Is this pain normal?

[Christine63]

My son Daniel, age 16, had spinal fusion from T3-L1 on Monday July 2nd. We were in the hospital five days and sent home with Vicodin for pain. He has been taking 8 pills a day- two every six hours- and is still SO miserable with pain. Stabbing pain, aching pain, and he can't get comfortable in any position and can't sleep, etc. It's been 9 days since the surgery. Is it normal to be in so much pain still? I called the nurse today and she prescribed Valium to help with muscle spasms. I hope that helps us both get some rest.

It's so scary. I'm so scared that the pain won't get better and my fears are getting the best of me. I'm filled with anxiety, suffering from some sleep deprivation myself, and just stressed to the max caring for him and keeping the household running at the same time, and I feel so alone. His post-op appointment isn't until August 1st. I think it's ridiculous to send a kid with this serious of a surgey home with the family after five days and there's no support. I wish a nurse would stop by. I wish someone would tell me that he's progressing perfecty normally and that everything will be OK.

I'm really having a hard time here.

[Carmell]

First, big hugs to you. It's not easy being a parent and seeing your child (regardless of age) in pain and there's nothing you can do to help.

IMHO, having only vicadin isn't a good plan. 6 hours is too long to wait, so it sounds like he's having breakthrough pain. When that happens, playing catch-up to the pain meds doesn't work well. IMHO, he needs something that he can take more often - maybe two meds (not so strong narcotics) to alternate so there's never a "down" time, until his pain is well under control. Call the doc (again) and see if just doing the valium and vicadin (alternating one every 3 hours) is a good plan, or if there is something else. I know he shouldn't be taking aspirin or motrin-type products, so that limits how many options he has, but there are more options than just vicadin.

Good luck and I hope he finds comfort soon.

[crepehanger]

Christine-

My heart breaks for you as a mother- I don't remember any of the other members here being sent home with only vicodin- I had duragesic patches as well as vicodin for breakthrough pain- I think you should go on back in to see the doctor if you live close by instead of waiting until August. Neither one of you is going to hold up under that kind of strain !!! We're all here for you- Lisa

[Christine63]

The valium seems to be helping

I'm going to give it to him every four hours to get the muscle spasms under control. He's playing a video game with his girlfriend at the computer in the next room right now, sitting in a regular chair, and I hear him laughing. It must be working. We were given a second pain medicine Ultram (Tramadol), but it didn't help him so I stopped giving it to him. I used duragesic phentanyl patches for two-month migraine I had back in 2002, and I must admit there are times I wish he had some. He had a phentanyl PCA in the hospital because he couldn't tolerate morphine, so I know it works for him. I'll call the doctor again if the valium doesn't help him.

I thought about buying a Lazy-Boy chair today- just to give him a comfortable place to sleep. As cozy as his bed is, lying down is just so painful for him, no matter which position.

I must be experiencing some sort of care-giver stress. My fears are getting the best of me. I'm trying to be my usual glass-half-full optimistic self, and I'm faking it in front of my son, but inside I'm turning into a mess. It doesn't help that my mother hasn't called even once to check on her grandson since I phoned her after the surgery to tell her that he was out of a successful surgery. It's crazy that amidst all this anxiety being a mother to my boy, my own "mother issues" are playing a role.

[lnetzer]

Big hugs to you, this is by far the hardest time on this side of the surgery, that first couple weeks coming home from the hospital. My son's surgery was on a Monday, and we were sent home on a Friday evening. I was on pins and needles, and we also were only given Vicodin to give our then 13 yr old son for the pain. They told us to piggy back it so his body was never without the meds that first month or so. I believe it was 2 pills every 4 hours that first 2-3 weeks, and then down to 1-1/2 pills the following week. He actually stayed on the Vicodin for close to 2 months, and then our surgeon had him only taking it at night to help with sleeping.

Do you have a body pillow? That helped my son tremendously, along with helping him readjust in the bed every hour or so. I think he only slept maybe an hour or 2 at a time those first days, had no appetite, and needed almost constant monitoring. I was on my own, my family didn't support our decision to have surgery (we really didn't have a choice considering his curves), and my husband had to be back at work, so I had to nap when he napped, it was like having a newborn. It is really hard but know it will get better. We are exactly one year post op yesterday, and my son is doing nearly everything he did before.

[Christine63]

Thank you

I will go and get a body pillow today. It sounds like this degree of pain is not unusual, and it gives me hope to hear that your son is so much better today.

As for family not supporting the decision... my son hid his back from everyone by wearing two loose shirts, even in summer, and not bending over in front of anyone. I've had to send before and after photos of his back to family members to show them why this surgery was necessary. Even still I get remarks like, "well, I had scoliosis as a teen and I did exercises and it went away" and I have to defend myself.

