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View Full Version : Need advice about pain and pain management! Crying time!



BadKitty
11-12-2010, 08:19 PM
It's been a circus with the pain meds around here ...

I was discharged from rehab with Vicodin, which I can't even take. The discharge nurse told me to call my PCP's office for something else, so like an idiot I did. My PCP changed it to Darvocet, which didn't even come close to relieving the pain. On Monday he changed it again to Percoset every 6 hours, which still wasn't enough to let me walk around the house, let alone down the street. It was horrible. I went back Thursday, saw another doctor since my PCP was out, and he said I could take the Percoset every 4 hours, and added Oxycontin, which was exactly the regimen in rehab. He also personally called my surgeon's office and told them THEY need to be managing my pain meds (which they had told me they wouldn't do since I had gone to my PCP - like the rehab nurse said to do).

As it turned out, that was WAY too much medication, and after more than a day of dizziness and nausea and no appetite, I'm finally trying to figure out what I should take. I figure I'll leave the oxycontin alone. Maybe taper down on the Percoset from 4 to 5 to 6 hours? I was also discharged with Robaxin, which isn't doing anything for the muscle spasms, and it feels like my back is a cramped up rock. Interestingly, the surgeons office said they don't even recommend muscle relaxants post op.

I want to go walking! I want to get out there and loosen up, get everything moving, make some progress! I feel frozen, can't even sit for more than a few minutes! I know it sounds like I'm whining, but I'm just frustrated and don't know what to do or what to expect. Help!

Mojo's Mom
11-12-2010, 08:31 PM
What dose of Oxycontin? Maybe it was too much. You have to find your own balance, somehow. With Oxy, you should be taking just that and using the Percocet for breakthrough, if the oxy isn't enough.

BadKitty
11-12-2010, 08:37 PM
When I left rehab, they had me on Oxycontin 10mg ER q 12 h and oxycodone 10 mg q 4 h. They apparently expected me to be just fine changing abruptly to Vicodin only. After struggling on Darvocet over the weekend, the combination of Percoset and Oxycontin was just too strong, and now I'm trying to figure out what to take - Oxycontin alone, or Percoset less frequently. I want to take as little pain medication as possible, while at the same time being able to function. I guess I'll just talk to the surgeon's office on Monday and find out what I'm supposed to do, because I sure don't know.

JenniferG
11-13-2010, 01:58 AM
At the same stage as you are at now, I was on 40mg Oxycontin x 2 daily, plus Endone (quick release oxy) 6 hourly and I was told to take paracetamol with the Oxycontin because it makes the oxy work in two different ways. It took care of my pain though the doctor said it was a "horse dose." I've since been told it wasn't!

I didn't start cutting down until the 6 week mark. Ok, I became dependent on the oxy, but I kept cutting back slowly week by week until I was off it all. You are very early to be off the oxycontin, though you may have a good reason why you don't want to take it?

What I'm trying to say is, I was taking much more than you are at the same stage, and after the 3 week mark, it kept the pain completely under control. I was able to walk every day, extending the distance daily. I feel if you can get that pain under control to enable you to walk, you'll recover more quickly. Just my thoughts.

debbei
11-13-2010, 06:20 AM
I agree with Jennifer, you're so early in recovery to be cutting back. Reading your post made me angry with your surgeon AND PCP's office. You shouldn't have to figure it out on your own!

BadKitty
11-13-2010, 07:25 AM
Thanks, guys ... I'm pretty upset too. I feel like I've been abandoned by my doctor. But at least I don't feel like a whiny baby anymore.

I guess the reason I don't want the Oxycontin is because now it makes me feel so dizzy, nauseated, and caused a weird pressure feeilng and ringing in my ears. I'll take what I have to, but it seems like around here the big deal with the doctors here is cutting down on meds. Home on Vicodin? Please.

I guess I'll stick with the four-hourly Percoset until Monday, and see what the surgeon's office wants me to do. I hope they don't want me to come in, because I don't have a ride and the thought of riding in a taxi fills me with dread.

Singer
11-13-2010, 07:32 AM
I agree with Debbe -- what's wrong with these people?!? At your stage post-op, I was taking 20 mgs. Oxycodone every 12 hours and 2 Percocets (I forget dosage) every 4 hours. Fortunately I have a strong stomach and tolerated everything well. At some point I also started taking Valium at night for muscle spasms. I felt like all I was doing was popping pills, but I could not have functioned without them. You need to be very assertive with your surgeon and/or PCP about pain relief because you really need to move around to hasten the fusion and healing.

I was also referred to a pain management specialist by my physical therapist at around 3 months post-op. There are not a lot of these specialists around, but I did find one who helped me maintain pain control and taper off the narcotics when I was ready (at around 8 months).

