Re: Face & Head Pain

[Guest guest]

Wow na, I am really sorry to hear of this! I

have not had such pain, but I would guess the

tumor is disturbing some nerve. Tumors may not

show noticeable growth on tests, but yet sometimes

sensations are different. I also think I heard

something once about their consistency changing

vs. growth, but not sure of that; Sure hope

someone more knowledgeable than me gives you some

answers. Marie

Brad and na Finch wrote:

> Part 1.1 Type: Plain Text (text/plain)

> Encoding: quoted-printable

[Guest guest]

Thanks, Marie. I guess I'm out of luck. My neurosurgeon in Dallas told me

to find a GP here to prescribe narcotics. Sigh... I just had my MRI 2 weeks

ago and I guess he's saying there's nothing we can do but medicate.

na

Re: Face & Head Pain

> Wow na, I am really sorry to hear of this! I

> have not had such pain, but I would guess the

> tumor is disturbing some nerve. Tumors may not

> show noticeable growth on tests, but yet sometimes

> sensations are different. I also think I heard

> something once about their consistency changing

> vs. growth, but not sure of that; Sure hope

> someone more knowledgeable than me gives you some

> answers. Marie

>

> Brad and na Finch wrote:

>

> > Part 1.1 Type: Plain Text (text/plain)

> > Encoding: quoted-printable

>

>

>

>

>

[Guest guest]

Those are some good (and interesting) suggestions. I have been constipated, but I thought it was from the darvocet pills I was taking (which I started taking after the pain began of course.) Hmmm.... I was thinking about blood vessels constricting.... I guess my neurosurgeon is not going to be of any help. Should I go to a GP or a pain clinic??

na

RE: Face & Head Pain

Question: Are you constipated at all ?

I have had the type of pain your talking about. When you lay down it gets worse. I had to sleep sitting up. was taking Morphine suppositories because the pain was so bad I was throwing up

If you are constipated the toxins build up in your body and they pool in your head when you lay down. This will be excruciating. Drink lots of water and get an enema. Take some Bisacodyl (Over the counter laxative)

If your are not constipated there are two other reasons I can think of why it hurts worse when you lay down. Both have to do with blood. When you lay down the blood will pool in your head, The other thing it could be is the heat. that will cause swelling. when you lay down and cover with a blanket your body will warm and the scar tissue around the tumor and blood vesicles will start to hurt. In both cases taking an anti inflammatory like Ibroprophen (Advil or Motrin) will help a little

Remember: there are no nerve endings inside the brain. so, the tumor itself will not hurt. Only the brain lining and blood vesicles hurt.

Hi Crew,

I have a 3.2 x 2.7 cm regrowth on the left side. I recently had an MRI and it showed no growth from the last scan 6 months ago. Yay! That was June 14th. Friday night, I was awakened by horrible pain on the right side of my face and head. I was finally able to go back to sleep and was ok Saturday. Then Sunday, about 2 hours after I crashed, the pain awakened me again! I sat up for a while and took some tylenol, but it hurt so bad... I got Brad (my husband) to take me to the emergency room. What a mistake! We were there 6 hours! I've never seen a doctor there before and I just needed something stronger than tylenol so I could sleep, but after they found out I have brain tumors... Brad said they were just trying to make a case study out of me. We were there from midnight to 6 am. They thought they should do a catscan and since this was NEW pain for me, I went ahead with it (I guess it didn't show anything except that I have tumors (duh).) Then they just gave me a couple of shots before I went home. No prescription or anything. Two hours after I got home and hit the sack, the pain started again. It doesn't happen when I am in an upright position, only when I'm sleeping or lying down. Yesterday morning, I was so desperate for relief, I called my cousin to bring over some darvocet she had from a while back. It helped and I layed down again, only to be awakened by the pain. My husband called my neurosurgeon in Dallas (300 miles away) and could only get the dr in his office (it was sunday.) He didn't want to prescribe anything over the phone without seeing me. I emailed my doctor, but he didn't have anything helpful to say.

Has anyone else had this type of pain? What were the circumstances around it. What did you take for the pain?

Thanks... this has been so hard because I work and I'm ok during the day, but the nights are hell. Its hard to get rest so I can go to work. Any helpful advice?

Thanks... na

[Guest guest]

I know, , but Lazar isn't any help at all. He recommended I go to a

GP here for a narcotics prescription. If I make an appt with a neurologist

here, it'll take weeks to get in. I can understand what you mean about

going to someone local... I will never go back to the Midland Memorial

Hospital unless I'm bleeding or unconscious. I'm hoping I don't have a

problem tonight. Keep fingers crossed. Hopefully this is just an NF2 thing

that comes... and goes.

na

Re: Face & Head Pain

> Hey na,

>

> If it were me, I would go to my neurosurgeon in

> Dallas. No doctor in Odessa/Midland will have the

> requisite expertise in NF2 to deal with you. Plus, my

> family has had some BAD experiences with devastating

> consequences with the idiots at Odessa Regional

> Hospital.

>

> Today's Monday- maybe try to call the Dallas doc.

> again.

>

> Hope it works out!

>

>

>

>

> --- Brad and na Finch

> wrote:

> > Hi Crew,

> >

> > I have a 3.2 x 2.7 cm regrowth on the left side. I

> > recently had an MRI and it showed no growth from the

> > last scan 6 months ago. Yay! That was June 14th.

