Re: Discogram question, my back and neck problems

[Guest guest]

I am a 33-year-old woman. It probably does not help me in situations

with male doctors that I am female and I look much younger than I

am. The other day, I bought my first lottery ticket in maybe a year

and I was carded because they thought I looked too young. I was in 2

bad car accidents that hurt me at ages 28 and 30. Before that I also

got fibromyalgia at age 24. Back to the discograms...

I had constant pain even before the discogram between 8 - 9.5. I

call 9.5 the highest anyone can get to in normal life. The first

doctor to give me a discogram did it on my low back and he was

injecting with pure fervor which is when I got to a 10/10, he didn't

stop injecting right away when I was crying and screaming

uncontrollably. He acted like I was nuts to be in that much pain and

was giving me crap for screaming. I honestly had no control over my

bodily reactions during some of that test and I would describe it as

torture. I thought of how in movies they show them torturing someone

and that is how it felt. He was the one my back doctor recommended

to do my discogram. I can only presume it was because the more dye

they inject, the more they can see where it is coming out of the disk

or whatever. My disks had tears so it was coming out of them.

Knowing how horrible that pain was, when my neck doctor sent me in

for discograms on 2 different occasions, several months or more

later, and several months apart from each other, I picked a different

discogram doctor. (I wanted to know before my low back fusion if I

only had 1-2 disks bad in my neck because they might have done low

back and neck surgeries on the same day, in retrospect, I am glad I

didn't have both surgeries on the same day - it was hard enough for

me after the low back surgery.) Before he even did the test, I

explained about my problems with the test before and said I thought

the previous doctor kept going too long after I asked him to stop.

The new doctor was very nice and compassionate and said I could tell

him as soon as I felt any increase in my pain (for me normally a

baseline of 7.5 but goes up to 9.5 very easily with certain

activities).

As soon as I felt anymore pressure or pain in any disk he tested, I

told him. He would look at the screen to see if he could clearly see

the dye and if it was coming out of the disk. If he could see it

clealy, he would stop. If he couldn't see it, he would slowly put a

little more dye in. As a result, my neck disks that were bad got

between 9 - 9.5 (which they often do for me in normal life), but they

never got to 10 like with my back discogram and I did not have any

uncontrollable screaming or crying.

Also, when they were testing my neck disks, I had to be very careful

and lie still because they sometimes had to go through the front/side

of my neck and I could feel it in my throat. I had to be careful not

to move my tongue/throat much and to try to breathe very carefully

without much motion. I was glad I had the back done first, because I

had a better idea of what to expect for the neck. When I had to go

in for my 2nd time on my neck I picked the same guy who had

compassion and was better on my neck the first time.

The reason I had to go in for a 2nd time on the neck was because the

first time they tested C3-C7 which is usually where most people have

problems. They also said they don't like to test too many disks at

one time or the pain can be too bad (ya think?). When they found out

the 3 disks C3-C6 were bad, they wanted to know if the disk above

that was bad or good, so they could tell if they could fuse the bad

ones to that one above and to C6-C7 below which was good.

Unfortunately, C2-C3 was also bad, so they couldn't fuse to it, and

it meant I have 4 bad disks in a row in my neck out of 5 tested.

They apparently have a very hard time testing above C2 or below C7

because they are very hard to get a good angle to go in to. They

tried to test C7-T1 before on me, but I had such extreme pain and

referred pain when they were trying to get the needle even remotely

in the right position (it wasn't to the disk yet) and it was starting

to hit a bone (maybe my collar bone? I don't remember?) that they

had to quit.

Most information I could find on the web about neck surgery refers to

one or two disks in the neck being bad. I saw 3 or 4 surgeons about

my neck and none of them thought surgery was a very good idea for me,

especially since I was only around 30 at the time and they said if I

had the surgery, I would probably never drive again and probably have

such limited motion for the rest of my life. As it is, my neck pain

(from turning my neck side to side to look at other cars to avoid

accidents and also to look to back up) limits me to driving 5-10 min.

away and 5-10 min. back in one day, but I can't drive that far every

day. Just some days.

Once in a long time, I try to drive 15-20 min. away, but then my

constant neck pain goes up to around 9 - 9.5 and I get a constant

excruciating headache that won't go away for anywhere from 1 full day

to 5 days straight and sometimes I get shooting pain through my

shoulders and down my arms into my fingers (along the ulnar nerves)

with it. So, needless to say, I don't drive that far that if I can

help it.

When they tested C2-C3 for me when that was the only one they were

testing that day, it caused the exact same kinds of pain and referred

pain I get after driving and it lasted for several days, just like it

does after driving too far. C2-C3 is close to the top of the neck,

close to where the neck and head come together, so it probably makes

sense for that to be one that causes me a lot of problems from moving

my neck side to side.

I also get a lot of increased pain and problems from looking up or

down for long. For example, looking up for 5 min. or less at a home

improvement store at ceiling lights (wanted to buy some) made me hurt

something awful and get dizzy and feel really weird.

