Author Topic: Can't decide to treat or wait  (Read 3111 times)

Trippy

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Can't decide to treat or wait
« on: October 02, 2013, 01:11:10 pm »
My tumor is small but my symptoms increased within 2 months of diagnosis.  So that urged me to do more research, and boy has it been exhausting.  At the moment I am leaning toward CK because of the seemingly lower risk.  My hearing is still great and I want a chance at preserving that.

Problem is although my tumor at diagnosis was only 3mm (I hope it hasn't grown since then) it is quite near to the cochlea, which from what I understand reduces your chances at hearing preservation.  I also had a second hearing loss episode only a month after my first.  I feel like my tumor is riding on some kind of thin line between good hearing and minor tinnitus and bad hearing with loud tinnitus.

If the tumor swells after radiation I could be screwed...If I wait to long and my tumor grows I can still lose my hearing and lose the advantage of a small tumor.  I can't figure out whats best... Has anyone been in a similar position?

MDemisay

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Re: Can't decide to treat or wait
« Reply #1 on: October 02, 2013, 08:19:27 pm »
Dear Foolthrottle,

I wish I had had a small tumor to irradiate...problem is I waited too darn long and I was forced to operate by the time Irving was discovered(it was 3.1 cm) I had been ignoring symptoms like multiple falls and broken limbs! I thought I was going deaf from attending too many rock concerts! I guess my point is, if I had it all to do again, I wouldn't wait to lose my hearing and have an operation because with an operation I lost my vestibular (balance nerve) as well the neurosurgeon had to cut that. As a result of my imbalance, I now walk with a cane and had to do months of outpatient balance therapy.

Whatever you do, act fast, surely you don't want to have surgery if it can be helped. You should research your options and then go with the least invasive in my opinion. There are others who will give their opinions as well. I shall be praying for you whatever you decide with your physician.

Peace,

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

PaulW

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Re: Can't decide to treat or wait
« Reply #2 on: October 04, 2013, 03:41:33 pm »
My tumour was relatively small at 10mm and was also close to the cochlear.
Swelling does not mean hearing loss.. The reason the tumour swells is that as the cells begin to die they lose their ability to control the amount of water within the cell.
Eventually the cell wall ruptures, the cell dies.
So think of your tumour now as a dry hard sponge, and a radiated swollen tumour as a wet sponge.

Some interesting papers worth reading here!

http://www.ncbi.nlm.nih.gov/pubmed/22937934
http://www.ncbi.nlm.nih.gov/pubmed/21121792
http://www.ncbi.nlm.nih.gov/pubmed/22682708

3 years later after initial hearing loss, and two bouts of sudden hearing loss after Cyberknife, my hearing has recovered and remains in the normal range, and is better than pre treatment.
Tinnitus is also gone.

I did decide to get my tumour treated proactively, accepting that it may lead to a potentially worse outcome.

Everyday after Cyberknife, when my symptoms got worse, at least I knew I was on the road to recovery. I really disliked the uncertainty of waking up every day in  W&W and noticing the hearing was a bit worse, the tinnitus was a bit louder and my head seemed to have more cotton wool in it.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

arizonajack

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Re: Can't decide to treat or wait
« Reply #3 on: October 04, 2013, 06:16:24 pm »

If the tumor swells after radiation I could be screwed...If I wait to long and my tumor grows I can still lose my hearing and lose the advantage of a small tumor.  I can't figure out whats best... Has anyone been in a similar position?

If your hearing is great, don't wait.

When your hearing is gone, waiting does no harm.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

It is what it is

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Re: Can't decide to treat or wait
« Reply #4 on: October 04, 2013, 10:59:25 pm »
These decisions are sure not easy. My tumor was small but I didn't want to take a chance of losing my hearing, so I had surgery within months of the diagnosis.  I am over a year out from surgery and I have balance back and my hearing was preserved. 

Please let us know your ultimate decision.  Wishing great things for you.  Karen 
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

sandyinwisconsin

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Re: Can't decide to treat or wait
« Reply #5 on: October 06, 2013, 06:15:08 pm »
I am in the same boat as you.  I have a 1 cm tumor and first thought I could handle surgery, but then got really scared.  I was against radiation and first, but the more I read, the more tempting it is.

I'm 44 - How old are you? 

Sandy
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

Trippy

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Re: Can't decide to treat or wait
« Reply #6 on: October 07, 2013, 12:47:44 pm »
Sigh...this is quite the dilemma.  I can try to take a risk at saving my hearing now at the risk of more immediate hearing loss... or try to enjoy the hearing I have for as long as I can.  Sandy I know how you feel, the potential complications of surgery are concerning, but so are the long term possibilities of radiosurgery.  I'm only 30 and this situation is just killing me... :(  I haven't been able to feel normal since my increase in symptoms, can't stop worrying, just totally consumed by this thing.
« Last Edit: October 07, 2013, 01:07:28 pm by foolthrottle »

ANSydney

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Re: Can't decide to treat or wait
« Reply #7 on: November 05, 2017, 05:38:21 pm »
Trippy, it's been over 4 years since your post. I'd be very interested on how things have progressed.