Author Topic: "Please Sir, May I have another?" [from Animal House]  (Read 9305 times)

TexasSprinter

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"Please Sir, May I have another?" [from Animal House]
« on: September 09, 2013, 10:00:25 pm »
It has been some time since my last visit to the forum.  I had middle fossa surgery last December to remove 11x10x17 AN called "Timmy the Tumor."  Because the facial nerve was splayed (stretched out) over the half of the tumor that was available from that angle, and because they didn't/couldn't realize that until they got into my thick skull, my (very good) surgeons got what they could of the tumor but elected to not proceed further, in order to preserve the facial nerve.  I had told them prior to surgery that preserving facial nerve function was very important if at all possible.  I chose middle fossa originally to attempt to preserve my remaining hearing in my right ear, but unfortunately I lost that hearing through the surgery.  (The good news is that I've saved lots of money on the stereo-surround-sound system I'll never have to purchase.)  My right-side face was paralyzed for 12 hours after the surgery but amazingly "snapped back" to normal function within that first day.  With no right-side hearing left to save and no immediate dangers given the tumor size, I decided to watch and wait, at least for a bit.  I've had 2 post-surgery MRIs and the tumor has not grown materially.  Unfortunately, the anxiety of (a) having Timmy the Tumor still in there, flipping me the bird, and (b) not knowing when the almost-certain surgery (I'm 43) would come, has been worse than I thought it might be.  After meeting with my surgeons today, and subject to family discussion/approval, I am going to schedule my surgery for a date in November or December.  The translab approach should give the surgeons a much better opportunity to get at the tumor, hopefully with no damage to the facial nerve.  I realize I'm bringing to a head the risk of facial paralysis that I could avoid by more watch and wait.  I'm nearly certain this is the direction I'm going but would appreciate any thoughts/comments.  Thanks!   

PaulW

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #1 on: September 10, 2013, 07:25:02 am »
Can I ask why you are choosing surgery over radiation for a relatively small tumour?
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!

CHD63

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #2 on: September 10, 2013, 07:29:36 am »
Hi TexasSprinter .....

Although my situation is not quite the same as yours, I have had two surgeries to remove my pesky, regrowing tumor.  My first surgery was done via retrosigmoid approach, preserving 20% of serviceable hearing.  I was told it had been "removed in toto" but unfortunately 3 years later it was 1.3 cm.  Therefore, I had a second surgery via translab approach.  The doctors explained to me that they like to go in from a different plane for repeat surgeries, in order to avoid as much scarring as possible.  And, of course as you know the translab approach gives the best view of the area, specifically the facial nerve.

I had no facial deficits after the first retrosigmoid surgery, although I had double vision for a couple of weeks.  I had only a very slight facial weakness following the translab, which resolved totally.  I will be forever grateful for the skill of the surgeons on the second surgery, who had to work through the scar tissue and yet preserve my facial nerve.

I fully understand your angst!  Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

TexasSprinter

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #3 on: September 10, 2013, 07:50:06 am »
Clarice:  Thanks for the kind words.  So glad to hear about your success after the 2 procedures.  Hope you continue to stay clear.
PaulW:  I gave all 3 options serious consideration.  One thing I worried about with radiation was the risk that if it didn't work, I would have a greater chance of hearing loss/facial nerve damage in a subsequent surgery due to the scar tissue.  Also, even though the risk by all accounts is incredibly small (and the worry a little irrational), I worried about the possibility that radiation would end the long run convert Timmy the Tumor into a malignant tumor.  Finally, I understood that surgery gave me the best long-term chance of hearing preservation, although that didn't work out.  I can see how somebody else in my position could choose any one of the 3 options.

