19 Year Old Male. Scoliosis Progressing.

[JDM555]

John,

I also had my fusion stopped at L5. I have one disc left and doctor said he wasn't sure how long it would last. I didn't want to lose the flexibility. I am also beginning to feel the pain. I'm back on pain meds on the bad days. I try not to take them everyday, cause it was tough trying to kick them. I also stopped working out. My doctor just sent me back to an ortho, who specializes in pain management . I hope this works, because by mid afternoon, I am very edgy. I take it out on my wife, so it makes it hard for both of us. I just want to be normal again. It feels like my spine is crushing on itself at times.

rich

I'm sorry to hear that Rich. I've been experiencing this pain I'm having for over 2 years now on a daily basis and it makes me want to crawl out of my skin, I can't stand it. I hope you don't need a revisional surgery and everything works out great.

Regarding my issue, Berven requested my Physiatrist at Stanford to order a CT Scan so we can see what the deal is regarding my back. But the Physiatrist is saying that he doesn't see the "need" to do the CT scan and it's a lot of radiation. He said he figured out my problem and it's regarding the screw in my bottom right.

Thing is, if it was indeed my screw, if he released cortisone/lidocaine right above the screw, I should of got more relief than I got. I got minimal relief for 1.5-2 weeks when cortisone normally lasts for months. I don't know what to do now, I want to find a solution to my pain and injections aren't doing anything.

I emailed twin cities and he said he recommends CT scan to see if everything is fused and to see what is causing the pain. He said I most likely can get a request sent for a CT scan from Berven himself instead of the people at Stanford. How risky is it regarding radiation if I get a CT scan?

My back is still not that great, but I got a very very bad flu the past few days and it's horrible. Especially when the weather is high 80's. Very annoying.

Dr. Perra from TCSC said he would like to see MRI before surgery if I had similar pain to see what it could be. So I'll try to make a copy and send him a CD to get his opinion.
John

[titaniumed]

John

I have read that CT scans emit 440X the radiation of a single coronal x-ray. I have had 3 of them in the last 9 years and about 40 full spine x-rays since 1975. I hope that’s not too many. I don’t have any cancer, my vascular surgeon looked twice. My CT’s were used because of my stones, kidney and gall, and one looking at disc herniations (4) back in 2002.

If you do have one, make sure to get your own copies burned to disc. You don’t want to be doing these too often.

Ed

[mgs]

I have had 4 CTs in the last 23 months, plus several garden variety X-Rays. Radiation isn't desirable, but I didn't feel that the alternative (the doctors not getting the necessary info to treat me, hence no treatment) was acceptable.

[JDM555]

Well, I visited my original surgeon, Ivan Cheng today. It was a bit tough this time around. I already knew this was coming from the previous appointments and his answers to all our questions. He said he doesn't recommend pursuing any sort of diagnostic treatment such as CT scans or cortisone injections because they have risks, and most likely lead to more surgery and in his opinion it won't relief my pain. Almost every question we asked, he responded with I don't know. He said the x-rays look fine and the pain is hard to diagnose and he doesn't know where to start or what to do.

He actually said his advice to someone in my situation, was "to just live with the pain for the rest of my life". That made me really annoyed. He kept trying to say if there are any other opinions who suggest otherwise, to go to them and stop asking him questions about it. I already knew from the day I got cracking/pain, he wasn't going to be much help by the way he answered my questions. Everything looks OK and it's normal is all that he said that appointment.

So here I am, 21 years old. I can't run without severe, disabling pain. I can't go to the gym to lift even 5lbs, because if I even stretch, my back will tighten up to the point where I feel paralyzed from the stiffness/pain. I can't play any sports. I'm in constant daily pain from the second I wake up to the second I go to bed. I have constant migraines and have more than plenty stress from school. I don't know what I'm going to do. I guess my best chance is to stick with Berven and take the risk of getting the CT scan.

