Re: chronic pain/Muddlissa

[Guest guest]

How awful that your problems were caused in part by a slip! You are

so young to have had a stroke.That must have been absolutely

frightening. It's a miracle it was not more considering. I have a

friend who is 28 years old and has tumors in her brain, three of them

from a condition called NF neurofibromatosis (sp?) her father died

from it at 38. They went into her head through the occipital lobe

(right above the neck in the back of head) to one side slightly, to

get at the tumors to biopsy one of them because one had shown growth

on an MRI (they monitor her)to see if it is cancerous. She had to

sign forms saying that as a result of the surgery, there was a

possibility/she understood she could go blind, be paralyzed, on and

on, as result of surgery...needless to say she was scared to pieces

over that realization. It turns out they did not get the tissue they

were after,they accidentally got healthy tissue after they'd drilled

a hole the size of a quarter into her skull while she was wide awake,

and she has not let them go back in. She had no detrimental effects

and just the thought of what COULD have and MIGHT happen next made

her decide to NOT let them back in. I can't say I blame her. I was a

student for awhile going into radiology field before I had all my

accidents and even though I never graduated I remember some of what

we were taught. The brain is a very very difficult spot to do any

type of surgery, our instructor told us.I think anytime they do

neurological surgery any surgery really it is risky. Whether it is

from unexpected inflammation, infection or knicking something, etc.

Actually as a nurse assistant I took care of a man who had died

during routine appendectomy and was brought back..he'd a bad reaction

to anesthesia. He suffered brain damage from loss of oxygen to the

brain, for too long a period before they revived him. I have another

friend who had her vagus (sp?) nerve knicked during stomach surgery

and now she has a permanent inability to eat and has to be fed

through digostomy tube...so the more I hear and remember the more I

am grateful that I have not had surgery yet. SOrry to go on and on

like this it's just the way I feel tonight, if I don't I will

implode. I would travel to California if I could afford it. Actually

rates are down on the airlines now perhaps I would actually consider

it. It just seems that nobody is taking the pain I have very

seriously except for me and those I meet also in pain. I need a good

understanding and compassionate doctor to feel that way consistently.

It seems any help I get is shortlived and/or threatened to be taken

away all the time. I have heard of the pain pumps I haven't even

tried a pain patch yet but wanted to ask my doctor about that. They

won't even try me on the extended release meds which I have heard are

more effective. So I take what I have for now and pray that it will

help even the little bit it has and that the pain does not get worse

again anytime soon. It has leveled out to a point.Thank you, very

much, for addressing me! I hope that the info can help anyone in the

group as well! I have a friend with Trigeminal Neuralgia and I will

definitely share this info with him. I am grateful to you as I'm sure

he will be. Take extra good care of yourself, ---

In chronic_pain@y..., " Kay " <kayfrank3@h...> wrote:

> EM,

> I wanted to ask where you live? I had brain surgery in 1987 and the

> neurosurgeon cut the trigeminal nerve by accident and an artery.

It caused

> a stroke (I was 41) and the left side of my face and head are

permanently

> numb. Underneath it all is a terrible aching, searing, throbbing,

burning

> pain. It is a condition called " Anesthesia Delorosa; " pain in a

numb

> place.

>

> I went to the Univ. of California Pain Clinic for a year and they

tried

> every drug/treatment possible. When everything failed, I was given

an

[Guest guest]

i may start mscontin or duragesic path(oxycontin didn't work. whaat side-effects

do you have with morphine ie/ i am trying to go to school part time?

angel

chronic pain/Muddlissa

EM,

I wanted to ask where you live? I had brain surgery in 1987 and the

neurosurgeon cut the trigeminal nerve by accident and an artery. It caused

a stroke (I was 41) and the left side of my face and head are permanently

numb. Underneath it all is a terrible aching, searing, throbbing, burning

pain. It is a condition called " Anesthesia Delorosa; " pain in a numb

place.

