Re: Face & Head Pain

[Guest guest]

What is Neuropathy ????

ine

RE: Face & Head Pain

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

which does indeed suck, big time.

[Guest guest]

Sorry CrystalBuzz I misconstrued what you were saying............ But unless

I missed something and with so many varying mails on this I could have. You

were talking about your pain and not being offered, or able to get any

relief. You stated the size of your tumours and the wait and see approach,

but if your life is unbearable because of the pain, isn't it decision making

time. Hence also the reason surgery came to the fore.

I apologise in advance if I am off the track here.

ine

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]

Hey Mish,

Your experience sounded so much like mine that I took your email to the pain management clinic and they prescribed Neurotin to try. I haven't tried it yet, I'm trying amitriptyline as it has worked for JD (hairball77?) So far, the only thing that brings me relief is Vicodin. Mornings are hell though. Thanks to you and everyone who has made suggestions. This group is GREAT!!

na

Re: Face & Head Pain

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]

I think some people are confused about who sent the Email. from now on I

will put. " This message was brought to you by CrystalBuzz " or somthing

like that before all my posts.

It originally started about Surgeons when someone else asked about pain but

they didn't know where the pain came from. They had tumors but the were the

tumors were would not be causing the pain they were in. I stated that a

surgeon would not be able to help in THAT situation. And more than not would

make the pain worse. I also stated that I had, had the same type of facial

and head pain, when they lay down.

Sorry CrystalBuzz I misconstrued what you were saying............ But unless

I missed something and with so many varying mails on this I could have. You

were talking about your pain and not being offered, or able to get any

relief. You stated the size of your tumours and the wait and see approach,

but if your life is unbearable because of the pain, isn't it decision making

time. Hence also the reason surgery came to the fore.

I apologise in advance if I am off the track here.

ine

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]

Thanks, . I'm really counting on that (that it will cease by itself.)

Happy 4th of July everyone!

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]

I've been stacking pillows, Jeff. A wedge might help even more though. Thanks for the idea.

na

RE: Face & Head Pain

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]

Thanks for sharing your experience with me. I agree, its easier when you get up and move around. I took vicodin all night (to get a good nights rest) but my head protested big time this morning. It feels like its going to burst.

Did someone say something about an anti-inflammatory??

na

Re: Face & Head Pain

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]

Yes I mentioned anti-inflamitory drugs. Ibuprofen-Motren or Advil are the same thing.

1 over the counter pill is usualy 200 milagrams

1 perscription Motrin is 600 millagrams.

There is another Anti Inflamitory drug called Decidron. it is very powerful. and very adictive. You need to talk to your Dr and ask him-her about it.

-----Original Message-----From: Brad and na Finch Sent: Wednesday, July 04, 2001 7:27 PMTo: NF2_Crew Subject: Re: Re: Face & Head Pain

Thanks for sharing your experience with me. I agree, its easier when you get up and move around. I took vicodin all night (to get a good nights rest) but my head protested big time this morning. It feels like its going to burst.

Did someone say something about an anti-inflammatory??

na

Re: Face & Head Pain

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]

Hi Sheryn,

I have never been given decadron. The only steroid I've had (I think) was

prednisone AFTER surgery. You said something that caught my attention. You

were told that you had a brainstem glioma... and this is not an NF2 tumor.

My MRI reports say that I have a glioma that begins just below the

brainstem, however, my neurosurgeon tells me its an astrocytoma. What did

they finally decide your tumor was? Is it definitely a glioma? I may not

have understood what you meant in your message (I have a headache. )

Thanks for caring. For now, I am taking vicodin at night, as well as 1

neurontin capsul before I go to bed. I'm a wuss! I've been blessed with

very little pain in my life. This has been an eyeopener for me. I know so

many of you live with the pain every day. Sigh.

na

RE: Re: Face & Head Pain

> Sheryn Says:

> Hi Johanna,

> I'm sorry to hear you are having so much pain. I was on decadron at

various

> amounts steadily for 5 years. The first 14 months, following my first MRI

> revealing many head neck and spine tumors and including a Brainstem Glioma

> (I was told this tumour is not NF2) and leading to diagnosis of nf2, I was

> on very large amounts. During this period of time I had 4 surgeries on the

> brainstem, radiation and started Chemo. After the 18 months of Chemo the

> amount of Decadron was lowered and I tried to withdraw from it. I started

to

> feel once again, the way I had before my surgeries. Pain increased

> significantly. My hearing level in my good ear dropped. I knew nothing

about

> NF2, AN,s, or decadron. I needed a wheelchair to get around...had no

> energy..among many body functions were as bad or worse then they were

before

> the surgeries. I couldn't use my hands to write or hold most anything

again,

> vomit, bladder and bowel problems. I weaned down again very very

slowly....3

> years it took. But truthfully I felt the decadron helped me significantly.