Maybe that will show us something interesting that might cause this pain. With there being a lot of radiation in the CT scan, there is a possibility it might cause cancer. When I had my blood test a few weeks ago, I was very very low on Vitamin D. The General Doctor told me it's not a great sign and hopefully it'll improve with taking 3000mg of Vitamin D on a daily basis the next few weeks. But she also told me almost all patients with Cancer have Vitamin D deficiency. So I don't know if this has anything to do with it, but just a thought that crossed my mind.

Any other suggestions?

[debbei]

Hey John,

I know you are under lots of stress due to 1) the pain and difficulty in finding a resolution and 2) school. I KNOW that for myself, when I am under lots of stress, the muscles back in my 'spot' get very knotted up and extremely painful.

I know you can't just magically reduce stress, but have you noticed a connection?

[debbei]

oh and I should have added--that guy is just an ass. Let's see how he'd like to be given advice at 21 yrs old to just live with pain for life. Sheesh--talk about compassion. I take it you're done with that jerk, right?

[Confusedmom]

Good grief! If you really need a CT scan, you should get a CT scan. Yes, they have high doses of radiation, but that doesn't mean one scan is going to cause cancer. Otherwise they wouldn't be used, and they are used all the time! I assume you've already done xrays and MRIs, which don't have as much radiation.

Don't get overly stressed about the vitamin D. Yes, low levels of vit D have been linked with cancer. But that doesn't mean you have cancer just because you have low vit D. I think the point is to get it back up to hopefully lower your risk of getting cancer. My doctor told me the same thing last fall and I now take 2000 iu a day.

You need to go to a really top notch revision specialist and find out what the heck is going on. The idea that you have to just live with pain for the rest of your life without even trying to diagnose it is ridiculous!!!!!

Good luck. Let us know what happens.

Evelyn

[JDM555]

Hey John,

I know you are under lots of stress due to 1) the pain and difficulty in finding a resolution and 2) school. I KNOW that for myself, when I am under lots of stress, the muscles back in my 'spot' get very knotted up and extremely painful.

I know you can't just magically reduce stress, but have you noticed a connection?

oh and I should have added--that guy is just an ass. Let's see how he'd like to be given advice at 21 yrs old to just live with pain for life. Sheesh--talk about compassion. I take it you're done with that jerk, right?

I may not seem like I do much. But yes, I am very stressed. I just always have a stressed out time in everything. I always over worry and I'm always nervous. It's just the way I am. So with school, I'm stressed. With my health, and it's not just my back pain, I'm stressed. Not getting to gym or do many activities makes me depressed and sad that I'm only 21 and feel like an old man. Also, I can't sleep at night anymore. So I'm always exhausted and tired.

I guess in a way, he was a jerk. But I knew that from the beginning like I said when he said everything is fine and never knew how to respond to any of my questions/concerns. As far as if I'm done with him, if he can't provide me with any information on how to proceed regarding this pain, then I don't see why I will be going back to him. I should of got 2nd and 3rd opinions before getting the surgery, that was my mistake.
John

Good grief! If you really need a CT scan, you should get a CT scan. Yes, they have high doses of radiation, but that doesn't mean one scan is going to cause cancer. Otherwise they wouldn't be used, and they are used all the time! I assume you've already done xrays and MRIs, which don't have as much radiation.

Don't get overly stressed about the vitamin D. Yes, low levels of vit D have been linked with cancer. But that doesn't mean you have cancer just because you have low vit D. I think the point is to get it back up to hopefully lower your risk of getting cancer. My doctor told me the same thing last fall and I now take 2000 iu a day.

You need to go to a really top notch revision specialist and find out what the heck is going on. The idea that you have to just live with pain for the rest of your life without even trying to diagnose it is ridiculous!!!!!

Good luck. Let us know what happens.

