Author Topic: Looking for a Team...  (Read 4149 times)

TrueClarence

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Looking for a Team...
« on: April 29, 2021, 12:20:26 am »
Hi everyone.  I am 42 years old and was just diagnosed with a 2.1 cm AN.  I am still trying to figure out how to navigate this all and was just wondering if there are any renowned facilities that have a "round table" or team approach when deciding which route to take (surgery/radiation).  By looking through the discussion board, I know I have some great choices for either/or but would really like to consult with a team.  I am basically willing to travel anywhere in the U.S. but just need some help deciding what is the best option for me.  Thanks so much!

vanisubodh

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Re: Looking for a Team...
« Reply #1 on: May 05, 2021, 10:35:31 pm »
Hi,
 I second this question. I am also in the same situation. I am looking for some great teams for my surgery or radio treatment.
Thanks
Vani

TrueClarence

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Re: Looking for a Team...
« Reply #2 on: May 18, 2021, 12:53:19 am »
Hope you're having some luck with that Vani.  I'm still having a hard time trying to decide which route to go.

Greece Lover

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Re: Looking for a Team...
« Reply #3 on: May 18, 2021, 01:18:03 pm »
I'm not an expert, but from talking with people on here over the last five years, it certainly seems that a "roundtable" approach is not common. I think generally people who treat AN tend to specialize in one treatment modality or another, esp. surgery vs. radiation. Another thing that makes it difficult is even on this forum, people often advocate for the treatment they chose. (I'm guilty of that, too!)

One thing I did was gather information from several different sources and then talked it over with my general practice doctor. That was helpful to get medical advice and talk through things from someone not directly involved in providing the AN treatment.

good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

bfoley

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Re: Looking for a Team...
« Reply #4 on: May 19, 2021, 03:43:01 am »
I went to the Mayo in Rochester MN (also U of MN hospital).  I used the questions sheet to develop my list of questions.  At Mayo, they treat a large number of new patients per year and since higher volume of ANs treated has been shown to lead to improved outcomes, I selected them for my treatment. They had a team visit which included both radiology and surgery specialists, as I was a candidate for either.  If your AN is a size and location that would allow either approach, YOU need to make the decision on what to do.  Base this on your goals for outcome.  I chose Dr. Michael Link who actually does both radiology and surgery, and I chose radiology. There is no one size fits all and there are pluses and minuses with each approach.  Honestly knowing what the after effects are/can be is what you should look at.  My goal was to stop growth and not have symptoms get worse.  I am SSD (was prior to radiosurgery), tinnitus, and some balance issues.  I still drive, get around fine and have full facial movement. 

TrueClarence

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Re: Looking for a Team...
« Reply #5 on: May 20, 2021, 12:12:52 am »
Thanks GreeceLover. Yeah, I'm seeing that most doctors lean heavily toward one approach and so I'm trying to do what you mentioned in terms of getting consults from doctors from each approach and then make a more informed decision. It's a tough decision for sure!
Thanks Bfoley. I'm considering getting a fourth opinion from Mayo because I like that they do both surgery and radiation and seem to be less biased. Did you have balance issues before radiation? Wondering if there were any adverse outcomes from the radiation, other than losing hearing. Thanks!

Greece Lover

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Re: Looking for a Team...
« Reply #6 on: May 21, 2021, 07:03:03 am »
Great to hear of a more roundtable type of process at Mayo. They obviously have the resources to do it!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

bfoley

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Re: Looking for a Team...
« Reply #7 on: May 24, 2021, 03:39:35 am »
TrueClarence-
I had both the SSD and the balance issues prior to the Gamma Knife. 

As far as balance, I had been working with vestibular therapy for balance prior to the gamma, and continue to work on it daily.  I guess it will be a constant thing for me.  Walking on "uneven" surfaces is something I can do when taking my dogs to our off leash dog park, as the path is 3-5' of wood chips that are not spread evenly.  I have even gotten brave enough to close my eyes and take 5 - 10 steps at times.  At first I had to hang on to my husband, because I am relying heavily on my eyes to know which way is up.  Core is also key for me in keeping balance.  Hopefully I can get back to my community yoga class, which was stopped due to Covid.  I find that being active and challenging myself keeps things better. 

My first goal was facial movement preservation. I told myself that if it got no worse, I could deal with it.  I now have the Starkey livio hearing aid as a "cros" system, (microphone on deaf side, receiver in good ear) for the SSD.  Of course with WFH, I only wear it when I need to go out!

My mantra in explaining what this tumor is to others is "life altering not life ending."

Wishing you success in your selection, and please let us know how you are doing.

 

 


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