19 Year Old Male. Scoliosis Progressing.

[debbei]

Thanks all. Yes, I read the discrogram is extremely painful. But that is only if your discs are in bad shape, the worse they are, the worse the pain. Hopefully my discs aren't in bad shape, and it's just the pain from the hardware placement and failed fusion. I'm looking forward to the new surgery, I'm sick of this pain, I hate my life and how empty it is being handicapped and not being able to do anything. I'm always in a depressed and sad type of behavior cause I'm wasting my life and not doing anything. My mom keeps trying to motivate me to go to school this coming semester and getting a job or going to swim everyday, but it's hard because she doesn't know what I'm going through. She acts as if I enjoy being lazy and not doing anything. I hate it more than her.

Getting back on topic lol, hopefully the MRI and all the injections work out. And then I can just relax and schedule a surgery and wait patiently. If I can get out of this surgery with no pain and return to the gym, I won't even remember all the hard times and suffering I've been through, it will all melt away...just to be normal and live a pain free life. As if the normal college student trying to graduate and find a job to support a family in the future isn't stressful enough haha.

I hope I can help everyone who reads this thread by posting updates all the time, and showing them what to look for and not to give up when a surgeon gives up on you. Hopefully I'll be over with this in no time.

Your mother must not understand. Has she been to any of the recent appointments with you? I am sorry that you are getting no sympathy at home, that must really stink. ((Hugs))

[mabeckoff]

John,

Would it help to have your mother talk to any of us who are in the same situation you are? Maybe it will give her some more understanding. I would be glad to talk to her

By the way, what surgeon are you going to have the second surgery with? Doesn't it stink that you think the first surgery will heal you and then it doesn't? I pray for you every night. Much as I did not want to have the third surgery last month, I am so happy that I did

God bless

Melissa

[JDM555]

John

I have known non-scolis with 1 level that are almost crippled and on disability. There should be no doubt or denial that you ARE in pain in your situation.

I know when I made my decision to have my surgeries, I told my surgeon that I didn’t want any future surgeries....in other words, make it bullet proof. I was prepared as he told me that something would go wrong, it was guaranteed, but I wanted it all over with, the whole pain experience of living all the years with scoliosis. Since many surgeons leave the lowest level or two unfused in younger patients, its hard for me to voice an opinion in your case being so young.....a very tough decision on your part. But then again, I adapted to a pelvic fusion and I don’t have any complaints and I’m extremely satisfied with my outcome.

Always be hopeful that all this will come to an end soon. Just like FLT, Melissa, Linda, and many others, you will get fixed up here real soon....

I’m so sorry about the lack of understanding on your mothers part.....I was in the exact same situation many years ago, non-scolis just don’t understand at all.... You will need to take about a year to fully heal after your revision. This healing period should not include any stress, or pressure to attend engineering school or being accused of laying around. This should be fully understood by the people that are in your support circle. Its unfortunate that you already gave it a shot, but the 2nd chance is equally if not more important than the 1st go around. Just because it didn’t work the first time doesn’t mean you have to hurry up your recovery after your revision. You know enough about recovery and scoliosis to explain your situation to everyone in your circle. Everyone needs to understand exactly what’s happening here. Some scoli surgeries are some of the most painful surgeries that humans can endure....

Try not to get depressed...We always move forward with our bodies and our minds....just a little bit each day. Set realistic goals....

You are doing a great job with all the given circumstances.
Ed

Yes. I guess you're right. I'm in a weird type of pain. It's very very deep, down to the bone, and it's aching severely. Especially when I move around, I guess that means cause there is friction between the two bones that were suppose to be healed. But when I stay still, the pain is sort of minimized. Walking or stairs or anything, the pain gets pretty bad. And at night, it's horrible. It's definitely getting worse. I'll have the next surgery, and most likely take it off till spring semester if I decide to take that semester, which is like January 20th or something, so like around 3 months of recovery, which I think is plenty. I returned to school 4-5 weeks after my first surgery full time, it was hard, I don't think I was ready yet. But this time, I'm not going to gym at all or do anything that might risk another non union. I'll swim to exercise and wear the bone stimulator full time for however long I need to, maybe 3-6 months.