Evelyn

Thanks Evelyn. I understand what you mean about the cancer thing. I wasn't implying that I'm automatically going to get cancer if I get a CT scan. I'm just saying, something that crossed my head when I got my blood work back. The second surgeon I'm going to now, Sigurd Berven is one of the best revisional specialists in the Bay Area. So hopefully he will be able to help me out. And I agree about it being ridiculous, I couldn't even believe what I was hearing and didn't even make eye contact with him anymore. Was just disgusted at what I was hearing. Definitely ruined my day at school today.
John

[titaniumed]

John

This reminds me of Sharon up here with her old surgeon. It seems that some surgeons really “just don’t know” or are afraid to continue with patients. The procedures on each level are quite exacting, and in the lumbar can be very difficult....The statement about living in pain for the rest of your life was wrong.

She was told that nothing could be done, but had her PJK fixed by Dr Menmuir. It got to the point where it was best just to move on, and you have done just that. You are not the only one here that has had to do this. Many have had to sever their ties, and get revisions elsewhere.

You are on the right track.....stick with the plan.
Ed

[JDM555]

Yup. Hopefully Dr. Berven will be able to be of more help than telling me "I don't know" and to live with the pain. A CT Scan will be done shortly and hopefully that gives us a clue on what's going on. Will keep this thread updated.
John

[jrnyc]

hey John
i am so glad that you do not need to stick with the "i don't know" surgeon...so i know you won't...
and i would bet everything in your gut tells you to not go back to him...ever!
and any doctor who tells a patient...especially such a YOUNG patient... to just live with the pain...i personally think they should be shot! that level of stupidity MUST surely be illegal! you just want to transfer the pain to his body for a few months, and tell him to come see you after it is over....then see what he recommends!

thank goodness you have a great surgeon now with Dr Berven!

the thing with vitamin D...many many many people who live in the northeast hear the same thing from our doctors....just that we are low in vitamin D, not the thing about cancer....what a way to scare somebody!!
my hormone doctor (specialist) in CA first tested for levels when she ran a whole bunch of lab work on me....she found my vit D levels to be low, told me to start taking vitamin D every day...i did, and my levels are fine now...she said low vitamin D is a common thing in a lot of people, especially those in certain parts of the country and in those who just don't get outside much!
also, doctors of all people know that correlation doesn't mean cause!

i know everything will work out well for you...maybe it will just take a while longer than you wanted it to....

jess

[LAL]

21 year old daughter has the same problem

John,
My daughter is 21 years old also. She had anterior surgery in August of 2006. She is fused T-10 to L-2. She had pain prior to surgery and after surgery the pain is much worse. The surgeon kept telling us it was soon after surgery and it would improve. The x-rays look great, etc. Well, about 2 years after surgery we realized it was not getting better. This too has ruined her life. She has had cortisone injections, accupuncture, massage therapy, botox injections, trigger point injections and every narcotic out there. Nothing seems to work. She also now has terrible insomnia.
We have been to 3 or 4 surgeons for opinions (Stopped going to the original one because he just said she was too young to have pain and her x-rays looked good - never addressed she had a terrible problem, despite the wonderful looking x-rays. She too, has had surgeons tell her to live with the pain, find a sedentary career, go to a psychologist to learn to cope, that she would probably have it the rest of her life. We will not accept that and still keep seeking an answer. Last month we saw a very highly respected surgeon who said he could "fix" her with revision by getting surgery down to the sacrum. We went for another opinion yesterday and were told to stay away from spine surgeons (this is from a SRS surgeon) he said to learn to live with the pain and go to pain management and that since she had pain before surgery (even though it was not as bad as after) and has pain after that her pain is not related to scoliosis. He said he does not believe scoliosis causes pain.

We are also at our wits end. She is constantly in pain and has been since she was 16. She has not had a job, but does go to community college, taking mostly online classes. There are some she has to take a school and comes home and goes right to bed becuase her back is hurting so bad from sitting in the chairs so long at school. If she goes to the mall for an hour or 2, the next day she can hardly move.

I know how you feel, there are others out there like you. Sometimes these doctors make you feel like you are the only one. I know they do often with my daughter, saying "you are only 21, 21 year olds don't have pain like that" or when she first had the surgery at 16 they said she should be all recovered at 6 weeks and not in pain and for her to go hang out with her friends.

