Surgery after surgery??

[augemac]

I have a question to see who can help answer this. I have read many that have had a fusion but had to have another surgery because???

Why do so many have to keep going with their surgeries? I know each case is different but I am curious if the fusion itself was solid? or the curve just keeps going?

Is it something we do or don't do to keep our spine healthy after fusion?

Alot of questions!
:confused::o:)

[JenniferG]

Coming up for my first, I'm also interested in some of the reasons why a second surgery is often necessary.

Jen

[Karen Ocker]

My original surgery in 1956 was performed without hardware because that was the state of the art . I lost the correction because the fusion weakened with time and was not supported by hardware. In those days one stayed in bed, not walking for a year, in a series of casts. With hardware the healing fusion is supported and one can walk right away. The hardware continuously supports the fusion throughout life.

[sasha]

Mr surgery was back in 1965 and was also uninstrumented, they just fused my spine with bone taken from my hip. I too had to stay in bed in a huge plaster cast that reached half way down one leg, all over my body up to my neck and then a Milwaukee jacket!

The fusion did quite well for some years, but it's on the move now so that's why I need a revision and also I hope it will get rid of some of the pain as well, as it's really impacting on every aspect of my life right now.

[discombobulated]

Hi Augemac,

I can really only answer for my case, which is not too common. My T3-L3 fusion back in 1999 took nicely & is stable, but I had that extended down into all the sub-L3 vertebra + anchored into my pelvis in 2001. That's the bit that's failed for me - even though I got great correction, the fusion didn't take & the curve started progressing again (& didn't stop!); also, the pelvic instrumentation is loose & shifting around, cutting up bone. BUT please understand that this was really because of very unique, "lucky" circumstances - a) I have osteoporsosis (aka. "soft bones"); b) my pelvis is atypical to start with; & c) I'd already had some bone removed for prior (non-spinal) surgery. So, end result is a revision of the lumbar/pelvic fusion - but for reasons that would be very unlikely in anyone else, lol.

I think that the answer for at least a number of other members is much like Karen's - early scoli surgeries were nasty & used instrumentation that is nowhere near as advanced as the gear they use now, so many people are left with pain or other issues. Thankfully, the instrumentation has been developed over the years to remove many of the features that have left people with long-term problems.

Hope this makes sense! Cheers.

[Writer]

Disco -- to upload pics go to:

www.glowfoto.com

Click on the Browse button, find your photo (one at a time) and then upload it.

After a few seconds you'll see a Link List. Click on and select the DIRECT link and copy it into your post. Then readers just click on the link and see your picture.

Incidentally, if you are concerned about maintaining your correction there's a physiotherapist in Toowoomba who specializes in the spine, and she trained in the Schroth method in Germany. Sabine Kehoe -- sabine.kehoe@gmail.com

Augemac -- yes, the curve can continue to progress after fusion for a variety of reasons. Here's a reference to an article that explains how physiotherapy can help post-operative posture and reduce likelihood of revision surgery.

http://www.scoliosis.org/forum/showthread.php?p=56931#post56931

[JenniferG]

Thank you Karen, Discombobulated and Sasha for those explanations. It sounds like *most* first time surgery performed in recent years is not requiring revision, but is a one-off.

Jen

[discombobulated]

Hi Writer,

Thanks for your thoughts on getting my pics up. From the help of many members, I've uploaded them to Google's Picassa 3, in a public folder, so hopefully they should be accessible :) I appreciate your help though - thanks.

About the Schroth - to be perfectly honest, I won't be considering it as an option; however, I will continue with my current PT program to help strengthen the muscles I have use of & increase lung capacity in anticipation of surgery. I will also use PT post-op to regain my strength & balance more quickly. Thank-you for your suggestion, but there's just not enough evidence of its utility to warrant the travel, expense, time, or effort for me to pursue this.

Peace to you. :)

[augemac]

Thanks to everyone who posted.

I noticed that medicine has changed over the years. Since my first fusion the amount of advancement is tremendous! I noticed many in the forum found their curves later then I did. Not sure if that is the reason for my multiple surgeries or not?

But I do worry sometimes because I am still 32 and have a ways to go in life. Currently having lower back problems and had my MRI done but don't see the Dr til Nov. 6th. wait, wait, wait

Patience is a virtue. Just thought I would vent and see what people thought on their own backs and their experiences. Everyone's case is different but yet similar and just got to keep being positive and persevering. Easy to say hard to do when your in pain.

[PNUTTRO]

wait, wait, wait

Easy to say hard to do when your in pain.

