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Dora
05-23-2013, 12:25 PM
Hi,

I'm a first time surgery patient with correction of a double curve scoliosis that is progressing. Actual surgery date is July 15th at MGH in Boston MA.

I am a FT working mom who will have good support for most of July/Aug.

My job is primarily a desk job.

At what point have many people been ready to go back to work and how did you handle it? My career is important to me and being able to engage quickly is important.

Editing to add: Is anybody on here an active Dressage rider? If yes, how was your ability to ride your horse post surgery?

Thanks :)

tae_tap
05-23-2013, 12:50 PM
Dora,
Welcome to the group! You will find many on here that bring you added support from experience. What levels are they planning to fuse?

I too am a full time working mother, soon to be 35 with a double major curve. I am also 7 months post op but did not choose to do the long fusion that was first suggested, but opted for a short segment bone on bone fusion of T12-L2. I am quite a determined individual and love my job as a PA to a podiatrist and was anxious to get back to it following surgery. I went back at exactly 2 months post op and parts of me regretted going back so soon. I would encourage you to listen to your body and take at least 3 months off if not longer and slowly ease back into it. Even with a short fusion, sitting or standing for long periods of time were difficult.

Just take your time through the healing process and know ahead of time it does not happen over night. Having a strong support unit is good, because you are going to need them to keep the positive thoughts flowing.

Good luck!
Tamena

Dora
05-23-2013, 01:24 PM
Well I just found the forum and to be honest I have no idea what they are going to do to me. Originally there was different set of doctors at another Boston hospital that sent me to MGH (Dr. Woods). I was relieved enough that someone was willing to help I haven't exactly gotten the dirty details.

I'm starting to realize this might be a mistake.

I'm also starting to realize as I'm reading through some threads that I am rather unprepared for the recovery (insert huge amounts of panic)

Also getting a bit bug eyed as far as how many people seem to still have residual nerve pain. My whole reason for doing this is I can't really walk anymore and I certainly can't ride my horse (lifelong passion). Our last trip to Disney World I had to rent a motor scooter to even think about tackling EPCOT and we put the trip on hold for this year because I didn't think I'd be able to even handle walking the small parks.

That was when I was finally ready to have the surgery... but hopefully it is still a sound decision.

Is there a few robust threads I should be reading?

tae_tap
05-23-2013, 01:58 PM
Everyone reacts differently to the surgery. Many that had huge amounts of pain could see a huge difference afterwards. Nerve pain can take time to disappear because you are completely shocking your system. Surgery is not something to take lightly by no means and research about the procedure that the doctor plans to do is very important as well as research into your doctor.

By the sound of your pain and the inability to perform simple tasks such as walking it sounds like you are to that last limit and ready to take your life back from this disorder. As far as riding horses, your body will need a while to get used to all the shock it went through with the surgery. Roller coasters are out of the question for at least the first year after surgery in order for fusion to take.

This is something that only you can decide to do and I would not let someone else's experience scare you away or make you run faster towards the decision. No surgery is 100% guaranteed to work, but what helped me to make the decision is that I was tired of missing life due to pain.

If you have any specific questions that you want to ask, throw them out there. Nothing is too embarrassing and nine out of ten chances it has been asked and answered for many of us on here.
Tamena

HannahCP
05-23-2013, 01:59 PM
Hi,

I'm a first time surgery patient with correction of a double curve scoliosis that is progressing. Actual surgery date is July 15th at MGH in Boston MA.

I am a FT working mom who will have good support for most of July/Aug.

My job is primarily a desk job.

At what point have many people been ready to go back to work and how did you handle it? My career is important to me and being able to engage quickly is important.

Editing to add: Is anybody on here an active Dressage rider? If yes, how was your ability to ride your horse post surgery?

Thanks :)

Hi Dora,

I had spinal fusion surgery (T2-L3) on Sept. 28, 2012, which makes me ALMOST 8 months post-op. My job is also a desk job, which requires a lot of sitting, typing, etc...Pretty sedentary.

At 8 weeks post-op, I went back to work part-time (4 hours a day for an entire month-This helped because it was the month of December...so I had more days off than normal because of the holiday).

From there, I slowly increased my hours, 5 hours one week, 6 the next, and so on....I started working my full time schedule 6 months post-op.

At 8 months post-op, I still have pain while working. Low back pain, shoulder pain and lots of neck pain (tension headaches are a result). Everyone is different, some may be fine once they go back to work, I just seem to have issues, but am hangin' in there!

