my story

October 24, 2003

Mark,

I am sorry to hear you are still in pain. Based on my very short experience

in this matter. I think a solid fusion IS a contributor to pain relief.

The one person that talked about the lumbar fusion that the doc said the

fuse at one month looked like 4 months, he had no pain. A local friend and

doctor who had the surgery in neck C5-C6, broke his vertebrae where the

screws were after one month. Does'nt really know how. But his fusion was

going fast and he felt great until the fracture. Then he had a 3 level

fusion, very complicated. Took 6 months to fuse the big mess. Said he did

not feel well for a year. Thinks the long fuse process along with all that

titanium was the issue. He says the body tries for a while to reject the

metal and you kind of feel unwell until the body decides to give up. Not a

pain feeling but a sick feeling.

SO YOUR QUESTIONS: YES, if I were you, I would go see another radiologist

and doctor for second opinion. Go see 2 different sets independently. Go

see an OSS and a neruo. My opinion, if you see 10 doctors, you get 3

answers to the same question. There is always a little difference in

option. I saw 3 doctors, 2 said I had an issue and surgery would fix it,

one said I was normal and it was just stress. OK, I get it, I live pain

free in the neck for 36 years, get rear ended on highway, and go immediately

into pain for a year. Yeah, stress sounds about right.

AS FOR YOUR X-RAY: you said your radiologist said no movement. That sounds

great!! Very positive. My one month x-ray says I have movement slightly in

upper and " more " in lower. (c3/4 fusion) But I see the grey triangles of

bone growth that are asymmetric and have to be mother nature growing bone.

Also, a good piece of advice I got here, but I don't follow it, is DON'T try

to read your own x-ray. We just don't have the skill. Go see that new doc!

I was told no anti-inflams. A week after surgery. I went for my checkup

and complained about my swollen neck. Told him I was taking some of my old

celebrex to help. The OSS flipped out. Said taking 3-4 pills wont hurt but

don't ever take something I don't give you and his opinion was anti-inflams

are bad. I want to take some for the mild surgery pain I have now from

inflammation, I rather take anit-inflam than a narcotic. I still can't

swallow very well and don't eat a lot of things. Doc said NO. 3-6 months

if bone fuses completely.

_____

From: Mark [mailto:ristic@...]

Sent: Thursday, October 23, 2003 7:42 PM

spinaldisorderssupport

Subject: My Story

Hi Everyone,

I have visited this site quite often and finally am ready to share

my story. First I feel for everyone here that lives with daily pain.

It is absolutely a horrible thing to have to live with all the time.

I wish I could wave God's hand and make everyone's pain go away. i

know there are many people that have had success with back and neck

surgeries but unfortunately they are not the ones that post hear

often. I have had low back pain for about 4 1/2 years now and 1 year

following surgery.

I am a 43 old male and had a fusion of the L4-L5 disc done 10-1-02.

My doctor who is a neurosurgeon did a posterior fusion and a

lamminectomy with 4 screws and two rods and a bak cage inserted into

the disc space. I had bone taken from my hip to act as a grafting

material that was inserted into the cage. Prior to the surgery I also

had a discogram performed on L3-L4, L4-L5,L5-S1 and confirmed that L4-

L5 was the pain generator. I also thought this test was not that

painful as some have said. So my diagnosis was degenerative disc

disease at L4-L5.

Well its been over a year and I still have an incredible amount of

pain. I don't take a lot of pain meds but do take some. I have been

through physical therapy and am now in an athletic club with a trainer

and also doing some yoga. Needless to say I am very frustrated with

this. One thing that I was wondering was that I am very concerned

about whether I am fused or not. I saw today that there has been

alot of talk about x-rays. I was aware of the 3 inhibitors to bone

growth (old age, overweight, anti-inflamatories). My doctor said I was

great with the first two but needed to stop taking relafen(anti-

inflamation). Unfortunately I still took after my surgery Ibuprophen(

about 6 tabs a day for about 3months. Now my surgeon said these were

ok to take after the surgery. He wasn't a believer in the nsaids

being inhibitors to bone growth theory. After 3 months when I found

out more about these I stopped. I was shown x-rays prior to my

surgery of what a solid fusion should look like and it is very easy

to see all the bone growth. I was convinced that after 3 years of

analyzing my pain ( prolonged sitting, bending,mechanics) of that

diseased joint, that fusing and taking the movement out of that joint

it would solve my problems. My surgeon said that although he could

not guarantee that my all my pain would be solved by the surgery, he

would fall flat on his face if I didn't fuse. This is where I was

hoping to get some help from some of you folks. After one month my x-

ray showed no growth according to the Radiologist. My surgeon said he

thought it would be fine. I wasn't very concerned at this point. At

the three month x-ray showed no change. Now I was very concerned. My

surgeon said the fusion was probably going on in the cage and the

cage was blocking the view. I was very skeptical of this, especially

since I was not getting better. At six months no change again. I had

a CT done at this time to give a better picture. I spoke with the

radiologist and he said although he could not determine for sure, he

did not see a lot of fusing going on. But my surgeon said that it was

fusing. I could not tell on the CT, but the xrays look virtually

identical to the day of my surgery. Now at one year they still look

the same. We have all seen an what an x-ray looks like of our spines.

