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View Full Version : Approximate time line for first year post op



WLB1
10-15-2013, 07:48 PM
I will be four months post op from a t6 to s2 fusion on Oct. 21. I am 63 years old. I wish I had a timeline of what to expect from healing, sort of loose guidelines of, say, when do I start trying to finish weaning off my medication, and why in the heck am I still so exhausted sometimes. There seems to be no rhyme or reason to it...I will do ok some days and some days I feel like I just fell off a garbage truck compressor, complete with the stink cause those are the days I can't drag myself into the shower. I actually have had three days when I felt normal, not in a row, though. I am doing pt and walk on my treadmill. I know we are all different and so the thresholds of improvement will vary. My surgeon pretty much dumped me after my six week check on August 14. I don't see him again until Nov 6. He is a five hour drive away. My Primary care Doc is helping me with the medication, but he really doesn't understand the magnitude of what I'have been through. I think I am his first scoli patient. The surgeon refused to prescribe meds after the third month. He said if I still needed them he would refer me to a pain control center. Had it not been for my primary care Doc I would have been in a pickle cause my first appointment with the pain guy isn't until the 23, a full month after my surgeon quit prescribing meds. My primary care Doc wants me off the meds ASAP. He makes me feel like a junkie. So all of you fellow scoli's, am I a junkie? I take three 50 mg tramadol a day and 3 5/325 Percocets a day. I take 150 mg of lyrica and 120 mg of cymbalta. The pain is a lot milder now, usually around 5 or 6, but I still can spike to a 10 if I don't watch myself. Is pain normal at this stage, or are the pain meds making it worse? Most of the pain is in the surgery area. I have nerve pain and bone pain. Should I just keep on with the primary care guy, or should I go to the pain management place for an evaluation? I don't want to spend the rest of whatever time I have left going to pain management. I want to be able to stop all pain meds without winding up in horrific pain, which is what has happened when I tried to stop before. Sorry, my friends, for being so wordy, but this is the only place I know where anyone has an idea about what I am going through. Thanks so much!

Irina
10-15-2013, 11:24 PM
Hi WLB1,

No, you're not a junkie! There are people on this forum who took meds for a long time, so you're not the only one. What worries me is that sometimes your pain spikes to 10... What do you do that causes it? I was off narcotics at almost 3 months, to be exact - 2 months and 3 weeks. I was taking nerve pain meds for a little longer, but I think I was off of everything by 4 or 5 months. I was going off narcotics slowly and that was not easy. Are you tapering off or trying to go off cold turkey? Did your surgeon's office tell you how to get off narcotis?

JenniferG
10-16-2013, 12:29 AM
I feel so frustrated that there are surgeons out there who expect every patient to be off medication in 2 or 3 months, or by any particular time. We are all different, and if anybody should know that, our surgeons should. Sometimes the after care of these brilliant surgeons, leaves a lot to be desired.

You will be relieved to know that many on this forum took over 6 months to get off all medication. Having said that, I, too, am a little concerned that you're spiking up to a 10 still. Have you had any follow up x-rays or ct scans since you left hospital? Most people on this forum who have ongoing pain 6 or more months out, find their pain gradually recedes so they can get off their daily medication and you may fit into this category.

I hope some patients here who took that bit longer, will come on and reassure you, but if the 10s continue, I think I'd be wanting to have x-rays or a ct scan done to check everything's where it should be.

Wishing you relief and good healing.

jackieg412
10-16-2013, 09:17 AM
Hi WLBN

You still need to give yourself more time. It is still very early in your healing time line. I just have a though--you said you use your treadmill to walk--I don't know if it is possible for you to walk outside or use a gym track. My doctor and I believe that treadmill walking is hard on the spine--he would not allow it at all as early as you are in healing. It is just a thought. I am 2 years plus after my last surgery--between the 2 major ones I had alot of pain,but had fractured above the fusion. It showed on a CT--but the pain was in one area. I still take occasional meds and gabapentin for nerve pain in my chest. Seems that one of those little guys{nerves} likes to give a problem.
Do be careful with pain management--everyone that I know that goes there is really on some powerful meds.
I agree that you should be further checked{CT or MRI} if your pain is that high. Then you will know if there is a reason or if you just need more time.
My doctor told my family it would take six months to heal---I know for me I thought I was feeling better at between 18-24 months. Then I had another surgery for the fracture.
It takes time and everyone is different--but all agree that it just takes more time.
I do think that the spine surgeons are being watched for the meds that they give their patients.This could be the reason.

