Re: PLEASE HELP.NF 2 Surgery at C-2 soon--

[Guest guest]

Hi Sandy,

Where will your surgery be done?

I'll keep you in my prayers.

Many Blessings,

O. in Ohio ~~<><~~

PLEASE HELP.NF 2 Surgery at C-2 soon--

Hi everyone,

I'm scheduled to have surgery on C-2 in about a month. I hear the pain and muscle spasms post op are horrible. Also,

I hear there is a fair chance of developing breathing problems or having paralysis. Has anyone had this surgery? Could you tell me what to expect? Where was your tumor? Was it stuck to the cord or freely taking up space. I would be most appreciate of any info you could provide. Presently, I'm having terrible nightmares about the whole thing.

Thanks,

Sandy

[Guest guest]

My wife had this same surgery 10 years ago with NO complications and minimal

pain. Contrary to what you have said, actually the risks of this surgery are

usually not as extensive as most . Pain is much more of a problem with spinal

surgeries of the thoracic (mid) and Lumbar (lower) sections of the back)

However, frequently because the upper cervical area is close to the brainstem

they usually take extra precaution of hemorrhaging and potential complications

from swelling, they will sometimes keep the patient in intensive care and handle

the early post-op more similar to brain surgeries. Because of this sometimes

the immediate post operative period is uncomfortable but not painful as they

keep your neck confined and limit your fluid intake so that you might get dry

mouth. At most that is only 2 days. Don't worry so much and good luck. If you

have these concerns discuss them with your doctor or his assistants. I am sure

they will tell you not only what they expect but also all possible risks.

Hope this helps!

>>> jsmg@... 11/07/02 02:47PM >>>

Hi everyone,

I'm scheduled to have surgery on C-2 in about a month. I hear the pain and

muscle spasms post op are horrible. Also,

I hear there is a fair chance of developing breathing problems or having

paralysis. Has anyone had this surgery? Could you tell me what to expect?

Where was your tumor? Was it stuck to the cord or freely taking up space.

I would be most appreciate of any info you could provide. Presently, I'm

having terrible nightmares about the whole thing.

Thanks,

Sandy

Re: for those who have tinnitus

We have that in common then. It lead to my first MRI and NF2 diagnosis,

too. I remember watching the " Little House on the Prairie " and when 's

older sis (I forget her name...) went deaf they would have her " experience "

being that she was living in silence and I thought that's what deafness

would be like. For me, it's very weird how my eye movement is hooked into

the tinnitus... and then the " volume " actually cranks up several notches

when I close my eyes. Maybe that's why falling asleep was so hard at first!

Hugs,

Darmcy@... wrote:

I hate to say this, but my husbands first symptom for NF2 was tennitus.

Since his surgery on the first tumor, he still has it, worse than ever, and

Dr.'s told him it's a learned behavior from the brain. There are devices

you can " wear " that teaches your brain a new sound. Hard to imagine one can

be deaf in the ear, and still have this unbearable ringing. :-(

[Guest guest]

Sandy, what size is the tumor and why dr feel it should come out? do you

have or have you had the acoustic neuromas? are you deaf? any other tumors?

anyyyy weakness at all now? thx.

cindy

Barbara wrote:

Sandy,

Crew, I felt so bad

when I read what you had been told about the surgery and so very glad and

relieved when I read 's reply. To me it is amazing how it is

possible to adjust to some of the most extreme, weird, not so desireable

situations that we can encounter post surgically and while in a hospital.

(eg. I woke up from acoustic neuroma surgery with a fully bandaged head,

unable to walk unassisted at first. That's weird but I just got used

to dealing with brand new situations!) One moment at a time Sandy. I certainly

hope it can be no where near as bad as you were thinking! Barbara

B.

[Guest guest]

You are an inspiration! i only hope it's not too bad. How are you today. My mom, na sa very bad AN that is making gher dizzy all the time. Off to AIndiana to see the sandhill craNES THIS WEEKEND. sorry, I'll write more mon.

Blessings to you and yours,

Sandy

PLEASE HELP.NF 2 Surgery at C-2 soon--

Sandy, Crew,

I felt so bad when I read what you had been told about the surgery and so very glad and relieved when I read 's reply. To me it is amazing how it is possible to adjust to some of the most extreme, weird, not so desireable situations that we can encounter post surgically and while in a hospital. (eg. I woke up from acoustic neuroma surgery with a fully bandaged head, unable to walk unassisted at first. That's weird but I just got used to dealing with brand new situations!) One moment at a time Sandy. I certainly hope it can be no where near as bad as you were thinking!

Barbara B.

[Guest guest]

Hi Sandy, I hope you're enjoying (or enjoyed) your weekend. The little

bit I remember about my experience is being restrained and once I was "with

it," I remember being comfortable because I somewhat expected the tube--and

because my Mom was there to make sure everything was alright.

(we had already been through a lot before then...) I really don't

remember much of the time with having the tube in. (I think I was

exhausted from surgery--one of those where people came into ICU to visit

me and I'd fall asleep while they were there even though I didn't mean

to--I know, I know, we're ~supposed~ to rest! lol...) A very

vivid memory for me was when they removed the tube... I remember lying

there and, for what seemed like forever, after they yanked out the tube,

my mind was instructing my body to breathe, but it wasn't breathing.