The vertebra(bones) are all light and the discs are just dark spaces.

When we fuse those spaces start to lighten up in various degrees like

the adjacent vertebrae. I am starting to believe that amount of bone

growth we achieve in our fusion can be a direct correlation to how

much better we feel. Or at least have enough growth to achieve union

of the two vertebrae. I know at this time there is probably no more

bone growth if any, its been too long. I think most of the growth

happens in the first 6 months. I was wondering if I should get other

opinions my films from another doctor or if any of you folks have had

similar issues with the bone growth issue and have ideas to find out

for sure whether you are fused. I will mention that I did have

flexion and extension x-rays done at the same time as my other ones.

These x-rays for those who don't know are done to see if there is

movement in the disc space when you are bent forwards and backwards.

It is one way to check for fusion of the vertebrae. My result from

this was no movement. And when I put these two on top of each other

they lined up perfectly at that joint. Meaning that the front and the

back of the disc space were the same when you bend forward or

backword. This is one indication of fusion (union) of the vertebrae.

But this could also be a result of a very rigid construct( bolts,

screws, and cage). So to sum up and I sorry that I was so long winded

but I thought that by describing and teaching a little what I know

and don't know that we can help each other. I am still in misery,

not sure about whether I am fused. Does anyone know of any other ways

to check for solid fusion and if anyone knows if varying degrees of

bone growth correlate to better or worse outcomes or if it just has

to be joined together regardless of growth. I wish all who suffer

well, Thanks in advance. Mark

.

November 22, 2003

Kent

get a biopsy first!!!!!!! if your liver is ok I would say no to the

treatment!! but regardless you need a biospsy!! I have had the same problem as

you all my life and it was just chocked up to me being a woman !!!!!!!!!!!!

I almost died as I had no blood platelets I was bruising on the back of my

legs bad, and went to the doc for something else, and he saw those ran a test

and told me to get my self to the emergency room at Galveston!! I had idiopathic

something?? idiopathic-- meaning who the hell knowsLOL but now the say it was

caused by the Hep c-- and no you cant sue the basterds__ I got mine I am pretty

sure from blood 20 years ago but I can't prove it!! but as I said they ,,just

thought a I was a crazy lady, wanting attention with all my aches and pains.

you were unlucky they don't usually treat a man like that!! and why they never

checked your blood for hep is beyond me!! before they knew what it was they

called it non a non b-- but when they finely knew what it was and what it could

do they told me!!

but do NOT take any more celebrex!!

CAROL

THE SIGN ON MY DOOR SAYS

GO AHEAD AND KNOCK

I " M ALREADY DISTURBED

My story

I have had a very long and messed up ordeal finding out why I have

had increasing health problems over the last 10 years. I have been

treated for everything from sleep apnea, depression, anxiety,

arthritis, and high triglycerides and checked for lyme disease, CFS

and Fybromyalgia. I may have left out a few, almost bleed to death

from a post op bleed from the operation on my throat, (never be the

last one to be operated on the day your surgeon goes on vacation). I

used to be an auto mechanic, the fumes from solvents, exhaust and

gasoline made me feel ill. I was also having trouble with

concentration and my heart would do some strange things like it was

going to jump out of my chest. It got to the point that I had to

close my shop because of the health problems, headaches were a daily

thing. I could no longer concentrate on what I was doing and

remember how to do things I knew I could do. I figured if I got away

from the toxins that I would get better, thinking that 27 years of

being exposed to fumes was the problem. I started going back to

school to learn a different trade, computer networks but was still

struggling with energy problems and headaches. They gave me Celebrex

for joint pain and that helped with the headaches but this spring

things got to the point that I could not function any more. I was

having such a problem with fatigue that I could not study without

falling asleep on my books. The symptoms have grown to the point

that they no longer could say that it's in my head. At this point I

was going to a almost free clinic, they finally with my help looked

into why I would have high triglycerides and not high cholesterol.