You got it.
Waiting is at the heart of everyone who posts to this forum.

[waterpixie1327]

I had a fusion in 2002, I was 15. I am now 22. In 2004 a bump formed on my scar, the size of a golf ball! It popped and was an open "wound" for 2 years! Within those 2 years I probably went to about 15 different doctors/specialists. Nobody could tell me what it was. I had to keep it covered at all times. Finally, in 2006 I went back to my original surgeon (across the country) and he did an exploratory surgery. They removed my rods, then found an infection in the bone of my spine, called Osteomyelitis. They removed my rods because supposedly they are only needed from 2 to 4 years for the fusion to stay. While I was in the hospital, recovering, I had a fever and anemia because the nurses didn't check my blood levels beforehand. For 5 weeks while I was home, I had a PICC line (I.V.) in my arm that went to my heart and dispersed Vancomyacin (an antibiotic for the infection) At the end of the 5th week, I ended up with Red Man Syndrome, a hypersensitivity reaction, kind of like an allergy to it. So, obviously, I didn't need the 2nd surgery because of the fusion. BUT, now my curve is getting worse and I will most likely need another fusion. Also, I have Osteoarthritis, and it may or may not have something to do with my spine curving more! I know everyone's story is different, this is just mine and I hope it helps. I hope you find all your answers:)

[discombobulated]

Waterpixie,

I'm so sorry you went through so much trouble - & for 2 years!! :eek: Do you know what the infection was & if you're completely clear of it? I hope you can avoid another fusion... [Tangent - how great are PICCs?! Such vein-savers ;) But hope you never need one again...]

Infection has to be my #1 fear since I'm at increased risk for it, & while I hate that you had so much suffering, it is good to hear of a "happy ending" in the sense that the infection was treatable (curable?). Reading too many "bad news stories" is NOT good for staying calm :p

Best of luck to you.


--


Augmac,

I don't think this has been said in this thread (? apologies if it has!) - remember that people who have successful fusions 1st time around (ie. the vast majority) rarely need to come to a support forum like this. So people who have problems with their original fusion, who have revisions, or even who have problems with their revsions - they are all probably over-represented here. People who feel great after recovery from a 1st time fusion & go back to enjoying life...well, many just don't seem to hang around here ;)

I hope all this rambling makes sense! Cheers.

[waterpixie1327]

Yes, the infection (Ostemyelitis-infection in bone or bone marrow, could be chronic or not) is gone now, thanks to the Vancomycin! I don't have "chronic" Osteomyelitis, thank God! I have gone through a lot, but it only makes me stronger. You have to stay positive in situations like this/that. I started getting depressed a couple weeks ago, I was sleeping all day and did nothing. But thanks to my fiance, I got out of it quick! I could stay there forever. It's a comfortable place for me, so I have to be careful. Just remember, the biggest picture is the one you're looking at. Well, good luck to you, and thanks for the reply!:)

[rainbow2010]

I had my second surgery to remove extra fusion that grew on its own. I was fused to L5 but mine continued to grow to S1!

[augemac]

rainbow 2010,

What happened that you need to be fused lower then L5? Curious because that is where my problems are currently. Wondering and waiting to see the results from my MRI and to see the new Dr.

Discombobulated,

That makes real sense to me. And thank you because that made me feel better; believe it or not. Not to look at the negitive but keep positive. Thank you.

[felix999]

WaterPixie,

What are you planning to do with the fact that your curve is increasing even though you have been fused? I am in a similar situation had the hardware out and I feel it is increasing aswell. Surgeon I saw said it won't increase too much more but sometimes I think what do they know I was told years ago I wouldnt need a fusion and eventually I did.
My course of action is to start pilates next year and then after about 6 months of that if I dont feel better then I am going to another surgeon for a second opinion.

Amanda

[MOB]

Hi Augmac,

I had my first surgery in July 1981 when I was 15 for (AIS lumbar)I am fused approx from T10 to L4/L5. When I came home from the hospital I couldn't straighten up i had diffuclty standing upright.
Second surgery in November 1981 was for rod replacement
the rod started to bend at the top and hook came out of place.
Third surgery was in Feb 82 for Rod Removal.
May 82 i started with disc problems below fusion.
10 years later i had facet joint problems below fusion.
Had lots of probs after with lower back and leg pain.
Two years ago I had an MRI i have a break in the fusion, stenosis and spondylolisthesis. I had an epidural steroid injection over a year ago I am pain free at the moment, i was told that i would eventually need to have fusion extended to sacrum. I do pilates also were MBT shoes which really help.

