Author Topic: Waiting and watching for 2 and a half years  (Read 6029 times)

dominator8

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Waiting and watching for 2 and a half years
« on: February 28, 2006, 11:47:02 am »
I was diagnosed with AN in May 2003. The tumor was small and Dr. John Jane at UVA Medical Center thought I was a prime canidate for Gamma Knife so he referred me to Dr. Ladislau Steiner (also at UVA and also the man that pioneered the Gamma Knife). Gamma was done in September of 2003 on the AN and also on a Menningioma. Follow up MRI 6 months later showed that the menningioma was completely gone but the AN had grown slightly. After 2 years of follow up MRI's the AN continued to grow slowly (it's about the size of a pinto bean, best I can tell) and I was told to wait and watch after each MRI until September of 05 when I saw Dr. George Hashisaki, and ENT surgeon, and he clearly stated that it looked to him like the AN had never been touched by radiation and that there was scar tissue build up on the trigeminal nerve and the he highly recommended microsurgery AND that he did not understand why Dr. Steiner was still making me wait. He recommended that I wait no longer than my next MRI (February 06) before taking action. All the while my symptoms increased. Dizziness, nausea, pain in the face and jaw, hearing loss (almost total now) and vision problems in my right eye (same side as the AN but every doctor I have seen has stated that vision problems are TOTALLY unrelated,..... I think otherwise,....has anyone else experienced vision problems?). The February 06 MRI revealed no significant change in the AN and I requested consultation with both Dr. Steiner and Dr. Hashisaki. Dr. Steiner still wants to wait and watch. Dr. Hashisaki has now done a total flip-flop and is now stating that microsurgery is not necessary and that there is no way that the Gamma knife could have missed the tumor in 2003 and that removing the tumor would not help with my balance problems,..blah, blah,..... totally contradicting everything he said in September 2005. All of the doctors downplay my symptoms. I am now out of work because I cannot drive and forced to take valium to relieve some of my symptoms. No one will give me any straight answers and it seems that something is not right or something is being covered up. Has anyone else out there had any similar experiences?? I am going out of my mind with this. >:(

Kilroy1976

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Re: Waiting and watching for 2 and a half years
« Reply #1 on: February 28, 2006, 01:27:59 pm »
I can comment a bit on the balance/dizziness issue. There is a possibility that surgically removing the tumor, or shrinking it with radiation, could improve your balance. If the tumor is removed/reduced, pressure on the vestibular nerve may be relieved enough to allow it to make a new connection between the ear and brain. However, those nerves are tempermental; damaging a nerve is not like cutting yourself shaving and there's no guarantee that it will heal quickly or at all.

There is also a possibility that surgery or radiation may damage the nerve so severely that the brain will no longer receive a signal from it. Of course, that scenario is hardly ideal, but it will improve balance by eliminating the "bad information" that the brain was receiving from it.

The last scenario is that your brain will figure out that your right-side ear is a deadbeat and quit listening to it. Again, there's no telling how long that might take.

1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

GM

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Re: Waiting and watching for 2 and a half years
« Reply #2 on: February 28, 2006, 08:00:57 pm »
I too had Gamma Knife at UVA in Nov of 2003 by Dr. Steiner.  My tumor went from 1.4 - 2.1 cm...(depending on whose measuring it)...after the treastment.  I'm retired military and my AN was found while I was active duty.  The military docs measured it originally at 1.8 cm and it swelled after radiation to 2.0 (military doctor measurements), and holding.  If you look for my posts here on this site you'll see that I vented about how different the measurements were and also the differences of opinion. I passed my 2 year mark on November of 2005 and UVA felt that the tumor should be retreated or surgically removed since it hadn't shrank...originally I freaked a bit    But then my common sense took over...

I chose differently.  If the thing is holding steady and not causing complications...I don't plan on zapping it again or cutting it out...it could still be dying!   I called Dr. Steiner and explained how I felt.  He said that if I wasn't having any problems that he agreed to monitoring it.  If I developed new problems...then we might need to readress it.

So...I hooked up with a new ENT military Doc and plan to have another MRI in 6 months to see what's up.  I don't have any new symptoms other than increased tinnitus in my AN (left) ear from an ear clogging episode in July of 2005...I was prescribed Prednizone (sp)...great stuff...freaky side effects...but great stuff.  I've never had medicine make me feel that way before.  But it worked.