But that's not such a big deal. Helping him get his pain down and his active life back is my primary goal. He's a lacrosse player, and I hope he'll be able to play sports again some day, even if it's not lacrosse. For now, at least he's managing a walk up the street and back each day.

He slept in today- didn't wake up until 7am, but was in such pain, I could hardly get him to sit up. We had to do a series of manouvers and then I had to use all my strength to pull him up to take his medicine. He was so mad at me for not waking him sooner and letting 8.5 hours go by between doses of vicodin.

[flowerpower]

Hi Christine,

Hugs to you...I'm sorry you are going through such a difficult time. I had gotten a memory foam pad (I think its 3") for my son's bed to give a little more cushion. Like lnetzer said, 1 or 2 body pillows may also help. We would put pillows they way they did in hospital; if he was on his back, 1 pillow under knees and 1 on each side to rest his arms. On his side, 1 pillow between knees, 1 behind back and 1 in front. This helped him rest a bit more comfortably. When he first came home, he was given a 7-10 day prescription of Lortab. I had set the alarm (especially at night) to remind when the next dose was due. By the time Lortab was almost out, he was still having considerable pain. The dr. office was reluctant to prescribe anything else (of course they like to get the kids off meds asap) but being that Joe was still in considerable pain, I had to speak up and insist (something this experience has taught me to do) that he be given something as tylenol was not going to help much. So he was then given hydrocodone.

About 3 weeks post-op seems to be a turning point for many of the kids. By that time, many start to go off the meds and experience less pain and more mobility. 6 weeks post-op seems to be another turning point at which you may be cautioning him to take it easy!

This is a hard experience to go through for parent & child, even more so when you have no support. Well, we are all here to support you

It may be up to a year before your son can return to sports. Many of the kids go back to their sports when given the ok. Some contact/extreme sports like football, skydiving, bungee jumping may be restricted/discouraged but there are kids who go back to competetive/olympic sports like swimming, skiing, tennis, etc. When my son was 7 mos. post-op, we took a camping trip to Yosemite and he was able to go on pretty long hikes (6-8 mi. round trip) with little to no discomfort. Once your son get past this initial pain, you may be amazed at how well he does.

Take care,

Renee

[Carmell]

More hugs coming your way. I agree that this first 2-3 weeks post-op is the hardest on him and you, both. Be very careful when you are trying to help him up out of bed, or up from any position. He must not twist or do anything that will interfere with the fusion process. Even when he starts feeling much better, that fusion takes 6-12 months, or longer, to completely become solid. Log rolling out of bed works, and lifting his body under his shoulders (if you're strong enough) is good.

My Braydon likes to sleep in our reclining sofa. It's easier to get out of than a flat bed. After a week he's ready to go to his bed again. About the bed - if its too high or too low it can be a problem getting in and out of. Maybe he needs an adjustment to the height?

I hope his pain is being controlled better now. It's very hard to not be able to make it go away right now. But it will get better, I promise. A year from now you'll look back and have such a sense of accomplishment at what you've both endured. IGNORE your friends and family. They are clueless. Doesn't do you any good to let them control your thoughts. You need to concentrate on the positives of the surgery and helping him in his recovery. Everyone else can jump in a lake right now. It would be nice if they could offer to run errands, grocery shopping, etc., but if they won't, don't let them get to you.

Take care! You are doing great.

[Christine63]

Body Pillow

Thanks Renee and Laurie and Carmell,

I just brought home a body pillow. Daniel said with a smirk, "So, that's for like if you don't have a girlfriend???" I said there were different ways he could use it. (But I'm not sure what those are!) I'm really really tempted to go to the furniture store and buy a Lazy-Boy chair. They're like $400, and pretty big, but I may take him to the store and let him test drive a few. He can always take it to college with him in a couple years.

I appreciate all the advice and support. I only know of one person who has had this surgery, a former student from long ago, so I feel quite alone. It's nice to have this forum.

His bed is really high up. It's an antique iron bed and we have a nice, really high mattress and boxspring on it. I even put memory foam on top. There's no way to lower it at all, and his sisters' beds aren't any lower either. This morning, it took all the strength we had to get him up to sit on the edge of it to take his medicines. The Lazy Boy is sounding even nicer now that I type this.

If anyone's interested in our journey, I've been photoblogging. www.chrissysphotoaday.blogspot.com has a photo a day (or more) throughout the year. The latest photos and entries have been about Daniel (whom I call Squirt). I even have a before and after photo of his back on there. And you can see his ginormous bed in one photo.