> > Friday night, I was awakened by horrible pain on

> > the right side of my face and head. I was finally

> > able to go back to sleep and was ok Saturday. Then

> > Sunday, about 2 hours after I crashed, the pain

> > awakened me again! I sat up for a while and took

> > some tylenol, but it hurt so bad... I got Brad (my

> > husband) to take me to the emergency room. What a

> > mistake! We were there 6 hours! I've never seen a

> > doctor there before and I just needed something

> > stronger than tylenol so I could sleep, but after

> > they found out I have brain tumors... Brad said they

> > were just trying to make a case study out of me. We

> > were there from midnight to 6 am. They thought they

> > should do a catscan and since this was NEW pain for

> > me, I went ahead with it (I guess it didn't show

> > anything except that I have tumors (duh).) Then

> > they just gave me a couple of shots before I went

> > home. No prescription or anything. Two hours after

> > I got home and hit the sack, the pain started again.

> > It doesn't happen when I am in an upright position,

> > only when I'm sleeping or lying down. Yesterday

> > morning, I was so desperate for relief, I called my

> > cousin to bring over some darvocet she had from a

> > while back. It helped and I layed down again, only

> > to be awakened by the pain. My husband called my

> > neurosurgeon in Dallas (300 miles away) and could

> > only get the dr in his office (it was sunday.) He

> > didn't want to prescribe anything over the phone

> > without seeing me. I emailed my doctor, but he

> > didn't have anything helpful to say.

> >

> > Has anyone else had this type of pain? What were

> > the circumstances around it. What did you take for

> > the pain?

> >

> > Thanks... this has been so hard because I work and

> > I'm ok during the day, but the nights are hell. Its

> > hard to get rest so I can go to work. Any helpful

> > advice?

> >

> > Thanks... na

> >

>

>

> __________________________________________________

>

[Guest guest]

Hmm just thought I'd add a little. I think Marie is on the right track. Even if it hasn't grown it could start irritating nerves. They're all over the place so (nerves). That's pretty much what we think is happening in my spine. The tumors aren't big enough or havent grown enough to do anything, but shit the pain is still there. Also, I had "face pain" too. It actually came from behind my right eye and into the side like my hairline. When it first started it only bothered me when I was falling asleep. The same deal about waking up in pain, then if I sat up for a while or walked around...vertical in someway, I was fine. (Later on it bothered me while I was awake too) I've had a few diff drs tell me it's neurolgia. That's a nerve injury. So it could have been from surgery, but you know how delicate nerves can be. They put me on Neurontin (there's a few other ones for this too, basically they said a lot of seizure meds out there work for this). I tried 2 other meds but was allergic to both. Neurontins the only one that helps at all. If I miss a dose now I KNOW right away, the pain will start easing in. Anyways if u have any questions about any of this stuff feel free to write me.

[Guest guest]

na

You say the pain only happens when you lay down, I have a big wedge pillow that elevates my head about a foot and a half. I use it for reading but it might help prevent the pain.

Jeffro!

-----Original Message-----From: Brad and na Finch Sent: Monday, July 02, 2001 11:20 AMTo: NF2_Crew Subject: Face & Head Pain

Thanks... this has been so hard because I work and I'm ok during the day, but the nights are hell. Its hard to get rest so I can go to work. Any helpful advice?

Thanks... na

[Guest guest]

you are right michelle. tumors dont have to grow to cause symptoms. thats what

happened withmy c5 tumor and now lumbar, neithergrew at all, but i lost my

right hand and now lower back pain. Its time for it to go. im grateful i never

had face pain from the AN's. na, it may cease after a while, hang in there.

Hmm just thought I'd add a little. I think Marie is on the right track. Even

> if it hasn't grown it could start irritating nerves. They're all over the

> place so (nerves). That's pretty much what we think is happening in my spine.

> The tumors aren't big enough or havent grown enough to do anything, but shit

> the pain is still there.

> Also, I had " face pain " too. It actually came from behind my right eye and

> into the side like my hairline. When it first started it only bothered me

> when I was falling asleep. The same deal about waking up in pain, then if I

> sat up for a while or walked around...vertical in someway, I was fine. (Later

> on it bothered me while I was awake too) I've had a few diff drs tell me it's

> neurolgia. That's a nerve injury. So it could have been from surgery, but you

> know how delicate nerves can be. They put me on Neurontin (there's a few

> other ones for this too, basically they said a lot of seizure meds out there

> work for this). I tried 2 other meds but was allergic to both. Neurontins the

> only one that helps at all. If I miss a dose now I KNOW right away, the pain

> will start easing in.

> Anyways if u have any questions about any of this stuff feel free to write

> me.

>

>

[Guest guest]

Hi and ...

I'm sitting here waiting for 8:30 to roll around so my husband can take me

to a pain management clinic. I've never been to one before, but this has

got to be the place to go. I didn't sleep much at all last night. Just

when I was getting tired and close to bedtime, the pain in my face and down

my neck kicked in and I knew it would be a long night. I slept in every

position imaginable and nothing helped. I can't help but thing (HOPE) that

this is a passing NF2 thing, but I can't deal with nights like this for

long. I am wasted this morning. I got up so many times last night and have

taken a total of 2 darvocet and 6 Advil. Now I'm constipated from the

darvocet, which doesn't make matters anymore pleasant. , I really

appreciate you sharing your experiences with me. I'm so glad to know others

have dealt with this. You too, . Its 8:30 and I'm gonna go roust my

husband ... oh he's up. I'm outta here.

