Don't know what to do...

[Jenlw]

I don't post much, but I do read a lot. Everyone is so knowledgeable here!

I first found this site 3 years ago when my rod broke. Since then I have just dealt with any pain I might have. Very recently while working on my house, I started to have constant pain that over the counter medicine wouldn't help. I went back to the doctor who said it was time to have surgery to have the hardware removed and to fix where my back didn't fuse.

For the past couple of weeks I have done basically no physical activity and my back only hurts mostly at night and in the morning.

So I don't know if I should have this surgery or not. Is the pain just going to get worse and worse until I HAVE to have the surgery as soon as possible? If I start being active again, am I going to start having pain again? Is it something I should wait to do? I can say that when I am in pain, it is worse than it used to be.

It is such a big decision to make! I am going to make another appointment so I can ask more questions...hopefully that will ease my mind a bit.

Any input would be greatly appreciated!

[rainbow2010]

One thing to think about....the older you get, the longer it takes to recover from any surgery.

[dealornodeal]

Jen, has the doctor taken any current xrays or mri's or other tests to come to the conclusion that you need surgery now? I would suggest talking to doctor about any non or limited invasive procedures before jumping right into the surgery. It is a big decision, but I am now about 4 months post op and can honestly say no matter the pain I'm feeling now which I know is moving toward healing, it's much better than the pain that I experienced prior to surgery. Make sure to ask as many and all questions you can think of before making a final decision.

Keep us posted.

LJ
4 Months post-op
L4-S1 Jan 2008
Previous fusions 1977/1986

[Jenlw]

Thanks Rainbow 2010...I have thought about that...it is a very good point

dealornodeal, he did take xrays about 2 weeks ago. They took them as I bent back (which isn't very far) and bending forward. You can see the break in the rod move open and close as I bend. You can also see that there is at least one spot that did fuse.

Thank you so much for your input! I really think it will help to go back and ask more questions. I am going to take someone with me too who might think of more questions than I have.

Good luck on your recovery! Glad to hear things are going well for you!

[dealornodeal]

You might also find some helpful questions to ask from the book:

David Wolpert "Scoliosis Surgery, I discovered it on this site post surgery but it is very informative, might be helpful.

LJ

[LindaRacine]

Hi Jen...

It seems to me that the area is not going to fuse on its own, so you'll probably have to have surgery a some point in the future. The good news is that most people who have to have a small area re-fused, state that the surgery is much easier than the original surgery.

Good luck with your decision.

Regards,
Linda

[BackTalk]

"Get ER Done"

[Theresa]

Jen,

If you have an unfused area you will probably always have pain. It's your decision to make how long you want to continue doing little or no physical activity! Try doing a few small things and if your pain gets worse and then gets better when you don't do anything you know it's probably from the unfused area. I went back two more times after my original surgery because I knew I would only get worse walking the way that I was. I knew there was a pretty good chance that my problems would eventually get fixed and they were. I do still have pain, but it's being managed through pain management and I can walk without using a cane or shopping cart and it was well worth the two extra surgeries!!!

[Mags]

Hi JenLW

Putting the pain aside, I was on the understanding that a broken rod was indicative of a failed fusion. I was also told by the Doctors that the only way to REALLY know if the fusion has taken was by surgical exploration. If the fusion hasn't taken, then the curve will continue to progress and that is what is scaring me into my revision surgery next week (19th June 2008).

If my curve was stable, there is NO WAY I would endure a 2nd surgery, but because I have progressed from 32 degrees in 1984 to 64 degrees despite the fusion and rods, that is why I have agreed to do this - to halt the progression and issues down the track.

Have you asked your doctor if the curve itself has actually progressed? Because if it is continuing to progress then you may have to face what I have had to face which is that it ain't gonna suddenly stop on it's own.

Given you have far worse pain than me and the risk of damage from that pesky broken rod,that would also be a huge factor in your decision.

I was devastated when I found out my curve really was progressing and even more when my doctor said "oh and hopefully this surgery will last 15-20 years before you need to be fused down to the sacrum" like that was GOOD news!

Do you have faith in your doctor? That's another major factor.

Good luck with your decision,

Mags

[Susie*Bee]

Hi JenLW-- It looks like you got a lot of good advice. LJ mentioned David Wolpert's book for finding questions to ask your doctor-- it also includes some info on pseudarthrosis/pseudoarthrosis (both spellings are correct) which means failed fusion, as does the book by Michael Neuwirth, The Scoliosis Sourcebook.

I am so sorry you are having all this pain and it is affecting your life so much. It sounds like it might be time to seriously pursue revision surgery. Please keep us posted with what happens at your next appointment.

Mags-- best wishes for your surgery! I will add you to the thread April, May, June surgeries... but maybe you might want to put your surgery on the official surgery calendar. If you don't know how to do that, I wrote out directions awhile ago in that thread I just mentioned-- it's at this post: http://www.scoliosis.org/forum/showp...6&postcount=11
If that's confusing, please PM me. Putting it on the calendar doesn't do much for you, but serves as a reminder to the rest of us.

[JamieR]

I have a question for anyone who know because I am not very knowledgable about this since I only just had my surgery? How on earth did your rod break and it seems like if your rod broke, it would be necessary to go back in and fix it. Also, what would cause you to not fuse? I am just curious, I am going for another check up in two weeks and hearing things like this freaks me out.

[Diane BCSW]

I've had four revision surgeries and this is what they've told me. When an area doesn't fuse around or behind the rods, that a clothes hanger effect takes place. The constant movement of our bodies bends the rods back and forth over and over and eventually they break. At each time, both of my rods broke very close to each other and they've broken in both the thoracic and lumbar regions. I know your age will play a huge role in whether or not future revisions (that's what they call it - not repairs) work for you. I will turn 66 in August and am post-op since the end of January. Now, more and more each day, I am bending over at the waist or hips, and am starting to have pain, so I'm very much afraid of what is coming. I'll have an Xray on Wednesday, the 26th of June, and we shall see. I will also say - each surgery gets easier and easier, but the recoveries are longer due to the doctor's caution to heal correctly and FUSE!!! This past time, my doctor didn't want me to do anything for the first 3 months.

Good luck. I'm sure you'll make the right decision for you. But in my experiences, not having surgery wasn't an option. I have good insurance and a good doctor. It makes my toes curl to think about those rods hanging loose inside of me. Per my request, they saved the rods for me and the broken ends are just that - broken.

Diane

[Jenlw]

Thanks Diane! I did go back to the doctor and asked several questions. I am in the process of getting something scheduled. Good Luck to you with everything!