This had been a problem for at least 15 years but no one would

explore why that was. One person at the clinic asked if I had used

intravenous drugs, the answer to that is yes. It has been 22 years

since the last time that I did that and I quit drinking and smoking

11 years ago in an attempt to get healthy. The test came back

positive for HCV, I have since got on state health care and I am

awaiting approval for the meds. I have a big problem with the health

care system for not listening to what I was telling them. The liver

enzymes were over 400 before I quit drinking and never came down to

anything less than the top of the range. I complained about dark

urine, pain in my side and the stuff I mentioned above. They would

not listen to me, just wanted to give my antidepressants and get me

out of the office. I hope this has not been the treatment that

everyone in this group has received.

I went to the specialist 2 weeks ago he said that a biopsy was not

necessary. He would treat me no mater what the results are. Is this

a standard practice? At this point I don't trust anyone that is part

of the medical community. I hope I am only a rare case in this

situation, if not, has anyone been able to sue their Dr. for

improper diagnosis or incompetence? Thank you for the opportunity to

vent, Kent Gardner.

November 22, 2003

That you for your input. They wanted to do the treatments based on

some blood tests. Thest are RNA quantity PCR result 1219900 IU/mL

and PCR (copies/ML) result 2439800. The Dr. did give me the choise

of having the biopsy but said with the readings from my blood that I

needed treatment. They are telling me that taking the Celebrex vs 12

to 16 ibuprofen a day is better. This was the only way I could make

life bearable with the headaches. I kind of think my liver is not ok

because of the sensitivity to any type of petrolium based fumes. I

feel ill from the lest amount of this, I ride a motorcycle and stay

away from trafic when I can. There is no emisions test in this state

but I can tell every vehicle that would not pass one if there was,

that inc. some motorcycles.

>

> Kent

> get a biopsy first!!!!!!! if your liver is ok I would say no to

the treatment!! but regardless you need a biospsy!! I have had the

same problem as you all my life and it was just chocked up to me

being a woman !!!!!!!!!!!!

> I almost died as I had no blood platelets I was bruising on the

back of my legs bad, and went to the doc for something else, and he

saw those ran a test and told me to get my self to the emergency

room at Galveston!! I had idiopathic something?? idiopathic--

meaning who the hell knowsLOL but now the say it was caused by the

Hep c-- and no you cant sue the basterds__ I got mine I am pretty

sure from blood 20 years ago but I can't prove it!! but as I said

they ,,just thought a I was a crazy lady, wanting attention with all

my aches and pains. you were unlucky they don't usually treat a

man like that!! and why they never checked your blood for hep is

beyond me!! before they knew what it was they called it non a non b--

but when they finely knew what it was and what it could do they

told me!!

> but do NOT take any more celebrex!!

> CAROL

>

> THE SIGN ON MY DOOR SAYS

> GO AHEAD AND KNOCK

> I " M ALREADY DISTURBED

>

> My story

>

> I have had a very long and messed up ordeal finding out why I

have

> had increasing health problems over the last 10 years. I have

been

> treated for everything from sleep apnea, depression, anxiety,

> arthritis, and high triglycerides and checked for lyme

disease, CFS

> and Fybromyalgia. I may have left out a few, almost bleed to

death

> from a post op bleed from the operation on my throat, (never

be the

> last one to be operated on the day your surgeon goes on

vacation). I

> used to be an auto mechanic, the fumes from solvents, exhaust

and

> gasoline made me feel ill. I was also having trouble with

> concentration and my heart would do some strange things like

it was

> going to jump out of my chest. It got to the point that I had

to

> close my shop because of the health problems, headaches were a

daily

> thing. I could no longer concentrate on what I was doing and

> remember how to do things I knew I could do. I figured if I

got away

> from the toxins that I would get better, thinking that 27

years of

> being exposed to fumes was the problem. I started going back

to

> school to learn a different trade, computer networks but was

still

> struggling with energy problems and headaches. They gave me

Celebrex

> for joint pain and that helped with the headaches but this

spring

> things got to the point that I could not function any more. I

was

> having such a problem with fatigue that I could not study

without

> falling asleep on my books. The symptoms have grown to the

point

> that they no longer could say that it's in my head. At this

point I

> was going to a almost free clinic, they finally with my help

looked

> into why I would have high triglycerides and not high

cholesterol.

> This had been a problem for at least 15 years but no one would

> explore why that was. One person at the clinic asked if I had

used

> intravenous drugs, the answer to that is yes. It has been 22

years

> since the last time that I did that and I quit drinking and

smoking

> 11 years ago in an attempt to get healthy. The test came back

> positive for HCV, I have since got on state health care and I

am

> awaiting approval for the meds. I have a big problem with the

health

> care system for not listening to what I was telling them. The

liver

> enzymes were over 400 before I quit drinking and never came

down to

> anything less than the top of the range. I complained about

dark

> urine, pain in my side and the stuff I mentioned above. They

would

> not listen to me, just wanted to give my antidepressants and

get me

> out of the office. I hope this has not been the treatment that

> everyone in this group has received.