THANKS!!

na

Re: Face & Head Pain

> you are right michelle. tumors dont have to grow to cause symptoms. thats

what

> happened withmy c5 tumor and now lumbar, neithergrew at all, but i lost my

> right hand and now lower back pain. Its time for it to go. im grateful i

never

> had face pain from the AN's. na, it may cease after a while, hang in

there.

>

>

>

> Hmm just thought I'd add a little. I think Marie is on the right track.

Even

> > if it hasn't grown it could start irritating nerves. They're all over

the

> > place so (nerves). That's pretty much what we think is happening in my

spine.

> > The tumors aren't big enough or havent grown enough to do anything, but

shit

> > the pain is still there.

> > Also, I had " face pain " too. It actually came from behind my right eye

and

> > into the side like my hairline. When it first started it only bothered

me

> > when I was falling asleep. The same deal about waking up in pain, then

if I

> > sat up for a while or walked around...vertical in someway, I was fine.

(Later

> > on it bothered me while I was awake too) I've had a few diff drs tell me

it's

> > neurolgia. That's a nerve injury. So it could have been from surgery,

but you

> > know how delicate nerves can be. They put me on Neurontin (there's a few

> > other ones for this too, basically they said a lot of seizure meds out

there

> > work for this). I tried 2 other meds but was allergic to both.

Neurontins the

> > only one that helps at all. If I miss a dose now I KNOW right away, the

pain

> > will start easing in.

> > Anyways if u have any questions about any of this stuff feel free to

write

> > me.

> >

> >

>

>

>

>

>

>

>

>

[Guest guest]

Thanks for the suggestions, Bob. I will certainly try this when I'm awake

in the middle of the night with a headache. I'll try anything!

na

Re: Face & Head Pain

>

>

> > Wow na, I am really sorry to hear of this! I

> > have not had such pain, but I would guess the

> > tumor is disturbing some nerve. Tumors may not

> > show noticeable growth on tests, but yet sometimes

> > sensations are different. I also think I heard

> > something once about their consistency changing

> > vs. growth, but not sure of that; Sure hope

> > someone more knowledgeable than me gives you some

> > answers. Marie

> >

> > Brad and na Finch wrote:

> >

> > > Part 1.1 Type: Plain Text (text/plain)

> > > Encoding: quoted-printable

> >

> >

> >

> >

> >

[Guest guest]

I was talking about this to a different group. and someone replied. Your

fooling yourself to think this works. all I could say was " Yup, I'm

fooling my body, so it works "

Here is something to think about. Take a big pot of water and stick it on

the stove. turn the flame on and watch the water till it boils. You will

feel like your sitting there forever. Now, dump the boiling water out and

refill the pot with cold water again. Put the pot on the flame again. but

this time go watch a TV program that you like. when the program is done

come back. The water will be boiling. In your mind, it seemed the second

time was much faster. but in actuality it was the same amount of time. what

the difference was your perception. The same thing can be done with pain.

Say you have a headache, concentrate on the headache, think of only the

headache. You do this for 5 minutes soon it will be the worst headache you

have ever had. or you can ignore the pain. think of something else. the

pain will move into the background. It is easer said than done, and it does

take practice.

Thanks for the suggestions, Bob. I will certainly try this when I'm awake

in the middle of the night with a headache. I'll try anything!

na

Re: Face & Head Pain

>

>

> > Wow na, I am really sorry to hear of this! I

> > have not had such pain, but I would guess the

> > tumor is disturbing some nerve. Tumors may not

> > show noticeable growth on tests, but yet sometimes

> > sensations are different. I also think I heard

> > something once about their consistency changing

> > vs. growth, but not sure of that; Sure hope

> > someone more knowledgeable than me gives you some

> > answers. Marie

> >

> > Brad and na Finch wrote:

> >

> > > Part 1.1 Type: Plain Text (text/plain)

> > > Encoding: quoted-printable

> >

> >

> >

> >

> >

[Guest guest]

I don't understand; what is he saying the pain is from? And would removal

relieve the pain? At what cost? Marie

Brad and na Finch wrote:

> Thanks, Marie. I guess I'm out of luck. My neurosurgeon in Dallas told me

> to find a GP here to prescribe narcotics. Sigh... I just had my MRI 2 weeks

> ago and I guess he's saying there's nothing we can do but medicate.

>

> na

>

> Re: Face & Head Pain

>

> > Wow na, I am really sorry to hear of this! I

> > have not had such pain, but I would guess the

> > tumor is disturbing some nerve. Tumors may not

> > show noticeable growth on tests, but yet sometimes

> > sensations are different. I also think I heard

> > something once about their consistency changing

> > vs. growth, but not sure of that; Sure hope

> > someone more knowledgeable than me gives you some

> > answers. Marie

> >

> > Brad and na Finch wrote:

> >

> > > Part 1.1 Type: Plain Text (text/plain)

> > > Encoding: quoted-printable

> >

> >

> >

> >

> >

[Guest guest]

I would question why you would say " anything a surgeon can do will probably

make the problem worse " ? And I congratulate you on successful use of

visualization, and I am sure it works for you==but it does not work at all for

me. Once again, we are all different. Marie

CrystalBuzz wrote:

> Anything a surgeon can do work NF2 will probably make the problem worse,

> Intervention by surgeon should always be the last resort.

