A proper intro

[Guest guest]

Moderator's note:

For those of us, who live in the states paracetamol, and acetaminophen

are the same thing.

Welcome to the group Alison. We are glad to have you, and all the new members in

the group.

Kaylene

Hi all,

My name is Alison & I live in Adelaide South Australia. I am engaged to a

wonderful guy who is an officer in the Royal Australian Air Force, so we get to

move around a bit. I also have a daughter who is in the Royal Australian Navy &

like all mums I am extremely proud of her :-)

Now for the bit about why I joined this list. Well I suffered from upper back

pain for many years. It could never be explained as to what was causing it,

however the pain was very real.

I was put onto a pain specialist in Sydney (where I lived at the time) & after

doing lots of tests he recommended nerve blocks to stop the pain.

I was advised that the worst thing that could happen to me was that I would end

up in a wheelchair. Then he laughed & said he had never had anything go wrong,

so any negative thing happening was extremely remote. I was never told of any

other thing that could go wrong.

So I had my first nerve blocks in 2000. It was wonderful! The pain was gone & I

could get on with life.

However about 3 years later the pain was back. This was to be expected as the

blocks do wear off. So the same specialist repeated them in 2003 & again in

2006. However the last ones were really the start of my living nightmare.

I came home from the procedure feeling pretty numb as always. The next day my

world fell apart. I woke up in horrible pain, It felt like someone was sending

huge electric shocks into the left hand side of my upper back.

I literally felt sick with the pain. I was seen straight away by the specialist

who was pretty dismissive until I explained in total detail what the pain was

like. He ordered an MRI & this came back

with my having a small cyst on the root of my T1 nerve cluster.

Well my specialist told me we had found the cause of my pain. In the next month

I was hospitalized 4 times due to pain & on the last time they decided to have a

neuro surgeon look at me.

It was then decided that the cyst needed to be removed & decompression of the

nerve as well. This was done & a day later I started physio. I carried on with

my own physio on discharge & did much more strenuous work than in the hospital.

However the pain was still there. So when I saw the neuro surgeon some two weeks

later & told him the pain was still there, he looked at me & told me it was

because I was not moving my arm enough or my back & that there was no cyst to be

found so it was a glitch on the MRI. I was floored & even more so when he told

me to stop all medication.

I went back to my pain specialist who thankfully was across the road from the

hospital & he told me to stay on all medications.

My pain specialist ordered some other tests & advised me we had to wait some 5

months before repeating the MRI as the bruising & swelling from the operation

would make it hard to read. So I stayed on the medications (with the dosage

being adjusted) until the next MRI. It came back with the same cyst in the same

place.

So again it was blamed. However at this time we knew that my partner had been

posted to Adelaide, so I was advised to get a new pain specialist & go from

there.

So I did this with the help of a new GP & was shocked when all he wanted to do

was up my pain medication. He was not interested in the fact that I also needed

a reconstruction of the left shoulder or anything else really.

So I got all the referrals from my GP & had the surgery done to

make sure it was not that which was causing all the pain, even though we doubted

it. By this time I was on 1200mg of Neurontin 3 times per day, oxycontin & a

codeine/paracetamol tablet.

I asked my GP for a referral to a neuro surgeon & he gave me one to probably the

best neuro surgeon in Australia.

I went to see him with hopes high, thinking if I get rid of the cyst the pain

would go. He requested all my notes from my pain specialist in Sydney, however a

2 line letter was all he got in return. He asked me if he could be blunt with me

& I asked him to go ahead. So the upshot was, the cyst I have is pretty normal,

most people have them & he doubted that it could or would cause me any problems

& it certainly did not warrant the surgery I had already been through.

He also said in light of the two line letter he received that he was reasonably

confident in stating that in his opinion the last nerve block had gone horribly

wrong on the left side of my body.

This is an opinion that I later found out that my GP shares. He had also tried

to get all my medical notes to no avail from my old pain specialist.

So where am I at today? Well I am waiting to see a pain clinic at the

hospital. Its a public clinic so it has a huge wait list of 2-3 years.

Unfortunately due to my seeing a pain specialist privately my GP hadn't asked

for me to go on their wait list until late last year.

The clinic is full of different specialists & attached to a hospital where they

basically do not stop until they know what is causing the pain & then can treat

it properly.

However I have a long wait for this. Recently my left arm started to go numb.

Not all of it, just a large section & also my hand & a few of my fingers. When I

saw my GP about it he told me it was to be expected with what is wrong with me.

He didn't like it when I

asked what else I can expect. My left arm is very weak & its numb now

more often than not.

The Neurontin & other drugs are horribly expensive. I am unable to work so we

live on the one wage which is hard when you have a mortgage etc. So the

Neurontin was switched to Lyrica which at least is some $160 a month cheaper!

So I am on 300mg Lyrica 2x per day. 20mg Oxycontin 3x per day. 10mg

Oxynorm (fast release) for breakthrough pain & a tablet called Panadeine forte

which is 30mg codeine & 500mg paracetamol. I know the last one definitely does

my kidneys no good.

I suffer terrible hot flushes which has been put down to the Lyrica although the

Neurontin did it to me as well. What I really hate though is the fact that both

Lyrica & Neurontin have made my memory really bad. I forget words that I need, I

forget what I am talking about etc. My specialist confirmed it was those drugs

doing this to me.

I am sorry this has been so long, however I thought if I wrote it all

maybe someone would have some ideas as I am all out of them. I feel like a

burden on my fiance who was so hard to come home to start all over again on the

days where I have been literally in too much pain to move.

I feel alone as although he tries, he doesn't really understand this. You can't

see pain like you can an injury so its hard to understand that people like me

are sick.

Alison

--

Alison

Snowstars Norwegian Forest Cats

http://www.snowstars.com