Revision advice needed-thanks in advance!

[sasha]

Hello All, I am new to this forum, this is my first post! From the UK and would be really glad of any advice you can give.

As Physical Therapy hadn't stopped my curve progressing I had a spinal fusion back in 1964, without instrumentation and was in a Risser plaster body cast for about 8 months then a Milwaukee brace for about 6 months. Life was ok for some time and I got married and had 2 children. Then at age 30 I had twins and since then my back has been one painful problem after another. I’ve tried all sorts of alternative therapies as well as regular physical therapy, hydrotherapy, facet jabs, epidurals and nothing helps. I also had a laminectomy in 1994, which seemed to make it all a lot worse.

I went back to the Royal National Orthopedic Hospital for advice as the pain and spasm is so bad and they tell me the fusion has moved and is now at 48 degrees. Plus some disc bulges, central stenosis and degenerative changes. I’m 57 and struggle at the moment, working full time due to pain, tiredness and not being able to walk very far.

They have suggested revision where they will fracture the original fusion and take it further down to the sacrum with rods and screws etc. I know the risks are higher with revision.
• What do people who have been through it think?
• Would you recommend it?
• Or wish you hadn’t had it done?
• Does it stop the pain?
• Does it take ages to get better?
• Will my mobility be limited?

Just confused and worried and have another herniated disc out that is pressing on nerves to both legs and making them numb – and the pain, well I really didn’t need that as well! I take pain killers and muscle relaxants.

Any advice welcome. Thank you and sorry for so many questions and the moan!

[nzgirl]

Hi Sasha,
Welcome to the forum. I'm one of the unlucky minority that needed a revision. I found the revision surgery was actually better than the first, going into it terrified after how awful my first one was. I'm also a nurse so I knew that revisions are dicey. But I was in good hands, and it went well. I have seen mostly positive things from the revision people on here, so try not to worry too much.
I know the 'everyone is different' speech won't help you, because you want to know what the outcome will be. The reduction in curve that comes with putting in rods and screws in itself helps with pain as it takes some of the load off your muscles. I think expecting no pain is probably unrealistic long term, but you can hope for a reduction. I went in with the mindset of 'any improvement on now will be worth it" and that has helped. I had a lot of grief to be needing a revision, but at the end of the day there wasn't anything else for it. I am glad I had it.
The bottom line is, people have revisions when they have exhausted all other options and the pain is in-tolerable without surgery, and the prognosis of not having surgery looks bleak with probable curve progression and complications.
It does take a long time to get better, but you do get better. I find that i have to hold in my mind how bad I was before my surgery compared to now, when it feels like I'm not getting better. It is a long recovery, but I am hoping that it will all be worth it (well I know it will be because I feel much better). The worst part is early on, and then it gets better really quickly and then slows down. I made sure I had a good plan for rehabilitation and I hired a trainer to help me progress.
There are a few people on here that are closer to your age group, so have a look at what they have to say as well.
Take care,
Margaret

[discombobulated]

Hi Sasha - welcome!

I had a long fusion T2-L3 or so back in 1999 (when I was 12 yrs) for a 65+ deg. thoracic curve. Unfortunately, the lumbar spine below the correction then started to curve & twist, so in 2001, I had my first revision, which sounds a lot like what your surgeon's suggesting. My doc went in through the lower part of the original posterior scar & extended it downward a little. He broke up some of the fused bone from the prior surgery (donor bone), added extension rods & anchored them into either side of my pelvis, re-plastered me with donor bone, & finally stitched me all back up.

Like after the first surgery, I was in ICU for I think 2 or 3 days, then on a ward for about 7-10 days more, slowly being reintroduced to sitting & moving (I use a manual wheelchair, so didn't need to re-learn to walk). I'm not sure how your laminectomy recovery went, but this revision felt comparable to my original fusion for maybe the first week, but the pain level started easing off sooner & recovery was a little easier (not easy, but easier). For both surgeries, I was off school for a whole term (about 3 months) because of post-op pain & exhaustion, but I was off liquid morphine much sooner after the revision than after the original fusion (I think at about the 1 month post-op mark vs. 1.5-2 months), & I was mobile with help by the time I left hospital (completely independent with movement by about 2 months...but for me, movement recovery is quite slow, I think). I find that after any surgery, I'm exhausted simply by being awake for many weeks post-op, & these fusions were the same (worse), so more than the pain that slowed my recovery some.

