19 Year Old Male. Scoliosis Progressing.

[JenniferG]

Hi John, thanks for the quick run down on where you're at. It seems you are not abandoned as I was worrying you might be, however, I tend to agree with others here who think the opinion of another good surgeon might be called for since you're over the one year mark and still in severe pain. By doing this, it might make the decision clear as to whether it's necessary to remove some of the hardware or try something else. To me, I feel it's important to know exactly what's causing the pain before actually trying this and trying that. Though I realise there are instances where this might be necessary to come to a diagnosis. What do your parents think is the best thing to do?

Hang in there John. Keep working on a solution and you will find it.

[naptown78]

John,
I agree with Jess...speaking as someone who has had an unsuccessful first surgery, it may help to get a second opinion. Sometimes a fresh pair of eyes on the situation can bring new ideas. I wish you success in your search for a better back ;-)

[asccbodypro]

John,

I can understand your frustration with being in pain and having no answers and docs telling you that you should no longer be in pain. While I have new problems with my neck that will need to be addressed in the future, at 1 year post op I still had significant pain....one area that was due to irritation from hardware and the rest just muscles that were unforgiving. Also, I was still on pain meds that most had given up at 4 or 5 months or sooner. I am 2 years post op in April and feel that I am mostly healed but still there are days where my muscles are still VERY unforgiving.....everything above the fusion.

I was a body builder and personal trainer prior to my scoliosis going crazy. Some on this sight thought perhaps body buidling added to the muscle embalances that I had. While I didn't agree at the time I'm thinking that perhaps they were on to something. Hind sight is 20/20 so they say. While we all need to strengthen our muscles, maybe the lifting at this point isn't what your muscles are in need of.....just a thought, you do now your body best.

I pray that you find a doc that takes you pain seriously and looks for some answers for you. Goodluck and thinking of you......

[JDM555]

Thanks everyone. I actually went to my primary health physician today to get a quick check up and told her about all the pain/sleeping issues/stress/depression/etc. and she tried to help as much as she could. She said that the injections aren't a good idea because they aren't good for my body and I shouldn't rely on them. That is about cortisone, but when I said lidocaine, she said it was just a numbing type of medication and wasn't going to give me any long term relief.

I told her I have a lot of pain and I stopped taking flexeril because I didn't want to get addicted to it. She said that's smart, but I still need some sort of muscle relaxant to help with all the spasms I am having as that causes a lot of pain. So she prescribed me another muscle relaxant, which I don't remember the name of on the top of my head, and when I asked if it would be addicting like flexeril, she told me no. So I'm not sure, I hope so.

I also told her about the headaches and migraines I constantly get, and she said to take a pain reliever/anti-inflammatory such as ibuprofen 3 times a day so I'm not in constant pain. She said 600mg 3 times a day, so that's 1800mg of ibuprofen a day, that seems like a LOT of ibuprofen for 1 day. So I'm not sure on what to do about that either. But considering the headaches and body aches and spasms, I might need that much being 6'5, since 200mg doesn't really do much for me. She also said the muscle relaxant should be taken 3 times a day, so those 2 should make me feel completely fine daily. But then again, it brings me back to the, I don't want to get addicted to these medications stage. My mother has severe body aches and headaches, and she takes up to 600mg at times and it doesn't help her because of the repetitiveness of the medication. I don't want to live off ibuprofen, I want a long term relief.

I will talk to my dad about getting a 2nd opinion from another scoliosis surgeon in the area, I don't think I'll be able to do Lenke, it will take too long and I will have to travel to see him. Thing is, he had an emergency today and was in the hospital today, so it will take a few days before I would bring up this matter with him. Please keep him in your prayers.

[asccbodypro]

[QUOTE=JDM555;119514]That is about cortisone, but when I said lidocaine, she said it was just a numbing type of medication and wasn't going to give me any long term relief.

II also told her about the headaches and migraines ...

John,

I was on Flexeril for along time and it always left me groggy the day after I would take it and I felt like I was under a cloud and I think it made me depressed. Have you ever been on Valium? Again, another med that is not to be taken lightly, however, for me it's the only muscle relaxer that works AND I don't feel like I'm taking it. I think it's interesting that Valium is suppose to calm people....I wish. But again, everyone is different. I know many people are always worried about being addicted but I believe it's all in ones personality....I'm sure many will argue but that's just my oppinion. You seem very conscience of what your taking and if it helps your pain than you shouldn't beat yourself up over needing it. You may find in time that it will get you "over the hump" and you won't need it as often. It's taken me a long time but I use it less and less. There are times that I want to but I hold off as long as possible.

As for your migraines......I can only go on my own experience so here it goes. When my migraines were at their worst I did every migraine med with no relief. I did all kinds of combinations and I always said I don't think they are "typical" migraines, I think it's my back/neck causing tension that eventually gets out of control. Of course that was ignored, thus I didn't realize it was my scoliosis for a few more years. Anyways, they would always start at the base of my head and my neck would be killing me. Eventually it would get so bad it would be like migraine....with the pain on one side and a stabbing pain in my temple if I opened my eye. I would throw up, have to be in bed with no noise and my eyes covered so there was just black. It was HORRIBE. What worked for me was Phernergan.