[rainbow2010]

Augemac-
My fusion grew on its own from L5 to S1. Even after they removed part of it 6 years ago, it has been growing again! My rod only had a hook on the top and one on the bottom. Certain things would make it vibrate and that could have stimulated the bone growth. It could have grown while I was pregnant, they just don't know how or why it decided to grow. I am having problems with arthritis and disc degeneration above my fusion. I have had 4 nerve ablation and am going in 2 weeks to get 4 more done.

[sasha]

Augemac-
I am having problems with arthritis and disc degeneration above my fusion. I have had 4 nerve ablation and am going in 2 weeks to get 4 more done.

Hi, I have some similar problems but haven't heard about nerve ablations (I will go and google them) but wonder if you could give some details of your experience with them if you don't mind? Do they stop the pain? Are they permanent? Risks?
Thank you. :)

[txmarinemom]

Hi, I have some similar problems but haven't heard about nerve ablations (I will go and google them) but wonder if you could give some details of your experience with them if you don't mind? Do they stop the pain? Are they permanent? Risks?
Thank you. :)

I had 4 rhizotomies (you can Google as that and also "RF ablation") pre-op (during the years I was seeing a pain mgmt doc).

While they can be very effective for some, they didn't work for me ... well, at least not in all the areas he tried to hit.

The easiest way to explain it is you have nerves coming off the sides of your spine (the medial branch nerves). They carry pain impulses. In theory, if they can zap these nerves, the pain is blocked.

The nerves do sometimes regenerate and have to be burned again. My anesthesiologist/pain mgmt doc told me he'd never had to burn a single area on someone more than twice, but of course, my cervical area needed a 3rd time - and STILL tried to regenerate.

The attempt at zapping the nerves in the thoracic area (at about T9 ... my curve apex) wasn't successful. First off, with the rotation of my spine, he had to go under the left side to hit the right side nerves. Ultimately, he only achieved a *partial* burn ... which is, IMO, worse than NO burn. It leaves the nerves hella pissed.

There is some risk involved (outside regular anesthesia risk ... and it's that they burn the wrong place), but they do minimize it by constant monitoring (via a portable flouroscope or some other machine) as the canulas are placed. You're not completely under (at least I wasn't) during the procedure ... they just generally put you in a light twilight sleep because they may need your feedback during surgery to ensure they aren't in the wrong spot.

I don't recall pain during the procedure, per se ... just a bit of discomfort. And it seems I was just a little sore for a day or two afterwards. BTW, it's a day surgery procedure.

Hope this helps - and I hope it's of benefit to you if you try it.

Regards,
Pam

[rainbow2010]

Sasha -
The procedure isn't bad. My doctor gives me a happy pill to relax me(they offered me heavy duty pain medicine but I refused. I didn't need it). Then they clean the back, put something on it to ground me and then using a flouroscope he inserts a needle and stimulates the nerve. He asks if I can feel it and if it is in the right area. Then he uses radio frequency to heat the needle and burns the nerve. This creates scar tissue. You can have relief from 6 months to forever. It depends on how much they zap it and how fast your nerve tries to grow back. In my T8 -T12 area, I have had it done twice and I think just one needs a third time. I am having my T4 -T8 area done next week. I hope to get permanent relief from these treatments. My doctor said it could take three times to make it premanent. I was a little sore when I got home so I went to bed with my heating pad and slept a few hours. I had a burning feeling around the area for about a week then it went away and I had relief from the pain. I have a hard time taking a deep breath because of the pain around my ribs and this has given me relief. The risks depend on the area and they do use an xray machine, but I think it is worth it. Anything that lessen the need for pain medicine is worth it. I have a 1 1/2 hour drive in bad traffic to get to this doctor (I should say my husband drives me).

[augemac]

I have learned so much here. thank you to all. I didn't realize there was so many options for pain control! I usually just sat here at home suffering, trying to get massages, and medicine.

I guess I should be more open with my doctors. Now that I have gotten older I don't like to go because I tell myself "what can they do for me? Another surgery?" & I don't want that.

I have high pain tolerance but my body still reacts to what is going on in many different ways even though I can tolerate the pain to some degree. I get many other symptoms.

My appointment with the Dr for the results of the MRI is next week on Nov. 6th and I am curious. :o

[sasha]

Thanks for all that info! I have never been offered ablation treatment and yet I have had chronic pain for some years now. I have read up a bit on the Web as well and may ask the doctor about it when I go there next.

Must be better than always taking meds........

Thanks very much. :)