I'm so confused!!

[msmaggie]

Hello all,

I am so confused right now.  I went to see the dr. here in Houston, one that Brian went to and really liked, and everything he said contradicted what the drs. at House said.  He was firmly convinced it is an AN because it is mushroom shaped, and is equally sure I could not have a middle fossa because it is in the wrong place for that. House said it was perfect for an extended middle fossa  He did say that if I chose radiation, an option NOT offered by House, they use a Novallis for fractionated radiotherapy.  That appeals to me if decide to go that route.  He was a very nice man, very patient with all my questions.  As all of you have already discovered for yourselves, this is not fun!!

[Pooter]

MsMaggie -

As you'll no doubt find out, if not already, many surgeon's tend to push surgery of their own choice (because they feel most comftable with that approach) and radio oncolygysts will push radiation of their specialty (FSR, CK, GK, etc).  Like it or not, these guys are in business.  To that end, House thinks (and will say) that it's "perfect" for their "product" and other surgeons will say it's better if you use their "product" (approach).  Dr Vrabek is one that I found was a pretty straight shooter in that regard.  If I read what you wrote right, then Dr Vrabek said it's in the wrong place for Middle Fossa and House said it's perfect for EXTENDED middle fossa.  That may be something that is different than regular middle fossa.  So, they could be both right and honest.

Others can tell you about their experience with radiation, but I've heard mixed reviews.  The stats on complications that are long term appears to be about the same (I could be wrong here), but short term complications seems to favor radiation.  The key to radiation is location and size (if you are a candidate or not), and if you can be patient for the 2-3 years (on the low end) to wait for necrosis (cell death of the tumor).  Not everyone has that patience and "want it out NOW!" so they opt for surgery.  In most regards, the two are the same except the surgery part which takes some time to get through the healing.

I really can't say enough nice things about Dr Vrabek and his staff.  He personally was very calm, reassuring, confident, and very patient with mine and Jenni's questions (she really had more than I did and was very thorough).  If you opt for radiation or surgery with Dr Vrabek, you've chosen wisely in my mind.  Sure, there may be better doctors out there, but he's dang good.

If you opt for surgery, then I feel very confident that Dr. Vrabek will choose the approach that is best for YOU.  Mine changed from translab to retro about a week or so before surgery (which confused the heck out of me at the time, which is documented here).   He will use the approach that's best for your AN surgery based on your AN size and location.  That's true of other doctors too I'm sure, but that's the case with Dr. Vrabek.  Can you tell I liked him? 

Regards,

Brian

[Zoe]

Hi Msmaggie,

I can certainly identify with the frustration you seemed to be expressing.  I too am getting conflicting and sometimes contradictory opinions from the drs.  I've gone to 4 now and they each seem to think their approach is best for me.  One said I would have to have middle fossa and the next one said middle fossa would be impossible and ruled it out immediately.  Each dr was "nice" and answered my questions and seemed to know what he was talking about.  But then how do I make a decision with those kinds of conflicting responses?  Hope we each can get some clarity soon and be able to discern what is best for us. 

Zoe

[msmaggie]

Hi Brian,
I did like him and I could tell he was trying to be objective.  I also know that drs., like anyone else in business, are trying to sell their product or services.  I guess I am being territorial about this ear.  It is my "good" ear, the one with no hearing loss, and I am trying to salvage all the hearing I can from it.  I have never had to deal with the medical community in this way before, and I guess I was not prepared to have such conflicting info.  Extended just means they cut a bigger hole in your head to get to the tumor.  I was not ready for him to totally dismiss the possibility of a meningioma, when a group of neuroradiologists all agreed that's what they thought it was.  I will not discount his opinion, but I think I will run my MRI through one more source before I decide.  He did say , since he was recommending retro, that I could wait until school was out for the summer to do anything.  That had a huge appeal.
I like the radiation idea because I can continue to function somewhat normally.  I know there is no way I  will know if it worked until time has passed.  With surgery, I get all the yucky side effects up front, but I have solid info on the condition of the tumor. 

It's all food for thought.  My frustration comes from unrealistic expectations.  I thought I might be able to get a handle on it as of today.   Silly me....