For the first few months, it'll seem like "you'll never get any better" - I had that at the 4 month mark, post-op blues...I cried daily and seriously would have resigned from my job if I wasn't the insurance holder in the family...I still wish that I could work part-time, but unfortunately, that isn't an option in my position.

Just know, that it will get better...The first 6 months aren't fun, but it's amazing how week-by-week you notice one more thing you can do, that you couldn't the week before...I hope this helps!

Hannah

rajma
05-23-2013, 04:44 PM
Hi,

I'm a first time surgery patient with correction of a double curve scoliosis that is progressing. Actual surgery date is July 15th at MGH in Boston MA.

I am a FT working mom who will have good support for most of July/Aug.

My job is primarily a desk job.

At what point have many people been ready to go back to work and how did you handle it? My career is important to me and being able to engage quickly is important.

Editing to add: Is anybody on here an active Dressage rider? If yes, how was your ability to ride your horse post surgery?

Thanks :)
Took me six months to get back to work part time. Went full time after six weeks. Sitting was very hard for more than 20 mins at a time. Still is hard beyond a reasonable amount of time. I got a stand sit table and I stand most of the day and take occassional sitting breaks.
Only advice I can give is to be very patient and take life real slow post surgery.

Pooka1
05-23-2013, 05:23 PM
My whole reason for doing this is I can't really walk anymore and I certainly can't ride my horse (lifelong passion).

Hi Dora,

I don't have scoliosis (my twins have it and are fused) but I want to tell you I completely understand your sentiment about dressage. I am obsessed with it also.

I have twice herniated a disc while riding and I will never stop. The second time was March of last year and because I refused to rest it enough, I still have a fair amount of pain many times a week associated with this, need to take OTC pain meds usually for it, and would rather live like that than take a hiatus from riding to allow it to heal. So I understand a little bit at least. :-)

I don't know anyone with a fusion who rides dressage but I know and know of people with scoliosis who ride dressage. They have to adopt all manner of compensations to stay perfectly balanced and it makes it even more challenging that it already is per what I have seen and can glean from what people write. Sally Swift developed Centered Riding in response to her scoliosis as far as I know.

In addition to your surgeon who maybe can't answer this, you really need to ask someone people who have had the fusion you have had to see what riding you can do. Just thinking about it, I would think it is a bit of an advantage in terms of posture to have a fused back if it is balanced perfectly over your hips. But you will need some play in your lumbar.

Is your horse's trot smooth? Some horses are moving sofas. Some you have to get them to move correctly to hope to sit the trot. I don't know what level you ride but you will minimally need to get the horse's back up and give you a place to sit AT ALL TIMES if you try riding again I would think. Do not ever try to sit an inverted trot or belly dance to sit the trot. I believe I hurt my disc the first time by belly dancing (sitting on my back pockets too much instead of having a vertical pelvis) to sit a huge trot on a large upper level school master.

I am not going to tell you to sell your horse if he isn't a moving sofa or if you find you can't or shouldn't ride after surgery. I will suggest you try driven dressage. There are competitions for this. I have never done it and I don't know how bouncy those carriages are but it is a potential way for you to continue working with your horse if you can't ride.

http://www.americandrivingsociety.org/dressage_test.asp

Here's a kur with one of the cutest haffies I have ever seen... oh who am I kidding, ALL haffies are cute!

http://www.youtube.com/watch?v=fcGeJbLn5Go

I feel for you. I so feel for you. I wish you every luck.

Sharon

Irina
05-23-2013, 05:53 PM
Hi Dora and welcome to the forum. I am 11 weeks post-op and doing good for what I've been thru. I had anterior / posterior surgeries with XLIF. Then I had a postoperative abdominal hematoma that required another surgery. So, given that I've had 4 surgeries in less than a month (three spinal and one for hematoma), I am doing fine. My back doesn't bother me much and nerve leg pain is getting better, but I get tired quickly. I still lay down several times a day and it won't be an option at work. I am also a determined individual, but I am going to take my time to recover - work can wait. And if it can't, than I'll find another job when I am ready.