I've never heard about doctors not wanting discograms. My back and

neck surgeons all wanted discograms before they would decide on or go

forward with surgery. They never mentioned myelograms (spelling?).

I think they were all orthopedic surgeons. Over the years, I saw

around 3-4 neurologists, 1 of which said all my tests and MRI were

normal (I hadn't had the discograms yet, and maybe that was only when

I had fibromyalgia, but not the accidents yet) and 2 neurologists

(from my same HMO) told me everything was in my head and I needed to

see a mental health professional. (I learned after the fact that

neurologists from the same place told my sister and my dad the same

thing about it being in their heads when they had back injuries which

were later diagnosed and pretty successfully treated.)

My back surgeon here in Minnesota has patients coming from all

different states to see him. I think he is a good and compassionate

guy. He is the most supportive doctor I have run into about my

trying to get social security disability (I'm still appealing) and

also was helpful when I was trying to get settlements from the 2 bad

car accidents. I just wish he had things documented better for my

social security case.

My sister was injured years ago when she was around 16 in a

gymnastics accident and he did her back surgery when she was 18. She

was much improved when 2 years later she was in a bad car accident.

He did her 2nd back surgery and she improved so much. She is younger

than me and had been through other surgeries related to her car

accident (different than mine), too - shoulder, elbow, knee.

At the time I was deciding about having back surgery, my sister was

working full-time at a great career job, attending an MBA program at

night, owned a nice good-sized single family home she took care of by

herself (she lives alone, does all the mowing, snowblowing,

housecleaning, etc.) and has her own big dog she walks and takes care

of and a cat. I thought if I could even feel 1/2 as good as her

after back surgery, I'd be thrilled, so I chose the same back surgeon

she had. That back surgeon also helped my dad with braces and pain

meds and stuff after he was in a bad car accident. The surgeon jokes

we have bad luck in our family with car accidents and we'd better not

get in any more.

Anyway, my low back surgery was not very successful. Initially it

seemed to help, but I wasn't sure later how much of that was due to

all the time I was laying down and icing it. At first after surgery

I could only be out of bed 3-5 hours a day total. I still have

constant pain that easily goes to a 9.5 with not much activity.

I found that after my back surgery I had a lot of problems with all

my other painful body parts from the car accident injuries, because

of trying to compensate for not being able to bend or twist my back.

I had to bend with my knees, so my bad knee got worse. I was doing

more with my shoulders and they were bad from the accidents but got

worse after the back surgery.

My fibromyalgia was really bad after the surgery and my sensitivity

to chemicals and medications was a problem. I became very

deconditioned because of not being able to be up out of bed very long

in a day, because my back pain would be sooo bad and I'd get such

terrible shooting pains in my legs if I stood or walked much in a

day.

The fibromyalgia pain made it very hard to exercise to help my

muscles. I found physical therapy to make me incapacitated for so

many days afterwards (and unable to do the normal survival things I

needed to be doing) and the pain to be sooo bad it was making me

suicidal, so I quit physical therapy. Over time I tried it several

different times at different places, and some were better than

others, but so many of the PT people give me exercises for one part

of my body that make other parts of my body worse.

I decided to quit PT and make a conscious effort on my part to just

gradually increase normal life things I needed to do to survive -

gradually walk a little further in the grocery store or on errands (I

paid people to drive me and lift the heavy things), gradually do a

little more around the house - do a small load of laundry, gradually

increase to a little larger load of laundry, gradually increase to

doing more than one load in a day, do more dishes at a time, etc.

Gradually do more of the things around the house that I was paying

people to help me with. To gradually sit up and stand up longer in

the day (spend less time in bed, have less times I needed to lay down

during the day because of my back or neck pain). It didn't happen

overnight, but I could definitely see improvements whenever I thought

back to what I could do 6 months before. So in 6 month increments,

my progress was pretty noticeable to me. Now, it's been over 2 1/2

years since the back surgery and I don't feel like I'm in survival

mode anymore. I haven't paid anyone to help me in several months

(ok - the house doesn't look as clean as when I paid people, but it's

not horrible either, and I'm not getting as far away on errands, but

I am doing pretty well). I can't work at all, but I am getting

better at taking care of things around the house and making sure I

get my things on errands (I drive myself to some close places - it

helped when I moved closer to more shops I go to; sometimes a

relative drives me on a few errands if I ask; if things are too bad

in a week, I order groceries online and they deliver them to my

house).

Sorry this got so long. I got carried away. I just haven't

communicated with anyone about all this stuff in quite a while and it

is nice to be able to express it, because I often think about it, I

just don't always feel like I can talk to people I know about it -

some of them were so judgemental when I was so upset and having so

many problems after my back surgery. Thank you so much for listening

and being here. Thanks for any and all replies to my messages. I

also want to say a huge " Thank you! " to the moderators, I can't

believe the volume of messages and how well you are keeping up with

them. Thanks!

Gentle hugs,

Mara

Snip, Snip

> My doctor was injecting with pure fervor....

>

> you've got quite a few bad disks... Genetic or accident?

>

>