Author Topic: Another Newbie  (Read 4075 times)

pr1nsis

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Another Newbie
« on: July 07, 2010, 09:37:12 am »
Hello!

Im a 'newbie' to this site and am so glad that resources like this are available (although - I wish I didn't need them)...  I was diagnosed with acoustic neuroma last December (and Chiari too - I guess my brain had a BOGO going on)... 

Although I'm in the 'waiting' process - we will be doing surgery to remove the tumor (and to correct the Chiari)...  My neurosurgeon is deciding now whether doing both surgeries at the same time would be better or too traumatic for my body...  I'm not sure if anyone else has had any experience with these two issues but I would love to hear any feedback...

Although my tumor is small he wants to get it out sooner than later because I am only 25 years old and it will just continue to grow.  He said it's easier to get it out when its smaller.

Looking forward to getting to 'know' you all! 

~jb

Jim Scott

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Re: Another Newbie
« Reply #1 on: July 07, 2010, 12:47:23 pm »
Hi - and welcome, JB ~

I'm sorry you have to deal with both an acoustic neuroma and the Chiari I malformation but I'm glad you discovered this website and decided to register and post your message(s).  I'm not a doctor and so I can't credibly comment on the choice of the AN and the Chirai malformation being surgically addressed simultaneously, but I would definitely consider obtaining more than one doctor's opinion on this important issue.  Although it's unpleasant having to cope with two difficult medical issues at once, I'm confident that your youth will help you recover and move on from this, in time.

My fellow moderator, Phyl (posting under the screen name 'ppearl214') had a smallish AN successfully treated with radiation in 2006.  She also had the Chiari malformation.  I'm sure Phyl will be along soon to add whatever information she has.  Meanwhile, consider yourself among friends, here.  We'll support whatever treatment decisions you make and try to offer you as much help and information as we can to get you through this medical challenge.

Jim  
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Denise S

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Re: Another Newbie
« Reply #2 on: July 07, 2010, 08:46:33 pm »
Well, I too am an AN person with Chiari.   My smaller size AN  was removed with the Middle Fossa surgical approach 8 months ago after awhile of watch & wait and it was growing.    I had some neck & head issues prior to surgery, but  a few months after surgery got real bad.   The further MRI's said Chiari Malformation, and looking back on some MRI's from the past 3 years it looks like it may have gotten worse.    Being post surgery though, multiple neurosurgeons think my symptoms may be related to the AN surgery (I DON'T anymore).        Oh, would I love to talk with you and get more info. and give more info. 

I will send you more info. via private message.    Since with both of these conditions there is much to list.         One thing I know for sure Phyl told me was to be sure you have a GOOD doctor who specializes in Chiari for that.    I have been researching Chiari a lot the past 3 months.     One thing I will say is that many of the issues I currently have almost sound familiar to many on this forum that have had Retrosigmoid surgery.   Interesting to say the least.

Denise (MI)
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

ppearl214

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Re: Another Newbie
« Reply #3 on: July 08, 2010, 04:35:09 am »
My fellow moderator, Phyl (posting under the screen name 'ppearl214') had a smallish AN successfully treated with radiation in 2006.  She also had the Chiari malformation.  I'm sure Phyl will be along soon to add whatever information she has.  Meanwhile, consider yourself among friends, here.  We'll support whatever treatment decisions you make and try to offer you as much help and information as we can to get you through this medical challenge.

Jim  

Hi JB and welcome.  

As Jim noted, yes... I have AN and CM1 as well.  Anissa, here on this site, also has AN and CM1 as well as Denise noted above.

I did have radiation (Cyberknife) done on my AN just over 4 years ago (dr's now deem my AN journey as a "done deal") and we monitor the CM1 closely.  My slippage has not progressed over time but I am asymptomatic with the migraines, extremity weakness, etc.  There is a woman here (Raydean) who's daughter has CM1 (but not AN) and her daughter's CM1 journey has been most difficult. Raydean is a lovely woman and has shared much about her daughter's CM1 journey.  

For the CM1 journey, it is imperative that you find a CM1 specialist. There are many neurosurgeons that say "oh, sure... I can handle your CM1 as well...". Don't be fooled.  It is a very rare condition (much like AN's) and not any old surgeon can handle it.  I know of CM1 specialists on the east coast and N. CA that do have a specialty in CM1 and not sure where you are located.  Glad to share info if I can.

Suggestion is to also go to the forum homepage, do a "search" option for "chiari 1" and you will see many of the discussions over the years regarding AN's and CM1 combined.  My inbox is always open and glad to help if I can.

Again, welcome!
Phyl
« Last Edit: July 08, 2010, 04:36:58 am by ppearl214 »
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leapyrtwins

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Re: Another Newbie
« Reply #4 on: July 08, 2010, 07:13:04 am »
Hi, JB. 

Welcome to the Forum  ;D

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

pr1nsis

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Re: Another Newbie
« Reply #5 on: July 11, 2010, 09:12:31 am »
Thank you all for the welcome!  It makes you feel a little more 'normal' when others have (or are) going through what you are!

thanks again!

Tammy29

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Re: Another Newbie
« Reply #6 on: July 25, 2010, 05:48:22 pm »
Hellol!  I wish you good luck with your surgery sometime in the future.  I was 24 when I had mine remove.  Actually I turned 25 three days after surgery.  I totally understand what you are going through.  Nothing like reading about AN and how they rarely happen to people under the age of 30.  We defintely are special!  best of luck to you!
Hello!

Im a 'newbie' to this site and am so glad that resources like this are available (although - I wish I didn't need them)...  I was diagnosed with acoustic neuroma last December (and Chiari too - I guess my brain had a BOGO going on)... 

Although I'm in the 'waiting' process - we will be doing surgery to remove the tumor (and to correct the Chiari)...  My neurosurgeon is deciding now whether doing both surgeries at the same time would be better or too traumatic for my body...  I'm not sure if anyone else has had any experience with these two issues but I would love to hear any feedback...

Although my tumor is small he wants to get it out sooner than later because I am only 25 years old and it will just continue to grow.  He said it's easier to get it out when its smaller.

Looking forward to getting to 'know' you all! 

~jb

 


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