Everyone's recovery is different and you might be able to go back to work sooner, but talk to your doctor and ask him/her when you'd be able to work. There are a lot of scary stories on the forum... it freaked me out when I first started reading it. Then, as I gathered more information, I became calmer and actually looked forward to having this surgery behind me. Good luck with your surgery and ask all the questions you have. People here are wonderful and I received a lot of support from this forum.

aileens
05-24-2013, 12:08 AM
Dora,

I had my two surgeries done by Dr Frank Rand at the New England Baptist hospital back in Feb 2013 - I am 14 weeks tmw. I plan on returning to work in July at around 4.5 months post to a desk job that's sedentary but stressful periodically - I do mergers and acquisitions type of work that require me to be mentally alert on tight deadlines. While I could physically go back to my job now, I still am fatigued (I lie down for 1-2 hours in the afternoon) and mentally I'm still somewhat scrambled, even though I've been off the narcotics for weeks now. My company has a generous STD plan so I am taking the time to heal properly and not rush things.

I was having major sciatica triggered by walking less than a half mile - when on vacation I would have to stop frequently to sit because of the burning pain and my leg going numb. Interestingly, the anesthesiologist told me right before my first surgery that they have very good success with improving leg pain, and less so with back pain (which I also had). I am so far very pleased with my outcome - I can walk over two miles at a time and have no more leg pain.

PM me if you have more questions - since we both live in the Boston area, I'd be happy to meet and share my experience. Aileen

susancook
05-24-2013, 01:02 AM
Dora, Welcome! I am retired but am very busy with volunteer work with many non-profits as well as working in International Health as a Nurse Practitioner and Researcher. I am 2 months postop. Procedures below. I was sure that I could somehow just do lots of PT and small steroid/denervation procedures and avoid surgery. Unfortunately, I was a lot like you in pain and inability to walk. We went to Disney World and I sat on almost all of the benches. I laid down on one airport rug with an ice bag on my back n Fiji. My Right leg pain and lower back and kyphosis pain were ruining my life. I read ALL of the blogs on this forum back 5 years [yes, pretty crazy, huh?], read most of the orthopedics/spine books at the medical library and then decided that I really had to schedule surgery. I cried, paniced, almost cancelled the surgery 4 weeks before my surgery date....then a calm came over me 2 weeks before my surgery because I let go of all of the craziness, prayed [I'm not very religious], decided to trust my doctor and quite micro-managing the situation and I was fine. Really. Surgery is difficult and recovery is slower than I would like....I'm impatient. But, I couldn't spend the rest of my life looking for benches to sit on or laying on the floor at an airport with an ice bag. I do not have the severe R leg pain that I had before surgery but do have some minor aches and pains that will probably resolve with time. I do fatigue but only nap about 2-3 days a week.

My suggestion? Do your homework or your due diligence. Get at least a second opinion, more if you need to. Do not have surgery until you are very convinced that it is the right decision and that you cannot go on without surgical intervention. Choose a surgeon that you can TRUST and work as hard as hell, to just let go and trust. Can bad things happen? Absolutely! But most people are happy that they have had surgery.

Good luck on your quest.
Susan

jackieg412
05-24-2013, 04:25 PM
Hi Dora,
I too went back to work,part time at 7 weeks. It was way too soon. It slowed the recovery down. While I still can't say all of the details{IT is because of a workers comp case} I will be glad to say more if you send a private message. Do be careful about work and what you can and cannot do. I was sent home after being back to work for 18 months. It had to do with the DR restrictions. Do make sure to speak to your Hr department and your Doctor. It is had to find another job. Just private message me and I will give more info.
Jackie

loves to skate
05-24-2013, 04:36 PM
Welcome Dora,
Susan gives very sound advice. A second opinion is a good idea and I would suggest Dr. Frank Rand at the New England Baptist Hospital. That is who did my surgery. It was love at first sight for me. We were living in Mansfield, MA at the time. He is very thorough and extremely compassionate and is an SRS spine surgeon. I think Dr. Wood is also an SRS surgeon.
As far as riding a horse after your surgery, I think it would all depend on how low the surgery goes, so you really need to find out that information
Good luck Dora, We have all felt that anxiety you are now feeling. Think positive thoughts.
Sally

titaniumed
05-24-2013, 06:24 PM
Dora

Iím not currently riding horses but Iím sure you will be fine riding after your recovery. I could ride a horse no problem but wouldnít want to fall.

Recovery takes a long time....I would expect to stay off for at least a year. I say this because we are not allowed to fall in our recoveries while we are healing and all the text books usually average 12 months for bone to fuse. My surgeons were very concerned that I had 2 steps leading up to my house, thatís another reason why I say this.

