Options in Texas

[LizAN]

Hi, all.  I'm new here but have been actively reading the posts for a week or so.  The last week of August, I was diagnosed with an 8.7 mm AN on the left side.  I have a mild hearing loss, tinnitus, and I feel a bit unsteady on my feet- nothing I can't live with right now, considering the risks of treatment.  I'm in wait and watch mode, and have not yet started meeting with doctors beyond my local ENT who is not a surgeon.

I'm considering the possibility of having surgery at House Ear Clinic in LA, but I'm also wondering about options closer to home, including radiation treatment.  I live in Austin, which is in central Texas.  Does anyone have experience with MD Anderson in Houston?  Are there other options worth considering, in my neck of the woods?

Also, are there other people in Austin who might be interested in starting a local support group, since there is not yet one in this city?

Thanks for being here, although I'm sorry we all needed to be.

Liz

[msmaggie]

Liz, there are several of us who live in Houston.  Most of us have had surgery, but I know my surgeon mentioned FSR (fractionated stereotactic radiation.  Did I spell that right?) as an option.  I did not follow up on it, but I am sure it was in the Medical Center.

By all means send your MRI to House.  They will give you a free phone consultation.  I did not go to House, but got really valuable info from them that formed my decision to have the surgery. Everyone who has used them has loved them, I think.  My surgery was done in Houston, and my dr. has treated several of us.

Check out ALL your options and get lots of opinions.  You will feel much better about the treatment you choose eventually.

Stay in touch and let us know what you need. We are happy to hear from you, but sorry about the circumstance. 

Priscilla

[CHD63]

Hi Liz and welcome to this forum.  I do not live in Texas but Priscilla has filled you in on your question about Houston.  Good call to send your MRI CD to House for an evaluation.  They will be very honest with you on what they see and recommend, without any obligation to go to them ...... unless you choose to, of course.  It seems your AN is still very small so you have several options and normally plenty of time to research the possibilities to wait and watch, have radiation, or have surgery.

If you have not already done so, I would urge you to send for the free ANA materials.  They offer much information, as well as reassurance.  We, on this forum, are active because we are either questioners like yourself or because we want to share our experiences and attempt to ease the anxiety of newly diagnosed people.  Please ask any and all questions, none are too silly to ask.

Best thoughts and let us know how you are doing.

Clarice

[leapyrtwins]

Hi, Liz.

As Clarice suggested, you should contact the ANA and ask for their informational brochures.  They're very helpful and will explain a lot.

House is definitely a good place to go, but I had my surgery a lot closer to home (in Illinois) and my outcome was just as good as it would have been if I had traveled to Los Angeles.  And I am not alone in this.

Bottomline, don't feel like you have to travel to get good results; chances are you'll find experienced, qualified doctors a lot closer to you.

Check out the main page of the ANA website under "Medical Resources" for Texas.  All the medical facilities listed in this section are considered by the ANA to be Centers of Excellence - which basically means they have passed certain treatment criteria created by the ANA.

There are several Forumites from Texas - Brian (Pooter), Patrick (texsooner), Kay (kaybo), and Priscilla (msmaggie) all come to mind.  You may want to search for their posts.

Best,

Jan 

[Brendalu]

Liz,
 Welcome to the very exclusive club!  I'm sorry you have to be here, but as you have seen already, lots of folks here to help.  I live South of Houston and had my surgery in Clear Lake.  I wasn't happy with the hospital or a good part of the staff.  My after care was not what it should have been.  BUT, my ENT and neurosurgeon were tops for the surgery.  I had trans lab, so I lost my hearing.  They had me hooked up to a monitor carefully watched over by a guy named Le Roy in a white jumpsuit, with the bluest eyes I have ever seen.  He made certain that no nerve damage was done.  I have not had dry eye, or needed gold weights.  I haven't had problems with my smile.  I would have preferred to have had my surgery at St Luke's or Methodist in Houston....they do a bunch of all kinds of brain surgeries, so they have a very finely tuned staff.  Experts in handling brain surgery patients.  Clear Lake did not.  I have met a couple of folks who had their AN surgeries at MD Anderson.  They did fine.  I can't say enough good things about MD Anderson...had breast cancer treatment there twenty-four years ago!  They were tops.
The only advice I am going to give is to weigh all of your options.  Research and get more than one or two opinions.  I have found each doctor has their own protocol and you can't change it.   So find one that matches what you want...it is your head!  Good luck and don't be afraid to ask any questions.  Someone always has an answer!