Unfortunately, I was diagnosed with osteoporosis when I was 16, & because of that, the revision rods didn't take properly...they're swinging around in my pelvis just chopping up bone, so the lumbar curve/twist has been progressing again (approx. 75 deg. at the moment), & I'm waiting on a date for another revision (lumbar/pelvic rod removal, vetebral osteotomy, spinal straightening/untwisting, re-rodding with new instrumentation, replacement donor bone).

Until the re-curving reached about 50 deg., I was still in less pain than before either of the surgeries, & I'm grateful for the time when I was completely straight - I was pain-free, mobile, & my internal organs were also thankful! Obviously, my mobility isn't the same as an able-bodied person's to start with, but I could/can still bend, reach, etc. pretty well the same as before the revision - just that I can't twist or bend from the waist, so bending is from the hips instead. Had the revision stayed stable, I would have been even happier with the outcome, but I don't regret having it done because of the pain beforehand.

To be honest, I'm petrified of my upcoming surgery, too, but I'm in a lot of pain, my abdominal/chest organs are being squashed, & my bones are grating against each other; I've exhausted everything else, so....I'm at the point where I'll take the risks. So in the lead-up, I'm trying to take control of what risks I can - trying to get fitter, increase lung capacity, etc.. Only you can know what is right for you, but it sounds like you've tried everything short of surgery. I'm sure I don't need to tell you to make sure you're completely comfortable with your surgeon & hospital, but well..please do. Whatever you decide, I hope you can find a way to improve your quality of life...chronic major pain is exhausting...

Anyway, I'm so sorry to have rambled. I know my situation is/was somewhat different to yours, but I hope this is a little useful to you.

All the best. Thinking of you

[sasha]

Thanks guys,

Wow - you have both been through so much, I feel bad for moaning.

I so hope your surgery goes well discombobulated and that your recovery carries on being a good one Margaret. Thanks for taking the time to write - I appreciate it.

Will have a look on the threads to see what some of the other revisee's (is that a word?) of my sort of age are saying.

Once again, thank you and all best wishes, xx

[discombobulated]

Sasha, I'll bring the cheese if you bring the whine We all need a good moan now & again (not that you *were* even moaning!). Pain sucks...I really hope you can find some answers.

[trishthedish]

Much better now

Sasha, I had a revision due to an inexperienced, incompetent surgeon doing my initial surgery. Dr. Shelokov in Plano Texas did the revision, extending my fusion from C1 to L2.

• I have none of my original pain now, just some residual surgical soreness.
• I don't notice much reduced mobility, ecxept it is hard to turn my neck sharply to the left and hold it there for very long (like driving in the car and turning right on a red light-legal in Texas).
• The surgical pain for the revision was every bit as horrific as my initial surgery.
• I really had no choice in having revision surgery-my fusion was broken in 3 places and my hardware had come loose in several places. But I am very pleased so far with the results and don't regret having the revision.

If you choose to go ahead with your revision, I wish you all the best. =)

[CurvySAT05]

Hi Sasha,
It seems that I am around discombobulated's age, so take my word as a grain of salt, lol.
I've had 4 surgeries for my scoliosis, with the first in Feb. '05. My most recent seems to be what your doctor is suggesting, doing osteotomies (breaking the old fusion) and extending it down to the sacrum.
I had a herniated disc at L4-5, with decreasing disc space at L5-S1, loose screws at L5, flatback syndrome, a curve above the fusion and kyphosis (to name a few). I knew I had to have the revision surgery because the pain was unbearable and to the point where I could not walk for any distance (it was hard for me to get from the front door to the car).