>

> Pain is understood very little, Especially chronic pain. they can not

> measure it or even tell were the pain is. there are only a few option for

> pain. Medication is one option. Another is mind over matter, Convince

> your body into not hurting and it wont. (Much easer said than done) My

> favorite tool, for that, is visualization.

>

> Close your eyes, Sit in a comfortable position. (I like laying down, on my

> back, some people sit cross legged) Take 5 deep, slow, censing, breaths.

>

> In your mind, picture the pain as a flame. Then picture a knob under the

> flame.

>

> Turn the knob and the flame will go down, Keep turning the knob till the

> pain-flame is gone. if it comes back turn the flame down more.

>

> I have used this pain exercise for a very long time. and it works

> tremendously.

>

> Ill describe one instance were I used this. About 1 yea ago, I had major

> back surgery. (Remove two tumors that were squishing the spinal cord) After

> the surgery they put an external shunt in. that drained spinal fluid.

> while sleeping this tube got caught on something and pulled out. I have

> never felt such pain... it was horrible!! It was the middle of the night

> and the nurses were slow to answer my page. I almost passed out, I was

> seeing spots and getting very sick. Im sure I passed out a few times. then I

> thought of this exercise. I did it and it made a HUGE difference. I was

> able to disconnect myself from the pain. It still hurt but I wasn't there.

>

> Bob

>

> Thanks, Marie. I guess I'm out of luck. My neurosurgeon in Dallas told me

> to find a GP here to prescribe narcotics. Sigh... I just had my MRI 2 weeks

> ago and I guess he's saying there's nothing we can do but medicate.

>

> na

>

> Re: Face & Head Pain

>

> > Wow na, I am really sorry to hear of this! I

> > have not had such pain, but I would guess the

> > tumor is disturbing some nerve. Tumors may not

> > show noticeable growth on tests, but yet sometimes

> > sensations are different. I also think I heard

> > something once about their consistency changing

> > vs. growth, but not sure of that; Sure hope

> > someone more knowledgeable than me gives you some

> > answers. Marie

> >

> > Brad and na Finch wrote:

> >

> > > Part 1.1 Type: Plain Text (text/plain)

> > > Encoding: quoted-printable

> >

> >

> >

> >

> >

[Guest guest]

Again, I would have to say I disagree. If I could

" Monday morning quaterback " I would have had tumor

removal a lot sooner instead of fighting so much

to save my hearing. I feel that by waiting so

long, the tumor became such difficult surgery I

have many other losses, besides deafness. Of

course who is to say, if I had made a different

decision; but it is just my general understanding

that it is much easier to remove a tumor when it

is smaller, rather than wait until it is life

threatening. Marie

CrystalBuzz wrote:

> Part 1.1 Type: Plain Text (text/plain)

> Encoding: 7bit

[Guest guest]

Wow I am impressed; you would probably have to see

22 doctors and get lucky before you would get this

kind of info; you would kind of hope a doc

familiar with NF2 would say yes, well this is

hapening because ..... and you can alleviate it

and live with it by taking ......; do you think

Mish will send na a bill? Marie

misha64@... wrote:

> Part 1.1 Type: Plain Text (text/plain)

> Encoding: 7bit

[Guest guest]

I also question this generalization. I had successful

surgical removal of three NF2 tumors (including both

ANs). It depends on the doc., the patient, and the

situation. Technology and surgical procedures have

improved so much so fast that this is not the case any

more.

In my case, I am glsd the tumors were removed-

completely and with no re-growth after 10 years-

rather than waiting for them to grow sufficiently to

cause complications.

It's a case-by-case situation.

--- Marie Drew wrote:

> I would question why you would say " anything a

> surgeon can do will probably

> make the problem worse " ?

>

> CrystalBuzz wrote:

>

> > Anything a surgeon can do work NF2 will probably

> make the problem worse,

> > Intervention by surgeon should always be the last

> resort.

__________________________________________________

[Guest guest]

CrystalBuzz, I enjoy your posts, I really do, but that statement is untrue. I am

sorry if you've had bad experiences, I hope nothing too bad. But for me and many

here, surgery has saved our lives and our quality of life. Id be in a wheelchair

and homebound today if not for my 5 successful surgeries. Instead I work full

time, school part time, run a support group for late deaf and lead a normal

life.

> CrystalBuzz wrote:

>

> > Anything a surgeon can do work NF2 will probably make the problem worse,

> > Intervention by surgeon should always be the last resort.

[Guest guest]

And look at what Jennette just went through. A very risky surgery and she

came out very well.

and Christi Waldrip wrote:

> I also question this generalization. I had successful

> surgical removal of three NF2 tumors (including both

> ANs). It depends on the doc., the patient, and the

> situation. Technology and surgical procedures have

> improved so much so fast that this is not the case any

> more.

