Author Topic: Live and let live ?  (Read 5006 times)

tony

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Live and let live ?
« on: December 02, 2007, 08:30:14 am »
I now have a small collection of the spine tumours
- and they are also small - and no clear changes bodywise as a result
The NF2 Crew are shouting about as loud as is possible
- from 3,000 miles away
LEAVE THEM ALONE - sound advice I guess
(My first reaction was hit the tumours with about 500 rads
- and see who is still growing in 12 mths time - medically unsound apparently)
I just wondered how long our folks have been able to do this
- with no real change to the body as a consequence ?
Best Regards
Tony

Raven

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Re: Live and let live ?
« Reply #1 on: December 02, 2007, 09:33:19 am »
Hi Tony,

Thru an MRI a few months ago I found I had four small tumors and one slightly larger tumor on my spine. My Dr. said as long as I'm in no pain or discomfort, leave them alone. I'm all for that as I'm hoping I'm done with surgerys for a while, two midddle fossas in eight days is enough!

John
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

jerseygirl

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Re: Live and let live ?
« Reply #2 on: December 02, 2007, 09:51:40 am »
Tony,

I am so sorry that you have tumors in your spine! Hopefully, they will not give you any trouble and you won't have to do anything about them.

John, two middle fossas in a few days! That is too much! Were the surgeons able to save your hearing on any side?

                                          Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Raven

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Re: Live and let live ?
« Reply #3 on: December 02, 2007, 10:32:15 am »
Jerseygirl,

Removal of the AN on the left side was the plan all along as pretty much all of my usable hearing on that side was gone. Two days before that scheduled surgery the hearing on my right side went down enough that we called the Dr. They did a bone decompression on the right side a week later via the middle fossa approach. Removal of the AN on the right side (it is not quite 1cm) was not an option as it may have left me totally deaf. Right side hearing is not where it should be yet due to fluid in the ear. But on a positive note, the facial issues I had from the first surgery are all gone and both scars match perfectly.

John
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

jerseygirl

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Re: Live and let live ?
« Reply #4 on: December 02, 2007, 10:45:31 am »
John.

Best of luck to you and your loved ones! It is interesting that they used middle fossa to decompress one ear but not to remove AN. I did not know that before.

               Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Jeff

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Re: Live and let live ?
« Reply #5 on: December 02, 2007, 04:22:56 pm »
Hi Tony,
I have a rather extensive collection of tumors - 20 mentioned in previous MRI report. I have been advised by my docor to leave them be and that they may never be a problem. And, I hope that is true for you and I.
Jeff
NF2
multiple AN surgeries
last surgery June 08

Dealy

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Re: Live and let live ?
« Reply #6 on: December 02, 2007, 05:05:26 pm »
Tony-What next? I guess we NF2's are really always going to be on the edge because we never know what is going to hit us next. So sorry to hear about your Spinal Tumors-Dang. How are thing's going otherwise. I am coming up on my year and a half MRI  after FSR Radiation, I can tell me hearing is worse. Seems like every 2 too 3 months it drops. Will not know officially till the end of the month when I get the MRI and Hearing Test. I keep on telling my wife I am preparing myself for complete deafness-easy too say but not easy too face. Thinking of you and Best Regards from the States. OHHHH the lot of us NF'2ers. Thanks Ron

tony

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Re: Live and let live ?
« Reply #7 on: December 03, 2007, 01:39:05 am »
Thank you everyone
20 on the one spine ? my goodness - do we get a badge ? or a T-shirt ?
In many ways I am so recovered - people forget (as do I)
or simply dont know anything is wrong
- the poor smile is a giveaway - but even that should improve by Jan
Generally anyone with hearing that is slipping
might be well advised to go with the intensive
lipreading classes - it is much easier to learn
while you still have some hearing
-and makes better use of any limited hearing
you actually have (you will understand more)
Best Regards
Tony

Timjk

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Re: Live and let live ?
« Reply #8 on: December 03, 2007, 09:46:28 am »
I was diagnosed 25 years ago with Muscular Dystrophy.. Last November I had an MRI done on my lower spine for sciatic nerve pain. They found 3 large tumors at the L-6 and sacral area of my spinal cord.
NF2.. An MRI the next month for the rest of my spine and brain showed bilateral brain tumors plus smaller spinal tumors in the middle spine area. I have been in a wheelchair full time for 5 years. Believed to be from MD, when in fact it was caused by the lower spinal tumors.

I was 52 when this was discovered last year. My hearing is terrible in both ears. I had the right side brain tumor removed this past February. They were able to save what hearing I had in that ear plus no nerve damage.

  This is to Ron.. Take my advice and get involved learning sign language.. Find a support group.
I am member of ALDA ( Adult Late Deafened Association )... I have been studying sign for 5 months and am proud to say I am up to a 140 word vocabulary.. Do it while you can still hear !!!  prepare for the future...

Tim
Surgery Feb.7th at Moffitt,Tampa. Removed right side AN 3.3 CM plus Chiari Malformation decompression.Second surgery Feb.23rd Ventricle Periphirial Shunt to correct CSF leak.. NO HEARING LOSS.. NO HEADACHES... GOD IS GOOD !!!

Jeff

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Re: Live and let live ?
« Reply #9 on: December 03, 2007, 11:36:43 am »
  This is to Ron.. Take my advice and get involved learning sign language.. Find a support group.
I am member of ALDA ( Adult Late Deafened Association )... I have been studying sign for 5 months and am proud to say I am up to a 140 word vocabulary.. Do it while you can still hear !!!  prepare for the future...

Tim

Tim,
As one who is now deaf from NF2, I echo your advice. And I applaud your efforts to prepare. I hope that you never need to use sign, but it is a good idea to prepare. And, I agree, it is easier to do while you can still hear as opposed to after you cannot hear.
Best wishes to all,
Jeff
NF2
multiple AN surgeries
last surgery June 08

 


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