PDA

View Full Version : Introduction & pain meds. question



Ginny Ann
11-29-2007, 10:51 PM
Hi Everyone,

Firstly, hello to my new peer group of scoliosis patients. While I vaguely recall a pediatrician at (my) age 13 telling my step-mother that I had scoliosis, I was unaware of its progress and effects until 3 years ago. At that time pain began and rapidly advanced so that by last spring I was unable to walk or stand for >10 minutes. Luckily I mentioned the word "scoliosis" to my local orthopedic guy, after having looked up differential diagnoses on the internet when his treatment wasn't having any real effect. He hadn't examined my back at all, but just diagnosed the pain in my L hip, radiating down my leg as "trochanteric bursitis" and injected the hip several times, had me go to PT for hip exercises. After he took a film of my spine, he agreed I had significant scoliosis, but stated "no one's going to do anything about your scoliosis" (inplying at my middle-aged status), and limited his treatment plan to referring me for epidural injections of L4-5. While epidurals had helped some idiopathic neck pain I've had since pregnancy with my son in 1983, the lumbar spine epidurals did nothing lasting beyond a couple of days. So I did more internet research and found a neurosurgeon, talked my PCP into authorizing a referral, and luckily this surgeon said that while there were procedures he could do to alleviate my pain, he didn't think he should do them b/c my spine was so bent and twisted on its axis as well. He recommended Dr. Rand for scoliosis surgery; I'll be ever-grateful for his honest and accurate diagnosis and treatment recommendation.

On Sept 26 & Oct 16 I had posterior/anterior surgeries by Dr. Frank Rand at New England Baptist Hospital, Boston, for thoracolumbar scoliosis. My spine is now fusing from T9 to S1, following hospital and rehab stays totalling about a month. I think I'm having a good recovery objectively, although I continue to have a fair amount of upper and lower back pain, the latter extending over the derrière (as my French mother-in-law would call it) and hips. There is also still significant abdominal, leg, foot edema; especially on the left side, although it is now thankfully beginning to decrease day by day. I also had a 3rd (5-day) hospitalization in early November b/c of cellulitis over my L foot & calf. After 3 IV antibiotics in hospital and a 4th oral antibiotic for 10 days after discharge, that problem is gone.

So there's the relevant med/surg history; now here's the question:

Could others with similar surgeries share their experience with what they needed over the several weeks/months post-op in terms of pain meds? I'm still on a hefty dose of Oxycontin and about half the initial amount of immediate-release oxycodone q. 4-6 hours for break-through pain. Just wondering what others' med. needs were during this period of recovery and when people were able to wean off the heavy-hitting pain meds. I appreciate any responses you're able to give and I'm grateful to have found this forum as a resource. The VNA terminated my nursing & PT services this week, so now (aside from helpful & caring family & friends) I feel like I'm flying solo. Many thanks in advance, for your thoughts and for welcoming me into this group (here I was going to put some sort of shy-smiley face, but couldn't figure out how.)

Ginny

dawney
11-30-2007, 05:00 AM
When I was taken off percocet amd put on vicotin I took valium for breakthrough pain. Gradually I lessened my doses and then was taken down to tylenol with codeine with valium once in a while. Just remember everyones pain level is different.
I am fused from t-9 to the iliac.

Singer
11-30-2007, 07:23 AM
Hi Ginny,

Welcome. After my A/P surgeries in June, I too was on slow-release Oxycodone every 12 hours with Oxycontin (Oxy with Tylenol) for breakthrough pain every 4 hours. At three months I weaned off everything and tried to go on Vicodin as a step-down drug, but I had a bad reaction to it and was put back on 5 mgs of Oxycontin which I now take about every 5-6 hours, or about 3 x a day. I also take half a Valium occasionally at bedtime for muscle spasms. From what I've read on the Forum I've been on this drug a bit longer than most but I've had a couple of complications, most notably a very weak and painful right leg, which is a lot better now. I'm not happy about being hooked physically on the Oxy, but it enabled me to stay active enough to do the intensive rehab I needed to get my leg going again. IN another couple of weeks I'm going to wean off everything with the help of a pain management specialist, who will help me find some non-narcotic ways to deal with the pain I still have.

suzyjay
11-30-2007, 08:46 AM
Welcome Ginny

I was on pain meds for 3 months when before I started to wean off them. I took hydrcodone (sp) very 4 hours for about a month and then switched to Oxycontin 10mg every 4 hours but that wasn't enough. So I was given hydrocodone for break through pain. When coming off these drugs make sure you do it very slowy or you will have terrible withdrawals.

Sue

crepehanger
11-30-2007, 11:53 AM
I did not have the complications you have experienced and I think that would have increased your need for pain-meds, so I don't have much to offer you there. There are many members here who have successfully taken oxycontin and had some setbacks post-op that can help more. You will be amazed at how they have adapted and overcome! ( we all have, now that I think about it)...Glad you found us and keep posting....