Jacque's Mom
11-13-2010, 07:34 AM
Juliet, you aren't even one month post-op - you need to be on the meds. I am in the process of going through my pre-surgical testing (surgery on 12/7/10) and one of the doctors I saw on Thursday said "while this is a big surgery and painful recovery, you must stay on top of your meds to keep the pain under control". I have been with a pain management doctor for eight years, and he will be in touch with Dr. Boachie's office (or their pain management team) in order to all be on the same page. I doubt a PCP doctor even knows the magnitude of this surgery. I would insist your surgeon help manage your pain. If he doesn't, insist they recommend a good pain management doctor in your area that you can go to. I'm sorry you are hurting. I'm be keeping you in my prayers. LYNN

jChris
11-13-2010, 10:49 AM
Juliet, I am so sorry to hear you are struggling with the pain meeds. I had to adjust my medication several times before I got things under control.

I use Dr. Haro with Austin Pain Management Associates and he has been helpful with both pre and post surgical pain control. I highly recommend him. Dr. Geck's office has implied that Dr. Haro can prescribe a broader range of drugs than they can???

I could not take the oxy stuff,,made me sick. I now wear a fentanyl patch and take dilaudid. The pain doc wants me to start decreasing the dilaudid as soon as I can.

BadKitty
11-13-2010, 11:16 AM
Thank you folks for the recommendations to pain managment! I think maybe Dr. Geck's office doesn't want to deal with it because then they'd have to put a pain specialist on staff, so many of their patients are dealing with pain issues.

JChris, you're the second person to recommend Dr. Haro to me; my other friend has been seeing him for almost 10 years for chronic/terminal issues. I'll call him on Monday and see if he can help. I was only given enough meds to last over the weekend, so somebody has to help me somehow. You'd probably beat me in those races now! I'm so happy you're doing well.

naptown78
11-13-2010, 05:51 PM
Juliet,
I'm so sorry you are going through this by yourself. OMG, the pain after this type of surgery can be so intense, you should absolutely have the support of your surgeon. Your PCP will not be appropriate until after several months have passed. This is ACUTE PAIN, and you need BIG DRUGS. I would suggest a smaller dose of Oxycontin with Percocet in between for breakthrough pain. I was on this regimen for several months although lots of people were able to wean sooner. If you can't move due to pain, it will slow your recovery. I'm disappointed in your surgeon's office for treating you in this way. Don't even think about weaning until you feel ready, it's not a race. Good luck, and I hope you get the help you need this week ;-)))

BadKitty
11-13-2010, 06:45 PM
Thanks for the suggestion, Kristy ... since I can't talk to my surgeon until Monday, I think I'll try the Oxycontin ER for overnight and see what happens. The first time I took it along with a Percoset, and the room was spinning, but alone maybe it'll work without making me sick. No harm in trying; I can always go back to what I'm doing now until Monday.

I appreciate everyone letting me know that the pain isn't in my imagination, or that I have to "be strong and tough it out." I don't understand doctors' attitudes toward pain treatment at all! I was so happy that Dr. Fincken at my PCP's office took me seriously, especially since I didn't really expect there was anything he could do.

Onward! Through the blessed fog! Tomorrow will be a better day!

golfnut
11-14-2010, 08:23 AM
Juliet,
I haven't had my surgery yet, so I know nothing about the pain medications. I intend to ask a few questions at my pre-op appointment on Wed. about controlling the pain medications since I have no experience with pain medications and seldom even take a Tylenol. I just don't want to be turned lose with bottles of strong pain medications and little instructions which it seems to be the case for most on this forum. Also, does one start with the laxatives immediately to avoid constipation or is it inevitable regardless? I hope you find relief soon!

leahdragonfly
11-14-2010, 10:20 AM
Hi Karen,

I would definitely try to have the nurses help you in the hospital w/ constipation. I asked for a dulcolax suppository about the 4th day post-op which was of a small amount of help, but I ended up at home after 6 days in the hospital significantly constipated and uncomfortable.

I would recommend you buy a jug of Miralax (available generic for less $) to have available when you get home, and I would start taking it immediately. I also used Senokot-S and colace (stool softener). At first my abdominal muscles were weak after a long surgery and 6 days of severe nausea and vomitting, which makes constipation even more difficult and painful to deal with. Proactive prevention as much as possible from your early post-op days will help tremendously.

Good luck,

Gayle

jrnyc
11-14-2010, 02:47 PM
hi Juliet
i don't understand why, so soon after surgery, your surgeon doesn't take more responsibility for your post op treatment...
i also don't understand why you were given such a low dose of oxy...i have not had surgery..yet..and have both 20 mg and 30 mg of oxycontin for pain...i take it as infrequently as possible, and try to stay with just the hydrocodone i have, but some days, like when it is cold and wet outside, usually require more medication...

if you eat before you take the meds, it should help with the nausea, room spinning, etc...

i think you need to talk with your surgeon or his staff...
it is just my opinion, but i think the dose you were sent home with doesn't sound sufficient to treat post op pain!

hope you feel better soon
jess

BadKitty
11-14-2010, 09:20 PM
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
11-15-2010, 09:21 AM
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
11-15-2010, 10:40 AM
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
11-15-2010, 01:05 PM
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
11-15-2010, 01:18 PM
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
11-15-2010, 03:32 PM
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
11-15-2010, 03:52 PM
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
11-15-2010, 08:20 PM
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? :D

jChris
11-16-2010, 10:19 AM
Glad to hear you are doing better. I am sending positive thoughts your way for a smooth recovery going forward.