In the beginning I would take 25 mgs.....at this level it acts as a sedative if you aren't use to it. I was finally able to sleep and eventually it broke the cycle of the pain. I find now when my head starts to hurt and I know it will turn into a migraine I take 1/4 of Phenergan and 500 mg. Tylenol and that works if I catch it in time. Everyone is different but perhaps this will work for you???? Phenergan is another med that some will say shouldn't be handed out lightly. It's worth a shot and if it works it works. My husband is in the Coast Guard and this is what they give those unlucky coasties that get sea sick,, as a matter of fact it's THE only thing they give them. My 17 year old son is also on it and for a chronic illness called POTS (Postural Orthostatic Tachycardia Syndrome) and it helps with his nausea, he actually tollerates it better than his dad!

Also, in regards to the epidural cortisone shots.....I had three in my lumbar about 5 years ago. They did nothing for the pain. When I finally made it to my surgeon he said in his experience he hadn't met anyone with Scoliosis that got any relief from them. That's why I was so very apprehensive about getting another for my neck. It gave some relief for about 2 weeks now I right back where I started. At leat I tried and it's one thing less that I have to argue about with my pain management docs. They have refused anything stronger than Tramadol for me without taking other measures first. I don't want to take a narcotic everyday but there are those times that chasing and lifting a 3 year old around that just doesn't help the situation. I'm so tired of fighting I have just resigned myself to the fact that this is the pain I have and I will just wait until surgery becomes necessary. Sorry to have rambled on but hope this helps.

[JDM555]

Not rambling at all. I appreciate your input Susan. Thanks. The thing is, pain medications does help and it makes my life a lot easier to deal with this constant pain, but being 21 and over 1 year post op for a surgery that was suppose to be successful, I can't imagine what the road ahead of me is. I don't want to start taking pain meds now, and then get use to them and have a rough time sleeping in my early 20s. Imagine what will happen when I become 40,50,60, etc. It will be a nightmare. Like I said earlier, my mother takes the advil for her severe headaches and body aches and it has come to the point where it's very little to no effect. I don't want to be like that. I've been putting up with severe lower back pain and limited mobility for over 2.5 years now, I lost almost all of my muscle mass, I'm more exhausted than ever, and I think at this point by best option isn't looking at what medication to take, but more as what surgical process I need to do to fix this pain. I need a second opinion, and there is something wrong with my hardware, now my WHOLE entire back feels like hell. Down to the sacrum, up to T7-8, I'm feeling a super tight feeling like concrete was poured on my spine during surgery. I have sharp pains when I twist or bend in both my left and right sides of the pelvis, and both left and right side of my spine from the incision hurt and have muscle aching. This pain I'm in is causing me to not sleep well, not do well in school, or be enthusiastic about my life. I'm getting more and more depressed remembering how many things are messed up in my life. And going downhill with the pain as I recover longer and longer is making me scratch my head. I knew with my luck I would need a revision, I saw it coming months ago. If that is what I have to do, I will do it to finally enjoy life because this pretty much ruined my whole teen and early 20's years so far. Keep me in your prayers and wish me luck.
John

[JDM555]

Well. Today I went to UCSF for a second opinion and saw Sigurd Berven. I was told he was a good scoli surgeon and he's known for revisional surgeries as well. I got there at 10 AM, had to take 2 X-rays which took...forever. The wait was well over an hour. Got the x-rays and then went to wait in the room for Berven. The resident then came and asked me some questions and medications and blah blah blah.

Then after waiting another 1-1.5 hours, Berven comes in and takes a look at me standing/bending over/x-rays/etc. He then found it odd that during the 2nd surgery, which was 2 days after the first one, which was when Cheng went in because a "bolt was loose", and they had to readjust it, that it might be the same one that might be causing me the pain, lower right L3 bolt.

He took a look at x-rays again, and I told him injections didn't help, he said by looking at my x-rays, it appears the last level fused might be the cause of the pain. When looking at my spine, L2-5 has a huge curve, and the last level fused is in the middle of the curve, so that vertebra might have a lot of stress on it and is causing me this pain. He said first thing to do is to get a CT scan, which I agreed on of course, and then to see if another cortisone injection shot between the vertebra's L3 and L4. If that brings me relief, then he said it would be able to prove there is too much stress on the L4, and that he might need to fuse an extra level. By looking at my x-rays, I understood that Cheng wanted to save me some flexibility, but there is still a big lumbar curve down there. I thought he would go to Sacrum or L5, but he stopped at L3.

[titaniumed]

John
When are you doing the CT?