Susie*Bee
11-30-2007, 04:00 PM
I'd like to pretty much just "ditto" what crepehanger said--as I can't help you about the meds either. I'm so glad you found this forum! :)

Linda W
11-30-2007, 04:02 PM
Hi Ginny Ann,

Welcome to the Forum! I am also one of Dr. Rand's very grateful patients. My A/P surgeries were on June 12 and June 27. I thank God every single day for his skill, his intellect and his nice manner! I went to Coolidge House after each of my surgeries and finally came home on July 16 after a total of five weeks.

My pain areas are similar to yours. On July 16, I was taking Oxycodone 10 mg 2 times a day, Dilaudid 4 mg 2-3 times a day and Lyrica 75 mg 2-3 times a day plus two extra strength tylenol 2-4 times a day. I was anxious to get off the serious pain meds asap and tried to stretch the intervals between doses as much as possible. I abruptly stopped Lyrica on July 31 without the benefit of weaning -- not something I would recommend! However, the adema in my legs and feet also resolved when I discontinued the Lyrica. By August 10, I was down to one Oxycodone and one Dilaudid a day. On August 27, I discontinued the Dilaudid. On October 3, I discontinued the Oxycodone. I'm still taking the extra strength tylenol 2-3 times a day. When I saw Dr. Rand at my three-month post op visit on October 1, he was pleased with my progress and not at all judgemental about any pain meds I may need. He is a good listener and is experienced enough to have seen the full range of patients and their personal needs. I just love that man!

The VNA came to my home twice, PT came for about 7 visits and a home health aide came 5 times to help me with showering. Like you, I was also flying solo but also with the help of a wonderfully supportive group of friends and neighbors. I'm walking 1.5 to 1.8 miles per day. I don't need a cane, but I carry one to scare away the squirrels and to navigate over the leaf piles and even some frozen spots on the road like I encountered today.

Please feel free to send me a PM if you want to chat by phone or email.

Good Luck! You are in wonderful hands with Dr. Rand and his staff!

Linda W.

DebbieM
11-30-2007, 04:23 PM
Hi Ginny

I am around 6 weeks post op and on the same meds as you are. I am on probably a higher dose than most if not all of you. I have been on oxy for 7 years now, ever since my back pain started. I started out on 10 mgs. and now up to 80 :eek: mgs. I take perc for breakthrough pain but am weaning myself off of those. I see my doc next week and we will start weening me off---s l o w l y off the oxy. I just cannot wait to be off of those as well. Just as Singer says...the meds helped through PT. I am also on Lyrica 2x a day.
I am also solo at this for the most part. I do have my friends and family but it's not the same as having a significant other.
PM me if you'd like

Deb

Ginny Ann
11-30-2007, 06:17 PM
Thank you to all who have replied (and who may yet answer) my initial posting. It's very helpful to learn about your various experiences, and to learn that at least one other person on the forum has had similar procedures, with the same surgeon (I will be in touch, Linda, so that we can chat sometime.)

Just to clarify, and to make sure I haven't done my husband a disservice, when I mentioned feeling like I was now "flying solo", I was actually referring to having been rather abruptly dropped from all services at the local VNA this week, not to living alone. Actually, I'm very blessed to have a wonderfully supportive husband who's been doing as much as possible over these past 2 months to help me. We also now have our 23 y.o. Iraq War (pain-disabled) veteran son living with us again (since October), and John is also dealing with his father now dying of hitherto unsuspected mesothelioma (the asbestos-related cancer). So the man has a lot on his shoulders just now, and I wanted to make sure I gave him credit! Scoliosis or not, I'm a lucky woman.

Thanks again, everyone.

Ginny

Prfbones
12-06-2007, 10:01 AM
Welcome Ginny

I was on pain meds for 3 months when before I started to wean off them. I took hydrcodone (sp) very 4 hours for about a month and then switched to Oxycontin 10mg every 4 hours but that wasn't enough. So I was given hydrocodone for break through pain. When coming off these drugs make sure you do it very slowy or you will have terrible withdrawals.

Sue

Actually, there is a new drug on the market now to prevent the symptoms of withdrawl from the opiates (narcotics). The drug: Suboxone can be perscribed by physicians registered with the DEA to do so (usually pain management docs). Most pharmacies now carry the drug.

It's a tablet that dissolves under your tounge. It allows patients to discontinue the use of drugs like Oxycontin and Percoset without withdrawl symptoms.

dalmatica
12-06-2007, 05:58 PM
Actually, there is a new drug on the market now to prevent the symptoms of withdrawl from the opiates (narcotics). The drug: Suboxone can be perscribed by physicians registered with the DEA to do so (usually pain management docs). Most pharmacies now carry the drug.