• Would you recommend it?
It seems like you have tried many different things for your scoliosis and resulting pain. Since the curve has progressed since your original fusion, and especially because you have some herniated discs with stenosis it seems like you would be a good revision candidate. Depending on how bad the stenosis gets, you could have radiating pain, numbness or (not to scare you intentionally) paralysis below that point if the disc bulge completely blocks the neural canal. The nerves for our legs, bladder, and some abdominal areas start in the lower back and innervate to their respective places. I would ask the surgeon if you waited to have surgery, what is the possibility that you could have permanent nerve damage or other adverse affects.
I am very thankful that I had my surgery done when I did. Although I still have pain, it is less than before the surgery and I am slowly getting back to "normal". I did have some nerve damage from the herniated disc and loose screws, so at this point it is still hard to walk "long" distances without a lot of pain and numbness. I use a manual wheelchair part time in public since I cant walk very far.
• Or wish you hadn’t had it done?
I would have the surgery again if I had to. (Knock on wood I won't have to). Even though I am still healing, things are definitely better than they were before surgery. I am happy to be able to stand straight and tall and not being able to feel the rods/screws move around.
• Does it stop the pain?
As someone else has said, it does not necessarily "stop" the pain, but rather helps to reduce the pain. While I am not 100% better, I have been able to feel a decrease in my daily pain, which I am really happy to say.
• Does it take ages to get better?
Since you are a little older than I am, it will probably take longer for you to recover, but that also depends on what type of surgery you have (anterior, posterior, or anterior/posterior). It also depends on how much work your surgeon has to do during the surgery. I healed faster after my 2nd and 3rd surgeries because for #2 I just had one of my rods removed, and #3 was a small extension from L2-L5. It is taking longer for me to recover from this surgery (#4) because my surgeon took EVERYTHING out and started from scratch. My old fusion went from T4-L5, and was extended UP to T2 and DOWN to the Sacrum (with anchors in the Ilium). He did some osteotomies in the thoracic area to further straighten the thoracic curve and reduce my Kyphosis. I had an anterior discectomy with cadaver bone replacement (where the surgeon puts a block of cadaver bone in the disc space to keep that space open for the nerves to exit). My surgeon used Bone Morphogenetic Protein (BMP) as a reinforcement to the cadaver bone. BMP helps the bone to heal quicker, aiding in a faster recovery. I was in the hospital for 5 days and was transfered to a Rehabilitation Hospital for another 6 days. I was given the OK for Physical Therapy at about 6 months post op and am starting back to school on Tuesday.
• Will my mobility be limited?
The lumbar spine is where most of your bending/twisting takes place. The farther down into your lumbar spine you are fused, the more mobility you lose. With my fusion down to the Sacrum, all of my bending is from the hips. You get used to your new limitations quickly, and start finding ways to work around them. I am having a back-up camera installed in my car to help me get a better view of what is behind me. I have reachers in my room (upstairs), downstairs, and in my car so if I drop something I can pick it up without having to kneel down.

This is just a little of what my experience with revision surgery is. I am really happy that I had my surgery because it has made my life a lot better than it was. Feel free to ask any questions you have.

[sasha]

I appreciate your replies so much as it helps in my decision making - thank you!

trishthedish - what an awful thing to happen with your first surgery, I am pleased to read that despite the pain from the 2nd one, you are doing well and let's hope you don't need any more. Thanks for your good wishes too.


curvySAT0 - well despite being so young you seem to have packed in a whole lot of surgery! Your recent one does indeed sound similar to what has been suggested for me. Like you I am finding it difficult to walk any distance at the moment, the pain is unbearable above and below the fusion and when the muscles in my lower back go into spasm, it seems to 'lock up' and I get stuck - sometimes for hours! I think I am at the point where there isn't a lot of choice left to me.

They removed the disc between L5/S1. I also have some disc bulges at L4/L5and it’s roughly that area that’s really bothering me at the moment. The disc seems to have moved out towards the back rather than sideways and is causing some loss of sensation in both legs and feet. Although my left side is always worse – I walked a bit yesterday and couldn’t feel my left foot after about 10 minutes! Plus there’s facet joint degeneration around this area and the central stenosis. On x-ray it shows one of the lower vertabrae below the fusion (from approx: T8 to L3) is misaligned and sticking out an angle, which I guess isn’t helping any! My doctor has told me what to watch for in regard to nerve problems and I am not numb all the time, but I will be a bit more aware after your mail – thanks.

