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cathydrew
06-05-2015, 06:00 PM
I don't understand how anybody could have had the surgery and post at 6 to 8 weeks that they are pain-free. I am off all narcotics and now the muscles on the convex side of my curves are like stabbing pains if I move in a wrong way. Also the tops of my pelvis are killing me. I can't sit for any length of time I have to lay flat on my back which is adding to the sensitivity and ache of my pelvis (by anchor points) It's getting old laying on my back and I'm getting a neck ache. How long til I can sit? I get up and walk around up the street but eventually have to lay flat. Ugh!!

LindaRacine
06-05-2015, 10:04 PM
Cathy...

I think I've said this before, but I think you went off of pain medication too soon. If pain medication would allow you to have a little bit of normality in your life, it would be more beneficial than being stoic.

Most people can sit in a comfortable chair for at least 45 minutes to an hour at 6-8 weeks.

--Linda

cathydrew
06-06-2015, 10:31 AM
I can sit that long Linda, not entirely comfortable but sitting. So, you think it would be ok for me to occasionally take something for some normalcy? My doctors PA was kinda wanting me to get off painkillers and really, they turned me into a zombie, sleeping and crying all the time. I'm not stoic, I want normal. I also had bad withdrawal from the tramadol. I value your advice.

Thanks.

LindaRacine
06-06-2015, 01:11 PM
I can sit that long Linda, not entirely comfortable but sitting. So, you think it would be ok for me to occasionally take something for some normalcy? My doctors PA was kinda wanting me to get off painkillers and really, they turned me into a zombie, sleeping and crying all the time. I'm not stoic, I want normal. I also had bad withdrawal from the tramadol. I value your advice.

Thanks.

Yes, I think it's totally appropriate. I think narcotics can totally screw up our perception of pain, but I don't think that's your problem. Have you tried something other than tramadol? Even people who are super sensitive to a lot of narcotics can usually find one that doesn't have a lot of side effects. I also think you'll have fewer side effects if you're only taking a narcotic on an occasional basis. Have you tried oxycodone?

--Linda

cathydrew
06-06-2015, 09:24 PM
Yes, I was on oxycodone fast acting and OxyContin long lasting before the tramadol. I still have some oxycodone. I'm going to try it next time I have a lot of pain, see how it affects me before my son's graduation. I still have tramadol too. I just need to be able to sit through the ceremony. I actually sat thru an entire Who concert but I was still on everything then.

Thanks Linda <3

LindaRacine
06-07-2015, 01:27 AM
Good Cathy. It's good to get off of narcotics before getting addicted (which happens pretty quickly). You've already proved that you're not addicted, so narcotics on an as needed basis should significantly improve the quality of your life.

--Linda

titaniumed
06-23-2015, 09:17 AM
I don't believe addiction happens as easy as it is made to sound here.

Dixie, you also have to consider addictive personality...... This can happen in many forms, living in a gambling town I have seen this first hand where gambling completely destroys people. I have also seen this happen with video games and a friend ended up in the hospital after a seizure. The docs wouldnít say why it happened....but we knew why.

We all make our own decisions on these things when we realize what they do to us.....

We hope.

Some of us are lucky to be able to quit, and it doesnít matter what it is.

If you read down, you will see obsessive tanning listed. It puts a new meaning on the word barbeque. LOL

https://en.wikipedia.org/wiki/Addictive_personality

Ed

jackieg412
06-23-2015, 10:45 AM
I agree with ed as a part of. Addiction is within us. I grew up in the 60's with all of the freedoms of the time. I fortunately was able to bypass the drug culture of the time . However I am addicted to coffee. My son just told me he is 5 years sober. He is bipolar and addictive behavior is part of that. And we are fortunate that medication works for him. True addiction is a rough ride. I guess I would say know yourself and be honest with the doctor caring for you. It should help avoid problems.

LindaRacine
06-23-2015, 02:49 PM
Hi...

I'm not the typical addictive personality. I found it relatively easy to stop smoking. I also found it relatively easy to stop caffeine. I have never had a problem with alcohol or gambling. With the exception of food, I can't recall ever having a problem getting off of something. After being on oxycontin less than 2 months (the same dose the whole time), and withdrawal was awful. If I didn't also feel a different kind of crappy being on oxycontin, the urge to go back would probably have been irresistible.