WLB1
10-16-2013, 04:24 PM
Thanks, everyone. I was pain free at 2 months, then I felt a pop on my right side, between my chest and hip. I developed a bad case of sciatica, that wound up climbing up my side and following the outside line of the fusion at t6 under my bust line ending at my breast bone. I called my surgeon...the nurse told me it was normal and would get better. This is the area that morphs back into a ten when I go too long without my meds. I have been unable to wear a bra due to pain in this area. Thanks again, so much. I am finding some relief with the tramadol. I am slowly stopping the percs by reducing dosage and extending time between dosage. I really don't want to go to a pain management group. I have a friend who went through the Harrington rod procedure as a child. She is now on OxyContin and is a patient of a pain management group. She said all she does is sleep. I didn't go through the bowels of hell to spend the rest of my life asleep! I want my life back!

Irina
10-16-2013, 06:05 PM
Thanks, everyone. I was pain free at 2 months, then I felt a pop on my right side, between my chest and hip. I developed a bad case of sciatica, that wound up climbing up my side and following the outside line of the fusion at t6 under my bust line ending at my breast bone. I called my surgeon...the nurse told me it was normal and would get better. This is the area that morphs back into a ten when I go too long without my meds. I have been unable to wear a bra due to pain in this area. Thanks again, so much. I am finding some relief with the tramadol. I am slowly stopping the percs by reducing dosage and extending time between dosage. I really don't want to go to a pain management group. I have a friend who went through the Harrington rod procedure as a child. She is now on OxyContin and is a patient of a pain management group. She said all she does is sleep. I didn't go through the bowels of hell to spend the rest of my life asleep! I want my life back!

I hope that your surgeon takes a good look at your x-rays on November 6. I am not saying that there is something wrong, but it's worth checking carefully that everything is in place. Sometimes doctors discharge our concerns, but we want all the questions answered. I was discharged with abdominal hematoma - the hospital staff told me it's constipation, gave me a bunch of laxatives and sent me home. I was back in a local ER two days after the discharge, barely alive and had an emergency surgery to suck out 4 liters of blood from my abdomen. Don't want to scare you or anybody else who is reading this, but we need to be persistent if we feel something is wrong. That pop and 10 level spikes would bother me - I hope it is nothing, but it would be good to get it checked. Good luck to you and hope that your pain subsides soon!

jackieg412
10-16-2013, 06:17 PM
I agree with Irina. Keep saying the same thing to the doctor if you are being bothered by something. I did just that---and it took aound 2 years for the doctor ro find out that I had fractured a vertabae above the fusion. But I kept saying that the one area hurt all of the time. And I know exactly when it happened,but it still took awhile. I think he was tired of me saying the same thing.Did a CT scan and found the problem. Now my surgery took place under workers comp and I don't know if that was the reason for the doctor not hearing me out, but it happened and it had to be fixed.

As far as the bust area that you refer too--I have a nerve that bothers me there--I cannot wear anything tight in that area and it has been 2 and 1/2 years. My doctor has me on gabapentin and told me it could take up to 5 years to heal. I am half way there!

golfnut
10-16-2013, 07:01 PM
I agree with Irina and Jackie. Your surgeon has to be the expert this early in your recovery and make the appropriate recommendations for medications and appropriate exercise. I know that many people on the forum are on medication for 6 months or more. I was told that you need to feel well enough to be able to walk a great deal without pain because the walking would promote fusion.

the_baroness
10-16-2013, 07:53 PM
Hi WLB1 - I am also approximately 4 months post op. I'm 41, so we're a different age group, but I can really relate to how you are feeling! It's a topic so much on my mind, I was getting ready to write a post about it when I saw yours. I was on Oxycontin for about 2.5 months before I started weaning myself off. Once I went off, the pain was immense. I can't even describe how horrible I felt. I felt like I had been hit by a truck, then beaten with a baseball bat, with several kicks in the ribs from a steel-toed boot thrown in for good measure. In addition, I went through a nasty, nasty withdrawal coming off the Oxycontin. In retrospect, I went off it a little too quick, doing it over the course of 10 days, when I should have come off a little slower per the instructions, but that is my own fault for not listening to my surgeon's nurse practitioner. But the shock of feeling the raw pain with no Oxycontin to cushion it, combined with the debilitating sickness from the Oxyccontin withdrawal, yes, the pain was intense. But like you, I had good reasons to want to get off of it, but I can't claim it was my own willpower that gave me incentive! My husband told me in no uncertain terms he wanted me to go off it, and that was what got me through it (to be honest, that and praying--and I was not a religious person before this!--were the only things that got me through the withdrawal.) I am lucky that my surgeon and his nurse did refill my Oxycontin prescription once, and didn't give me a hard time about it, but they had warned me ahead of time not to get to comfy on the opiates. At the time, I didn't understand why they were pressuring me (granted, I wasn't in my right mind because I was on the drugs); I thought they were judging me, and like you it made me feel like they thought I was a junkie, and it made me feel sad and anxious. But now, having gone through the withdrawal, it's like a light has been shined, and I finally understand. Nobody warned me about withdrawal. I thought that sort of thing only happened to celebrities and, well, junkies. I'd never been hooked on drugs, and I didn't drink much, so it never occurred to me that my body would get addicted without my mind consenting to it. Now I know why the doctors are so incredibly cautious about renewing scripts. It really, REALLY is for our own best interests. The pain I am still in is so much preferable to knowing that my body might have gotten even more addicted to that nasty stuff. And THAT's the only thing that gets me through the pain. That, and prayer, and believe you me I never thought I'd talk about prayer out loud.

