19 Year Old Male. Scoliosis Progressing.

[Pooka1]

Wait a minute. just make sure the same thing won't happen at L4 as happened at L3 if you go below L3. They have to figure out why the fusion to L3 failed. Was that the correct last instrumented vertebrae based on bending films? Questions like that. Maybe you stated this somewhere in the thread but I couldn't find it.

I know that kids with double majors tend to only be fused to L3. So L3 may be enough for lumbar curves at least in kids. Hopefully it is enough for your curve if you have a lumbar curve. I thought you had a TL curve though.

Good luck.

[jrnyc]

i thought the problem was caused by the screws...
on page 61, John mentioned that Dr Cheng opened him up again and added thicker screws
in the L2-3 area, and then the area did not fuse...

it sounded to me like the current surgeon is of the opinion that fusion to L3 failed, and that fusion to L4
is now needed....

jess

[rohrer01]

You can't fuse the spine unless you have some way to anchor the rods properly and securely, so they don't wiggle and come loose. I'm wondering if there isn't a different type of instrumentation (perhaps older) that won't need to make use of these enlarged holes. Hang in there man. We're all looking forward to hearing from you, but not until you feel well enough to post.

[LAL]

Thinking of you, John...anxiously awaiting good news from you!

Lori

[JDM555]

Hey guys. Before I bring you all up to speed on my journey. I needed help with a quick question. My surgeon set me up for Oxycontin 20mg at either 40/60mg 3 times a day starting today to wean off IV, and after taking 60mg this morning, it killed my appetite and made me feel horrible. It made me feel very nauseous, have no appetite, and struggle to stay up all day. I told him to cut it down to 40 right off the bat, but I was wondering if there was anything just in general to take that wasn't oxycontin/oxycodone. Is there any other medication similar to take like the slow release oxycontin? Any ideas?

[BendyBill]

Good to hear from you and looking forward to hearing about how everything has been going. Sorry I can't help with the OxyContin question.

B

[titaniumed]

John

So sorry you are at the weaning stage, you know it’s a tough time.

Be sure to let them know what your side effects are, your doctor will then make the decisions. Most of the meds given are semi synthetic opoids. The side effects will vary, but not too much.....

We have been wondering what has happened to you. I’m assuming you had another procedure....any idea what happened? Did they go in from the side or front?

Hang in there
Ed

[LAL]

The nausousness, loss of appetite and drowiness will subside as your body gets used to it. My daughter took it for a little while and had the same problems, but after a few days the side effects started to go away. She was able to function normally and go to class. She took it when her pain was at its worst and had no problem weaning off of it. All of the opiods have pretty much the same effects when you first start taking them orally. Oxycontin is an extented release but the fast acting ones like morphine sulphate and dilaudid have simular side effects at first. The Fentanyl patch is similar to oxycontin, but supposed to be a little stronger. I don't know if since its a patch it has any lesser side effects. Maybe someone that has used it will be able to answer that.

Don't cut yourself short on the pain control because there are many studies that show that if pain is not controlled initially it can lead to chronic pain down the road. My daugters pain was not well controlled at all in the hospital or afterwards because for some reason her surgeon felt that 16 year olds have very little pain after the first week and he was out of state and our family doctor was afraid to prescribe opiods to a teenager. I think it may have contributed to her chronic pain she has had for the past 5 years. Ask for something to control the nausousness. Keep trying whatever they will prescribe while you are in the hospital so that you are comfortable when you go home.

[rohrer01]

I wouldn't recommend the fentanyl patch. I've been on it a few times. It states right on the box not to use it for post-operative pain. I can see why. It's extremely miserable to come off of after being on it even for a relatively short period of time (feeling like you have a sunburn all over your body, extreme sweats, chills, some people throw up - it's aweful). The oxycontin is easier to come off of. I haven't had back surgery so I can't begin to relate to the pain you are in, but I've been on my share of meds for the pain I have. The BIG trouble I had coming off of oxycontin was diarrhea, which might be a good thing as I hear people with this surgery have issues being backed up. LAL is right about pain control. Don't let it get out of hand. That's one thing that I've learned over the years suffering with chronic pain. If I keep it well controlled I'm fine. It's when I get mad and don't want the meds and let the pain get out of control that it's extremely hard to get back under control. You are fresh out of surgery. As far as I know, all the hard painkillers make you nauseous or lose your appetite. Let your doctor know how you feel. He will know best what to give you, after all he knows what he did to you. Hang in there. You're in everyone's thoughts.