I resumed snow skiing at 14 months and did ok. I have crashed mildly, and that sure is scary but did ok. Falling off a horse on dirt would or could be a much harder blow than a mild ski crash on soft snow. Disturbing or re-breaking a level usually will require a revision surgery to repair....and some time because surgeons donít like going back in usually in under a year.

We have seen many return to work before they should be doing this....its mostly about having trouble sitting, with pain and fatigue issues during the immediate recovery phase. The 1st 6 weeks are the hardest part....resuming work should be done on a part time basis, and if you can work from home like I did, do just that. Most intelligent employers will know what extreme spine surgery entails, if not, train them.

I made serious financial decisions on 100 mg of Percoset. LOL Looking back at this now, I laugh because all those decisions in those days were done correctly. Hard to believe, but true! (smiley face)

Did they tell you this was going to be done from the back only? Usually surgeons will take their fingers and show you where they will be cutting.....Will they cut from the side or front?

Age plays a huge factor in recovery. I donít usually ask the ladies their age, but here I do, because it matters. How old are you?

Also, any idea of which levels they will fuse?

Welcome to the forum
Ed

golfnut
05-24-2013, 07:52 PM
Hi, Dora,
Welcome to the forum. It's a tough decision to have major surgery. You might want to read the threads at the beginning of "Surgical (First Time)" titled "I am happy I had surgery" and "I regret having surgery." I think that many who have had successful surgery with no regrets get busy with life in general and no longer post on the forum. I, for one, am happy I had surgery and have returned to my pre-surgery activities of golfing, tap dancing, and riding my bike. You will get tons of support and answers to questions on this forum.

Dora
05-24-2013, 11:49 PM
Well I am going to have to find out more about what I am having certainly.

The surgery was bumped today from the 15th of July to the 25 of July because the general surgeon who opens for Dr. Wood is not going to be available. On the phone the woman rescheduling me said this was the only general surgeon he would use to "open the front" which is starting to sound to me like I did hear right (I thought I heard wrong) that somehow the front of me is involved.

Dr. Wood is my second opinion because a neurologist at tufts wasn't 100% certain they wanted to take the case on.

I have a job that I love running global programs at a pharma company. It 'stressful' but I do enjoy the pace. I am panicking about being away for 4 weeks before working from home. I now am a tad more terrified hearing how long it took people to recover. One of the biggest reasons for having the surgery is I can't handle walking the big conferences anymore. I'm actually staying back off my favorite one this year because it's in Chicago and that center is enormous. At the moment I do feel slightly caught between the proverbial rock and a hard place. 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.

On the horse front... my mare is a large young horse (17.2 hh). Pushing most of 3rd now in solid fashion but hasn't been introduced to the double yet. I bring along my own horses but I will have my coach on her until I'm able to get back up. Unfortunately I can't call her a couch. She ended up being much larger/broader than anticipated when I purchased her as a long yearling. I compensated in the saddle for a very long time but the collapse has now made it very hard to stay centered and out of her way. She's a dream as far as work ethic and she tries but when your body is saying one thing and your general commands are saying another... there are times she gets frustrated. For the most part she is a safe ride. Strong, but usually logical. She has young horse moments but thinks.

Oddly enough I have access to driving I guess if necessary. The facility I train with is active in combined driving and offers monthly clinics with a woman who represented the US twice in WEG for driving. She's worked with my horse a few times and says she'd be a good candidate, though she has a tendency to be strong in long lines and under saddle out in open spaces (by strong read - cheerfully using her large size to her advantage) so would need time to mature.

But I've been riding almost my whole life so 35+ years of saddle time translates to me not having the ability to fathom giving it up at the moment.

The surgeon was going to try to leave the bottom disk not fused to give some compression ability for the trot work. I'm not sure it will be enough.

A year... wow... he was saying 8 weeks if my body would tolerate it.

Did most people use neurosurgeons or orthopedic surgeons here?

Dora
05-25-2013, 12:00 AM
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.

1484

Pooka1
05-25-2013, 12:07 AM
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
05-25-2013, 01:19 AM
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
05-25-2013, 02:51 AM
"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
05-25-2013, 10:02 AM
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
05-25-2013, 10:09 AM
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
05-25-2013, 10:32 AM
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
05-25-2013, 12:20 PM
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
05-25-2013, 01:27 PM
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
05-25-2013, 02:34 PM
Ok. It looks like you are having and anterior lumbar discectomy and fusion. Its called an ALIF. Thatís 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 ďbefore the progressionĒ.......thatís a great attitude! I like that.