Thanks for your input.  I took a friend with me today and she was also impressed w/how objective he was.  He  answered al my questions and never seemed to be in a hurry to get to the next patient.

I will be better tomorrow.  Today was a new experience...one of many in my future

Maggie

[robynabc]

Hi,

I just had to comment.  The same thing happened to us.  I was not happy about it either.  

I know House is a great facility.  But the hard sell I got from them was agonizing.  Dr. Brackman told me that the R/S our doctors were going to do was wrong and he said "I disagree with your doctors method".  He also made me feel that if I went to my doctors I was making a mistake.  He made it clear that he thought they were the best and that Eric would be okay only if we went to them.  I cannot convey how hard that was for me.  I spent 3 days in agony because my heart told me to go with the doctors here but I kept feeling that I should "want" Eric to go with them.  I called our doctors, told them what House said,  and asked them to explain the different procedures.  When they explained why they were doing the procedures,  I felt much better and I am glad we stayed here.  The hard sell I got from House made me feel uncomfortable and frankly,  that is why we didn't go to them.  I felt pushed.

Now,  once again, I want to point out that they are a great facility.  If we did not have our docs here Eric would have gone there.  My disagreement is how Dr. Brackman told me that my doctors were doing it wrong.  I didn't even think House even did R/S.  They invented translab and they like it.  

I have never gone into this much detail, because I in no way want anyone to think that House is not good.  But,  this happened to us too and I wanted you to know.


Robyn

[robynabc]

Hi,

just reread your post and realized House might not have been the problem for you it may have been your other doctor in Houston.  If so sorry.  I know how hard it is, you feel like if you make the wrong decision it will be horrible. It won't.  That is where you have to listen to your heart.  The good news is you have some time to decide.  I also found that polling ENTs was a really good way to get a feel for a doctor. 

Robyn 

[leapyrtwins]

Hi, Maggie -

deciding which treatment to choose might very well be the hardest part of your AN journey. 

I have no personal experience with House - didn't even send my MRI results there for their free consultation - but I can honestly tell you I have read mixed things about them both on this forum and through PMs.  Some patients rave about them; some patients curse them.  Regardless, the thing I've heard repeatedly about House is that they recommend surgery 99.9% of the time - which makes perfect sense since they are the pioneers of AN surgery.  Surgical treatment of ANs is what they do, they do alot of it, and they are experts at it.

But is surgery right for all AN patients?  IMO it's not - and that's coming from someone who actively chose surgery.

I guess my point is, like Brian said, docs tend to recommend what they do.  If you go to a doc who believes in surgery, chances are he'll recommend surgery.  If you go to a doc who believes in radiation, chances are he'll recommend radiation.   From what I've heard from friends and relatives in other medical situations, this is true of most doctors.   I remember my best friend telling me when her mom was dying from lung cancer that certain doctors her family consulted had reputations as "cutters" (they advocated surgery) while others had reputations as "zappers" (they advocated chemotherapy).

I was lucky enough to be referred to a neurotologist who does both surgery and radiation and he insisted that I make my own decision.  He even told me that if I chose surgery, it was my choice which approach I wanted (retrosigmoid vs translab).  He had no problem giving me the pros and cons of each treatment, the statistics related to every possible side-effect of each treatment, plus he answered all my questions and then some, but he made it crystal clear that it was my decision and that I must be the one to make it.  At the time, I felt I was the absolute worst person to make this decision, afterall he was the one with the medical degree, but I came to realize he was totally right and I can't even begin to tell you how much I respect him for leading me down this path.  I had to do what I felt was right for me; and that's exactly what I did - with his help, of course.

Do your research, talk to lots of doctors if you feel the need to, but ultimately you should decide what will work best for you.  I always tell AN patients that they should "go with their gut" in deciding which treatment and which doctor(s) to go with.  IMO confidence, as well as a comfort-level, in your treatment choice and your doctor is vital.  As Robyn said "listen to your heart".