Kathleen_Mc

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #4 on: September 11, 2013, 09:09:05 pm »
TexasSprinter:
I can understand your decision, I myself had a second surgery to remove a regrowth before it was medically necessary (they believe when they operated the first time they left a cell or two behind and the sucker regrew) because I could not stand it psychologically. Knowing the thing was in my head growing and that I could end up as compromised as I had the first time was driving me insane. I was offered gamma knife but did not take up on this as I wanted to know for sure it was done! (hopefully that's the end of that). I do home your surgery goes well and you've a speedy recovery. I remember you were concerned about having facial nerve damage, I didn't have the choice the first time around to tell the doctor to stop if this was going to happen and have facial damage, I have undergone multiple "plastic surgeries" to repair the damage caused by the loss of the 7th nerve, you could persue this post-op if there's an issue.
 Have you gotten a surgery date?
take care, Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

TexasSprinter

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #5 on: September 12, 2013, 08:53:24 pm »
Kathleen:  No surgery date yet--still waiting for the call from the surgery schedulers.  I hope your second surgery proves to be your last AN surgery. 

TexasSprinter

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #6 on: November 25, 2013, 10:23:36 pm »
I'm scheduled for my second surgery on Dec. 5. Was at the hospital for pre-surgery testing today. Sure brought back memories--even more vivid than usual, since I waited in the same waiting room that I waited in on the morning of my surgery almost one year ago. I've gone back and forth on this decision even since my last post but currently am planning to go forward. 

CHD63

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #7 on: November 26, 2013, 07:43:56 am »
Hi TexasSprinter .....

Glad you have a surgery date and can plan accordingly ..... you know the drill.   :) 

I looked back at some of your previous posts and see that you had considered the BAHA at one time.  You may be perfectly happy with the hearing aid system you have, but thought I would tell you I had the Oticon Medical Ponto Pro abutment implanted at the same time as my second surgery (translab).  I had to wait the required 90 days (think it is less now) before attaching the processor.  I love my Ponto ..... put it on first thing after a shower in the morning and basically do not think about it again until I get ready for bed.  No hearing system can alleviate our SSD issues in a noisy, crowded room, but the Ponto is the next best thing in almost every other situation.  Just wondered if you had ever discussed this with your surgeons.  Some doctors do not want to do it at the same time, but mine did and I had zero problems with it.

Many thoughts and prayers for your surgery next week!  Have someone let us know how it all goes.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

TexasSprinter

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #8 on: November 26, 2013, 09:37:48 pm »
Clarice--thanks for your prayers!  I still am not used to having the Cros hearing aid devices in the ears, so at some point I may still switch to a BAHA device.  There just have been too many other things going on to focus on that decision right now.  I'll just play it by ear (ha ha) after my surgery.

Scott

Kathleen_Mc

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #9 on: November 27, 2013, 01:16:20 am »
Texas: Will be thinking of youon the 5th of Dec., speedy recovery! (I found recovery a heck of a lot easier the second time around)
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

millie

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #10 on: December 01, 2013, 07:51:21 pm »
Hi Texas,
I have not posted a lot lately, but I just went on to report on my BAHA procedure, and I read your notes.  I understand your worries and concerns regarding paresis and hearing.  One day at a time.  Stay strong.  You can do it.  Mil

TexasSprinter

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #11 on: December 09, 2013, 11:06:15 am »
Hello. Surgery on Thursday lasted 8 hours but went very well. No facial nerve damage or any weakness at this point. They were able to get most all of the tumor this time. They left a tiny bit of tumor in because it was stuck to or near scar tissue from surgery last December and they didn't want to risk facial nerve. I'm very thankful for my excellent surgeons and for the caring nurses and all staff here at UTSW in Dallas. Might go home today or tomorrow.

Sandrawoody

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #12 on: December 09, 2013, 12:27:11 pm »
Hello Texas,
What fantastic news,such a daunting prospect to undertake surgery for a second time. l too, have regrowth after surgery from 2010, and facing the same dilemma as you , its a big decision to choose a treatment option. Onwards and upwards for your recovery. I look forward to hearing more of your progress.

Kathleen_Mc

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #13 on: December 11, 2013, 01:46:51 am »
glad all went well, take care
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

TexasSprinter

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Re: "Please Sir, May I have another?" [from Animal House]
« Reply #14 on: December 13, 2013, 10:41:00 pm »
Just wanted to say thanks to everybody on this string for your comments and thoughts and prayers. I came home Monday night (Dec. 9) and am taking it easy at home as best I can with four little monkeys running around. Thank goodness for my wife, who is doing double duty for me.