Really wild--I was looking around at the nurses and they didn't seem concerned

at all (of course they probably knew I would breathe eventually).

My mind was screaming to them to do something, and I wondered if they could

read what I was really thinking by the look in my eyes. I did start

breathing again. (I was told before they removed the tube,

that they were monitoring how much work my lungs were doing on their own...)

The best thing following that surgery was probably the greatest tingle

I'd get just taking a deep breath... like walking down the sidewalk or

anywhere in "ordinary" everyday life.

Really, though, and I think it goes after all of our surgeries, it is

worth having some alternative communication modes (and backups) ready going

into surgery. Even just knowing what's going on in a general sense

makes a big difference when we're in such a vulnerable state. There

are lots of people with various suggestions for communication post-op,

so feel free to start that thread if you're interested. Take

Care,

"J. Muirhead-Gould" wrote:

Thanks

a lot, . That's great advice. Breathing tube while awake

has always been a great fear of mine--having the breathing tube in when

you wake up. I think I would gag! How was it for you?You

helped me,Sandy

[Guest guest]

Hello Sandy

Yes, I had a C2 tumour. The operation ended up being C1-C3 because of the tumour size. It was an Ependymoma, inside the spinal cord, attached to the nerves.

My surgeon made it very clear how risky the surgery was. But Sandy, have you ever had surgery or preparation for surgery, when the worse case scenario wasn't explained to you.

Like you, I was terrified.

Most surgeries have some degree of pain and neck surgery is no different, but hey, there are drugs to help. Hospitals and Drs do not let you suffer unnecessarily. Tell them if you can't cope. Remember no two people are the same and what one suffers, may not necessarily be your result.

My Prof organised a Pain Management Specialist to see me daily in Hospital.

Also a thought, without my surgery I wouldn't be here writing this e-mail to you

When I was panicking about the surgery, I asked the Crew and got some very positive replies from people who had or knew of people who had this type of surgery, hence my confidence in my Dr, once the decision had been made. He had only done this surgery twice before.

Try to accept that your Dr wouldn't attempt to do such risky surgery without the experience and knowledge. If the decision has been made to operate, it's because it is necessary.

Sandy, I have a little dog I walk her twice a day. I do exercises to keep the muscle tone in my legs and love to garden. Life is pretty good.

My blessing and prayers are with you Sandy............ Try not to worry........ Think about all the lovely flowers, chocolates and friends that come with hospital stays.

Regards

ine from OZ

ps....... Don't forget, phone your Dr if you still have any questions or last minute worries.

PLEASE HELP.NF 2 Surgery at C-2 soon--

Hi everyone,

I'm scheduled to have surgery on C-2 in about a month

[Guest guest]

Hi Sandy,

I'm just a little south to you. I live in New Philadelphia, My husband works on the south side of Canton.

I have had 4 surgeries for NF2. I was diagnosed in 2000.

I have had both vestibular schwananomas (sp?) or accoustic neuromas removed.

I have had a meningioma removed from the top of my head and I have had a lumbar shunt put in.

Has your surgery date been decided?

I suffer from tinnitus too. Caffeine has never seemed to bother me. I do know if I am tired or stressed it is worse. Also when my sinuses are messed up the volume is louder. Sex doesn't bother it for me:)

Please keep me updated.

RE: PLEASE HELP.NF 2 Surgery at C-2 soon--

Hi ,

Cleveland Clinic. The whole thing makes me sick. I from Canton, Ohio. Have you had surgery for NF?

Thanks, and blessings to you too,

Sandy

[Guest guest]

Hi ,

[

Wow, how are you today? Where were your surgeries done? Know anyone who has had a C-2 surgery to remove a tumor?

Did you have morphine after surgery? How did you feel. My mom has an AN.

Thanks,

Sandy

-----Original Message-----From: & Larry Orr Sent: Friday, November 08, 2002 3:07 PMTo: NF2_Crew Subject: Re: PLEASE HELP.NF 2 Surgery at C-2 soon--

Hi Sandy,

I'm just a little south to you. I live in New Philadelphia, My husband works on the south side of Canton.

I have had 4 surgeries for NF2. I was diagnosed in 2000.

I have had both vestibular schwananomas (sp?) or accoustic neuromas removed.

I have had a meningioma removed from the top of my head and I have had a lumbar shunt put in.

Has your surgery date been decided?

I suffer from tinnitus too. Caffeine has never seemed to bother me. I do know if I am tired or stressed it is worse. Also when my sinuses are messed up the volume is louder. Sex doesn't bother it for me:)

Please keep me updated.

RE: PLEASE HELP.NF 2 Surgery at C-2 soon--

Hi ,

Cleveland Clinic. The whole thing makes me sick. I from Canton, Ohio. Have you had surgery for NF?

Thanks, and blessings to you too,

Sandy

[Guest guest]

Hi Carol,

Thanks for the info. How much did you recover? any effects of surgery?

Thanks,

Sandy

-----Original Message-----From: CarolW Sent: Thursday, November 07, 2002 5:15 PMTo: NF2_Crew Subject: Re: PLEASE HELP.NF 2 Surgery at C-2 soon--

I know hospitals and doctors are different. I haven't had spinal surgery, but when I had my AN out I was in ICU and under meds for 2 days. By the time I was alert I had very minimual pain.

Prayers are with you Sandy.

Carol