In my experience, (Iím 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 didnít 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. Itís the recovery and weaning thatís 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
05-25-2013, 07:20 PM
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
05-25-2013, 07:50 PM
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
05-25-2013, 08:36 PM
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
05-25-2013, 09:47 PM
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
05-25-2013, 09:55 PM
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

Pooka1
05-25-2013, 10:37 PM
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.

Dora, Gayle makes a good point. As you know, riding requires a lot of core and riding 17.2+ warmblood(?) requires a ton. Riding for me is like doing 500 sit ups each ride because I do almost everything from my lower abdomen. My husband touched me there a while back and commented at how hard the muscles were. I do NOTHING exercise-wise off the horse.

The other issue is you will be protecting any pain when you try to ride in your recovery. I am not fused but I am protecting the still-injured disc. The injury has imposed a slight spiral left seat all the time if I don't remember to compensate. I don't actually think too much about it any more because my body senses the difficulty turning right and finds spiral right. It was pretty obvious (and comical) that I couldn't turn right from my seat after my injury! If you ride, you can just try to walk a straight line with no stirrups or reins to see where you need to compensate to find center. You are used to this from riding with the scoliosis I am sure.

I am concerned about all the issues with returning to ride and also trying to do it too soon. My kids had fusions from T4 to L1 (i.e., very little lumbar involvement) and although they don't ride any more, they were restricted from it and all manner of activity for 8 months. From reading the testimonials from adults, I will be absolutely shocked if an experienced adult deformity guy releases you to ride until at least a year and probably longer. But I don't know that obviously. This is why I am very concerned you don't get blind-sided about returning to ride and that you have some plan for your mare while you recover. She is young so you can drop her out and back into training if you like. My horse is older and I don't allow him to drop out of training because I think it is easier on him overall to stay working than come out and get back in. I send him to one of my instructor's farms when I am gone or injured and he is trained 6 days a week while there. He has been there many times. I know she treats him well because he loves her. I like to tell people my horse has two mommies, neither of whom is gay not that there is anything wrong with that. :-)

Again, good luck.

Pooka1
05-26-2013, 08:03 AM
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.


Sorry I read this as back "injury" but you did write "surgery."

This is good. Make sure the people you talk to have the same fusion you will have. I don't know about fusion but I know about back function in dressage and my guess is thoracic fusion if hyper-corrected might be a big (maybe unfair) advantage in dressage. But I am not sure about lumbar fusions. If they fuse you without enough flatness in your lumbar I think it will compromise your ability to collect. Some of the radiographs I have seen on adult lumbar fusions have a pretty large lordosis and people complain about their stomach sticking out. Of course the surgeons are trying to avoid "flatback syndrome" and I am not suggesting they give you a flat back just to ride and really I shouldn't be talking about surgery at all because I am not a surgeon. But I am just mentioning it so that you ask people with full lumbar fusions like you will have and not get the wrong idea by inadvertently asking someone who had a thoracic fusion or only one or two levels fused for a disc injury or something.

So I would ask them SPECIFICALLY about their ability to collect the gaits if they have a full lumbar fusion. Also because you said you were having a curve above the lumbar fused, I would ask them about their ability to do shouilder-in, renvers, travers, and half pass because those require separating the upper body from the hips and being able to move them in opposite directions. At least that how I ride them... my hips control my horse's hips and my shoulders control my horse's shoulders. My horse is sensitive can can be ridden in this way but I think everyone rides in that way.

Last, I also know of people who have had back surgery who ride. There is a prominent GP trainer in the NW and I think Robert Dover may have had one or more surgeries. I know he has a bad back but is still a six time Olympian. But I don't know the nature of their operations or if they involved fusion. I am doubting they involved fusing the entire lumber. I could contact the GP trainer in the NW to ask.

aileens
05-26-2013, 09:10 AM
I second the vote for Dr Rand - I'm very pleased with my experience with him. He strikes me as very conservative - he told me he's never gotten more than an inch in height in surgery, so I was thrilled when I came out 3 inches taller! I expect Dr Rand would give you a more realistic expectation as to when you could ride again.

I'm in the pharma industry as well - even tho we're much-maligned, at least they have generous medical and STD coverage. I could take 6 months leave w/out worrying about my job, though I'm keeping in touch with work since we're going through a major reorg. Unfortunate reality these days...

