Help?

[Dora]

I don't know if this will help people with an eye for what they might do... but this is an xray of my back from a couple of years ago, before the progression.

Back1.JPG

[Pooka1]

Hey Dora,

Your mare sounds so lovely! I loved reading you entire post actually.

Obviously, you know very well what is involved in sitting the trot of a large horse. And cantering a big-moving big horse. You are deep into dressage. I think you have to avoid being blind-sided on this issue of riding after fusion. If the surgeon doesn't know then I think you need to find some people with the same fusion you will have and ask if sitting trot is doable with one disc. At third, posting is out in the work though not the warm up of course. Then you have to ask these people how long that disc lasted if they continued riding.

I hope you make sure you have a good sense of what you will be able to do in dressage if fused to L4. And then what you will be able to do if you need that fusion extended. Please don't go into it and get blindsided.

Best regards,
Sharon

[Confusedmom]

Dora,

Welcome to the forum. You have already gotten some good advice here. I too would encourage you to get a third opinion with a doctor who is part of the Scoliosis Research Society (SRS). They are listed on this website. Dr. Rand is a good suggestion. I think many of us have our surgeries with orthopedic surgeons who have done fellowships in adult deformity (scoliosis) surgery. The issue is that adult surgery is much more complex than pediatric, so it really pays to have a surgeon who does these surgeries regularly. I believe it's worth traveling if necessary to get a top-notch surgeon.

As far as your fusion levels, it will probably make your recovery easier if you have some levels at the bottom left unfused. However, the problem with that is you are likely to have degeneration of those lower discs over time. Many people who have just the L5 disc left unfused end up getting a second surgery later to include it. Also, specific to your situation, vibrating activities (riding) can put wear on the discs faster. I was told not to run or ride horseback regularly. That is not to say you can't do it; it just will cause added wear and tear.

On the other hand, it sounds like your chances of improving your lifestyle with surgery are pretty high. Many people on this forum who go into surgery with significant pain talk of "getting their life back."

Take your time and do your research. I would not hesitate to postpone your surgery if you feel like you need more time to sort things out. (I did twice!)

Best wishes,
Evelyn

[susancook]

"I don't think I have a choice anymore but the recovery time feels like it could derail the efforts I've put into building my career. "

You said the above. I pose the question, Can you do the career that you are building without the surgery? If you are in pain, how will you build a career? You can still probably "have it all", by changing the timing of your career progression.

If you have any doubts about whether or not to have surgery, don't have surgery. Next to my marriage and joining the military, it is the biggest commitment of my life. You need to be very sure that surgery is what you want. If not, you will probably regret your decision.

Best of luck.
Oh, I had an orthopedic surgeon. I originally saw a neurosurgeon, but he only wanted to fix my stenotic vertebrae L4 which was only a small part of my problem.

Susan

[Dora]

Yes... we're a dressage family around here. My daughter also. Actually her horse is who I'll use to recover on initially if I can peel about 20 pounds off my body. He is a saint and a couch. He's rather tiny though.

Okay I contacted a dressage pro that I am friendly with. Last year when I was in Wellington to watch the shows I was rather compromised with sitting/moving and one of her students (or at their level.... pros getting coached by pros?) mentioned that she had a number of clients who had returned to the saddle after back surgery. I asked if perhaps they could put me in contact with that student or any of her clients she was away of so I could understand the adjustments etc.

What is funny is my back progressing has made me very secure in my sit trot work/canter work now because I do a majority of it without my stirrups. Without even the slightest tension up my legs my body can take more. And naturally it helps with keeping her shoulder-fore for transitions because I'm more aware without that I'm blocking her coming through. It makes for a nice feel on one hand, even if I know I'm going to pay for it later when the muscles spasm. I hope I don't lose that entirely.

That said, I'm having a hellish morning with my back for whatever reason so I'm more pro-surgery than not at this very moment.

Hey Dora,

Your mare sounds so lovely! I loved reading you entire post actually.