The moral here is that we still need to take an active role here, no matter what we have had done.  If you want to email me or talk directly just let me know by private email.  I'd be happy to talk with you.

GM
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Battyp

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Re: Waiting and watching for 2 and a half years
« Reply #3 on: February 28, 2006, 10:12:10 pm »
Dominator...be proactive you know you better than any doctor!  If I'd have listened to my ent I'd be dead by now.  I have vision problems that are related to my surgery.  I did have eye changes right before diagnosis they haven't quit figured out if it was due to the tumor or just an age thing.  It seems once you hit 40 they blame everything on age  lol.  I was originally told the ringining in my ear was because I was turning 40..geesh!  What will they blame on my 50's? 

That tri nerve is tricky I'm dealing with post surgical issues they are blaming on that nerve...One day it will all get better.

Keep the faith,
Michelle

arcteryx

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Re: Waiting and watching for 2 and a half years
« Reply #4 on: March 01, 2006, 03:17:30 am »
I can comment that I am currently pre-op with a 3cm AN and the vision on my AN side has also gotten much worse. Like you, the doctors dismiss it as unrelated and probable dryness, but I haven't noticed any dryness and I still cry out of both eyes ... mostly when I think about the upcoming surgery.  ;)

Battyp

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Re: Waiting and watching for 2 and a half years
« Reply #5 on: March 01, 2006, 08:01:55 am »
Wow you cry out of both sides?  I'm impressed!  I actually had my ear tear at breakfast yesterday my son got so excited...he kept saying mom your tearing I guess he thought I couldn't feel it.  Actually I could barely feel it and it did take me a few mins to figure out what was going on.  Now if I could just get my nose to stop running when I eat ::)

ppearl214

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Re: Waiting and watching for 2 and a half years
« Reply #6 on: March 01, 2006, 02:30:41 pm »
dominator, I honestly don't know how to reply but battyprincess is right... you know best of all how you feel. Do not hesitate to get any and all professional opinions, 2nd opinions, 3rd opinions... I constantly remind myself that dr's are not G-d's and it's my body, not their's.

Do any and all you can.  And know that we are here for you 200%! :)

Phyllis
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Windsong

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Re: Waiting and watching for 2 and a half years
« Reply #7 on: October 13, 2006, 07:02:55 pm »
Well, I'd say print this post out and take it to every single one of your doctors.

Windsong.



I was diagnosed with AN in May 2003. The tumor was small and Dr. John Jane at UVA Medical Center thought I was a prime canidate for Gamma Knife so he referred me to Dr. Ladislau Steiner (also at UVA and also the man that pioneered the Gamma Knife). Gamma was done in September of 2003 on the AN and also on a Menningioma. Follow up MRI 6 months later showed that the menningioma was completely gone but the AN had grown slightly. After 2 years of follow up MRI's the AN continued to grow slowly (it's about the size of a pinto bean, best I can tell) and I was told to wait and watch after each MRI until September of 05 when I saw Dr. George Hashisaki, and ENT surgeon, and he clearly stated that it looked to him like the AN had never been touched by radiation and that there was scar tissue build up on the trigeminal nerve and the he highly recommended microsurgery AND that he did not understand why Dr. Steiner was still making me wait. He recommended that I wait no longer than my next MRI (February 06) before taking action. All the while my symptoms increased. Dizziness, nausea, pain in the face and jaw, hearing loss (almost total now) and vision problems in my right eye (same side as the AN but every doctor I have seen has stated that vision problems are TOTALLY unrelated,..... I think otherwise,....has anyone else experienced vision problems?). The February 06 MRI revealed no significant change in the AN and I requested consultation with both Dr. Steiner and Dr. Hashisaki. Dr. Steiner still wants to wait and watch. Dr. Hashisaki has now done a total flip-flop and is now stating that microsurgery is not necessary and that there is no way that the Gamma knife could have missed the tumor in 2003 and that removing the tumor would not help with my balance problems,..blah, blah,..... totally contradicting everything he said in September 2005. All of the doctors downplay my symptoms. I am now out of work because I cannot drive and forced to take valium to relieve some of my symptoms. No one will give me any straight answers and it seems that something is not right or something is being covered up. Has anyone else out there had any similar experiences?? I am going out of my mind with this. >:(
« Last Edit: October 29, 2006, 09:58:10 am by Windsong »

 


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