I think, for many of us, addiction is very difficult to recognize. I met a woman yesterday who has been on narcotics her entire adult life. She has a moderate scoliosis curve and has complained of diffuse back pain since she reached adulthood. She says that every part of her back from her waist to her shoulders gives her unrelenting pain. CTs and MRIs show nothing but the curves, including very little degeneration. She does not think she's addicted. She's never even considered it. I'm betting that most medical professionals would consider her addicted, but it's not something she can face. I don't think it's the same with everyone, but there's definitely a decent percentage of people who are addicted regardless of what they think. (I'm not saying this is true for anyone in particular.) I think addiction is not black and white and one size definitely does not fit all.

--Linda

JenniferG
06-25-2015, 05:55 PM
Very very surprised no one has researched the difference between addiction and physical dependency. They are clearly two different things. Two very different things!!!!


That was my thought too.

Tableone
06-26-2015, 03:09 AM
I am glad this point about addiction vs dependency was brought up. As someone who has been in pain management for many years (since before there was even "pain management" I have had a lot of education about opiates and managing pain from my many doctors. What I have been told is that there is a clear distinction between being an "addict" or being "addicted" to a medication and being HABITUATED to it. Addicts have addict-like behavior toward their medications; for instance, they will resort to desperate, even illegal, measures to obtain higher and higher doses of medications AND they take the medications even when they are NOT in pain. The medication takes over their life, obtaining it becomes their priority, etc...this is addict-like behavior.

I have not seen any addict-like behavior toward pain medications on this forum.

Being habituated is something that can happen SOMETIMES when someone is on an opiate for a period of time. Since everyone's body chemistry is different, one can't say how long this takes, or if it even happens, as it will be different for every person. I am probably habituated to my current pain medication as I'm in a LOT of pain these days and have to take a certain amount daily to bear the pain. The way it was explained to me is that when I want to go off of a medication, or switch medications, I should slowly taper off. This way, I will avoid any unpleasant withdrawal. Now, this doesn't mean that one person won't have a harder time than another tapering off; just like one person can take an opiate and get good pain relief with little side effects, and someone else can take the same medication and pass out. Everyone is different, and everyone's reaction to medications will be different.

It's important to be properly educated about opiate medications. There is so much hysteria and ignorance in the public about them, just as there is about antibiotics, that on this forum, where so many of us are in dire pain - pain that is so bad that we wonder how much longer we can even live with it - I think we need to be careful about not making confusing statements, or act like there is a certain amount of time that you should or should not be on them. Some surgeons get upset when they see their Scoliosis surgery patients still on pain medicines and may even make their patients feel guilty about it. I understand this, as no surgeon wants to this their surgery has not completely cured their patient. But, we all have to live in our bodies and ultimately the decision as to the amount of pain we feel able to bear should rest with us, not anyone else.

Also, it should be noted that there is a world of difference between taking a pain medication when you are in pain and taking it when you are not. Your brain chemistry is actually different when you are in pain. Here's from webmd:

"Opioid pain medications are some of the most commonly abused prescription drugs. However, the risk that well-screened people will become addicted to opioid drugs when they're taking them for chronic pain is actually low, Reisfield says. A 2008 study that compiled previous research found that about 3% of people with chronic non-cancer pain using opioid drugs abused them or became addicted. The risk was less than 1% in people who had never abused drugs or been addicted."

No one wants to be on opiate pain medications. But for some of us, like myself, they are necessary for daily living. I'm not going to feel bad that I can't bear the pain and do without, I'm not going to feel guilty that I'm still on them, nor am I going to let myself be judged by ignorant people around me. I'm just going to take the meds and get on with my life as best as I can. And I'm not afraid to speak honestly to my Scoliosis community about this because I know I'm not the only one on this forum that must utilize these medications in order to survive in my body.