By the say, she has had MRI's CT's and tons of X-rays. They have yet to figure out what is wrong, but a couple of doctors (we have been to 5 over the last 6 years) have questioned whether or not the last level is actually fused because it shows a transparancy on the x-rays they said, but the surgeon we went to yesterday also saw the transparancy but said since her rod has not broken yet, it is fused.

[jrnyc]

LAL...i am so sorry to hear of your daughter's pain and all the problems she has had to cope with! it infuriates me to hear any doctor say anyone should "live with the pain," or anything like that...NO doctor should ever say that! THEY should be told by the patient they say it to "live with the pain" to hear who it sounds!! i wish we could transfer our pain to such doctors for just a few moments...so they could learn what we feel like! i had doctors tell me such things, and also tell me i wasn't sick, because they didn't test me for the right thing...as soon as they did, i popped up high positive for Lyme disease...and they still didn't believe how much pain i was in, because "Lyme disease isn't supposed to hurt that much"!! so i know how it feels to have a doctor not believe the truth you are telling them!
some of the moronic statements that come out of so called doctor's mouths are absolutely mind boggling!
i am very surprised any kind of good SRS scoli specialist would tell your daughter to stay away from spine surgeons! if i were you, and this is just my own opinion, i would see one or two more top SRS scoli surgeons to see what they had to say about revision....because i cannot imagine a 21 year old being having to live with such pain! come to NYC & see Dr Lonner, or Dr Boachie... or fly to CA & see a top scoli surgeon there...or put your name on the wait list for Dr Lenke...please don't take the word of that doctor! there are other revision specialists that i bet would have a different opinion of what could be done for your daughter!
personally, i believe that ANY doctor who utters the words "learn to live with the pain" deserves to lose their medical license!!

John....i know you will find a surgeon who can help you! surgeons who say the X rays look fine should be told that the x rays are not living your life...you are! good looking x rays don't help your pain....i know there are other good surgeons in CA...and i know you will find one who wants to help...no 21 year old should ever hear the words "live with the pain"!!

jess

[mgs]

LAL, The surgeon you saw on your most recent visit is flat out wrong. I had 3 unfused levels, which caused great pain, and my hardware was perfectly intact. My surgeon explained that a non-union can very well NOT be visible on X-Ray or CT and still be there. At my 1 year post-op visit, my X-Ray looked fine, but he said that from my description of my pain, he suspected a non-union. On my last CT, just before this last surgery, he thought he could see evidence of non-unions. . .but when he opened up my back, the non-unions were glaringly obvious.

My opinion is that the surgeons you've seen do not have the fund of knowledge/experience to manage your daughter's care. Good luck!

[JDM555]

John,
My daughter is 21 years old also. She had anterior surgery in August of 2006. She is fused T-10 to L-2. She had pain prior to surgery and after surgery the pain is much worse. The surgeon kept telling us it was soon after surgery and it would improve. The x-rays look great, etc. Well, about 2 years after surgery we realized it was not getting better. This too has ruined her life. She has had cortisone injections, accupuncture, massage therapy, botox injections, trigger point injections and every narcotic out there. Nothing seems to work. She also now has terrible insomnia.
We have been to 3 or 4 surgeons for opinions (Stopped going to the original one because he just said she was too young to have pain and her x-rays looked good - never addressed she had a terrible problem, despite the wonderful looking x-rays. She too, has had surgeons tell her to live with the pain, find a sedentary career, go to a psychologist to learn to cope, that she would probably have it the rest of her life. We will not accept that and still keep seeking an answer. Last month we saw a very highly respected surgeon who said he could "fix" her with revision by getting surgery down to the sacrum. We went for another opinion yesterday and were told to stay away from spine surgeons (this is from a SRS surgeon) he said to learn to live with the pain and go to pain management and that since she had pain before surgery (even though it was not as bad as after) and has pain after that her pain is not related to scoliosis. He said he does not believe scoliosis causes pain.