Can you do the CT and the shot in one visit? Is that possible?
Ed

[jrnyc]

hey John
i well remember how much you...as would anyone...wanted to save flexibility and hoped to not need a fusion all the way down...
it still doesn't sound as if you have problems all the way down to the pelvis....
i am sure Dr Berven can help...as he is a top top SRS guy

i think you took the right step going to see him...
injections are iffy....better to have an excellent scoli surgeon monitoring you!

jess

[JDM555]

John
When are you doing the CT?

Can you do the CT and the shot in one visit? Is that possible?
Ed

I'm not sure. I will ask about it though. I hope I can hit two birds with one stone. I hate making the 45 min, early morning trip in traffic. I'll ask later this week when Cheng gets the letter Berven sent him.
John

hey John
i well remember how much you...as would anyone...wanted to save flexibility and hoped to not need a fusion all the way down...
it still doesn't sound as if you have problems all the way down to the pelvis....
i am sure Dr Berven can help...as he is a top top SRS guy

i think you took the right step going to see him...
injections are iffy....better to have an excellent scoli surgeon monitoring you!

jess

Of course I wanted to save flexibility, like you said, anyone would. I didn't want to be fused to Sacrum, but I mean I'd rather have it done right the first time instead of save some flexibility and have severe pain later on. We don't even know if that is causing the pain, it's just an idea. I have pain down to the pelvis on the left side. But the majority of the pain, is at the L3 especially when I bend forward or backwards.

Yes, I don't like injections, and I told him I don't know if I should take another cortisone and he said it's not a huge deal, usually taking 3-4 shots a year is fine. So after this, I don't want to take anymore shots. I just hope this is the cause of the pain and I can finally start healing to a 100% again. I WANT TO GYM! Lol

[jrnyc]

i hope the next shot works, too, John!
that would be the best case scenario i would think!

i believe you will get back to the gym...
just not as fast as you would like, i am sure!
but i do believe you will be working out...successfully...again...

jess

[LindaRacine]

John
When are you doing the CT?

Can you do the CT and the shot in one visit? Is that possible?
Ed

Not at UCSF.

[LindaRacine]

I'm not sure. I will ask about it though. I hope I can hit two birds with one stone. I hate making the 45 min, early morning trip in traffic. I'll ask later this week when Cheng gets the letter Berven sent him.
John


Of course I wanted to save flexibility, like you said, anyone would. I didn't want to be fused to Sacrum, but I mean I'd rather have it done right the first time instead of save some flexibility and have severe pain later on. We don't even know if that is causing the pain, it's just an idea. I have pain down to the pelvis on the left side. But the majority of the pain, is at the L3 especially when I bend forward or backwards.

Yes, I don't like injections, and I told him I don't know if I should take another cortisone and he said it's not a huge deal, usually taking 3-4 shots a year is fine. So after this, I don't want to take anymore shots. I just hope this is the cause of the pain and I can finally start healing to a 100% again. I WANT TO GYM! Lol

John...

Injections, when done perfectly, can be diagnostic. If the injection works, the surgeon can know with almost 100% reliability, that surgery will solve your pain.

--Linda

[LindaRacine]

Well. Today I went to UCSF for a second opinion and saw Sigurd Berven. I was told he was a good scoli surgeon and he's known for revisional surgeries as well. I got there at 10 AM, had to take 2 X-rays which took...forever. The wait was well over an hour. Got the x-rays and then went to wait in the room for Berven. The resident then came and asked me some questions and medications and blah blah blah.

Then after waiting another 1-1.5 hours, Berven comes in and takes a look at me standing/bending over/x-rays/etc.

I wish their appointment people would warn new patients that waits of 1-2 hours are common. Even though I work there, my last appointment was 2 hours and 15 miinutes, and that's with Dr. Berven waiting for me when I got out of xray. Although they have initiatives to reduce the amount of wait time, all of the UCSF clinics have this issue. They just have far more demand than supply. The first time I went to the liver clinic, I had to wait over 4 hours.

--Linda

[JDM555]

John...

Injections, when done perfectly, can be diagnostic. If the injection works, the surgeon can know with almost 100% reliability, that surgery will solve your pain.

--Linda

Yes, that is what he told me about. I don't know about getting another cortisone shot in my spine though, I don't want that to be in my system at such a young age. And it's in my spine too, out of all the places. Plus, the injection is very hard to get perfect, people tell me it was to be super super accurate to give you any relief. Judging by only getting 1-1.5 weeks relief off the first cortisone, it wasn't the right place.

I wish their appointment people would warn new patients that waits of 1-2 hours are common. Even though I work there, my last appointment was 2 hours and 15 miinutes, and that's with Dr. Berven waiting for me when I got out of xray. Although they have initiatives to reduce the amount of wait time, all of the UCSF clinics have this issue. They just have far more demand than supply. The first time I went to the liver clinic, I had to wait over 4 hours.

--Linda

Yes, I read some reviews and everyone stated the 1-2 hour wait, so I expected it. 4 hours? Lol. I hope you brought lunch with you and maybe your laptop to check out your emails and what not haha.