Lizardacres
06-26-2015, 01:46 PM
GREAT post. Everybody needs to find their own way to live with their scoli. Good for you for not feeling guilty. There is no cure from our scoliosis, even with successful surgery.

cathydrew
06-26-2015, 02:45 PM
I'm so glad I posted this because since I read all your responses and all the different people weighing in I have decided that I will just take an Oxy when I need it, sometimes I do sometimes I don't. Unfortunately I don't like the way makes my head feel. My doctor would not refill my prescription and told me at this point I can take Motrin and I took an 800 mg and it actually helped. I'm a definite lightweight and all medications usually work for me with the exception of Tylenol which does nothing. I guess I'm going to have to look into pain management at some point. On a different note I love this support group and this forum it has been priceless to me these last few years.

titaniumed
06-27-2015, 12:12 PM
I love this support group and this forum it has been priceless to me these last few years.

We are glad you are here Cathy! Keep posting!

This forum has a well rounded group of highly experienced posters, patients and parents. I have also had support and learned quite a bit here through the years....

Iím hoping some of the patients coming up soon for revisions do well, (Jackie, Jenee, Etc) I kind of miss Susie Bee reporting on this and keeping it all straight.

You cant ask me, I donít know what Iím doing tomorrow.....LOL I take it day by day.......

Just keep smiling

Ed

mabeckoff
06-27-2015, 09:00 PM
I miss Susie Bee as well!!

Susie*Bee
06-27-2015, 09:43 PM
Hi guys! Here I am, reporting in. Have been on an epic road trip, and am not quite home yet... haven't checked the forum for a few weeks due to internet problems.

I will try to write a little (ha ha-- not possible). Cathy-- first of all, everyone is SO different in how they can deal with the pain of this surgery. I cannot begin to fathom how you were able to do without pain meds so quickly. Our length of fusion is similar and I also had a few "extras". I did not stop all pain meds for 5 months. Again, each of us is different. As someone mentioned, there is the dependency issue, but you should be monitored with your pain meds also. My brother has had serious dependency/addictive issues, so that caused me to worry a little about that and be cautious. Some people even resort to cough syrup when they cannot get other "high" triggers. He has been on everything, but has mental (schizophrenia and bi-polar) and emotional problems that are under control with medication.

My medicines were monitored with my scoli nurse and then later with my PCP and then weaned off with a clear program. I now have an Rx for "as needed" which is very seldom. No problem at all. My PCP says if you are someone who is concerned about becoming addicted, then you are probably not someone who will become addicted. And you need a written Rx and there aren't refills allowed for any of those drugs. How can you mess that up? Your doc would put the kabosh on it.

My scoli nurse explained to me that the purpose of the pain meds were to keep you feeling well enough to function, but not enough so that you weren't in total control of your faculties. There's a fine line where you want to tread-- you won't be totally out of pain, but it will be tolerable. At least that is how I handled it. Does that make sense? And if you are on a med that makes you weepy or out of it, maybe it is the wrong med for you and you need to let your doctor know what is happening.

As I said at the beginning of this, I am on my vacation and the TV is blaring (hubby) and I may not be making a lot of sense. When I get home I want to start a new thread related to this vacation. We will have been on an epic road trip for almost a month and traveled over 7,000 miles. My back has done a fantastic job.

Cathy-- everything takes time. If you would have asked me 8 years ago if I would ever go on a 7,000 mile road trip, I would have cried or laughed or both. I would have been about your amount along then. Take care and know that you will continue to improve each day and each year.

Ed and Melissa-- yes, I am here. (Big smile...)

golfnut
06-27-2015, 10:44 PM
Susie Bee,
It is good to hear from you. You are such an asset to the forum.

mabeckoff
06-27-2015, 11:37 PM
Susie, Glad that all is well.

Please let us know about your road trip

Melissa

susancook
06-28-2015, 04:54 PM
Cathy,

I have edited and modified almost all of my posts since I am a fast, but inaccurate typist [guess that sleeping through typing class in high school wasn't such a good idea....].

To EDIT A TITLE,
first hit, "edit post"
second hit "Go Advanced"....then you can edit the title.

Hope that this helps with your editing dilemma. Most of all, I hope that you can figure out how to decrease your pain.

Susan