Overloaded Newbie Dizzy Dame

[MaryBKAriz]

Hi,

I appreciate so much the many wonderful people on this site. It is 4 days since I found our about my 1.1cm tumor. I have received so much encouragement that I am really doing well, except for all the info.

I met Dr Naspit in Phoenix Yesterday afternoon. He is connected with Barrow Neurological Institute and has  a lot of experience in GK, CK and surgery for AN. The institution I know is very, very good and the Dr was very thorough with his explanations to my husband and I. We both asked questions and all was explained well. The however I hope is not strange, we occasionally heard things differently or we forgot a few of the things altogether.

I have 4 options - 1, the wait, 2. CK, 3. GK and 4 surgery. As all know here there are pluses and minuses to all of the options.

My symptoms are fairly recent and got significantly worse rapidly over the last couple of months. so I do not want to wait 6 months, but I do not plan to rush into anything since this is so much to absorb and is not majorly time critical. I still have hearing albeit distorted and I have the full feeling in my ears. The worst symptom for me is the imbalance. I feel like I am on a ship and every once in awhile the "waves" get worse.

I am not quite understanding the pluses of CK. I remember some of the downsides. I know he said something that was better over the GK. Since he does all 3 he has no favorites
and told us pluses and minuses of all.  He is having a balance test done on me  on the 9th. Is the CK more likely to save more balance or hearing or facial nerve?

Any input anyone has on any and all options, I really have appreciated it. I have appreciated the input I have read. Also, has anyone here used Dr. Naspit, Speltzer or Fucci in AZ? If so were you happy??? If post treatment, are you still happy??? Any long term life changes I should take into the thought process?

Thank you all of you and best wishes for your health.

Mary

[Yvette]

Keep us posted on what you decide. I had translab so I'm no help. ANs are usually slow growing, but occassionally some can have growths spurts, so don't think of Watch and Wait as ignoring it. Best wishes, Yvette

[Derek]

Hi there Mary...

I am now into my 7th year in the 'watch & wait' mode and will continue without treatment intervention for as long as I possibly can, subject to the results of my annual MRI scans and acting upon the advice and guidance of my neurosurgeon. Just as you are now experiencing, I also had an imbalance problem at the time of my diagnosis but nature has very helpfully compensated that aspect and I now have no balance problems whatsoever.

I have chosen stereotactic radiosurgery as my preferred treatment option should and if, treatment intervention becomes necessary in the future when I will opt for GK as CK is not yet available within the UK.

Both GK and CK have similar success rates of approx. 97% and the essential diifferences are that GK is usually administered with a single radiation doze and requires that a frame be secured to the head (nothing too uncomfortable) whereas CK can offer fractionated dozes of radiation and requires the fitment of a face mesh to secure the head which some patients may prefer. GK has been established worldwide for over 30 years and therefore has more statistical info available over CK.

Best of luck with your ultimate decision.

Derek

[robynabc]

HI Mary,

No help here we had surgery.  I say we but mean Eric had surgery.  One thing I did want to say that might help.  Eric was in high school last year when this was going on but he had a small little tape recorder that he used in school.  We took that with us to all appointments and taped the conversation.   It was the best thing we did.  We could go back over the conversation if we forgot something.  I think you can pick one up for 25 bucks or so.  The best thing we ever did.  That way we had the exact words when making our decision.

Robyn

[MaryBKAriz]

Wow Robyn,

I am so glad you wrote! OF COURSE that is terrific idea. I had NOT thought of it and am going to make sure we take a recorder from now on.....was it okay with DRs? My husabnd and I bot went to the first meeting. We had just found out about "Goldie" and were still in overload. WE forgot some things he said and some things we remember differently. I would be so good to clarify those things now.

Thank you, thank you!

Best wishes to you and your son! This is somewhat hard for me but I think it would be 1000 times harder when you have a your son dealing with this. People around me seem more upset, including my 87 yr old mom.

Take care,

Mary

[AJ]

Mary, Hello!

My name is Annette and I live right next door in Tempe.  I too was just diagnosed on Thursday (3/27) by Dr. Daspit.  Were you by any chance referred to him by Dr. Robert Thompson - ENT?  Because when I met with Dr. Daspit, he told me he had just diagnosed someone with the same condition that also saw Dr. Thompson.  Just Curious.  I spent most of the day yesterday reading and researching and looked up this website per Dr. Daspit request, and I found this WONDERFUL forum.  I have gain so much knowledge and have a list of questions written down to ask the other doctors on Dr. Daspit's team.  I am trying hard to focus on the positives 1 - BENIGN and 2 - OPERABLE.  Now I need to decide on whether I want CK or GK.  Open surgery scared the wits out of me.  I've had major surgery before, but cranial surgery just plain scares me.  Barrow has an excellent reputation Mary.  People come from all over for treatment there.  I know we are in good hands.

P.S.  A similar note may post because I think I may have incorrectly posted the first one.  Not sure

[MaryBKAriz]

Hi Annette!

Weird, huh??? We lived in Tempe when we first moved here. Yes, Dr Thompson sent me and I saw Dr Daspit late Thursday afternoon until about 6 pm. That is incredible! I am so thankful Dr Thompson knew to have this MRI-ed.

I think we are in great hands with Dr Daspit and BNI! What treatment or treatment choices do you have??? I have the 4 as you probably have read. My tumor is 1.1 centimeters

I just met a lady online yesterday from Chandler who had surgery last year. A fellow from Ahwatukee has also contacted me. He also is post treatment.

Let me know how you are. Did you have symptoms? This is surreal to me, yet strangely believable at the same time. I know it doesn't quite make sense but I knew something was NOT right.

My husband and I are heading our for a getaway Sunday - Thursday. After that if you need to talk by email or phone, I would love to be able to.

Thank you for writing, hope to stay in touch,

Mary

[leapyrtwins]

Mary & Annette -

what are the odds 

I think it's so cool that you have each other during this trying time in your lives 

I wish I would have had someone to go through the journey with me; I found out about this forum post op 

But I'm so glad that I found it 

Jan

[MaryBKAriz]

Hi Jan,

I agree what are the odds?? The other lady who contacted me lives within 3 miles! I know things work for a reason. You are so sweet Jan I wish you had found the site earlier so you could have had the benefits I am benefiting from.. You are passing it on when you didn't get the pass. You are an inspiration. Thank you so much for your posts. Everyone here has been so supportive.

Mary

[lori67]

How great to have an "AN Buddy" so close to you!  It will be nice to have someone to lean on!  Just don't lean too hard - those balance issues can be tricky!! 

Lori

[MaryBKAriz]

  Good one, just like I feel today. Thank you!  Mary