I

> could walk, write, bladder and bowel improved alot, vomiting stopped. I

> could rise from sitting by myself, no vomiting and as I mentioned earlier,

> most importantly I could hear quite well on my only hearing side again.

The

> only downside and a big one it is, is that it led to a very significant

> amount of weight, 69 pounds. But, We were told it was necessary for me to

> live. At that time I was nieve and thought the Drs. here knew what they

were

> doing. Once I got out of the province to Edmonton and HEI, the DRS. at

both

> locations told me of the evils of decadron.

>

> I'm thinking maybe you are given the decadron to compress the tumor, for

> this change in the tumour could reduce pain. I was told by several Drs

that

> decadron also compressed our tumours for some of them are quite mass like

> and it enables them to have a better chance to get at most or hopefully

all

> of the cells. I had asked Edmonton and HEI Drs. if It would be advisable

for

> me to go back on the decadron, for I thought I would rather be large then

> deaf and explained how much hearing had returned when I had even a small

> amount of decadron. The response was, in both situations, agreement that

the

> decadron had changed the tumour likely allowing me to hear better. But

> definitely not, and in both cases they gave me alot of very strong

reasons.

> Some of improvements were not likely because of the decadron. In fact it

was

> actually thought by them to cause some of the complications and enfact

they

> thought likely enhanced my complications when I tried to drop them

quickly.

> Like so many of our drugs. You need to slowly go off them. It seems the

> thyroid.....pituatary...etc can be involved in so many of our drugs. Its

> alot more complicated then I ever imagined. For me, for pain I now use

extra

> stength tylenol. Drs. in Edmonton and at HEI said take your pain killers

> immediately at signs of pain. I do that now and find amazingly that I, in

> the long run, need far fewer and less strong pain pills. These pain meds

are

> so hard on our liver etc., and I heard the constipating ones can

eventually

> lead to a weak colon among other things. Just can't win. I wish you the

best

> of luck in beating and treating this na.

> Sorry for being so long :-( and please, I'm interested in hearing yours

and

> others opinions. Has anyone else had decadron given quite awhile ( 3

weeks)

> before surgery, as I have?

> Take care, Sheryn

> ______________________________________________________________________

> Says:

> > Decdron is a steriod, and used after surgery like brain surgery and

other

> to

> > control major swelling. I dont think that is given for everyday AN pain.

> The

> > only person I know who was prescribed that med to use every day to

control

> > their pain had a veryyyy serious problem and died from it. Thedecadron

was

> the

> > last resort for pain relief.

> >

> >

> >

> >

>

>

>

>

>

>

[Guest guest]

Thanks ine.

Just having you guys here, with so many of you having experienced this

before, is comforting!

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]

He is against removal at this time, so there was no discussion about

removal. All he said was " Episodic pain is usually not from a structural

problem although in your case it could be related to the tumours in the

region of the trigeminal nerve. "

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]

That sounds like my pain, exactly.

I LOVE Sedona. My husband and I went there for our honeymoon in 1993. We

were returning from being married in VEGAS. MR. LAS VEGAS (Pat Dillon) was

present (just at the wedding, not on the honeymoon.

na

Re: Face & Head Pain

> ,

> Ditto. My head and facial pains are almost exactly as you state below. My

> right eye, temple, and even going lower into my throat/neck area. It

> would be so bad it would wake me up screaming in pain. I used neurontin

> before but stopped because a side effect is lower back pain, which I

> had/have a lot of anyway. I now use Elavil, amitriptylin. It helps you

> feel drowsy with just a little grogginess in the morning. I've heard it

> is prescribed to people with fibromyalgia. It seems to help to get up and

> walk around for about 5 minutes before laying back down. My recliner is

> great too, it helps by keeping my head above my heart which for me seems

> to make a difference.

>

> BTW Sedona was great but a lot of the red rock areas were closed because

> of the forest fires. Still it was great to get out of this heat.

>

> Later,

> JD in AZ

>

> On Tue, 3 Jul 2001 03:31:47 EDT misha64@... writes:

> > 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.

> >

>

>

>

>