I went to the Univ. of California Pain Clinic for a year and they tried

every drug/treatment possible. When everything failed, I was given an

implanted infusion pump (in my abdomen). It delivers a tiny amount of

morphine 24 hours a day through the intrethecal (sp?) canal (an area near

the spinal canal). Much less medication than I had to take by mouth.

The result was marvelous. I was able to return to work after 2 years off

and my pain level went from 10+ to a 2. I have the pump filled every 5

weeks and though life isn't really normal, it sure beats what it was.

I am glad you don't take too much Tylenol. I used to supplement pain

medication with Tylenol too. I never really knew that it was Tylenol that

made my head so foggy and I just felt lousy. Thank goodness I stopped

taking it, as I thought it was safe back in 1987/88.

My Dr. is Elliot Krames in San Francisco (Pacific Pain Treatment Center). I

was one of his first infusion pump patients. Now he has hundreds. It is

not the answer for everyone, but it saved my life. The pump is made by the

Medtronic Corporation.

By the way, my brain surgery took place in Pittsburgh, Pa.. A famous

neurosurgeon, Janetta, did the operation. I was sent there from

California, as he was the Dr. who had performed the most surgery for my

condition (Trigeminal Neuralgia).

It was an awful experience.

Good Pain Clinics are usually found at major Universities and UCSF was

wonderful to me. It made such a difference dealing with pain specialists

who knew and believed my pain needed to be relieved.

I hope everyone on the list is fortunate to have a good clinic to get their

treatment.

Finally, the infusion pumps work well for most types of back pain, pain in

the limbs, cancer pain, etc.. I think I am one of the few that has one for

facial pain.

I am aware from your work that you may already know much of this info, but

hope it may be of some help to someone in the group.

Let me know how you are doing.

Sincerely,

Kay

M. Kay

kayfrank3@...

[Guest guest]

At 10:04 PM 09/24/2001 -0700, Kay wrote:

>EM,

>I wanted to ask where you live?

I'm in north Texas at the moment, Lubbock to be exact.

>When everything failed, I was given an implanted infusion pump (in my

>abdomen).

Your pain must be worse than mine, Kay -- I do not believe that I am in

enough pain to warrant a pump. It ebbs and flows, you know? one day

terrible, the next day bearable, the day after that almost gone, then

WHAMMO it's back, full force. I can't predict it or understand it. I

don't know why it's bad one day and not so bad the next. It doesn't seem

to matter what I do physically. (What does matter is the amount of rest I

get -- while my pain is not predictable, my exhaustion is -- therefore I'm

careful about that.)

*hugs*

Em

~~~~~~~~~~~~~

It is the tale, not he who tells it.

~~~~~~~~~~~~~

[Guest guest]

sounds like me, i have cfs and fm angel

Re: chronic pain/Muddlissa

At 10:04 PM 09/24/2001 -0700, Kay wrote:

>EM,

>I wanted to ask where you live?

I'm in north Texas at the moment, Lubbock to be exact.

>When everything failed, I was given an implanted infusion pump (in my

>abdomen).

Your pain must be worse than mine, Kay -- I do not believe that I am in

enough pain to warrant a pump. It ebbs and flows, you know? one day

terrible, the next day bearable, the day after that almost gone, then

WHAMMO it's back, full force. I can't predict it or understand it. I

don't know why it's bad one day and not so bad the next. It doesn't seem

to matter what I do physically. (What does matter is the amount of rest I

get -- while my pain is not predictable, my exhaustion is -- therefore I'm

careful about that.)

*hugs*

Em

~~~~~~~~~~~~~

It is the tale, not he who tells it.

~~~~~~~~~~~~~

[Guest guest]

RE: Infusion Pumps

I guess the pump is a last resort, but I see so many patients in my Dr.'s

office, that I know they help many types of pain. You are right though, my

pain was always present. It never stopped or changes (well, it did go from

terrible to unbearable on regular pain treatments).

I live in the San Francisco Bay Area.

thanks, Kay

Kay

M. Kay

kayfrank3@...

Re: chronic pain/Muddlissa

At 10:04 PM 09/24/2001 -0700, Kay wrote:

>EM,

>I wanted to ask where you live?

