Re: new revision struggles & pain management

[Guest guest]

Hi Robin,

I think I must be the Bonnie that mentioned. I've been a member

of this group for many years. I am 68 years old and had my revision

surgery with Dr. Boachie, in NYC, 12 and 1/2 years ago. I read all

the groups messages and write every so often.

knows I think it's a good idea for any of seeing a pain doc for

the first time after revision to bring along x-rays and an op report.

Those show the doc clearly that we are not just any fusion patient

seeking pain meds. After all, many spine specialists don't know much

about revision surgery, so there's no reason to believe that a pain

doc would be familiar with it, either. Every pain doc needs to be

somewhat suspicious of new patients because of governmental

regulations regarding prescribing certain meds and because druggies do

seek new sources their drugs. The new pain doc really does need to be

careful about who he treats. And we patients need to understand their

caution. Dealing with a pain doc is a two way street. We need to

understand their role and they need to understand us. It's really

teamwork.

We also need not give up seeking the pain care we need. It took me

three tries to get the right pain doc. Do you have a doc that you see

for your fibromyalgia? Or for your arthritis? If so, perhaps they

can help you get proper pain care, or refer you to another pain

clinic. Have you heard from your rehab doctor yet? Can he take you

on as a patient now? Just how far is his office from where you live?

You said you take 20 mg of methadone 3 times per day, and that you

also take meds for your arthritis and fibromyalgia. What do you take

for the fibromyalgia and for arthritis?

I think it's also important that you figure out just what you expect

from your pain meds, and communicate that to your pain doc. I hope

you understand that a pain doc's role, at least as I see it, is to

make you comfortable enough to carry on a decent lifestyle, but not to

make you pain free.

How are you doing with your incision? I hope it's still improving.

Good luck with your recovery and with finding a pain doc you can work

with.

Bonnie

[Guest guest]

Hi Bonnie,

Thanks for your reply. I have seen some of your posts and thought it

might be you was speaking of. As far as what I expect of the

pain meds, it would be nice if I were pain free but I know that is not

realistic. The regime I am on now seems to be working and I am quite

happy with how I am doing. I had become so debilitated due to the

arthritis, fibromyalgia and rapid progression of flatback that I was

miserable and housebound. I think I finally scheduled the surgery

with the hope of being looked at and paid attention to so that maybe

somehow someone would make the right change and pain management might

be possible.

I had planned to switch my PCP after my surgery because the one I was

seeing refused to help me any further with pain even though it was she

who prescribed the methadone for more than a year up to then. The new

PCP agreed to write the Rx and to help me find the appropriate pain

doc to follow it up or give his approval. I had already been to a few

pain clinics where they only did interventions (procedures). I had

seen a neurologist in the past who had nothing to add. I had also

been to rheumatologists. One did prescribe meds, but after a while

became confrontational and the relationship ended due to him becoming

verbally abusive and condescending. The other rheumatologist did

extensive workups blood work, urine immune assays, x-rays, and bone

scans. He ruled out many things and said that the only thing that

showed was a significant exposure to the Epstein Barr virus at some

point in the remote past. He said that that did not mean that I did

not suffer from pain and said he believed it to be fibromyalgia. He

would not, however prescribe medications. He left that to the PCP.

He gave me samples of tramadol. That is what I took for pain for more

than 15 years - prescribed by the PCP. I saw this rheumatologist for

about a year. Eventually, he saw no need to continue seeing me since

he wasn't actively doing anything for me.

The other meds I am on for the fibromyalgia are from a psychiatrist

and pain doc (from a pain intervention center). I see the

psychiatrist monthly for med evals and have for almost 2 years. He

prescribes cymbalta, amytriptyline, and mirtazipine. The pain doc

who prescribed the lyrica refills and changes med /doses by phone. He

doesn't want to take up office time when he could be doing other

procedures, so I don't see him for appointments The other meds that I

take as needed are lorazepam, flexeril, sudafed, and ambien. I

haven't taken any of the as needed meds since before my revision. I

have diazepam for muscle spasms and dillaudid for break through or

post-op pain, neither of which I take much because the methadone is

working so well most of the time. The revision and the rehab doctor

have really done a remarkable job of managing my pain. Now that I am

doing better, the new PCP is stone walling me and the pain clinic she

sent me to is unwilling to work with me. The pain doc there would not

even look at the information I brought to him, whether it was

requested in the new patient instructions or not.

At this point, I am seeing the rehab doc tomorrow. The way I see it,

he is my only hope. Financially, I am having much stress which isn't

helping my healing. Life is just so fragile at this point. Thank you

for your support. How is revision like after 10+ years? Yes, I am

still hanging on the base of the incision. The surgeon has made us go

into town weekly for more than 2 months now so he could keep an eye on

it. The rehab doctor is about 45 minutes away as well and I am not

comfortable having a PCP so far away when I get ill. I could never

get there on my own. At this point, I have no other solution. I

wasn't sure this stuff was appropriate to post, but maybe it will help

someone else in their journey.

Robin

[Guest guest]

Robin,

You sure have had lots of challenges, but lets just hope that the doctor you see

today is " just the ticket " . I will be hoping for that for you.

Take Care, Cam

[Guest guest]

Hi Robin,

You've been saying that you saw (or still see, I'm confused) a

" psychiatrist " who monitors your drugs. Did you possibly mean a

" physiatrist " Big difference between the two, so I'm trying to get it

right.

Bonnie

[Guest guest]

Bonnie,

Yeah, I know the difference. At one point I saw a physiatrist, but I was not

impressed. The psychiatrist I see monthly prescribes many of the meds I am on

for the fibromyalgia and I've been seeing him for nearly 2 years. Why do you

ask?

>

> Hi Robin,

>

> You've been saying that you saw (or still see, I'm confused) a

> " psychiatrist " who monitors your drugs. Did you possibly mean a

> " physiatrist " Big difference between the two, so I'm trying to get it

> right.

>

> Bonnie

>

[Guest guest]

HI Robin,

I only asked because I was confused and wanted to be sure I got your

story correctly. I think it's more common for a physiatrist to take

on the duties of monitoring pain meds, so I wanted to make sure you

meant it when you said " psychiatrist'. Not everyone is familiar with

physiatrists and and if you were one of those, it could have been just

a typo. Like said, I just wanted to get it right.

Bonnie