ANA Discussion Forum
General Category => AN Issues => Topic started by: neuroma_racer on April 11, 2010, 11:56:02 am
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Out of step-down unit, off of telemetry
walking more, eating, hardly using any darvocet for discomfort
developed a small left sided CSF rhinorrhea leak (<1cc total) none since then
starting some diamox to slow csf production and lessen pressure while things finish sealing
this will probably push discharge from Monday to Tuesday to monitor for any additional leaks
feeling good
no nausea no vertigo
still feel a lot of fluid in left ear
very veryhappy with all aspects, team, decisions, staff, and hosiptal
aces,
Jesse
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Jesse ~
Thanks for the updates. We're delighted to learn that you're doing great ! I'm sure you'll do even better once you're at home. :)
Jim
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Jesse,
Great News, best wishes and good luck with your recovery.
LisaP ;D
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Jesse -
just realized from reading your profile that you had a facial neuroma as opposed to an acoustic neuroma.
Did your docs think this might be a possibility going into the surgery? or was it a surprise to them?
Just curious,
Jan
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Didn't know it was a facial neuroma till they got in there
Excised a small amount of it, and unroofed the canal, so it has room to grow if it needs to.
Facial neuromas groom more slowly than acoustics,
So come 10 -15 - 20 or more years from now, i may need another operation, in which they can splice in a bit of nerve from elsewhere,
have a brief weakness, while the neural circuits reestablish themselves, and then have pretty good facial muscle recovery.
Thanks god i didn't nuke it, or the remnants would have been so scarred down that a neural repair would be very difficult, and less promising,
And since it would have been the facial nerve itself that got gamma knifed, i would have almost certainly had a VI/VI facial weakness for years or even the rest of my life.
Mcelveen says that in his experience about 1 in 200 neuromas turn out ot be facial in origin, instead of vestibular/acoustic
I am so very very grateful to God, the team, and everyone that has been praying for me.
Hearing intact,
Balance intact
Facial expression 98% intact
No headache
Hopefully home tomorrow if csf leak remains stopped.
Far better outcome than i expected.
Thanks to everyone for your notes, thoughts, and prayers,
This forum has been a big help going through all this.
Aces,
Jesse
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Jesse, I wonder if NF2s would have faster growing facial neuromas than regular neuromas. I am NF2 and mine grew from a maybe something spot to 2 cm in a year. But I am not the typical ANer so don't let it scare you. Mine was all removed but nerve severed and a aural nerve graft in at the same time with some movement back. I look ok at rest. I also was so glad to not have had radiation with no 1 AN as this was no 2. One just never knows with all this. Mine was questioned if maybe was facial as had some drooping started maybe a month pre op.
Just hope your recovery keeps going well. Cheryl R
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Hi Jesse,
I too have a facial neuroma. I had a translab and the tumour was debulked. A piece of bone from the canal was cut away to allow for growth. My ear drum was destroyed along with the three bones in my middle ear. I too will need a nerve graft at some point in time. I have some facial weakening that is noticeable when I am tired or in pain. I'm one of the lucky ones who suffer from headaches and facial pain. I also have balance issues.
I was also told by two radio-neurosurgeons any type of radiation was not an option.
You are doing great!
Anne Marie
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Cleared for take off
heading home
no more csf leakage , but will e on diamox fr like two weeks to keep the presure dwon while things keep sealing up
really could sleep last night , even despite the ambien
can't wait to get off of the steroids
now praying for slow to no growth of the dacial neuroma
aces
thanks all
Jesse
due for a check up 4/21, when they come t Greenville
will update then
j
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Hi Jesse,
Glad to hear that everything is going well. You'll feel much better being at home and sleeping in your own bed. Please keep us posted on your progress. Sending prayers for a speedy recovery! Ann
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Enjoy being home and sleeping in your own bed! That will probably help you to sleep somewhat better, although the steroids will still keep you revved up for awhile. Still, nothing like being home - own bed, own pillows, no weird hospital noises.
Rest well!
Debbi
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Ah, know you will be so glad to be home! And, I hear you about the steroids - they do the trick, but they are no fun to be on...take it easy still for awhile. Thanks for the updates. I may be heading to Greenville in a few weeks to visit my mom...we'll have to meet up by the suspension bridge downtown or something!
Cindy
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Jesse,
It is so wonderful to hear how well you are doing. Best wishes for the remainder of your recovery!
Kim
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Jesse,
I am very late in learning about you. I haven't been on much in the last few months due to personal issues. It sounds like you are doing very well and I hope your recovery is a smooth, uncomplicated one. For now, get lots of rest and keep us updated on how you are doing when you feel up to it.
Best wishes,
Wendy
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Jesse,
Best wishes on the continuing recovery. You'll be back behind the wheel and hitting the banking in no time.
Regards,
Rob
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Hi Jesse,
Great updates. It looks like you are geting better every day. I am very happy for you.
Vivian