It's a tablet that dissolves under your tounge. It allows patients to discontinue the use of drugs like Oxycontin and Percoset without withdrawl symptoms.

Wow! I'm so glad to hear that! I take Oxy 30 mg/ three times a day but it doesn't agree with me so I have been breaking them in half and taking them five times a day like I did when I was on the 15 mg tablets. My pain doc just switched me to these stronger ones a few weeks ago so when I see him next week, I am telling him that I don't like them and want the old ones back. My mom and I talk almost daily about how I will ever get off these damn things so I am so glad to hear this. K

Singer
12-06-2007, 06:43 PM
Prfbones -- Just curious -- what is the action of this drug? How does it work and are there side effects?

rosie1108
12-07-2007, 12:03 AM
I can answer that, I learned about this-
The chemical in the suboxone or Buprenorphine, is what is called an "opioid", because it has opiate-like effects, it contains substances that both stimulate and inhibits the receptors which opiates act on. I believe it is more than 30 times more powerful than morphine. It stops you from having withdrawals because of the stimulation, and Since it inhibits the receptors also, it prevents the addictive effect.

The drug, in a way, allows your body to go through withdrawals, but you will not physically experience them, and this compound is only given if someone is already having opiate withdrawal symptoms, it is not a "preventative" type of scenario.

Some studies show it has a lower side effects, but they are the same as for any other opiate (nausea and vomiting, drowsiness, dizziness, headache, itch, dry mouth) However, unlike some pain meds, it does not have the ability to build up in the body, so tolerance is not a problem when used as directed, it is conjugated and excreted by the liver, which with high doses may affect the liver. It does not impact kidney function, it has very few drug interactions, and it does not suppress the immune system.

There's the basics----Hope this helps, I'm sure there is more details somewhere online!

Roseann

Singer
12-07-2007, 07:47 AM
Thanks for the info.

I just can't wait to get off of EVERYTHING. I'm at the point where I'm more than willing to put up with pain rather than keep taking stuff. The thing that I find the most excruciating are the nighttime muscle spasms when I lie down at bedtime -- they actually make me twist involuntarily, which of course is NOT good for my fusion. But just half a Valium calms them down enough that I can fall asleep. Hopefully that small a dose won't be a problem to stop when the spasms subside.

Prfbones
12-07-2007, 10:18 AM
I can answer that, I learned about this-
The chemical in the suboxone or Buprenorphine, is what is called an "opioid", because it has opiate-like effects, it contains substances that both stimulate and inhibits the receptors which opiates act on. I believe it is more than 30 times more powerful than morphine. It stops you from having withdrawals because of the stimulation, and Since it inhibits the receptors also, it prevents the addictive effect.

The drug, in a way, allows your body to go through withdrawals, but you will not physically experience them, and this compound is only given if someone is already having opiate withdrawal symptoms, it is not a "preventative" type of scenario.

Some studies show it has a lower side effects, but they are the same as for any other opiate (nausea and vomiting, drowsiness, dizziness, headache, itch, dry mouth) However, unlike some pain meds, it does not have the ability to build up in the body, so tolerance is not a problem when used as directed, it is conjugated and excreted by the liver, which with high doses may affect the liver. It does not impact kidney function, it has very few drug interactions, and it does not suppress the immune system.

There's the basics----Hope this helps, I'm sure there is more details somewhere online!

Roseann

You're mostly right :)

Actually, there is another drug that was FDA approved called Subutex. Subutex is buprenorphine. Suboxone is different however because it contains naloxone as well (therefore Suboxone = buprenorphine/naloxone). Most people don't take Subutex anymore.

In technical terms, Suboxone is a partial opiate agonist (the buprenorphine part) and an opiate antagonist (the naloxone part).

An opiate antagonist is a compound that will bind to the site where a narcotic usually binds. This inhibits the narcotic from being active in your body because it can't get to the place it needs to. A partial agonist is a compound that will bind to a site but only allow a small degree of response. So one of these drugs only has the partial agonist response, the other (Suboxone) has both.

Suboxone is now used immideately after ending opiate use, often in the same day (short-term detox). The patient does not have to be experiencing any withdrawl symptoms to begin dosing.

You will have to find a doctor with a special Federal waver that allows her/him to detox patients as an outpatients (I think there are lists on the web). Your doctor will probably titrate your dosage down as you are weaned from the drug.

Here's a WIKI site: (it's not terrific and contains some mis-information): http://en.wikipedia.org/wiki/Buprenorphine

Here's a couple FDA sites: http://www.fda.gov/bbs/topics/ANSWERS/2002/ANS01165.html
http://www.fda.gov/cder/drug/infopage/subutex_suboxone/subutex-qa.htm