>

> In my case, I am glsd the tumors were removed-

> completely and with no re-growth after 10 years-

> rather than waiting for them to grow sufficiently to

> cause complications.

>

> It's a case-by-case situation.

>

>

>

> --- Marie Drew wrote:

> > I would question why you would say " anything a

> > surgeon can do will probably

> > make the problem worse " ?

> >

> > CrystalBuzz wrote:

> >

> > > Anything a surgeon can do work NF2 will probably

> > make the problem worse,

> > > Intervention by surgeon should always be the last

> > resort.

>

> __________________________________________________

>

[Guest guest]

What you quoted was for pain management. not for tumor removal. That was

quoted out of context. For Pain management a surgeon is not the individual

to see. Unless you have no functions in that area. Like if you have leg

pains and you have no function in your legs. at that point a surgeon can do

a spinal block.

For someone that has not had any surgeries and no scar tissue a surgery to

remove a small tumor is a good idea. With NF2 the tumors are not cancerous.

and depending on its placement one can wait for years and years before you

have to remove it.

Bottom line. Consult as many Dr's as possible that have allot of experience

with NF2 before you do the surgery. A surgeon that has removed allot of

cancer tumors but doesn't know about NF2 will opt to remove the tumor right

away. they will also try to scrape every little bit of the tumor out.

Usually this is not needed with NF2, and will cause unneeded damage.

As far as visualization goes. Yup, sometimes the pain it much to bad for

it to work with me. But I always try and I am getting better at it. BTW

I'm going to get yelled at for saying this and allot of people are going to

disagree. but if you pray to God, to take your pain away. Visualization is

EXACTLY what your doing. It is the same process in the mind that reduces

your pain. you believe it will happen so it does.

I would question why you would say " anything a surgeon can do will probably

make the problem worse " ? And I congratulate you on successful use of

visualization, and I am sure it works for you==but it does not work at all

for

me. Once again, we are all different. Marie

CrystalBuzz wrote:

> Anything a surgeon can do work NF2 will probably make the problem worse,

> Intervention by surgeon should always be the last resort.

>

> Pain is understood very little, Especially chronic pain. they can not

> measure it or even tell were the pain is. there are only a few option for

> pain. Medication is one option. Another is mind over matter, Convince

> your body into not hurting and it wont. (Much easer said than done) My

> favorite tool, for that, is visualization.

>

> Close your eyes, Sit in a comfortable position. (I like laying down, on my

> back, some people sit cross legged) Take 5 deep, slow, censing, breaths.

>

> In your mind, picture the pain as a flame. Then picture a knob under the

> flame.

>

> Turn the knob and the flame will go down, Keep turning the knob till the

> pain-flame is gone. if it comes back turn the flame down more.

>

> I have used this pain exercise for a very long time. and it works

> tremendously.

>

> Ill describe one instance were I used this. About 1 yea ago, I had major

> back surgery. (Remove two tumors that were squishing the spinal cord)

After

> the surgery they put an external shunt in. that drained spinal fluid.

> while sleeping this tube got caught on something and pulled out. I have

> never felt such pain... it was horrible!! It was the middle of the night

> and the nurses were slow to answer my page. I almost passed out, I was

> seeing spots and getting very sick. Im sure I passed out a few times. then

I

> thought of this exercise. I did it and it made a HUGE difference. I was

> able to disconnect myself from the pain. It still hurt but I wasn't

there.

>

> Bob

>

> Thanks, Marie. I guess I'm out of luck. My neurosurgeon in Dallas told

me

> to find a GP here to prescribe narcotics. Sigh... I just had my MRI 2

weeks

> ago and I guess he's saying there's nothing we can do but medicate.

>

> na

>

> Re: Face & Head Pain

>

> > Wow na, I am really sorry to hear of this! I

> > have not had such pain, but I would guess the

> > tumor is disturbing some nerve. Tumors may not

> > show noticeable growth on tests, but yet sometimes

> > sensations are different. I also think I heard

> > something once about their consistency changing

> > vs. growth, but not sure of that; Sure hope

> > someone more knowledgeable than me gives you some

> > answers. Marie

> >

> > Brad and na Finch wrote:

> >

> > > Part 1.1 Type: Plain Text (text/plain)

> > > Encoding: quoted-printable

> >

> >

> >

> >

> >

[Guest guest]

I want to state again we were talking about pain. There is very little a

surgeon can do about chronic pain. I also want to defend myself because the

question was posed toward the individual. this is the point I'm at. In

the beginning when there was a sure cause. yes surgery was the way to go.

But now, Things are not so black and white, They all know why I hurt like I

do. but surgery will not help the pain I am in. If anything it will make it

worse. I'm sure there are many NF2ers out there that are in the same

situation that I'm in.

Surgeries Suck! NF2 SUCKS! Can you agree with that ? The body was not

made to have surgeries done on it.

I'm defiantly not saying " don't have surgeries " I have had tumors removed

that were defiantly life threatening. And I would have died if I didn't

have surgeries, But surgeries should be seen as a last resort. not the first

option.

