Re: Anyone else have problems describing your pain?

[Guest guest]

" Cheryl in AZ " wrote:

>

> What you describe is nothing unusual for this kind of condition, so it's

surprising your doctors don't seem to understand you.

Cheryl-

It's been deflating to still experience pain post discectomy now

2.5 years. I had high hopes of eliminating it since I'd waited so

long for something to be done, going bankrupt in the meantime, but it

didn't happen for me. Is it maybe that I'm still wanting to get pain

free and looking for another cause, but need to accept that isn't

likely to happen?

I have hopes of learning some reason why, despite my pain making

perfect sense to you and others here, I still feel inept when I

am asked to describe it by anyone. If it's someone outside of medical

appt, their eyes fog over before I get into the second sentence.

Inside a medical appt, they make me feel defensive.

I found out later by reading the medical reports that the original

PA had written that my MRI didn't match my complaints, because

although there definitely was evidence of real issues, the disc

problems should have been causing pain on the right side, and I was

complaining about the left side.

What I had told him was, I had been self managing right side pain

that had increased over the last 12 years (at that time) and had

sought treatment because it was so bad now that I was starting to

feel it on the left side too! I had woken up one morning and not been

able to get out of bed because whether I turned right or left I had

excruciating pain.

I didn't communicate well enough obviously. I caused delays myself

by marking on the picture of the body where it most hurt, the left

upper back because that was what was the newest, the latest, and

scaring me, that I felt it there now too. How is a patient to know

how to communicate effectively?

I can't believe some of the stuff I read in the reports, how

differently two people can see the same facts. It makes me want to do

what a 2 year old will do, lay their hands on both sides of your

face, and turn your head towards them to look them in the eye while

they try to tell you something effectively making you listen!!

Thanks for the validation. I think I'm going crazy sometimes.

in Oregon

[Guest guest]

Cheryl wrote:

>

> None of us are doctors, but what you describe sounds perfectly like

> pinched nerves coming out of the upper spine, such as that caused

by disc problems (or other similar causes).

>

> Have you had an MRI of the neck and back? That should show what is

> pressing on the nerves to cause these symptoms. What you describe

is nothing unusual for this kind of condition, so it's surprising your doctors

don't seem to understand you.

Cheryl-

I had an MRI before the surgery. Afterwards, I asked if they would

do another MRI to see that the anterior cervical discestomy had

worked to free the nerves? They said No, an MRI is only a tool.

I thought What? Don't you need to see that what you did worked? This PA was

really snotty towards me, said my symptoms didn't match the MRI and I had a

referral by my PCP to a different neurosurgeon as a second opinion who found

everything consistent and performed the surgery.

Anyway, before the surgery, I had both nerve roots impinged, no disc

left at C5/C6. They put in a donor disc.

I am wondering at what point the doctor recommends another MRI. or

catscan? I am wondering if I should pay for one myself out of my

backpayment when I get it.

It feels like they've given up on finding a cause for my pain. Shouldn't they

keep looking if it's still there after surgery?

Especially if it spreads as it has into my chest and down my right

side?

in Oregon