19 Year Old Male. Scoliosis Progressing.

[jrnyc]

hi melissa
i am thrilled to read that you are feeling so much better!!!

hope you improve every day!

jess

[JDM555]

Not that I want you to have more surgery but I had my revision surgery July 18- 15 1/2 hours long - and I feel really good most days.I have found a very good surgeon and feel like he knows exactly what he is doing. Good luck in your decision

15 and a half hours? Wow. That is insane. Does the surgeon do 8 hours, then take a 1 hour nap, and wake up and finish the other 6 and a half? Lol.

But considering putting in new hardware and stuff takes 8, I guess taking out the old and then redoing everything doubles the time.

And I'm glad that you are recovering well. It's only been 2 weeks, and if you feel really good now, that's great news.

[titaniumed]

John

So sorry about this. Be sure to let us know what Dr Pashman thinks.....

Even though many people travel for their surgeries, I would be a little hesitant just in case something went wrong. I had Dr M as my primary care doctor, it prevented me from having to go back over to my GP all the time. I set this up this way so I had the best doctor calling all the shots.

Since I had my gall bladder problems, it was easier to have my vascular surgeon here in town. That guy has seen everything! If an anterior is needed, many scoli surgeons use a vascular surgeon to “dig the hole” if you know what I mean. If you do have a non-orthopedic complication, like myself, its nice to use the same vascular guy. I hope this makes sense. It keeps you from flying all the time.....

Ed

[JDM555]

So far Dr. Bederman and Dr. Errico agreed to take a look. Haven't heard from people at TC or Dr. Lonner. Hopefully by the weekend, I'll have the CT scan online and all X-Rays, then by monday, I'll try to call Anand and see what they say. On top of that, Monday, the surgeon locally that wanted me to try some novocain shots to see if that could pinpoint the problem, will try to get them approved by insurance, so hopefully by next week I should have a better understanding on what's going on.

I just hope I figure everything out quick, because my back is hurting and I'm starting to feel new types of pains, even on my left side now lol. I miss the gym.
John

[mabeckoff]

15 and a half hours? Wow. That is insane. Does the surgeon do 8 hours, then take a 1 hour nap, and wake up and finish the other 6 and a half? Lol.

But considering putting in new hardware and stuff takes 8, I guess taking out the old and then redoing everything doubles the time.

And I'm glad that you are recovering well. It's only been 2 weeks, and if you feel really good now, that's great news.

Thanks John. I am feeling so much better after 3 weeks this time as opposed to last year's surgery. I am going home tomorrow with so much less pain than the last surgery. I see that you are sending a consult with Dr Bederman. He is the best


Melissa

[JDM555]

Thanks John. I am feeling so much better after 3 weeks this time as opposed to last year's surgery. I am going home tomorrow with so much less pain than the last surgery. I see that you are sending a consult with Dr Bederman. He is the best


Melissa

That is absolutely great news. You have no idea how happy I am for you. I understand you are going through a lot right now, but stay positive. You should be ecstatic, you feel great right after surgery, I don't know about you, but if I feel like that after my next surgery, I'll have a smile on my face 24/7.

[mabeckoff]

That is absolutely great news. You have no idea how happy I am for you. I understand you are going through a lot right now, but stay positive. You should be ecstatic, you feel great right after surgery, I don't know about you, but if I feel like that after my next surgery, I'll have a smile on my face 24/7.

Thanks John I do have a smile on my face

Melissa

[JDM555]

So, I managed to show Dr. Perra from Twin Cities, Dr. Bederman from Orange, CA, Dr. Neuwirth from NY and Dr. Errico also from NY. So far, only Dr. Perra replied. He said the spine looks balanced and that he would recommend getting an MRI on L4-5 to see if they were degenerating. If they were, he wanted me to get a discogram to see if they were causing any pain. He said if so, then he recommends a full on surgery with removing the old hardware and redoing it all and going down to L4. But he said if it was fine, and there is no pain, that he recommends doing a TLIF or Minimally Invasive surgery to add bone graft to just fuse the bottom two levels I have.

Dr. Bederman only saw my X-Rays, but he also said my spine looked OK and balanced, but he wouldn't of chosen the same options as Cheng. He said also there are 2 options, to add some bone graft to quickly fuse it, or to take care of it and do a huge revisional surgery and go down to L4.

I guess it comes down to whether I should have the big surgery now, or the small one to fuse myself and heal quickly. Thing is, both have risks as I see it. The risk in having the big revisional, is well, the removal of hardware is going to be hard, the surgery is going to be over 10-12 hours, the recovery will be a lot harder than the first surgery I had 1.75 years ago. I think will all the predrilled holes in my back, the placement of the new hardware won't be as solid, I don't know that for sure though. Just don't see how it would be as solid drilling in a spine that already has holes drilled in it. Going down to L4, might cause L5-S1 to give me pain later down my life.

And other surgery, is if I do a small surgery to fuse the bottom two levels L1-L3, then sure it can help. But with the stress placed on L4, and the curve currently at ~20-25 degrees, might cause my pain with L4-S1 down the line, and I will be needing the huge revisional anyways.