I don't wish opiate addiction on my worst enemy.

So, the pain: mine too is centered around my rib cage, and also in one particular area of my upper spine. Sometimes it's excruciating. As stupid as it sounds, the only relief I get is to lay flat on my back. (Which makes it a little tough right now for me, because my goal is to increase my stamina so I can return to work in 2.5 weeks, so I try to stay upright between the hours of 8-5, just for practice.) But laying flat really does re-set my pain level. Have you found something like that that works for you?

Once I recovered my strength from the Oxycontin withdrawal, I started working on the Gabapentin. I was on 1800 mg a day, and I titrated down to 300 mg a day, per my nurse's instructions, and promptly got really really sick. So I went back on it, waited a few days, and tried again. My nurse gave me a prescription for 100 mg doses. For a week I took 200 mg a day, then for a week I took 100 mg a day, and then for a week I took 100 mg every other day. I am now 2.5 days free of it, and once again I am going through withdrawal. It's not as bad as trying to come off of the 300 mg, but it still sucks. I feel like I'm an 12 step group attendee obsessively telling my story, but my point is, high pain levels, for me, are a much better option than addiction, now that I know what a demon addiction really is. Now that I'm off the Gabapentin, the needle-stabbings in my back and feet have returned. I'm doing deep breathing, and tai chi, and just trying to ignore them. My husband says I have a really low pain threshhold. I don't think that's the case anymore. Because in my mind I'm just trying my damnedest to sideline that pain, put it in a box and bury it, breath through it, rest till it passes, whatever I can to make it go away. I feel for you though. I literally feel your pain.

I feel lucky I have a surgeon with a good bedside manner, but don't judge your doctor too harshly for trying to get you off the painkillers. I feel like the drug withdrawal has been MUCH MUCH WORSE than the actual recovery from the surgery. Drugs suck. I never want to touch that nasty stuff again. I feel like I've been poisoned. I feel like my doctor didn't warn me ENOUGH.

I wish you so so much luck in dealing with your pain. I recommend some kind of chi gung practice, if you have something like that in your area. I'm also thinking about trying reflexology. The deep breathing I'm doing is helping, I think, at least it's making breathing easier for me, which I was struggling with. And just one foot in front of the other, I guess. And rest. I'm amazed at my lack of energy and stamina. Whenever I push it I hurt. Hang in there. This forum is sometimes the only thing that gets me through the day! I am grateful for it.

the_baroness
10-16-2013, 08:05 PM
Just thought of something else. This is sort of silly, but I made this when I was feeling laid low and needed some inspiration.

https://www.etsy.com/treasury/MTY3NjM3NzV8MjcyMjUxOTk0Mw/surviving-spine-surgery

(This isn't an ad. I don't know any of these sellers. But their products inspired me. Not sure if this is against the rules of the forum to post this, but our admins can feel free to remove it if it is, my feelings won't be hurt.)

Only the strong survive! Hang in there!

PeggyS
10-18-2013, 07:53 AM
Baroness,

Thank you for the insightful post. I'm very cautious & concerned about needing heavy duty pain meds. I've witnessed the struggles my husband has with intense pain & needing narcotics. He's not a junkie, but he feels that way, at times.

Sending healing prayers to both you & WLB1 & others in recovery from surgery. My time is coming when I'll need support, too.

Peg

susancook
10-20-2013, 07:14 PM
Hi WLB, First of all:
There is no map
There is no true average
There is a huge variation of experiences

I too worry about your spikes to "10" that have continued. Seems like something is pinching. Doesn't seem normal to me as your pain should be decreasing over some amount of time and yours is not decreasing.

The experience with drugs is so individual. I just stopped taking them, mostly and was OK, w/ irregular need for medication. It seems to me that the narcotics just blur the horizon for me and dull my brains and make me sleep more. I am sorry that you do not have a good pain management MD to help you. Is there somebody w/ experience in pain management that can help you?