Lets all be honest here. Has anyone here after having a major brain surgery

(on the brainstem) or Spinal cord surgery that has come back 100% to what

they were like before they had NF2 ? I'm sure there are one or two

instances but I'm positive, the biggest group will say no. That they are

either, left deaf, blind, balance shot, or something else was taken away

that will never come back. Surgeries SUCK! Big time. I doubt there are

many people out there that enjoy surgeries. but sometimes we don't have a

choice.

That is the negative part of NF2.. But It helps to look at the positive, I

have grown so much within myself, and I believe in the human body. we are

all here for a very short amount of time, everyone will die. not just

NF2ers. Having NF2 gives me an outlook that many don't have. I try to live

my life with one rule. I want to be happy. Part of what makes me happy is

making others happy.

Re: Face & Head Pain

CrystalBuzz, I enjoy your posts, I really do, but that statement is untrue.

I am

sorry if you've had bad experiences, I hope nothing too bad. But for me and

many

here, surgery has saved our lives and our quality of life. Id be in a

wheelchair

and homebound today if not for my 5 successful surgeries. Instead I work

full

time, school part time, run a support group for late deaf and lead a normal

life.

> CrystalBuzz wrote:

>

> > Anything a surgeon can do work NF2 will probably make the problem worse,

> > Intervention by surgeon should always be the last resort.

[Guest guest]

na

We have a new Private Hospital just opened here in Australia. It handles

conservative medicines and therapeutic remedies in conjunction. Perhaps you

could find a similar service through one of your Community Health Centres or

Pain Clinics. I can imagine how desperate you must feel, being in pain and

not knowing where to turn for help.

Hoping you find relief quickly!

ine

Re: Face & Head Pain

>

>

> > Hey na,

> >

> > If it were me, I would go to my neurosurgeon in

> > Dallas. No doctor in Odessa/Midland will have the

> > requisite expertise in NF2 to deal with you. Plus, my

> > family has had some BAD experiences with devastating

> > consequences with the idiots at Odessa Regional

> > Hospital.

> >

> > Today's Monday- maybe try to call the Dallas doc.

> > again.

> >

> > Hope it works out!

> >

> >

> >

> >

> > --- Brad and na Finch

> > wrote:

> > > Hi Crew,

> > >

> > > I have a 3.2 x 2.7 cm regrowth on the left side. I

> > > recently had an MRI and it showed no growth from the

> > > last scan 6 months ago. Yay! That was June 14th.

> > > Friday night, I was awakened by horrible pain on

> > > the right side of my face and head. I was finally

> > > able to go back to sleep and was ok Saturday. Then

> > > Sunday, about 2 hours after I crashed, the pain

> > > awakened me again! I sat up for a while and took

> > > some tylenol, but it hurt so bad... I got Brad (my

> > > husband) to take me to the emergency room. What a

> > > mistake! We were there 6 hours! I've never seen a

> > > doctor there before and I just needed something

> > > stronger than tylenol so I could sleep, but after

> > > they found out I have brain tumors... Brad said they

> > > were just trying to make a case study out of me. We

> > > were there from midnight to 6 am. They thought they

> > > should do a catscan and since this was NEW pain for

> > > me, I went ahead with it (I guess it didn't show

> > > anything except that I have tumors (duh).) Then

> > > they just gave me a couple of shots before I went

> > > home. No prescription or anything. Two hours after

> > > I got home and hit the sack, the pain started again.

> > > It doesn't happen when I am in an upright position,

> > > only when I'm sleeping or lying down. Yesterday

> > > morning, I was so desperate for relief, I called my

> > > cousin to bring over some darvocet she had from a

> > > while back. It helped and I layed down again, only

> > > to be awakened by the pain. My husband called my

> > > neurosurgeon in Dallas (300 miles away) and could

> > > only get the dr in his office (it was sunday.) He

> > > didn't want to prescribe anything over the phone

> > > without seeing me. I emailed my doctor, but he

> > > didn't have anything helpful to say.

> > >

> > > Has anyone else had this type of pain? What were

> > > the circumstances around it. What did you take for

> > > the pain?

> > >

> > > Thanks... this has been so hard because I work and

> > > I'm ok during the day, but the nights are hell. Its

> > > hard to get rest so I can go to work. Any helpful

> > > advice?

> > >

> > > Thanks... na

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi Johanna

Sorry to hear that you are suffering from these terrible headaches. I've had these for years now, they started before my first AN surgery and I agree with about needing to stay upright until the pain subsides. I know now that it's better to get up as soon as the pain starts (I sit in the dark and look out of the window!) rather that wait until it becomes unbearable. I do take some pain relief (2 tylenol and 2 ibuprofen) but I'm convinced that getting up and moving around is the best remedy. If it's any consolation, my headaches tend to come and go .. I have a bad couple of bad weeks and then nothing for a couple of months.

Hope you feel better soon and good luck at the pain clinic ..

Best wishes

Gill

[Guest guest]

Bob,

I replied because this it seems to be a recurring

theme in your posts (not just a response to this

individual). You have stated often that doctors only

make things worse.

I belive this Crew is designed for us to share our

experiences and advice, so it's good that you are

doing that, but it is NOT always wise to wait.

Surgeries do NOT make things worse. They CAN, if they

are botched.