Jan

[msmaggie]

Many thanks for the wisdom and patience of all who take the time to respond to the issues and angst expressed in this forum.  I am so lost in this process and I am so grateful I have a place to vent!  My family is wonderfully supportive, as are the friends I have chosen to confide in, but they are not the ones walking around with a hitchhiker in their heads.  I don't know what I would do if I didn't have a place to go to to get firsthand information.

I am calmer today and realize that it just isn't a perfect process.  I will keep searching and asking questions until I feel like I have an answer I can live with. It is a different experience for me....not being in control.    Guess I never thought of myself as a control freak, but as a teacher, I think I got a little too[/img][/img] used to being the one in charge.  Gulp--this feels like one of those dreaded character experiences and I guess it's my turn for an attitude adjustment

Have a good weekend!  I'm going to go clean something...a good way to get my revenge on the situation is to take charge of my messy closet

Maggie

[sgerrard]

I like the radiation idea because I can continue to function somewhat normally.  I know there is no way I  will know if it worked until time has passed.  With surgery, I get all the yucky side effects up front, but I have solid info on the condition of the tumor. 

Hi Maggie,

I thought Brian had it about right on radiation. While you do have to wait a year or two to see if it worked, long term both surgery and radiation have about the same outcome, with regrowth in the 1-2% range. I'm not sure if you want more info on radiation treatment or not, but if you do, just ask.

Steve

[lori67]

Maggie,

I think it's perfectly normal to be a control freak when it comes to your head!  But when you find the right doctors and the right treatment for you, you'll feel comfortable enough to give them the control - at least for a little while.

This has definitely been a learning experience for most of us and I'm sure I'm not the only one who got a little attitude adjustment along the way!

You have a good weekend too - and you can bet on the fact that this AN journey at least results in many, many clean closets!   

Lori

[msmaggie]

Closets are looking good!

Thanks, Steve, for the offer of info on radiation.  I welcome any and all advice, info, etc. 

Maggie

[sgerrard]

Maggie,

Since you didn't ask any specific question about radiation, I'll ask you some.

Are you considering radiation treatment? What do you think about it, based on what you have heard so far? Are you looking for resources where you can find out more? Anything in particular that concerns you about it? Do you want technical information, or a simple introduction?

Steve

[msmaggie]

Hey Steve,
If I go to the doctor in Houston, and if I choose radiation...and it does look viable...the hospital has a Novalis unit, which I think is a form of FSR.  That does appeal to me.  If I choose cyberknife, I know there are clinics that use them here.  The Medical Center in Houston has just about everything you could need for treatment in the way of radiation.  Know anything about Novalis?
Maggie

[sgerrard]

Hi Maggie,

Jim had FSR, I don't know if it was a Novalis or another brand. Novalis is usually used for FSR and the 20+ treatments protocol, although it recently has also been used for a shorter 5 treatment approach. I think they use a mesh mask when they do the short program, making it similar to a CK treatment.

I would tend to rate the radiation treatments in the order CK, GK, FSR, but the differences are not huge. They all end up delivering focused radiation to the tumor, and all three have had plenty of successes. Now that the CK forum is back up, I can post you a link to that, where you can get a nice discussion of all three from knowledgeable radiation oncologists (with some leaning toward CK, of course). The site is undergoing some changes in the next few months, so the link may change eventually.

http://www.cyberknifesupport.org/forum/ (especially the Brain section)

Steve

[aciccare]

Hello, I am confused.

The one thing I learned early on through research is that the size of the neuroma can affect the shrinkgage effect of radiation therapy, bigger tumors can shrink more that smaller ones. Also radiation thereapy will likely effect your hearing over time. But the side effects are less than surgery, altough they tell me the residual side effects from surgery may diminish over time. I opted for surgery. I think I made the right decision. I sent my MRI's and Lab Reports to the University of Pittsburgh, PA Hospital , the Skull Institute in Los Angeles and University of Pa hospital, and all agree that I could wait but time was approaching to make a decision and all recommended retrosigmoid resection, I think its called. The procedure was performed at Thomas Jefferson University Hospital . One of their physicians is on the board of the Acoustic Neuroma Assc.

Best wishes and let me know how you make out. Hang i n therre, thats the most important thing now and after treatment.

anthony