Obviously, you know very well what is involved in sitting the trot of a large horse. And cantering a big-moving big horse. You are deep into dressage. I think you have to avoid being blind-sided on this issue of riding after fusion. If the surgeon doesn't know then I think you need to find some people with the same fusion you will have and ask if sitting trot is doable with one disc. At third, posting is out in the work though not the warm up of course. Then you have to ask these people how long that disc lasted if they continued riding.

I hope you make sure you have a good sense of what you will be able to do in dressage if fused to L4. And then what you will be able to do if you need that fusion extended. Please don't go into it and get blindsided.

Best regards,
Sharon

[Dora]

If I can manage to get in for a third opinion I will.

I have some time restraints because my parents who both teach in NV will come back over the summer break to help my recovery. I wanted to cry when they moved my surgery from the 15th to the 25th for this reason. I know I'll need help and after reading this forum and heck of a lot more than I initially assumed. Losing even 10 days of help seems significant.

Last night I kept trying to imagine how long it will be before I can have my daughter (almost 8) cuddling back with me on the couch. Ugh.

Susan - You make a very very good point on my career. Last year I gave an hour long talk at a conference and it almost KILLED me to have to stand up there. Even with a hand on the podium. I know that visibility will be important moving forward and I'll be expected to take these types of speaking engagements as they come up. So no, being tied to an office chair isn't going to help either.

[Pooka1]

Yes... we're a dressage family around here. My daughter also. Actually her horse is who I'll use to recover on initially if I can peel about 20 pounds off my body. He is a saint and a couch. He's rather tiny though.

Okay I contacted a dressage pro that I am friendly with. Last year when I was in Wellington to watch the shows I was rather compromised with sitting/moving and one of her students (or at their level.... pros getting coached by pros?) mentioned that she had a number of clients who had returned to the saddle after back surgery. I asked if perhaps they could put me in contact with that student or any of her clients she was away of so I could understand the adjustments etc.

What is funny is my back progressing has made me very secure in my sit trot work/canter work now because I do a majority of it without my stirrups. Without even the slightest tension up my legs my body can take more. And naturally it helps with keeping her shoulder-fore for transitions because I'm more aware without that I'm blocking her coming through. It makes for a nice feel on one hand, even if I know I'm going to pay for it later when the muscles spasm. I hope I don't lose that entirely.

That said, I'm having a hellish morning with my back for whatever reason so I'm more pro-surgery than not at this very moment.

Hi Dora.

I am sorry you are having a bad morning with pain.

I think there is likely a difference between back "injury" and fusion. I think fusions to L4, L5 or sacrum may not be in the "injury" category. It's not necessarily pain but function of the lower back that is at issue with fusion.

Good point about riding without stirrups. Riding without stirrups is a good way to understand the sit trot and to notice the need not to tense in any part of the body so as to take the motion and not fight it. I rode for about year without stirrups several years ago to learn body alignment... arena, trails, hills, etc. It helped but took some effort to learn to ride with stirrups effectively again. If you can continue without stirrups that is an option but you will need dispensation if you show. There is a very prominent disabled rider here in NC who is allowed to ride without stirrups but you need to show a disability to be allowed to do that. You might be able to show that. I don't show but I train a lot with a lot of people because I am obsessed. :-)

Another thing you could try if you don't get dispensation and want to show is just ride with enough weight in your stirrups not to lose them. This is how I ride normally... no more than a few percent of my weight is ever in my stirrups. The rest gets distributed between seat and thigh depending on what I am doing. I will sometimes lightly step into a stirrup momentarily though.

I know some people (mainly the French) disagree but shoulderfore is just straight and I used to ride all the time in position (flexed straight). The SRS rides in position all the time too. Here in NC with a different set of instructors I have gotten a little away from that. Ironically though I just brought this up yesterday with one of my instructors and I told her I intend to go back to riding in position. It's so useful because the horse is already always in the outside rein. Who can argue with that?? :-)

Good luck Dora and please find someone who has the fusion you will get to talk to about riding. You want to know the score before you commit so you have no regrets.

[loves to skate]

If I can manage to get in for a third opinion I will.