My two ANs were fairly large, and they were causing

hearing loss, but otherwise no problems. No pain,

etc. I could have waited, perhaps. Ditto my third

tumor removal. I had gone in for a follow up to see

if the ANs were growing back when another tumor was

found. The doctor suggested we get it while it's

small, and I came through with no problems at all.

Better than to wait until it grew near or into my

brain and made the surgery more complicated.

I am deaf, I have no balance, and I have neuropathy,

which does indeed suck, big time. But these are

caused by NF2; they are not end-products of the

surgeries. I feel, had we waited until the tumors

grew, that I would be MUCH worse off.

No one wants to have surgery just for the fun of it,

but surgery is a necessary evil that comes with this

disease. And some situations dictate that it would be

better to remove a tumor earlier rather than later.

- getting ready for a nine-hour drive to Houston

(And yes! Lori, we are taking Reagan for ice cream

afterward as well as AstroWorld- she deserves to

be spoiled this week).

--- CrystalBuzz wrote:

> I want to state again we were talking about pain.

> There is very little a

> surgeon can do about chronic pain. I also want to

> defend myself because the

> question was posed toward the individual. this is

> the point I'm at. In

> the beginning when there was a sure cause. yes

> surgery was the way to go.

> But now, Things are not so black and white, They

> all know why I hurt like I

> do. but surgery will not help the pain I am in. If

> anything it will make it

> worse. I'm sure there are many NF2ers out there that

> are in the same

> situation that I'm in.

>

> Surgeries Suck! NF2 SUCKS! Can you agree with that

> ? The body was not

> made to have surgeries done on it.

>

> I'm defiantly not saying " don't have surgeries " I

> have had tumors removed

> that were defiantly life threatening. And I would

> have died if I didn't

> have surgeries, But surgeries should be seen as a

> last resort. not the first

> option.

>

> Lets all be honest here. Has anyone here after

> having a major brain surgery

> (on the brainstem) or Spinal cord surgery that has

> come back 100% to what

> they were like before they had NF2 ? I'm sure there

> are one or two

> instances but I'm positive, the biggest group will

> say no. That they are

> either, left deaf, blind, balance shot, or something

> else was taken away

> that will never come back. Surgeries SUCK! Big

> time. I doubt there are

> many people out there that enjoy surgeries. but

> sometimes we don't have a

> choice.

>

> That is the negative part of NF2.. But It helps to

> look at the positive, I

> have grown so much within myself, and I believe in

> the human body. we are

> all here for a very short amount of time, everyone

> will die. not just

> NF2ers. Having NF2 gives me an outlook that many

> don't have. I try to live

> my life with one rule. I want to be happy. Part of

> what makes me happy is

> making others happy.

>

>

> Re: Face & Head Pain

>

>

> CrystalBuzz, I enjoy your posts, I really do, but

> that statement is untrue.

> I am

> sorry if you've had bad experiences, I hope nothing

> too bad. But for me and

> many

> here, surgery has saved our lives and our quality of

> life. Id be in a

> wheelchair

> and homebound today if not for my 5 successful

> surgeries. Instead I work

> full

> time, school part time, run a support group for late

> deaf and lead a normal

> life.

>

> > CrystalBuzz wrote:

> >

> > > Anything a surgeon can do work NF2 will probably

> make the problem worse,

> > > Intervention by surgeon should always be the

> last resort.

>

>

>

>

>

[Guest guest]

I happen to agree with you about visualization and prayer; my motto in life is

" whatever works " . Sorry I misunderstood about the pain management, and I do

agree with the rest of your statements. Marie

CrystalBuzz wrote:

> What you quoted was for pain management. not for tumor removal. That was

> quoted out of context. For Pain management a surgeon is not the individual

> to see. Unless you have no functions in that area. Like if you have leg

> pains and you have no function in your legs. at that point a surgeon can do

> a spinal block.

>

> For someone that has not had any surgeries and no scar tissue a surgery to

> remove a small tumor is a good idea. With NF2 the tumors are not cancerous.

> and depending on its placement one can wait for years and years before you

> have to remove it.

>

> Bottom line. Consult as many Dr's as possible that have allot of experience

> with NF2 before you do the surgery. A surgeon that has removed allot of

> cancer tumors but doesn't know about NF2 will opt to remove the tumor right

> away. they will also try to scrape every little bit of the tumor out.

> Usually this is not needed with NF2, and will cause unneeded damage.

>

> As far as visualization goes. Yup, sometimes the pain it much to bad for

> it to work with me. But I always try and I am getting better at it. BTW

> I'm going to get yelled at for saying this and allot of people are going to

> disagree. but if you pray to God, to take your pain away. Visualization is

> EXACTLY what your doing. It is the same process in the mind that reduces

> your pain. you believe it will happen so it does.

>

[Guest guest]

Each situation, person, tumor has a different way to be handled, but far to

after, patients and doctors want to jump in and slice up someone before they

consider the other options. Today there are other options beside surgery

for the tumors. Surgery is a tool, and is perfectly viable. Never once did

I start Doctors WILL make it words. this id directly quoted from what I

stated.

" Anything a surgeon can do work NF2 will probably make the problem worse,

Intervention by surgeon should always be the last resort. "

And we were talking about Pain not Tumor removal.

Why is it people only read what they want to read or put something in my

words that was never said ? Doctors defiantly have their place with the

handling of NF2, But Doctors are not gods, and they are as human as the

rest of us, and they can also screw up sometimes. My cousin is dead today

because a surgeon screwed up.