I try to not think about my back a lot, because it makes me feel like crap, so I try to avoid it. It's not like I cry every night or am depressed all day, but usually at night when I have bad pain I'm not too happy about my situation. Lol.
Thanks Ed.
John

Your mother must not understand. Has she been to any of the recent appointments with you? I am sorry that you are getting no sympathy at home, that must really stink. ((Hugs))

Well, I think what I said was a little overboard, my parents understand the amount of pain I'm in and show sympathy, I love them both. It's just I've been sitting on my computer chair in my room not working or doing much for the past 3 months now in summer break. She said I can take summer off and rest, so when I told her I wanted spring semester off, she probably just thought I'm enjoying not doing anything and trying to just have fun. But my mom is extremely understanding and she feels for me. I feel bad for even saying she yells at me thinking I'm lazy, I think that was a few months ago, but after realizing my first surgery was a failure and getting the opinions from other doctors, and seeing my trying to contact like 8 doctors and set up MRI's and what not, she understands that I want to take care of it and my back is just really holding me back. So, it's not that she's mean or not understanding, it's just she wants the best for me and doesn't want me laying around for too long, she wants me to get out and get stuff done and enjoy my life. I bet it's painful on her too to see her 19-21 year old son losing all his weight from the gym and laying around in pain on a daily basis. And my dad helps me as much as he can with doctors and getting opinions and doesn't push me to do stuff. He said I can take a break from fall to fix my back and was understanding.
John

John,
By the way, what surgeon are you going to have the second surgery with? Doesn't it stink that you think the first surgery will heal you and then it doesn't? I pray for you every night. Much as I did not want to have the third surgery last month, I am so happy that I did

God bless

Melissa

I'm not sure on the surgeon yet, but there are a few I have my eye on. There is Sigurd Berven in UCSF, the private practice in Los Gatos, and Samuel Bederman in SoCal. They are all great surgeons and part of SRS. I didn't like how Berven was very vague with his responses to my question and was insanely hard to get a hold of. He seemed to make things appear as if they were better than the given situation, thinking a bone stimulator would fix me up 1.5 years after surgery knowing that I have a failed fusion, basically wasted 2 months of my summer, where I could of gotten my surgery and recovered already. Private Practice is a great doctor, extremely nice and straightforward, was honest all the way through, and seemed to know what he was doing. He didn't try to force me to go under his care, he wasn't desperate. And Bederman is a great doctor, and was one of the few who offered to give me his opinion right away. He is also a great doctor.

So, I think knowing the cause of my pain and learning about my situation and being smarter than I am for my first surgery, I think the decision is going to be easier, cause all three are good surgeons. Whoever I pick will have good results. I just have a good feeling with the guy in Los Gatos. He seemed like a great surgeon, that I would like to visit post op for check ups.

[mabeckoff]

John, I may be leaning toward Samuel Bederman but he has been so great and helpful for me. He is great and I vote for him

Melissa

[jrnyc]

hey John
suggestion....go with the surgeon your gut tells you will be best for you...especially if your friend has recommended one to you from personal experience....
i also think it is important for you to be able to reach your surgeon...before, during and
after...for you, from what i know of you, that seems VERY important!

i believe you will make the right choice for your needs this time around...
thoughts and prayers for this surgery to take care of everything...
so you can get on with your life!

jess

[JDM555]

Thanks all for the prayers and luck you're sending my way. I'll need it for this coming surgery. By early-mid September, I'll know for sure what surgeon I'll end up choosing, the date of my surgery, and what the surgery will be on. I got a pretty good picture of what's going to happen, but just waiting on more opinions, MRI, and injections.

[JDM555]

Well...Mid September is here, and I still don't know what surgeon will do the surgery, or when the surgery is. I saw the same surgeon again...things are a little more complicated than I thought. He said MRI shows very little degeneration, which was probably caused before surgery. He said it's good that it's not a big deal and most likely not a cause of my pain. He said the hardware, the non union, and the asymmetrical loading on L4 are all playing a part. He said if he would do surgery, he would remove all my hardware, he would extend to L4, he would use titanium, and most likely have to remove a disc or two (most likely where the failed fusion is) to increase mobility and try to balance out my spine as much as possible. So it seems like a pretty damn big surgery. He seemed a little hesitant though, or like he wanted to postpone the surgery till he made sure or I was aware of the risks, not sure. He said with revisional surgeries I'm looking at 50% success rate, which doesn't make me too happy. He wants me to go to his partner to get another opinion and to then come back to follow up and by then, he said discuss surgery options. Next appointments available are Sept. 21st and the 26th. So it seems my surgery won't be early October, might not even be October at all. At this point I have to read up on this "disc removal" and using titanium and trying to get more opinions.

