Need advice about pain and pain management! Crying time!

[BadKitty]

Thanks for the concern, everyone!
I've been trying different things over the weekend, but have figured out that the Oxycontin makes my head spin and my ears ring even without the Oxycodone. Alone, it doesn't manage the pain at all, just makes me dizzy. With Oxycodone, it helps a lot with the pain, but makes me sick too. I don't understand this, since I was taking it in the hospital the whole time without feeling dizzy. It feels like being overmedicated.

It doesn't seem right that I'm left here floundering around in the dark; I managed to walk around the block today, but had increasing pain with muscle spasms in the back and ribs the whole time. Why can't they do something about that? Someone here said Valium helped with their cramps... this is just so discouraging.

A pain management doctor was also suggested, but it takes a while to get in to see them.

I''ll talk to the surgeon's office tomorrow, and hope they help me. I only have enough Oxycodone to last until 4 pm tomorrow; they won't leave me without meds at all! I'm so worried - I've slept through my meds before and the feeling is incredibly bad.

Wish me luck tomorrow! Yeah!

[leahdragonfly]

Dear Juliet,

I am sorry to hear that you're still having such a hard time with pain control. I was changed to oral meds in the hospital and then sent home with prescriptions for the same stuff, so it was not difficult to manage my meds at home.

I too did not tolerate the oxycontin well at all, and I did not find it to help significantly with the pain. So when I got home at 6 days post-op I tapered off oxycontin 1 tab every 12 hours to start, then off within a few days w/o difficulty. I started out taking oxycodone 5 mg, two tabs, every 6 hours, then decreased to one tab, then lengthened out the interval carefully. I had two episodes of feeling sweaty, nauseated and extremely uneasy when I went too long between pills. I tapered off the intervals, then I reduced to 1/2 tab per dose, then finally off. I then switched to tramadol and tylenol around 2 weeks post-op, because I could not stand the nausea and vomitting from oxycodone. My surgeon, Dr Robert Hart at OHSU, has a wonderful PA who manages the post-op patients, and she was wonderful in working with me on prescriptions. No problem at all getting enough meds.

You may need to be very assertive on the phone today, but someone needs to give you appropriate prescriptions, and they should not leave you without meds. I would think that you do not need to wait to get into pain management--your surgeon's office should work with you on this.

Good luck, and don't take no for an answer! This will get better!

Take care,

Gayle

[BadKitty]

Thanks, Gayle ... I've been trying to go longer between 10 mg doses of Percoset (oxycodone with Tylenlol), which sometimes happens at night inadvertently. Last night I went to 5 1/2 hours because of sleeping through, which is a good thing (must not have hurt too bad). I gave up on the Oxycontin completely, since it makes me feel drugged and sick.

This morning I talked to my surgeon's office, and they referred me to a pain management doctor who is practically in my neighborhood. They made the appointment for me for this afternoon, sent over all the records, and took care of everything. Apparently my surgeon doesn't prescribe anything more potent than Vicodin, and that's why they're referring me out. I'm so happy, and hope to get some solid advice about what to take, how to maintain a comfort level, and when & how to reduce the dosage effectively.

Hope this is all it takes to get the pain under control & get on with my post-op recovery!

[jeneemohler]

Good Luck at your appointment. I hope SOMEONE helps you with your meds!!

I know this doesn't help you at all, but one good thing coming out of all this, is that you are arming those of us facing surgery with lots of information on pain meds. Thank you for communicating your experiences with us. (And also to those of you who answered this thread.) And hang in there! In time, this will all be a memory and you will be feeling great, and enjoying your new body!

Gayle, I also live in Oregon. I will have to remember your doctor, if for some reason my doc ever left town. I was fortunate to find a compassionate doctor with a great reputation here in Bend so that I don't have to travel to Portland for surgery. I was not looking forward to traveling home after surgery or for post-op appointments! OHSU recommended my doc to one of their patients who lives near this area, so I feel really comfortable with her. I've been seeing her for nearly 10years now, so I feel like I really know her and I trust her. She and her husband also have a non-profit organization that perform surgery on children with extreme cases of scoliosis, who have no insurance. Pretty cool. That was the recommendation I was talking about-there was an article about it in the newspaper. How did you like your doc?

Good luck and keep us posted.