[jrnyc]

hey John
so good to hear from you....

i lost way more weight when i started taking oxycontin compared to hydrocodone...
i found the oxy kills my appetite much more so than the other such medications...
anyone who has been on both may recognize what i am talking about...
thus, i went down to 87 pounds (at about 5'4) when i started taking oxy...
i am up to 92 pounds now and fighting to stay there!
i try to remember to not take anything...especially oxy...on an empty stomach....
the nausea can get bad...
i can go without oxy or hydrocodone for any number of days...cold turkey...
but my back starts to hurt much worse....

if i were you, i would ask the doctors about.switching, after weaning down the oxy, to hydrocodone....
just a suggestion....

anytime you are up to it, i am sure i am just one of many concerned for you and
hoping to hear good news....

jess

[mabeckoff]

John , you are in my prayers

[JDM555]

Yea. It's been a crazy couple of previous days. Surgeries are over and I'm off IV medication, I told my surgeon I'l pass on 60mg x 3 oxycontin and will do 20mg x 3 oxycontin with occasional vallium every 4 hours. Most nurses are nice, extremely nice, some nurses tend to need to get hit in the face with a shovel. I got MANY visits, and it hurts, but worth it.

What happened with the L3 "problem" is the old 6mm bolts Cheng used were so loose, that they were sliding in n out of the sockets causing the clunking and grinding away the holes. So the 6mm holes, were now too big to fit larger screws such as 7 or 8mm. Imagine screwing in a 6mm into a metal wall, after out take it out, it better be damn solid and tight to get a 7mm in there nice and tight so you can largen the hole. Same here, but this scew got loose, pulled out, and kept jerking in and out of the hole, in a sense grinding away the hole. So now the hole isn't anywhere near 6mm. So there was a possibility I'd need to skip L3 all together and go straight to L4 since L3 was pretty much destryoed. Showing difference in X-Rays between the sizes of the holes in L2 and L3 was a joke between surgeries. So I was FURIOUS. Luckily, he managed to use 7 mm's, but instead of regulary using them, he had to use them much deeper where the old bolts hadn't destroyed the area yet. I think he just added bonegraft around the hole to make it solid overtime. I saw the X-Rays today, a small peak, and I think I'm very pleased. Will share as soon as I can. Still need to heal and get the staples out.

This recovery is 901830581038501830581 times easier than Cheng's. Lost 4 Oz of blood in the first surgery and something similar in 2nd, not ridiculous 2-3 liters like Cheng where I was in need of a transfusion and had a rough recovery.

I'll report more tomorrow. But even though these surgeries have been more much more serious, recovery is much easier than Cheng's, shows from the experience of this staff. Oh btw, I was able to walk without a walker and up down stairs like a non surgical patients the following day of my second surgery.
Thanks for all the prayers.
John

[Doreen1]

What remarkable updates, John! Do you know when you'll go home?

Warmly,
Doreen

[jrnyc]

what an amazing difference..in surgeons, in results....
so happy for you, John....
and it shows you KNEW...you knew something was wrong, youj know your own body...
why doctors don't adknowledge this...ALL doctors....and share decisions with patients is a crime!
too bad it is so hard to sue doctors in ths country!

but from what i know of you on forum, i bet all you care about now is
healing, getting better, and getting on with your life..
sounds like now you will be able to!
i am so glad you fought for this, for what you knew would be possible
and would work for you....

i wish you an uneventful recovery.....
congratulations!

jess

[JDM555]

Thanks. But I really want to put my primary surgeon on blast, like really really. All my relatives and family are annoyed when they find out. He basically destroyed my life. I didn't attend college, ruined my life, my confidence, etc. No gym. I was in pain daily. I understand a doctor can mess up, but he made way too many mistakes. He ruined my back.