So I reckon it could improve my pain but not stop it all, it would help my posture and straighten my back up. I would probably get quite a lot of post-op pain and discomfort which will take a while to get through, but could ultimately be worth it. I will need to adjust to a different way of being after fusion to the sacrum. I had not heard about the bone additive BMP, so will have a read about that - they said they would use my bone taken from the original fusion. I was told my stay in hospital would be 2 wks. And I imagine about 2-3 months recovering at home before trying work again. Possibly longer.

I’ve been on the list for a while now as a CT showed ‘a small structure’ on one of my lungs, so I had to be referred to a different consultant and get that checked and another scan, but it turned our to be ok, after 6 months of worrying and being delayed. And now my scoliosis consultant is having an op and won’t be back for a while, so I have another wait! Patience is a virtue they tell me – I sure could use some!

Anyway enough of my ramblings – many thanks for all your helpful advice and sharing your experiences. I hope your recovery continues to go well and even more improvements happen for you.

[Ginger W.]

Dear Sasha,

In 1966, I was fused from T4 to T12 at age 14 without instrumentation. I spent a year in plaster body cast, with three months in bed. It was gruesome. Apparently, those old fusions of mine only took about 60%.

I went on to live a very active and normal life. Three kids. Backpacking, skiing, ACTIVE. Around age 45, back pain began returning. I spent several years in denial. Then I aggressively sought alternative therapies, especially Pilates and Yoga and inversion traction. I began taking pain meds like crazy, beginning three years ago.

Finally, I went for surgery in May of this year. My doctor cut away at the old fusions and put in 18 screws, two rods, correcting the 65 degree curve down to 26 degrees. I was walking on the second day and could walk around the block on the day I left the hospital.

Now, three months out, I am back to hiking up the mountain behind my home, one mile up and another down. I take NO pain medicines and feel much MUCH better than I did before the surgery.

It was a REAL win for me!!!

[sasha]

In 1966, I was fused from T4 to T12 at age 14 without instrumentation.
<snip>
Finally, I went for surgery in May of this year.
<snip>
It was a REAL win for me!!!

Hi Ginger - thanks for such a positive mail Sounds very similar to my scoli-history, well except I haven't got to the revision bit yet. I also took a look at your blog, which was a very informative read and gave me an idea of what to expect after surgery at our sort of age. Although my fitness levels are not too good right now, which worries me a bit. It's difficult to get beyond the pain/energy limitations and after a day at work I just want to collapse on the bed!!

Your surgeon sounds brilliant - I am tempted to ask if he would see me (I'm in the U.K) to give an opinion - not do the op, as I couldn't afford that - but if he does consultations it might be worth it to fly over to see him. I guess I would ring his office and check there, is that how you go about it in the U.S?

Sending you loads of good vibes for your recovery and hoping it continues really well. xx

[Ginger W.]

Dear Sasha,

I did consultations with three GREAT surgeons and they all basically said the same thing - you NEED surgery! The only difference between the three was the number of levels they would fuse . . . one said he would go down to L3, another one said L3 or 4, the third said L4. Very slight difference.

I traveled to New York City (Dr. Boachie), St. Louis (Dr. Lenke), and Dallas (Dr. Shelakov) to hear basically the same thing from each of them. Frankly, I think they all would have done a fine job, because they are all well-respected in this field. Dr. Boachie is the incoming president of SRS (Scoliosis Research Society) and it's terribly hard to get an appointment with him.

I think you might do okay to check out a few surgeons in the UK and see if you have the same experience as I did. Then, you'll find the guy best suited to do your work AND you'll see if their advice coincides.

Today, I blogged specifically about my scoliosis history, with photos of my old plaster cast. What a trip! I also added photos of all the alternative approaches I tried before doing my second surgery. Like, the one of me hanging upside down (for hours) on an inversion table. If nothing else, it's entertaining!!!