19 Year Old Male. Scoliosis Progressing.

[JDM555]

To tell you the truth, I don't know how I'm doing it either. I guess it's just been something I've learned to live with being I'm in pain every second of the day. But it fluctuates, but like I said the past day and today have been bad. I can't sit still and nothing is comfortable and walking/twisting is hurting real bad. I have a disgusting migraine since I woke up and I took advil and didn't do anything. So a few hours later I took 500mg Tylenol, and very minor relief, but the headache is back and with my back pain, looks like I'm forced to take something to help me sleep tonight.

I have been toughing it out, because I'm use to the pain and try to stay away from these meds as much as I can, but it comes to the point where I won't be able to sleep at night from the discomfort.

[mgs]

When are you having your surgery to fuse the non-union(s)?

[JDM555]

When are you having your surgery to fuse the non-union(s)?

So far, there is no surgery planned. Just give it another 2-3 months for the SpinalPak II to do it's magic. Knowing how things turn out for me, I'm almost certain it won't completely fix my back and I'll still have issues. But surgery is just a possibility now. So I'm not sure if I'll even need it. I hope not, I'm tired of surgeries.

[peachrush7]

wow JD, you've really been through the ringer. Good for you for not just giving up, and finding an answer to your problem.

I can relate. After my 3rd surgery in as many years, I was finally feeling a little better. I had been living with severe, constant pain in my leg down to my foot, and the 3rd surgery seemed to help. But about 8 or so months post op, I started to have pain in my other leg, and when my surgeon suggested surgery may be the only thing that could help, well, let's just say I wanted to give up and cry.

It's so hard when you feel like you're missing out on life and you can't look forward to anything, because all you have is pain. All I know is, if I hadn't gone ahead and undergone my 4th surgery, I would still be having horrible pain in both my legs, unable to work, unable to enjoy life, unable to move forward. So while another surgery I'm sure is the last thing you want to think about, I'd just encourage you to stay strong and prepare yourself to do whatever it takes to get better. I probably could have eeked out another year or two, maybe more with the horrible pain I was in 24 hours a day. But I would have been miserable and not be any better for it.

Something that has helped me has been accepting the fact that I have a disease that is never going to be "fixed." Yeah, surgery for now has given me my life back, but I will always need to be careful, to take extra care of my spine. If we're lucky we get it sorted out a little younger, and enjoy the benefits sooner. But scoliosis will always be a part of us. And we have no promise that says we won't need another surgery later on down the road.

When I keep that in mind, it makes it easier to deal with the things that go along with being fused and so on.

Anyway, I really feel for you, and hope that you find the right treatment.

[JDM555]

Thanks a lot peach. Appreciate it. I know what you mean about it never getting "fixed", it's always going to come back down the line. I just hope I can enjoy a few years of my life. I don't mind living with restrictions such as sports or specific exercises in the gym, but if I could just get rid of the pain and do light exercises to stay in shape, I'll be extremely happy. I'm not even asking for a normal life, just normal enough to not be in pain and gym lightly.

Hopefully the bone stimulator will help me with the levels and it will let me return to the gym, and I hope I can enjoy life again.

[mabeckoff]

Hope you get some relief. I am having my revision surgery on Monday

Melissa

[JDM555]

Hope you get some relief. I am having my revision surgery on Monday

Melissa

Wow. Wish you the best of luck! I hope you have a speedy recovery and you feel better after the surgery. Keep us updated. I will keep you in my prayers.
John

[mabeckoff]

Wow. Wish you the best of luck! I hope you have a speedy recovery and you feel better after the surgery. Keep us updated. I will keep you in my prayers.
John

Thanks for the prayers. They are always needed. I feel very positive about this surgery. I feel so confident in my new surgeon

Melissa

[JDM555]

While a month in wearing the bone stimulator, I went to another doctor that my friend recommended me to before my first surgery. I wanted to get as many opinions and information as possible. I took my CD with X-rays/CT scans on them.

First off, he said there were a few things he thought looked off. I won't go into great detail. But it seems like it's pretty certain I'll need a revisional surgery. The pain is getting worse and I think the quicker I do it, the better. I need to get my back fixed. I'm in too much pain.