Dora, Your opinion from the neurosurgeon at Tufts probably can't be considered an opinion at all because they are not trained as scoliosis surgeons. I wonder if you saw the same neurosurgeon at Tufts as I did. He told me he wouldn't operate on me unless I was in a wheelchair and never referred me to Dr. Rand who actually was a consultant on staff at Tufts. Very arrogant if you ask me. Unfortunately, you probably won't be able to get in to see Dr. Rand for at least three months because he is very busy. If you want to see him, I would recommend that you have your primary care Doc refer you. There is also an SRS Dr at Brigham and Womens, Dr. Glaser I believe. Maybe he could see you sooner than Dr. Rand.
As for recovery, as Titanium Ed asked, it would be helpful if you told us your age. I was 67 at the time of my surgery and if I wasn't retired, I might have been able to return to work part time at four months post op. No horseback riding for me, but I was able to go back to rollerskating at one year post op.
Take care, Sally

[Irina]

Hi Dora,

I think most of us here had their surgeries done by orthopedics surgeons that specialize in adult deformities. I don't want to sound like a downer, but if your surgeon suggests fusing you to L4 or L5, ask him/her what is the chance of extending your fusion down to the sacrum. My L5 disc was sort of gray area and my doctor gave me a choice of either fusing to L5 or sacrum. She told me that fusing to L5 will give me a tad more flexibility, but I will be back for a revision surgery (extension to the sacrum) in 5 -10 years. I chose fusion to the sacrum because I definitely don't want to go thru this again.

[titaniumed]

Ok. It looks like you are having and anterior lumbar discectomy and fusion. Its called an ALIF. That’s what I had. Scoli surgeons like to have a general or vascular surgeon gain access to the site from the front...and be on standby. Once they get there, (they slide everything to the side) they remove your discs, remove bone spurs, and insert a spacer. Ask if they are using BMP. Its important. This is used to speed up the fusion process and help guarantee fusion. I think that autografting on adults has become a thing of the past.....is this correct? The beauty of this forum is that I will get an answer.

They then will flip you over and operate on the back side and install the screws and rods. This holds everything together till you fuse. This is called a PLIF.
Ask how many days they will wait on your stage. Mine was a 2 day stage. Some stages can be a month, some in the same day.

I see you posted your x-ray from a few years ago “before the progression”.......that’s a great attitude! I like that.

In my experience, (I’m not a scoli surgeon) it looks like they will probably have to take your construct all the way down to the pelvis. If they leave one level, your L5-S1 unfused, chances are high that you will be going back in for a revision surgery. I would ask him about this. I know I didn’t want to do revision surgery in a few years.....I have adapted to my mobility well and have a thread in my signature with a few photos so you can see.

I have to be honest and say that this one is going to hurt..... You wont feel anything during your surgeries, and the meds they will give you will be the strongest, morphine, dilaudid, lortab, etc. This stuff is the ticket for sure. It’s the recovery and weaning that’s painful. At 12 months, I was at 90%, and it took another year to completely recover. Any of the age 50 yr old A/P patients will attest to this....Its 1-2 years recovery.

I delayed my surgeries for 34 years due to skiing. It weighed heavily on my decision making. When my pain was through the roof and resulting sciatica set in, I had to assume that I would never ski again. My surgeon told me that I could ski, but at what level? I adapted.

I was prepared for the worst, and expected the best....Its understanding, commitment, and always looking forward, never back. Your mindset needs to be on track and goals, however difficult, need to be in place.

Can you do this? You bet. Many of us have.....Its scary for sure, the most difficult decision of our lives.

I am happy with my surgeries.....Everything form T2-Pelvis is great! (smiley face)

Ed

[leahdragonfly]

Hi,

I had surgery at age 42 (posterior T8-sacrum/pelvis) and went back to work too soon at 14 weeks. I felt like I should be able to suck it up and push myself through to a quicker recovery. That was very flawed thinking! I definitely had extreme financial pressure to return to work sooner rather than later, but I was still in a lot of pain when I went back, and I feel that going back too soon set my recovery back by a month at least.

