here on the Forum that because of the rarity of ANs, it is so important to seek out treating doctors with vast experience in dealing with ANs.  You followed the advice given to you, I am sure.  At the point of diagnosis, we are so overcome with the emotional trauma of it all, most of us blindly follow the advice of a doctor we trust.  Please do not blame yourself for the decisions you made!

Hindsight is often revealing to future decision-making, but, alas, we cannot undo our history.

I was in a state of shock upon hearing my original diagnosis so I numbly followed by ENTs advice.  He told me right up front that no one in our city (55,000+ people) would touch it.  He gave me several places to consult.  He mentioned House as the best place in the country for surgical treatment (in his opinion), but in the same breath said "That is awfully far away and expensive to get to."  End of my first story is that I went to Duke University for my first surgery, which is a highly respected medical center.  Following surgery, it was described to me as having been removed in toto.  However, three years later it had regrown to nearly it's original size.  By this time I had ample time to do my homework, so the tumor was removed a second time at House.

As for what I would do differently, that is a tough call because I am the sort of person who says "OK, now what can I do?"  When I let myself, I do wonder what would have happened had I gone to House the first time .....

I am sending you a PM about a Sioux Falls connection.

Clarice

[Tod]

The only thing I would do differently would be to not give up on playing the banjo after surgery the way I did. I was so frustrated with having lost the ability speak, let alone sing, and the weakness and loss of coordination on the left side, I gave up. And I lost a lot of progress that I had made as well as tremendous amount of momentum. Now I hardly play.

I have absolutely no questions that I had the right doctor and right facility. I suppose it is possible that HEI might have gotten all of it, and in less time, but I it is also possible they might have stopped after 18 hours left more of it behind. I don't know and I don't care. Worrying about it now leads to insanity.

-Tod

[Crazycat]

Tod,

Do you think you could pick up the instrument and do some remedial practicing? You should give it a shot for therapy's sake.
You may be surprised how quick it could come back.

[Tod]

CrazyCat,

I have been occasionally. It is difficult to rebuild the momentum, especially with so little free time these days. I can still play somewhat, but some things I have to restart from the beginning.

It's okay though if this is my worst complaint.

-Tod

[james e]

I would not change anything I did.

 I saw the doctors that my internist sent me to. I listened to them explain ANs, and what the procedures are, but when I started asking questions, they started giving evasive answers, and I had no confidence in them.

I formulated my questions based on what I learned on this forum. I also sent my MRI to House...my wife's best friend is a surgical nurse there. I talked to a doctor at House on the phone, but they were not in my insurance network. Was I willing to pay the difference? No one could tell me what the costs would be. Not willing to roll the dice with my retirement funds, I looked elsewhere.

I found a doctor on this forum. I talked to his patients on this forum. He answered all of my questions. He told me the good and the bad. Based on the experience of his patients on this forum and my interview with him, I chose him as my doctor. It was an excellent out come.

For the new people here, you are in charge of your health decisions. Formulate some questions here. The doctor you are talking to is APPLYING FOR A JOB, and you are hiring him and his team to operate on your head. There are lots of people here that will share their experience with you...questions to ask, doctor info, hospital info, outcomes, rehabs, and lots more.

My experience and advice is to read this forum front to back. PM people here for their personal views. A young college girl just asked me about the doctor I used and she said she had talked to several other people here that used the same doctor. She hired him.

The old Boy Scouts "be prepared" is an excellent way to look at this new adventure. Know what to ask. Know who to ask. Make a Ben Franklin list and evaluate it. That was my experience.

James