Besides checking 1 surgeon in UCSF and this new one, do you guys think I should visit some of the best in the U.S.? Maybe Boachie, Lenke, or one of the 8 at Twin Cities?

It seems most likely, there is very very little to no bone on my right side of the spine at L1-L3, and no bone on the left from L2-L3. So the stimulator is kind of useless, since there is no extra bone to stimulate. He said that usually these stimulators are successful, but right after surgery...not 1.5 years later after I find out I have a failed fusion, which was what I was thinking of while wearing it.

Any ideas? Tips? Suggestions? Looks like I got to redo the whole surgery, yay...can't wait.

[jrnyc]

i feel so bad for you, John...
but i am so glad you have found someone who wants to help you...
i do not understand surgeons who do not follow thru with their patients until they know the surgery has been a success...

i wonder if another opinion is needed, because revision is such a big deal...
but you have to trust your gut...you know things are not right with what you have been living with up to now, and you are so young...i know you cannot live with the results you have...

you are in my thoughts and prayers until you are feeling good and can move on with your life...

jess

[peachrush7]

wow. that is CRAZY! I'm so sorry to hear that...but on other hand, thank God there is a REASON for all that pain you've been dealing with. If it was me, I'd want the best in the business to fix whatever mess there is...

Is travelling for surgery an option for you? I'd just want to make sure whoever cuts me open next is committed to the long haul, and is very familiar with revision surgery, especially if there is lack of fusion in someone so young.

Again, so sorry to hear that it's going to be a doozy of a "fix", but I'm happy for you that you've got some answers and some hope now that your pain can be relieved.

We're all pulling for you!!! Keep us posted!

[JDM555]

Thanks a lot Peach. I agree, there are many reasons for my pain, so I'm grateful now I know why. But I would of been even more grateful if my first surgeon did a successful job and I would be 100% fully recovered. I want the best cutting me up, and I can travel. I just want to give them my X-Rays/CT's/MRI's and get their opinion before traveling to them and wasting my time. I want to know what they all think is best, and then pick who I feel is the best out of the group.

So far, I have UCSF Surgeon, and 1 Private Practice surgeon that I went to. I want to go to his partner, who is also well known and is part of SRS. Then if I can ask some of the twin cities surgeons, I doubt Boachie or Lenke will have time to give me opinion over phone/email/etc. So it's going to be a little hard.

[leahdragonfly]

Hi John,

So sorry to hear you're heading for more surgery, although it sounds like it should help you get back to normal.

I have no personal experience with him at all, but Dr Pashmann in L.A. will do a review of images and phone consult. There are details on his website if you google. Has anyone tried this? Also, he did pilar's huge surgery 8 months ago and I think she posted recently that she is doing very well.

Good luck, please keep us posted.

[JDM555]

Hi John,

So sorry to hear you're heading for more surgery, although it sounds like it should help you get back to normal.

I have no personal experience with him at all, but Dr Pashmann in L.A. will do a review of images and phone consult. There are details on his website if you google. Has anyone tried this? Also, he did pilar's huge surgery 8 months ago and I think she posted recently that she is doing very well.

Good luck, please keep us posted.

Yeah. It does suck, but I'm glad at least I know if I get more surgery and it turns out successful, this terrible pain will go away. It's kind of like seeing a little light at the end of the tunnel. Before I didn't see anything. But if there is a little chance I can get more surgery and it will fix what my first surgeon messed up, I'll be happy. I can't wait to return to the gym and to sports and not have severe chronic back pain on a daily basis.

I've heard of Pashman before, he seems good. I checked it out, and he has a part on his website specifically for a 2nd opinion, it says he charges $125 for a second opinion. I might give it a try. I will try to put my CT images/X-Rays all online, so the doctor can view it instantly, instead of having to wait for a copy of my CD to arrive there. Maybe make a quick screenshot movie of the slides.

I will ask most of the surgeons at twin cities, pashman, 2 private practices, and maybe a few others. I know there are a lot of good surgeons in NY too.

[mabeckoff]

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