Hang in there,
Brenda

[carter]

it is my opinion that you might wish to consider CK ...

i had mine done in Tulsa - i do not recommend either doctor here.  not because of their abiliites, but their patient care.

i now see Dr Medbery of OKC.  i will give my full recommendation of him.  it is  a drive, but definitely an option.  From Austin to OKC is nto that far.

Dr Medbery is a moderator on teh cyberknife forum.  he will also look at your mri, etc and give a long distance evaluation  .... or at least he offered this to me.

food luck

[LizAN]

Priscilla,

Thanks for the response!  Sorry I haven't been on the forum lately - I go to work and come home to go straight to bed.  I'm spending my weekends recuperating from my weeks, and haven't had much time to be online.  I have some health problems unrelated to the tumor, which makes me reluctant to consider surgery right now.

I did see the local surgeon, Dr. Patrick Slater, earlier this week, and he thinks watch and wait is a viable option for me.  He also said that since my tumor is so far inside the canal, the chance of preserving my hearing, even with the middle fossa approach, is only about 50/50.  Has anyone else had this same advice, or experience with surgery on a tumor in this position (very near the cochlea)?

Liz

Liz, there are several of us who live in Houston.  Most of us have had surgery, but I know my surgeon mentioned FSR (fractionated stereotactic radiation.  Did I spell that right?) as an option.  I did not follow up on it, but I am sure it was in the Medical Center.

By all means send your MRI to House.  They will give you a free phone consultation.  I did not go to House, but got really valuable info from them that formed my decision to have the surgery. Everyone who has used them has loved them, I think.  My surgery was done in Houston, and my dr. has treated several of us.

Check out ALL your options and get lots of opinions.  You will feel much better about the treatment you choose eventually.

Stay in touch and let us know what you need. We are happy to hear from you, but sorry about the circumstance. 

Priscilla

[LizAN]

Thanks for the tip on Dr. Medbery!  I may just check him out.  How do I find the cyberknife forum?

Liz

it is my opinion that you might wish to consider CK ...

i had mine done in Tulsa - i do not recommend either doctor here.  not because of their abiliites, but their patient care.

i now see Dr Medbery of OKC.  i will give my full recommendation of him.  it is  a drive, but definitely an option.  From Austin to OKC is nto that far.

Dr Medbery is a moderator on teh cyberknife forum.  he will also look at your mri, etc and give a long distance evaluation  .... or at least he offered this to me.

food luck

[LizAN]

Dr. Slater also said that, because of the position of the tumor, he would not recommend retrosigmoid.  Has this happened to anyone else?

Liz

Priscilla,

Thanks for the response!  Sorry I haven't been on the forum lately - I go to work and come home to go straight to bed.  I'm spending my weekends recuperating from my weeks, and haven't had much time to be online.  I have some health problems unrelated to the tumor, which makes me reluctant to consider surgery right now.

I did see the local surgeon, Dr. Patrick Slater, earlier this week, and he thinks watch and wait is a viable option for me.  He also said that since my tumor is so far inside the canal, the chance of preserving my hearing, even with the middle fossa approach, is only about 50/50.  Has anyone else had this same advice, or experience with surgery on a tumor in this position (very near the cochlea)?

Liz

Liz, there are several of us who live in Houston.  Most of us have had surgery, but I know my surgeon mentioned FSR (fractionated stereotactic radiation.  Did I spell that right?) as an option.  I did not follow up on it, but I am sure it was in the Medical Center.

By all means send your MRI to House.  They will give you a free phone consultation.  I did not go to House, but got really valuable info from them that formed my decision to have the surgery. Everyone who has used them has loved them, I think.  My surgery was done in Houston, and my dr. has treated several of us.

Check out ALL your options and get lots of opinions.  You will feel much better about the treatment you choose eventually.

Stay in touch and let us know what you need. We are happy to hear from you, but sorry about the circumstance. 

Priscilla

[LizAN]

Thanks for the response, Clarice!