I suffered a pseudoarthrosis at two lumbar levels and suffered broken rods at 15 months post-op. I had to go back for a very extensive anterior and posterior 8 hour revision surgery which wasn't any fun at all. My job was protected by law for just 12 weeks under FMLA law, and my employer was doing a large lay-off right about the time my FMLA protection ran out, so I felt forced to go back to work (FT) at 12 weeks post op, which was way too soon. I would have stayed home 4 months if the circumstances were different. I am a nurse in a very active and physically-demanding area (interventional cardiology/ cath lab) so I was reluctantly allowed to return to limited duty - seated work, but I still was in pain when I returned to work, and it was terribly exhausting. Even sitting is not a position of comfort for most of us in the early weeks/months post-op. Sad that even hospitals are not very sympathetic to nurses who need serious surgery!

I am absolutely boggled by your surgeon saying you'll be able to ride at 6 weeks. That is preposterous in my mind in terms of pain. I didn't even drive until after 8 weeks. I doubt if its a good idea to get way up there on a (large) horse at 6 weeks under the influence of heavy narcotics! The risk to your spine from a potential fall is also very significant. I would be looking for other opinions from SRS surgeons.

Good luck with your decisions. Please plan to take an adequate amount of time off work to allow your body to heal. You have only one body to live with, and your career can pause to allow you to heal adequately.

[Irina]

Please plan to take an adequate amount of time off work to allow your body to heal. You have only one body to live with, and your career can pause to allow you to heal adequately.

Well said, Gayle.

[Dora]

Dora, Your opinion from the neurosurgeon at Tufts probably can't be considered an opinion at all because they are not trained as scoliosis surgeons. I wonder if you saw the same neurosurgeon at Tufts as I did. He told me he wouldn't operate on me unless I was in a wheelchair and never referred me to Dr. Rand who actually was a consultant on staff at Tufts. Very arrogant if you ask me. Unfortunately, you probably won't be able to get in to see Dr. Rand for at least three months because he is very busy. If you want to see him, I would recommend that you have your primary care Doc refer you. There is also an SRS Dr at Brigham and Womens, Dr. Glaser I believe. Maybe he could see you sooner than Dr. Rand.
As for recovery, as Titanium Ed asked, it would be helpful if you told us your age. I was 67 at the time of my surgery and if I wasn't retired, I might have been able to return to work part time at four months post op. No horseback riding for me, but I was able to go back to rollerskating at one year post op.
Take care, Sally

They were very uncomfortable at Tufts but they did refer me to Dr. Wood. Dr. Wood I believe specializes in scoliosis and I'll admit it was a relief when he looked at all the films and MRI and was confident that I'd have an 80% chance for pain relief. I'll fully admit to loving the sound of that.

And the age question. I didn't even realize I hadn't addressed it. Age at the time of surgery will be 37.

[jrnyc]

Dora....i did not see mention...maybe i missed it..of where the fusion will likely start and end...if it will need to go all the way to the sacrum or not...???
i do not know anything about horse riding the way Sharon (Pooka1)does...
my only thought is are you aware of how little movement may be possible with fusion to sacrum....?
i am trying to imagine sitting on horse or anything that MOVES, while having rods and screws down to the sacrum....it sounds.....difficult....

i hope you are able to find horse riding patients with scoli fusions to
sacrum...and maybe another opinion from a top scoli surgeon...
be so nice if there is a scoli surgeon somewhere who also rides horses!!

best of luck...
jess

[Confusedmom]

I was 40 when I had my surgery and my then 5-year-old could cuddle up right away! Just next to me, not on top of me.

Ed - my local surgeon (who is an SRS) surgeon was going to use autograft, allograft and BMP. I think he thought he couldn't get approval for enough BMP. Of course, that was 3-4 years ago.

I agree with Gayle about the idea of riding at 6 weeks being ridiculous. People who are off heavy pain meds by the are lucky. I didn't drive until 3 months postop. Plus I would be terrified of messing up the fusion process. Are you sure he didn't say six months? That would make more sense, but even then I would hesitate to do it until a year postop.

Best wishes,
Evelyn