I wish you well and hope that you find out what causes the spikes in pain. Something sounds out of alignment. I suggest keeping track as much as possible on when and where it hurts to give your surgeon the best info possible.

Susan

Dora
10-20-2013, 08:06 PM
I can't help with the timeline part for a year because I'm only 12 weeks out but I updated my thread with where I'm at physically if you want to go read.

For pain management.... I was in a ton of pain before surgery so I still hurt. Really hurt at times if I'm dead honest but its so much BETTER than before the surgery that I'm "good" if that makes any sense? I've been weaning myself off the oxy. I was on gabapentin but was off that because my family thought it was making me too difficult to deal with (I kept breaking down in tears) about 2 weeks post op.

Until a week ago I was on Cyclobenzaprine (Sp?), 1 pill whenever I took the oxy. I ran out and didn't bother refilling to see if I needed it. I'm nauseous all the time now so I think that might be linked to adjusting to not having that along with some spasms.

On the oxy I was prescribed 5mg pills. I was on three of those every three hours... then we weaned somewhat weekly from there by pulling out a pill until each time I was down to 1 at the times, then started dropping times.

I tried to judge that I was ready by evaluating my pain control when I was due to take it. If the pain level was "better" than I had dealt with PRE surgery I pushed it off. I'm down to 1 5mg pill 1x a day.

Not sure any of that is helpful... but I do think you have to go really slowly to get used to what it feels like to "feel" again if that makes any sense. Otherwise I think you would want to jump out of your skin.

WLB1
10-23-2013, 07:42 PM
Saw the Pain Control folks today. I have an SI joint problem and will get shots. It seems the Surgeon actually said I should stay on low dose pain meds, but not to me. He said it to the Clinic in his referral. Sure wish he told me. Four months of worrying and fear. Gee! The Clinic will take over meds including muscle relaxers and lyrica and cymbalta. When it is time to wean off, they will help with that. They are taking a slow approach, taking a week between each med tweak, with the goal of having my pain be at a level that will enable me to lead a normal life. It is not necessary to have a high pain level. I found out that one should never wean themselves off the hard stuff. You need to let your Doctor help you with that. It is recommended to reduce one's level of pain meds by one tenth per week or longer to avoid withdrawal symptoms. That means it should take at minimum ten weeks to wean off. I had a bad week and so had to sleep all weekend. I didn't take my pain meds all weekend cause I was asleep. On Monday I was in full blown withdrawal. Yikes! I am glad there are Pain Control Centers now. I had to sign a contract with them agreeing to strict control of my meds by them. I can only get my meds at one pharmacy and only one Doc. I will have to do a monthly urine specimen at my monthly mandatory visit, to be sure I am not using the wrong things or drinking alcohol. I have never been an alcohol drinker because of my LDS religion so that is not a problem. Just knowing I don't have to endure horrible pain and that I have some tightly controlled assistance with my meds is a comfort. At last, I can relax and just concentrate on getting my strength back. It's a good feeling. Thanks, everyone! You are a wonderful support!

WLB1
10-23-2013, 08:31 PM
Saw the Pain Control folks today. I have an SI joint problem and will get shots. It seems the Surgeon actually said I should stay on low dose pain meds, but not to me. He said it to the Clinic in his referral. Sure wish he told me. Four months of worrying and fear. Gee! The Clinic will take over meds including muscle relaxers and lyrica and cymbalta. When it is time to wean off, they will help with that. They are taking a slow approach, taking a week between each med tweak, with the goal of having my pain be at a level that will enable me to lead a normal life. It is not necessary to have a high pain level. I found out that one should never wean themselves off the hard stuff. You need to let your Doctor help you with that. It is recommended to reduce one's level of pain meds by one tenth per week or longer to avoid withdrawal symptoms. That means it should take at minimum ten weeks to wean off. I had a bad week and so had to sleep all weekend. I didn't take my pain meds all weekend cause I was asleep. On Monday I was in full blown withdrawal. Yikes! I am glad there are Pain Control Centers now. I had to sign a contract with them agreeing to strict control of my meds by them. I can only get my meds at one pharmacy and only one Doc. I will have to do a monthly urine specimen at my monthly mandatory visit, to be sure I am not using the wrong things or drinking alcohol. I have never been an alcohol drinker because of my LDS religion so that is not a problem. Just knowing I don't have to endure horrible pain and that I have some tightly controlled assistance with my meds is a comfort. At last, I can relax and just concentrate on getting my strength back. It's a good feeling. Thanks, everyone! You are a wonderful support!