I did send for the free ANA materials, and they were very thorough.  Thanks for the tip.

Liz

Hi Liz and welcome to this forum.  I do not live in Texas but Priscilla has filled you in on your question about Houston.  Good call to send your MRI CD to House for an evaluation.  They will be very honest with you on what they see and recommend, without any obligation to go to them ...... unless you choose to, of course.  It seems your AN is still very small so you have several options and normally plenty of time to research the possibilities to wait and watch, have radiation, or have surgery.

If you have not already done so, I would urge you to send for the free ANA materials.  They offer much information, as well as reassurance.  We, on this forum, are active because we are either questioners like yourself or because we want to share our experiences and attempt to ease the anxiety of newly diagnosed people.  Please ask any and all questions, none are too silly to ask.

Best thoughts and let us know how you are doing.

Clarice

[LizAN]

Jan,

Thanks for responding, and thanks for the tip on searching for the other Texans on the forum!  I had an appointment with my local surgeon and was surprisingly impressed with him.  I'm officially in wait and watch mode, now, while I continue my research!

Liz

Hi, Liz.

As Clarice suggested, you should contact the ANA and ask for their informational brochures.  They're very helpful and will explain a lot.

House is definitely a good place to go, but I had my surgery a lot closer to home (in Illinois) and my outcome was just as good as it would have been if I had traveled to Los Angeles.  And I am not alone in this.

Bottomline, don't feel like you have to travel to get good results; chances are you'll find experienced, qualified doctors a lot closer to you.

Check out the main page of the ANA website under "Medical Resources" for Texas.  All the medical facilities listed in this section are considered by the ANA to be Centers of Excellence - which basically means they have passed certain treatment criteria created by the ANA.

There are several Forumites from Texas - Brian (Pooter), Patrick (texsooner), Kay (kaybo), and Priscilla (msmaggie) all come to mind.  You may want to search for their posts.

Best,

Jan 

[LizAN]

Hey, Brenda,

Thanks for the response.  I'm glad your surgery went so well.  Sorry that you weren't happy with the hospital or the staff.  Translab is one of the options I am considering, even though my tumor is small and I only have a mild hearing loss.  Do your doctors not work at Methodist or St. Luke's?

That's great to hear about your breast cancer treatment at MD Anderson. I have always thought that if I got cancer, I would go straight to them.

Liz

Liz,
 Welcome to the very exclusive club!  I'm sorry you have to be here, but as you have seen already, lots of folks here to help.  I live South of Houston and had my surgery in Clear Lake.  I wasn't happy with the hospital or a good part of the staff.  My after care was not what it should have been.  BUT, my ENT and neurosurgeon were tops for the surgery.  I had trans lab, so I lost my hearing.  They had me hooked up to a monitor carefully watched over by a guy named Le Roy in a white jumpsuit, with the bluest eyes I have ever seen.  He made certain that no nerve damage was done.  I have not had dry eye, or needed gold weights.  I haven't had problems with my smile.  I would have preferred to have had my surgery at St Luke's or Methodist in Houston....they do a bunch of all kinds of brain surgeries, so they have a very finely tuned staff.  Experts in handling brain surgery patients.  Clear Lake did not.  I have met a couple of folks who had their AN surgeries at MD Anderson.  They did fine.  I can't say enough good things about MD Anderson...had breast cancer treatment there twenty-four years ago!  They were tops.
The only advice I am going to give is to weigh all of your options.  Research and get more than one or two opinions.  I have found each doctor has their own protocol and you can't change it.   So find one that matches what you want...it is your head!  Good luck and don't be afraid to ask any questions.  Someone always has an answer!

Hang in there,
Brenda

[Brendalu]

Yes, both have privileges at Methodist and St Luke's...it was more convenient for them to operate at Clear Lake............never again.
If I could have been a w&w, it would have been my only choice.

Brenda

[LizAN]

What kept you from being able to watch and wait?

Liz

Yes, both have privileges at Methodist and St Luke's...it was more convenient for them to operate at Clear Lake............never again.
If I could have been a w&w, it would have been my only choice.

Brenda

[james e]

I am in Georgetown, and just had my surgery in Houston by Dr Vrabec at Methodist Hospital in March 2010. The best is right here...no need to go to so far from home.