> I went to the specialist 2 weeks ago he said that a biopsy was

not

> necessary. He would treat me no mater what the results are. Is

this

> a standard practice? At this point I don't trust anyone that

is part

> of the medical community. I hope I am only a rare case in this

> situation, if not, has anyone been able to sue their Dr. for

> improper diagnosis or incompetence? Thank you for the

opportunity to

> vent, Kent Gardner.

>

November 23, 2003

Hi Kent, welcome to the group. You are right to not blindly trust doctors, but

to investigate HCV on your own. Most of us have had similar experiences as

yours. The biggest problem is that Hepatitis C was not identified clearly until

1992, and many doctors are still unaware of how prevalent a problem it is. I

was diagnosed almost accidently last year. During a routine physical, my doctor

saw the scars on my leg and asked if I ever had a blood transfusion. When I

said yes, she said that as long as she had already drawn my blood, why don't we

check for Hep C? It was in the top of her mind because two of her friends had

recently been diagnosed. She said that if it hadn't been for that, she would

have never thought to look for it. When she called me with the diagnosis, I

felt like I got hit by a truck! I'm so grateful that I found this list, the

people here really brought me back down to earth.

I had been to 6 doctors in 10 years, trying to find out why I was so dead tired

all the time, and why my liver levels were all over the map. I had one doctor

accuse me of being a " closet alcoholic " . If it was possible, he's the guy I'd

like to sue up the wazoo!

You *do* need to get a liver biopsy, and you need to find out what genotype you

are. Even though you have symptoms, it doesn't necessarily mean you have liver

damage. You need all the information in front of you so that you can make an

informed decision about your treatment. If you are genotype 1A or 1B, your

chances of responding to treatment are something like 30%. If you have a

different genotype, you may respond very well to treatment.

The reason I'm telling you this is that for many people, treatment is very

debilitating, and can cause life-long problems of its own. There are people on

this list who can tell you more about this than I can. Also, get copies of all

your tests from your doctor. You may want to change doctors at some point, and

you will have all your tests to take to a new doctor.

There are some simple things you can do on your own that may help you feel

better. Drink *lots* of water, 1 oz. for every 2# of body weight. You'll be up

a couple of times a night at the beginning until your body gets used to the

water, but your body will adjust. Exercise - even if at the beginning, you walk

to the corner and back and then take a 2-hour nap, your energy will begin to

increase. Stay away from Iron - it's toxic to your liver. You can eat foods

high in iron, but just be sure not to have anything with Vitamin C in it the

same day. Your body can't absorb Iron without Vitamin C to go along with it.

Eat 60 grams of protein a day. Protein is what gives your body energy. If food

makes you sick, go to a good health food store and get protein drinks *without*

iron in them. Take a good multivitamin without Iron - I take Centrum Silver,

but the Wal-Mart brand is just as good.

And one of the biggest differences I saw for myself was when I gave myself

permission to take naps. Many mornings, I would wake up at 7:00 and feel like I

never slept. By 9:00, I was really dragging, but I told myself it was

ridiculous to lay down 2 hours after I got up. Then I'd end up hitting a wall

in the afternoon, and sleeping for 2 hours or more. I found that if I just gave

into the nap when I needed it, I might only sleep for 20 minutes or so, and then

be able to get on with my day. I don't have nearly the problem with fatigue any

more, and rarely need to take naps. I couldn't believe how making a few simple

changes made such a difference.

If you do decide to take the treatment, many people will tell you to have your

doctor put you on antidepressants first, because depression is a common side

effect of treatment.

Because of the good information I got from the people on this list, I decided

not to take the treatment for now. I did the things I suggested previously, and

I feel better than I have in years. My liver is still in good shape, my genotype

is 1B and I've had Hep C for over 40 years. It's likely that this virus will

never cause me harm.

I guess the biggest point I want to make is to tell you to take your time in

deciding your course of action. Just because you finally got a diagnosis,

doesn't mean you have to do something about it right away. You've had this for

over 20 years, so it isn't something that just popped up. Another caution is to

be *very* careful about alternative treatments. A lot of them can be very

harmful to your health. There are a lot of good links posted on this website,

you may want to check them out.

You might want to check with local hospitals to see if there is a Hepatitis C

support group in your area. It really helps to connect other faces to this

virus, and see that we are all normal people who just happened to be unlucky

enough to contract this dragon.

Sorry for the information overload, but I've been where you are and know how it

feels. Vent away any time, that's what we're here for!

Best to you,

Marilyn