Time for the 3:00 dose of meds...

Chris

[RugbyLaura]

Chris,

I'm glad to hear Daniel still has his sense of humour! He sounds like a great kid, or is he too old to be called a kid? Had a look on your blog & his back looks amazing! What was is curve measurement pre-op? Keep smiling, it'll be worth it in the end.

Laura
ps It's strange, we must be related...... at least 3 people in my (extended) family claim to have had Scoliosis as children which was miraculously cured by either swimming or standing up straighter! If only it were that simple......

[Christine63]

He's still a kid

A 6 foot + kid, but I still call him Squirt. It started when he was 2 years old and got ahold of the yard hose... he actually thought it was his real name for a while. For years my husband pestered me to stop calling him that, but I have a feeling it will last his whole life. We have a wonderful relationship. I am so very blessed.

His attitude is amazing. I'm the one falling apart with his pain, he's just keepin' on...

He tried all sorts of things with this new body pillow, including lying on top of it, face down. That didn't work.

He had three curves. The upper thoracic one was in the 40s, the lower thoracic one was 57 and the lumbar one was in the 40s, but it was a compensating curve, so it straightened out during surgery without instrumentation. The surgeon only had to go to L1, which was good news. From what I could tell from the post-op xrays, the remaining middle curve is in the upper teens or low twenties. We won't know for sure until he gets standing films done on August 1st.

Thanks Laura for being part of this much-needed support group!

Chris

[Karen Ocker]

From personal experience: ice packs are a great emergency relief from pain to supplement pills. My suggestion is to keep a log when pills were taken. Even though valium seem to help be aware that it can accumulate in the body since one dose is not fully excreted by the body for up to 3 days.

Also secure any controlled substances in the house yourself. Do not leave them around for friends to "experiment" with.

Since he is young he will recover much faster than adults. The fact that he had 3 curves(like I did) means the surgery could be more painful because more "uncoiling" was done.

[flowerpower]

Chris,

Took a look at your blog...I feel like I could have so much in common with you. The "before" pic reminds my alot of how my son's back looked before surgery, alot of unevenness in the shoulders. His correction looks really good. It may be too soon to tell, but does he have much correction as far as the rib hump?

You have a very nice looking family & I really, really enjoyed your flower, bird and scenery photos. Those are exactly the type of photos I love to take, I'm not that experienced but have gotten better. I've come to love photography as a hobby, I find it very relaxing.

Your son sounds like he has a great attitude, this recovery phase is a process but hopefully each day will get a little better.

Renee

[Christine63]

Karen and Renee,

Karen,
I did not know that about Valium. Yikes. I guess that's why it's so addictive. My grandmother was addicted to it for decades and it ruined her life. Well, we only got one prescription, and we keep ALL meds (including tylenol) in a toolbox with a combination lock. I will be sure to wean him off it slowly once his spasms are under control. Yes, I think a triple curve is what is creating so much pain. His lumbar area hurts, and it was a compensating curve in the 40s and didn't need fusion. I think everything has been moved in his whole entire back. Even his ribs in the front hurt. His rib hump has been reduced dramatically. I traced a curve of it pre-op from a photo and did that angle measurement and it was 17 degrees. Not exactly scientific, but it's nowhere near that now, at least I don't think so. You know, he can't exactly bend over!

Renee,
It's nice to find a kindred spirit clear across the US. (I'm in Virginia). Maybe you'll start a photo-a-day thing too! It's a nice hobby. I decided that 2006 was such a fantastic year, and I didn't record it in any way, that I won't let 2007 slip away from me like that. Thanks for your encouragement. I hope that the turning point happens soon, and that I can go hiking with my son in Yosemite again. He and his dad climbed a waterfall when we were there last year, and he and I hiked six miles in the snow to see the Sequoias.

Chris

[Carmell]

Hi again,

If you think about how much manipulation Daniel's back/spine has been through with this surgery, its not wonder it hurts! Amazing what they can do, but they pay a price with pain for a while, understandably. My Braydon gets Valium after every surgery because of muscle spasms. He is always off within a week, so tolerance/addiction hasn't been a problem.

You mentioned front rib pain. Again, if you think about the manipulation they did, stretching and untwisting the spine causes trauma to the cartilege in the front (you can't manipulate the spine without the ribs being affected). It can cause the cartilege to be inflammed, which is painful, because you breathe with your ribs. Your ribs are in constant motion. It takes longer for them to recover once they've been traumatized. Sometimes they call it costochondritis - inflammation of the cartilege of the ribs. Doesn't matter what its called, it's painful until those ribs heal into their new position.

Good luck! Many more pain-free recovery vibes coming your way.