[mabeckoff]

I was thinking about you the other day and wondering how you were doing. In regards to your surgeon, do you like /trust/feel comfortable with him enough to have him do additional surgery on you. Have you gone any where else to get a second opinion?

Hope things get better for you

Melissa

[JDM555]

I was thinking about you the other day and wondering how you were doing. In regards to your surgeon, do you like /trust/feel comfortable with him enough to have him do additional surgery on you. Have you gone any where else to get a second opinion?

Hope things get better for you

Melissa

I'm not sure what you mean when you say "comfortable with him enough to have him do additional surgery". Are you implying that the surgeon I'm talking about is the same surgeon who did my first surgery? If so, no this is not the same guy. I have talked to many other surgeons besides my primary surgeon. I wouldn't trust my primary surgeon to open me up again. This surgeon is the best one so far, but I think I might still have to search for other surgeons. I want to see Dr. Lenke or Boachie, some of the top surgeons and if they won't do my surgery, just get their opinion.

[mabeckoff]

I'm not sure what you mean when you say "comfortable with him enough to have him do additional surgery". Are you implying that the surgeon I'm talking about is the same surgeon who did my first surgery? If so, no this is not the same guy. I have talked to many other surgeons besides my primary surgeon. I wouldn't trust my primary surgeon to open me up again. This surgeon is the best one so far, but I think I might still have to search for other surgeons. I want to see Dr. Lenke or Boachie, some of the top surgeons and if they won't do my surgery, just get their opinion.

Yes I got confused. I thought that you were still with your original surgeon. I know that my surgeon did get and review your information

Melissa

[jrnyc]

i assume he means to remove a disc or two and put in "cages" or "spacers" as they
are called...
i am kinda shocked at the 50% remark....i had no idea that revisions didn't simply
fix things that are wrong....i thought the rate of success for it would be higher....

i am so sorry that you are running into all these obstacles to taking care of the problem
and getting back to a normal life without pain!

jess

[peachrush7]

Well...Mid September is here, and I still don't know what surgeon will do the surgery, or when the surgery is. I saw the same surgeon again...things are a little more complicated than I thought. He said MRI shows very little degeneration, which was probably caused before surgery. He said it's good that it's not a big deal and most likely not a cause of my pain. He said the hardware, the non union, and the asymmetrical loading on L4 are all playing a part. He said if he would do surgery, he would remove all my hardware, he would extend to L4, he would use titanium, and most likely have to remove a disc or two (most likely where the failed fusion is) to increase mobility and try to balance out my spine as much as possible. So it seems like a pretty damn big surgery. He seemed a little hesitant though, or like he wanted to postpone the surgery till he made sure or I was aware of the risks, not sure. He said with revisional surgeries I'm looking at 50% success rate, which doesn't make me too happy. He wants me to go to his partner to get another opinion and to then come back to follow up and by then, he said discuss surgery options. Next appointments available are Sept. 21st and the 26th. So it seems my surgery won't be early October, might not even be October at all. At this point I have to read up on this "disc removal" and using titanium and trying to get more opinions.

Sounds to me like this surgeon really wants to be careful about setting your expectations. That was how mine is (was). After having 3 surgeries already, he was not in ANY hurry to do the full fusion on me. He insisted I go get other opinions and would make no promises that I would have a spectacular result. I had actually asked him about doing the full fusion after my 2nd surgery failed, but he told me at the time I was in so much pain, he was concerned about my wanting to do the whole fusion. He wanted me to wait until my head was a little more clear before I pulled the trigger. I guess his concern was, I have the full surgery, and then regret it immediately because it was "over kill" or something. (Personally, I still wish I had had it back then, but I understand that I probably was not in a good place to make such a huge decision, and wasn't really prepared at that time to go through the recovery. I can see the wisdom in his putting off a year now, even if I wish I had had it earlier.)

Anyway, I think good surgeons are not pushy and they want to make sure you are ready to undergo another huge surgery, especially after a failed one. Not saying my previous 3 surgeries were anything as big as the full fusion, but I think in general, doing any sort of revision can get murky and they want to know you're aware they may not be able to "fix someone else's mess" entirely.

My surgeon I think set my expectations a little low, as to how great my correction would be and my limitations. But, I'd rather him do that and be pleasantly surprised with the wonderful outcome, than the other way around.

The only thing I don't think my surgeon understood (and how can they if they've never felt it) is how much pain we live with sometimes, and how we GET IT. We get that the surgery is awful, especially in your case where you've already had it! But we also get that if we don't have the surgery we probably aren't going to get better, or be in less pain.