We are also at our wits end. She is constantly in pain and has been since she was 16. She has not had a job, but does go to community college, taking mostly online classes. There are some she has to take a school and comes home and goes right to bed becuase her back is hurting so bad from sitting in the chairs so long at school. If she goes to the mall for an hour or 2, the next day she can hardly move.

I know how you feel, there are others out there like you. Sometimes these doctors make you feel like you are the only one. I know they do often with my daughter, saying "you are only 21, 21 year olds don't have pain like that" or when she first had the surgery at 16 they said she should be all recovered at 6 weeks and not in pain and for her to go hang out with her friends.

By the say, she has had MRI's CT's and tons of X-rays. They have yet to figure out what is wrong, but a couple of doctors (we have been to 5 over the last 6 years) have questioned whether or not the last level is actually fused because it shows a transparancy on the x-rays they said, but the surgeon we went to yesterday also saw the transparancy but said since her rod has not broken yet, it is fused.

Wow. I'm sort of glad and disappointed at the same time. More so disappointed. Lets start off with...I'm glad, because I see I'm not the only one with this type of pain. Both your daughter and I have the same problem. Almost identical.

The disappointed part is, you just showed me a lot of surgeons are not experienced enough to know how to deal with this pain. It's like your daughter is ahead of me in this "journey", by a year or more. So it's not really making me feel all that happy knowing CT scans and tests and many opinions lead back to nowhere.

I've had severe back pain before surgery, and only got the surgery cause I thought it was from my rib hump and scoliosis, but I was wrong. The pain came back and like you said, it's worse. I'm always tired because my body is in pain every second of every day. I don't have breaks. I've been in this pain for about 3 years now, so I feel sorry for your daughter because she's been through this since she was 16. But I've had the injections, PT, massages, etc. and they didn't do anything either. At some point, injections and PT made it worse.

I can't walk for over 5 minutes without being in pain, stand for over 2 minutes, sit for over 5, etc. I can jog lightly, but it feels like I'm going to be paralyzed in the next 15 seconds from the amount of pain. I get cracking almost 30-50 times a day, depending on how I move, get up, twist, etc. Also, not only does my back hurt from those CRAPPY designed chairs at school, it hurts because I'm 6'5 and the chair is designed for someone that's 5'8.

And it's very hard trying to describe to others what I'm going through, because no one can sense the pain I'm in. Even some family members don't understand the kind of stress or pain I'm in. It's hard, but I'm not giving up yet. I hope I can do something that will help me out. And if I find something with some small relief, you will be the first person I send a message to, so you can hopefully help your daughter with it because I understand what she's going through...because I'm going through it too.

Good luck with everything down the road, and I hope we stay in touch because it's rare to run into a same aged person with the same problems.
John

And just reading it again...trigger point injections, cortisone, massages, PT, narcotics, etc. It sounds exactly like me. I also have insomnia. Wow this is crazy. I can't sleep at all, I wake up during the night a few times or wake up early and feel exhausted or like I haven't slept in days. I'm always exhausted and have severe fatigue. I've tried pain killers, to anti-inflammatory's, to muscle relaxants, etc. Nothing works. Sometimes I really do hate my life, and I see others complain about small, materialistic things in life, I just look at them with the "....are you serious right now?" look. Ahhh, just keep trying. I will keep your daughter in my prayers.

Wow, edit again. I read the previous posts you've had on the forum, and it's starting to freak me out on how similar our problems are.

"One thing he did say was that the original surgeon should have went down one more level, because she is curving a lot below her original fusion."

That is exactly what I got from my second opinion at UCSF with Dr. Berven. I'm fused from T9-L3, and I had a severe curve around the L1-L5 region, and he said the pain can be coming from the stress on the L4, and he wanted to give me an injection between L3 and L4 to see if that would relief my pain. Something your daughter has already tried. So, I don't know if I should be getting all these tests and CT scans and being exposed to all this radiation and poking, if your daughter has had the same treatment and no solution for her pain.

I sent you a PM.