So I'm looking at it like, why not fuse it and fix the L4 issue at the same time, hit 2 birds with 1 stone. Sure it's going to be hard, but I just want to get it over with.


I'm trying to schedule some novocain shots to try to pinpoint the pain, but it's hard trying to get a hold of these doctors. It seems like I should get a MRI just to make sure. I find it hard to believe that this much pain I'm having can come only for a non-union on 2 levels. What do you guys think?



Also, the surgeon in my area that I liked and who was straightforward said the same exact thing. He wants an MRI on the levels below to see if there is degenerating causing some of the pain I'm having. So I guess I know pretty much what's wrong with my back, I just need to do those tests and then make a decision. But I think it's pretty obvious.

[jrnyc]

hi John
i looked up discogram...even with herniated discs, i didn't know what kind of test it was...
internet says it is a test not often used...it is used when an MRI "fails to show
if discs are herniated or damaged"
i don't know how much pain the test causes or doesn't cause...just wondering if you
could have an MRi instead...might show a whole lot more and eliminate the need for
a discogram...

my herniated discs showed up immediately on a regular X ray....
maybe with your hardware, that isn't possible....
i am just concerned you not go thru any extra pain that could possibly be avoided by
having an MRI...

i feel so badly that you are facing this decision...
it does sound like the surgeons need to figure out what is going on...and it sounds like
maybe fusion including L4 is needed...
i think you have a lot of guts if you choose the full revision and not a patch job...
i know the full surgery makes more sense for the future....but i still admire your courage and am crossing my fingers for the right decision to become clear...and
for the other surgeons to get back to you!

jess

[JDM555]

Thanks Jess. I think the MRI is to determine the condition of the disc. The discogram is just a procedure where they inject the disc with some sort of dye, to see how it reacts. If the dye stays still inside the disc, then it's a normal disc, but if the die starts to leak out everywhere, it's a sign the disc isn't in good condition. Plus, it determines if the pain is in that disc or not. I heard it's insanely painful if the disc is in bad shape, so I don't want to do it. That's why I'm leaning towards Novocain shots to try to pinpoint with simple anesthetics rather than cortisone or the discogram.

I just scheduled an appointment for Novocain shots on the 31st on level levels, L1-L2, L2-L3, and L3-4. Hopefully the novocain shots will be able to determine if my pain is coming from that area or not. I now need to schedule an MRI for L4-L5.

Edit: Just scheduled an MRI on the 22nd. Seems like everything is fitting into place. Hopefully both will be beneficial, and by then most surgeons will reply with their opinions. And I can think of a solid plan and schedule a darn surgery to be on my way to recovery.

So I have scheduled the MRI, scheduled the injections on the 31st, and then scheduled a follow up with the doctor on the 12th of September. Then I asked her if I decided to have surgery with him, how long the wait would be, she said it would be 2-4 weeks. The rest of September is booked, so looking at beginning of October to have surgery.

[Doodles]

Been away a while but wanted to respond to the discogram. My first doctor I went to in Texas said I needed discogram and myleogram before surgery. I knew very little at that point and after first appt. and lots of promises went ahead with what they told me to do preparing for a November 08 surgery. (Changed plans after a month or so and ended up later with Lenke.) I was prewarned on the pain of it so I guess I was ready. It wasn't as horrible as I thought it would be but not fun. However, my curve from that time to my March surgery really advanced even more & I had a lot more pain the months leading up to surgery. I felt like it had caused more degeneration. Dr. Lenke wouldn't have done one. So sorry you will have so much more surgery correction. Just hope whatever you decide will work for you. Janet

[jrnyc]

hey John
so glad you will be able to avoid the discogram!
and it sounds like the appointments are finally falling into place...
it would be great if some of the surgeons you sent material to will respond while you are
getting all these preparations taken care of...

i hope the novocaine shots provide the answers that are needed...

best of luck going forward...

jess

[peachrush7]

Glad to hear you've already got so many opinions, and more of an idea of what you're facing. I hope you'll be able to decide what's best for you, and find peace in that decision. If it was me, I'd want to go ahead and like you said, take out the two birds, even though it will be a much more painful way to go. I can't imagine having to choose between those options only a year and a half post-op.

I'd definitely agree with your take on doing the MRI over the discogram. I had one before my 2nd surgery, because the MRI wasn't showing why I was till having terrible and increasing pain a year after my discectomy. It is very very painful when you have a degenerated/herniated disc, but it showed my herniation clearly and confirmed my surgeon's theory of where/why I was still having pain. It was crazy, as they tested several discs above and below where they thought the hernation was without telling me which disc specifically they were testing at a time so I would give an unbiased answer of my pain level. They went and tested each one and they were not comfortable, but nothing terrible. But when they got to my L2-3 YOWZA it was crazy how bad it hurt. The Dr was like, well, I guess you know which level that one was lol.

Anyway...if you don't get good results with just an MRI, and your surgeon still suggests doing it, I'd recommend it. But it doesn't sound like not having surgery in your case is an option, and you'd likely need fusion lower either way at some point. So a discogram doesn't really sound like something that is needed in this case.

Hope you get some clarity!

[JDM555]

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.

[titaniumed]

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