Author Topic: Regrowth ?'s  (Read 2850 times)

48_Below

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Regrowth ?'s
« on: May 01, 2008, 05:15:43 pm »
Hi Everyone

I believe i was a member here a few years back, but a new computer and basically no change in my condition. (no tearing in left eye, deaf left side, partial facial paralysis, constant tinitus) and a new one occasional left nostril bleeding noses. Well i just got back my 4rth year MRI results and my friend is back. My tumor was quite large before it was removed, the brain stem was compressed quite a bit. Surgeon said he got over 90% of it. Subsequent MRI's showed all was well with the exception of the above mentioned after affects.  Just some feedback please. If there was nothing showing for the 1st 4 years why now even though he said there was about 10% left. Although I dont meet the surgeon until the 15th would Gamma Knife be an option or ?. Now im worried again. I WAS 4 weeks away from doing the Kilimanjaro trek, but I guess thats a done deal. I dont even know why Im posting this. Just want to talk I guess with those that unfortunatly have or are going through the same thing. Any replies are appreciated. Good Luck to all. Im in Winnipeg so Gamma Knife may be offered.

Palace

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Re: Regrowth ?'s
« Reply #1 on: May 01, 2008, 05:40:55 pm »
Hello 48 Below,


What are the measurements of what you have "going on" now?  (and what was the measurement upon first diagnosis in the very beginning?)  As you probably know, about 25mm is about the most in size where CK or GK are an option.  As you also must know by now, CK and GK make the tumor sticky.  (more difficult for a surgeon at any later date as an option although, I've heard controversy on whether surgeons find it that hard to remove once sticky from the CK or GK)  Cyberknife made me tired for one year however, I'm pleased so far with the results.  (but, I didn't have any other procedure in that area, before)

Welcome and there are plenty of people here to talk with you who know more than I do about your prior experience.

Thank you for coming on the forum.......



Palace
« Last Edit: May 01, 2008, 05:48:42 pm by Palace »
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

Jim Scott

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Re: Regrowth ?'s
« Reply #2 on: May 01, 2008, 05:49:25 pm »
Hi, 48:

I'm very sorry to learn of your re-growth.  This is something we all dread but but a risk we all have to face, whether we have surgery or radiation to attack an acoustic neuroma.  Even if only a tiny bit of the AN remains, it's cells can eventually multiply, which means growth.  That it took four years to see this growth is not unusual.  AN's are famous for being slow-growing. 

Gamma Knife might well be an option for you, depending on the exact location and size of the 'new' AN.  This is a decision you'll have to make in consultation with your doctor.  Same with the planned trip to Kilimanjaro.  It may be still be feasible - but perhaps not.  Ask.

I pray your AN can be effectively treated and destroyed for good this time, as I believe it will be.  Try to remain positive.

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.

48_Below

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Re: Regrowth ?'s
« Reply #3 on: May 01, 2008, 07:10:29 pm »
Hi
thanks for the replies
i just talked with the surgeons clinic nurse thus far (i think they know more about this stuff then the people that do the cutting) she said that the tumor has enlarged  according to the radiologist who looked at the scans. she set up an appointment for me to see the surgeon on his first day back which is the 15th of this month. i dont want to whine but what i had to go through (over a year my eye did not blink) and what i go through every day from the previous episode i dreaded hearing (1 ear lol) that it has started to grow back. i just want this thing gone, whatever it takes. i climb mountains for a hobby and was never scared or concerned, even in glacier fields full of crevasses. its when something is out of your control, at least for the most part that it scares you. my fate will be in the hands of the dr's and there skills and knowledge. Thanks for the kind words, i hope i can sleep the next 2 weeks.
Palace. im not sure of the size at this time. prior to surgery all i know is that it was huge. dr said i should have died on the table. im thinking this would have been due to the brain stem being compressed and tumor removal might have caused a stroke. weeks prior to  surgery i couldnt walk a straight line. initially my symptoms went from bad to worse over just a couple months.

sgerrard

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Re: Regrowth ?'s
« Reply #4 on: May 01, 2008, 08:26:28 pm »
Hi 48 Below,

If 10% was left, it would be a pretty small bit, maybe 5 mm in size. If it is growing again now, it is probably still only 10 mm or less in size. It is also most likely that the bit left behind was in or near the canal, or IAC, meaning it may not be near the brainstem at all. That makes radiation treatment a real possibility. I hope your doctor discusses that option with you, or that you seek out an experienced radiation oncologist for an opinion on that kind of treatment. Given your first experience with surgery, it seems like considering radiation this time would make good sense.

I don't see why you can go take a hike up a mountain, there should be no urgency this time. It has taken 4 years to come back, and is almost certainly much smaller this time. Waiting 6 weeks should make no difference, and it would get you in good shape and good spirits as well.

Best wishes, and let us know what you find out,

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

48_Below

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Re: Regrowth ?'s
« Reply #5 on: May 02, 2008, 06:09:14 pm »
hi steve

thanks for the reply
although my dr was excellent i never got to much in the way of info out of him. or maybe he did and i just wasnt listening. only 1 ear ya know. i seem to recall that it was growing quite close to the brain stem and it had pushed it in big time. if the tumor is close to the brain stem would that preclude me from getting gamma knife treatment. this 2 week period is going to kill me. but maybe what he tells me will be worse

sgerrard

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Re: Regrowth ?'s
« Reply #6 on: May 02, 2008, 08:14:17 pm »
If it is just nearby, closeness to the brainstem doesn't rule out Gamma Knife. If it is actually pushing it in again, that might. But to me that seems unlikely for a regrowth from a small piece left behind. It is more likely still pretty small this time, and not denting the brainstem at all.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

48_Below

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Re: Regrowth ?'s
« Reply #7 on: May 02, 2008, 09:32:04 pm »
hi steve

thanks

ill find out more when i see the surgeon. im sure its not pressing on the stem at this time