Do you guys really want me to post about what I feel as far as what humans

are. I remember when I tried to post my ideas before people got extremely

offended, and they also pulled things out of my words that was never stated.

Ok ill jump in here... I'm looking forward to the reticule...

I believe The universe and everything we can see IS God. It never began and

will never end. It has always been here and will always be here.

There have been people that can " See " the future. They see a place were

there is no sickness, no hunger and everyone is happy. They believe this to

be a separate place from earth in a special place called Heaven. But I

believe that this place is here. That thru technology Pain and suffering

WILL be ended. we are in the very begining of a long jurney, and the ABI is

proof that we will be able to fix our bodies.

I see the universe as being part of what God is. We are part of the

universe.... Am I saying that we are Gods? No.. Your hand is part of you

but you are not your hand.

Bob,

I replied because this it seems to be a recurring

theme in your posts (not just a response to this

individual). You have stated often that doctors only

make things worse.

I belive this Crew is designed for us to share our

experiences and advice, so it's good that you are

doing that, but it is NOT always wise to wait.

Surgeries do NOT make things worse. They CAN, if they

are botched.

My two ANs were fairly large, and they were causing

hearing loss, but otherwise no problems. No pain,

etc. I could have waited, perhaps. Ditto my third

tumor removal. I had gone in for a follow up to see

if the ANs were growing back when another tumor was

found. The doctor suggested we get it while it's

small, and I came through with no problems at all.

Better than to wait until it grew near or into my

brain and made the surgery more complicated.

I am deaf, I have no balance, and I have neuropathy,

which does indeed suck, big time. But these are

caused by NF2; they are not end-products of the

surgeries. I feel, had we waited until the tumors

grew, that I would be MUCH worse off.

No one wants to have surgery just for the fun of it,

but surgery is a necessary evil that comes with this

disease. And some situations dictate that it would be

better to remove a tumor earlier rather than later.

- getting ready for a nine-hour drive to Houston

(And yes! Lori, we are taking Reagan for ice cream

afterward as well as AstroWorld- she deserves to

be spoiled this week).

--- CrystalBuzz wrote:

> I want to state again we were talking about pain.

> There is very little a

> surgeon can do about chronic pain. I also want to

> defend myself because the

> question was posed toward the individual. this is

> the point I'm at. In

> the beginning when there was a sure cause. yes

> surgery was the way to go.

> But now, Things are not so black and white, They

> all know why I hurt like I

> do. but surgery will not help the pain I am in. If

> anything it will make it

> worse. I'm sure there are many NF2ers out there that

> are in the same

> situation that I'm in.

>

> Surgeries Suck! NF2 SUCKS! Can you agree with that

> ? The body was not

> made to have surgeries done on it.

>

> I'm defiantly not saying " don't have surgeries " I

> have had tumors removed

> that were defiantly life threatening. And I would

> have died if I didn't

> have surgeries, But surgeries should be seen as a

> last resort. not the first

> option.

>

> Lets all be honest here. Has anyone here after

> having a major brain surgery

> (on the brainstem) or Spinal cord surgery that has

> come back 100% to what

> they were like before they had NF2 ? I'm sure there

> are one or two

> instances but I'm positive, the biggest group will

> say no. That they are

> either, left deaf, blind, balance shot, or something

> else was taken away

> that will never come back. Surgeries SUCK! Big

> time. I doubt there are

> many people out there that enjoy surgeries. but

> sometimes we don't have a

> choice.

>

> That is the negative part of NF2.. But It helps to

> look at the positive, I

> have grown so much within myself, and I believe in

> the human body. we are

> all here for a very short amount of time, everyone

> will die. not just

> NF2ers. Having NF2 gives me an outlook that many

> don't have. I try to live

> my life with one rule. I want to be happy. Part of

> what makes me happy is

> making others happy.

>

>

> Re: Face & Head Pain

>

>

> CrystalBuzz, I enjoy your posts, I really do, but

> that statement is untrue.

> I am

> sorry if you've had bad experiences, I hope nothing

> too bad. But for me and

> many

> here, surgery has saved our lives and our quality of

> life. Id be in a

> wheelchair

> and homebound today if not for my 5 successful

> surgeries. Instead I work

> full

> time, school part time, run a support group for late

> deaf and lead a normal

> life.

>

> > CrystalBuzz wrote:

> >

> > > Anything a surgeon can do work NF2 will probably

> make the problem worse,

> > > Intervention by surgeon should always be the

> last resort.

>

>

>

>

>

[Guest guest]

I agree with . There are excellent doctors out there and of course

every tumour and every case is different. For me, surgery was a success and

although I have been left with some problems, I'm alive and waiting

patiently for further Grandchildren.

ine

Re: Face & Head Pain

> CrystalBuzz, I enjoy your posts, I really do, but that statement is

untrue. But for me and many

> here, surgery has saved our lives and our quality of life. Id be in a

wheelchair

> and homebound today if not for my 5 successful surgeries.

> > CrystalBuzz wrote:

> >

> > > Anything a surgeon can do work NF2 will probably make the problem

worse,

> > > Intervention by surgeon should always be the last resort.

>