Anyway, I hope you are able to get all the opinions you need and get a surgery date with the right surgeon!

[JDM555]

Yes. He is very careful and wants the best for me, but he thinks it might be more than just those 3 things regarding my pain. I think it would help a lot of my pain if he did that surgery and it was successful, but the 50% isn't making me think that anymore. He isn't in a hurry to be doing surgeries either, I want to get it over with, but I think it's more severe than that. No surgeon so far has been pushy regarding my second opinion with them. There are a few options for me, I'm not sure what to do though. They all have risks. I also understand what you mean when you say surgeons don't feel the amount of pain we go through on a daily, hell, even an hourly basis. They understand we're in pain, but I'm not the type that complains about pain to everyone and is forcing myself to take medication to get an easy ride, and then not walking/moving/etc. all day because it feels good. I'm going through hell, and I am actually FORCED to take anti-inflammatories. The pain is so severe and repetitive, I can't complain about it. It's hard. If a complainer had this, they wouldn't stfu all day is what I'm trying to say. I keep it bottled up and try to stay off meds and it's just a damn pita. Walking and swimming is causing it to become worse, WALKING AND SWIMMING. If I bend/lift/twist at the minimum, I'm looking at no movement and meds asap for the rest of the day and following days. It sucks. I can't even sleep at night. Recently I wake up every night from the pain and can't find a comfortable position to sit in. I have to get up and walk around until I get tired and continue sleeping. I walk like an old man, I can't walk too fast or I'll experience severe pain. And now I get cracking in my hardware even STANDING STILL. I don't get it. I have no idea how.


Here are some options so far for me.

1. Do a minimally invasive surgery to add bonegraft over my current hardware between L1-L3. (Pros: Small surgery, short recovery, not risky. Cons: Won't fix my pain 100%, will have same hardware which might cause degeneration and more surgery/pain down the road.)

2. Do a big revisional surgery with the removal of old hardware, addition of new titanium hardware extending down the L4 and removing a disc or two for mobility. (Pros: Will take care of 3 issues my surgeon said might be causing my pain, my curve will be under 5* and pretty much perfect. Cons: Complications or risks with adding new hardware and removal of discs, degeneration and more stress on L5-S1 since now there are only 2 discs under my hardware instead of 3.)

3. Do a big revisional surgery with removal of old hardware, but this time extend to S1. Most likely won't have to remove a disc or two for mobility. (Pros: Take care of 3 issues my surgeon said might be causing my pain, my curve will be under 5* and pretty much perfect, I won't have issues down the road regarding degeneration or stress on the discs below my hardware, most likely won't have to remove a disc or two like extending to L4 to get a perfect curve after surgery. Will be able to straighten it out great with my discs in place, which will make it less risky than #2 since there will be removal in that one. Cons: Flexibility will be the biggest con, risk of removing hardware and adding new hardware.


I haven't discussed option 3 with any surgeons yet, to be honest, I don't care about flexibility. Being 6'5, I have long arms, I can tie my shoe and pick things up without bending my back at all. I'm not going to be playing sports that need much flexibility and I won't be doing Yoga or anything like that. As long as I have no pain and have the confidence in the back of my mind that I'm fully fused down to S1, I'll be happy. Another thing is, after I get this fixed, I'll be returning to gym lifting weights 4-5-6 days a week, so I don't want to speed up degeneration in the discs under my hardware if I only have fusion to L4 and cause myself to have more surgery down the road. I could care less about the scar, none of my concern. I'll discuss this with surgeons and try to figure out what to do.

[jrnyc]

hi John
i am so sorry that you are in so much pain!
i know what it is like to live with...and you have all my sympathy!

just my opinion, but it sounds like options 2 or 3 would be best...
if you really do not care about flexibility, which is a concern for most patients who
have fusion to S1, then option 3 sounds like the best bet....
i wonder what the surgeons will think of option 3...
if you did not discuss it with any of them, can you go back and discuss it
now...to all the surgeons you have already talked to....?

what a tough decision for you to have to make....
and not sleeping must be making it all so much harder!

thoughts & prayers are with you to make the best decision to
become pain free...and to get back to your life....

jess

[mabeckoff]

I really think that option 3 is the best choice for you based on your wants and needs from your next surgery. I think that you have to sit down and discuss this choice with whatever surgeon you feel you will be going with.

My thoughts and prayers are with you while you make this difficult decision

Melissa