I'm in north Texas at the moment, Lubbock to be exact.

>When everything failed, I was given an implanted infusion pump (in my

>abdomen).

Your pain must be worse than mine, Kay -- I do not believe that I am in

enough pain to warrant a pump. It ebbs and flows, you know? one day

terrible, the next day bearable, the day after that almost gone, then

WHAMMO it's back, full force. I can't predict it or understand it. I

don't know why it's bad one day and not so bad the next. It doesn't seem

to matter what I do physically. (What does matter is the amount of rest I

get -- while my pain is not predictable, my exhaustion is -- therefore I'm

careful about that.)

*hugs*

Em

~~~~~~~~~~~~~

It is the tale, not he who tells it.

~~~~~~~~~~~~~

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[Guest guest]

Re; infusion pump

I am an advocate of these pumps having had a lot to do with them when I

worked with AIDS patients. They would have had no life at all without them.

The dosage can be changed to very low doses for maitainance, and if the pain

" breaks through " you can give yourself a bolus. There is usually a number of

bolus programmed in eg. 3 per 24 hr period. If this number is exceeded for a

length of time, and your pain breaks through then the initial dose can be

increased a little at a time until the correct dosage needed for comfort is

reached. Normal life can be resumed when this level is reached. There is a

getting used to it period the first 2 weeks or so you will be tired, and not

notice much change, then as your body adjusts there will be little or no

reactions at all. A lot of patients, expect instant relief and when that

does not happen think it is not working. I hope this information is helpful

to those thinking of this method of relief. The big draw back is it is very

expensive and you will probably need a good insurance program.

Terry M

[Guest guest]

Re; infusion pump

I am an advocate of these pumps

Terry

Dear Terry and group,

Your description of the pump, how it works, and how it feels is excellent.

I have had an infusion pump for 13 years and would like to add a few

comments. My first pump was implanted in 1988/89. My insurance paid for

everything. At that time I had Travelers Ins. through my employer and it

was a great plan. That first pump bothered me just a bit as I thought it

would just be inside my body and wouldn't be noticeable. It did bulge out

from my right abdomen, just below my waist. However, the pain relief was

worth more than that, and I adjusted quickly esp. as I felt better.

That 1st pump failed within a year but Medtronic paid for the replacement

and it lasted 6 years.

The next pump lasted about 5 years and I just had it replaced in June. This

was the first time I had to pay anything. My insurance co. paid for

everything EXCEPT the pump itself. They had added a clause to all policies;

" Durable goods (implants, pacemakers, etc.) have a lifetime maximum of

$2,000. " The pump cost $10,000. so I had to pay $8,000. I know this is a

huge amount but when I thought of the alternative, I had to have the

replacement. I thought, all of us pay more than that for our cars etc., and

think of it as a necessity. I was able to work full time and finally, it is

supposed to last 7-10 years now. I looked at it as a cost of $1,000. per

year and in that way, it seemed like a buy.

Depending on dosage, the refill schedule varies widely. I go every 5 weeks,

some go every 2 -3 months. It does make me dependent on my Dr. in a big

way, as I can't refill myself. However, every 5 weeks doesn't seem like too

much, to have a life. I have had the pump stop a few times and I am

reminded just how much I needed it. Also, I do still have breakthrough pain

every once in awhile; I have no idea why.

I will try to find out if Medtronic has a web site, so everyone interested

can read about Infusion Pumps. Many medications can be given this way. My

pump has half blood pressure drug and half morphine right now. Some blood

pressure drugs were found to reduce pain...it is not because I had high

blood pressure. I am sure many drugs will be given this way in the future,

and the cost will come down.

I feel my Dr. would have found a way for me to have this pump if my

insurance had not paid. Most of his patients are on disability, Medicaid,

or Medicare. I know they cover the pumps. I am one of a few of his

patients who works full time.

I'll try to post a URL for his pain clinic for those who want more

information.

Kay

M. Kay

kayfrank3@...

Re: chronic pain

Re; infusion pump