[mgs]

That is hopeful news. I have thought of you, throughout the weekend. I'll be checking this thread to find out what the new plan is.

I admit that I found my experience w/pain management lacking, too. Vicodin is useless for me, but that's the best my surgeon's office can do, since Vicodin can be called into a pharmacy, and the oxycodone requires a hard copy rx. Like you, I find that oxycontin, when taken alone, is useless. Only oxycodone helps, and a lot of it.

My fusion surgery was 14 mos ago, and I was almost grateful that I had a post-op hemothorax - it necessitated 2 more hosp admissions, which came with IV Dilaudid. Now, 2 weeks (tomorrow) post-op hardware removal, I am having the same response to the pain control meds as I did w/the fusion surgery. However, as I got ready for this "removal" surgery, I knew the pitfalls of working w/my surgeon's office regarding pain management, so (pre-emptively)I set up a "post surgery medication" relationship w/a local doc (he's "non-surgery orthopedics", so he has an understanding of the situation). This works much better.

My surgeon is wonderful. I like his office staff. It just seemed to me that adequate pain mgmt was too difficult, long distance.

[leahdragonfly]

Dr Hart-Portland

Hi Jenee,

I like Dr Hart very much--he is thorough but very nice, answers all questions, is willing to communicate by e-mail, etc. He came and saw me every evening in the hospital even though his residents had already come by each morning. He has a great office staff, especially his assistant/scheduler, Robin, and his wonderful PA, Kara who handles the post-ops. Too bad I was not as happy with the post-op nursing care at OHSU...

BTW, at least in Oregon prescriptions for triplicate-meds such as oxycodone can be sent overnight to the pharmacy from the doctor's office by FedEx. Kara offered to do that for me when I was having so much n/v from pain meds. I am appalled to hear of surgeons who do these huge, painful surgeries and then give poor follow-up and poor pain control. Not sure what they are thinking. I also think some states are much stricter about natcotics--Oregon is fine but we used to live in CA, and it didn't matter what the problem was or how bad the pain, it was next to impossible to get any type of narcotic prescription. My husband had a knee arthroscopy/meniscectomy and was given a bottle of 20 vicodin. Go figure.

[jeneemohler]

Wow...... Yes, I think some doctors are out of touch with the idea of someone being in pain. And to complicate matters further, it seems like we don't want to be seen as a whiner or baby, so we seldom talk about being in pain, or we'd be complaining everyday! Unfortunately, this can backfire, because people sometimes don't really believe you are in much pain or may need help with something BECAUSE you don't complain!!
Do doctors see so much of it that they become immune to it, and start thinking it is "routine"? It may seem so to them, but not to the poor soul experiencing it!! Chronic pain can play mental games with an otherwise well-adjusted person. I have been a tough lady all my adult life, and have a pretty high pain tolerance. (I think a lot of us scoli people do..) But some days it just really gets to me, mentally.
It sounds like everyone having surgery needs to discuss the plan BEFORE surgery with their doctors, and not assume it will all be taken care of satisfactorily afterwards!!!!

[BadKitty]

Yes! Discuss the plan FIRST, and make it a very clear and simple plan - what you'll take, who will maintain it, what to do and who to call when there's a problem, how to taper off.

So, I struck gold with my pain management doctor! He's continuing me on the Percoset, which I am to gradually reduce as tolerated by pain symptoms - no rush. He said that as I reduce, any tolerance I've developed will be reduced also, and my withdrawal symptoms, if I even have any, should be mild. He agreed that Oxycontin was unecessary at this point, especially since it doesn't work for me anyway. We discussed the constipation, and apparently I'm doing all the right things there, too.

He also recommended adding Lyrica for the neurogenic pain, the burning pain along my rib cage and hips, and other "healing-related" pain. I've never taken it, and am a little leery of new meds, but I said I'd try it at a low dose and see if it helps at all. He said that was fine, and I could decide whether or not I wanted to continue taking it if it helped me.

On top of being thorough, answering all questions, discussing everything I brought up, listening intently and having a great sense of humor, he is also a super-nice guy.

Interesting note --- with my early back pain, I had a physical therapist named "Dr. Greg House" (PhD). Now my pain management doctor is "Dr. Foreman." I wonder who's next on the team?

[jChris]

Glad to hear you are doing better. I am sending positive thoughts your way for a smooth recovery going forward.