Irina
05-26-2013, 01:20 PM
I second the vote for Dr Rand - I'm very pleased with my experience with him. He strikes me as very conservative - he told me he's never gotten more than an inch in height in surgery, so I was thrilled when I came out 3 inches taller! I expect Dr Rand would give you a more realistic expectation as to when you could ride again.

I'm in the pharma industry as well - even tho we're much-maligned, at least they have generous medical and STD coverage. I could take 6 months leave w/out worrying about my job, though I'm keeping in touch with work since we're going through a major reorg. Unfortunate reality these days...

Aileens, your company is so nice. 6 months of medical leave plus medical and STD - very generous. Under FMLA, employers with over 50 employees are required to provide 3 month of medical leave and your company gives way more than that. I want to work for a company like that :-)

susancook
05-26-2013, 09:10 PM
"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."

Your comment brought tears to my eyes. If you have an anterior incision, Just do it slowly and have her cuddle on your front lying on your side and her on her side on your front. You could actually do that in the hospital bed a few days after surgery. That way, you can stroke her hair and give her a cuddle and talk quietly in her ear. Early on, just be slow about it as you sometimes need to adjust how you are lying.

Susan

JuliaAnn
05-27-2013, 12:35 AM
Dora, welcome to the forum! I'm so glad you found this board. The people here are all so wonderful and full of information on every question you may have. Don't hesitate to ask.

It's really hard to predict how you will feel after surgery and what your limitations might be. Everyone has their own unique recovery. Some bounce back really fast, others take their time. Age also has something to do with how fast you recover. If you are active now, you already have an advantage as to how fast you recover. Everyone on this board has given you such great advice!

I'm 54 and at 8 months post op, I still have some pain but it is manageable with Tylenol a couple times a week. I can sit comfortably at the computer all day long with little discomfort, starting from around the fourth month. It took longer to walk though because I needed a heel lift in my left shoe and didn't know it. For sitting, I use an ergonomic office chair. It can rock back and I've found that a leaning back position is very restful. A lot of people use recliners for that same reason.

I was fused from T1 to Sacrum. I was told I could "run lightly" but I forgot to ask when. I don't feel like running yet, or even walking fast. Our bodies let us know when we're ready for activity. Extra pain means we're doing too much, too soon.

I'm not sure how much jarring there is in horseback riding but I really think it would very risky to do anything before six months. We have a van so I have to hoist myself up into the seat. I'm at 8 months and that is still tricky because there is no twisting at the waist allowed. Is there a way you can pretend you're fused and test out how it would be to go through your whole riding routine? Perhaps you can imagine that your complete back is rigid and you can't bend or twist at all as you get on and off the horse and ride. Do you wear any type of back brace while riding? If you test out being very rigid, without any twisting or bending, maybe that would give you a better idea of how the first months riding will be. That's really good that you've been given a six month leave from work.

aileens
05-27-2013, 08:04 PM
Aileens, your company is so nice. 6 months of medical leave plus medical and STD - very generous. Under FMLA, employers with over 50 employees are required to provide 3 month of medical leave and your company gives way more than that. I want to work for a company like that :-)

Hi Irina - yes, I know I'm very lucky. Pharma companies are all about taking care of patients, so it's nice to see they take of their employees too. It's really sad to hear that hospitals don't take the same view towards their own employees.

Dora
05-31-2013, 02:35 PM
Okay so the past few days I've been working some details through. Still need to at least have a phone consult with the surgeon so I can better understand the surgical plan. I had the conversations with work and adjusted my teams so that is now off my mind. Our CMO will run my programs so honestly it takes the pressure off trying to pick someone. It sounds like I will be working from home at first and then working part days in and out of the office. I'm planning on allowing for a 12 week process but I'll let my body dictate the part time return and will organize what I can through December. I'm not going to lie, this amount of time off makes me nervous but I've at least arranged for it. My company btw is good to us. This is NOT on them. It's all on me.

I think I am going to stick with my surgeon because of the complex nature of time off/having help around/career. If I could have managed a faster consult I would but getting booked for the OR for a day seemed to be an event onto itself.

On the horse front - Sat down with my coach and discussed my mare's potential for driving and he thought it would be good so along with the three rides a week we'll add in driving. (I keep her in part training since my back progressed to the point where riding 2x week is my limit so moving to full training is how I planned to have her covered) I have to buy a cart with traces long enough for her because the competitive driving horses at the facility are all ponies (so not unexpected but I'll admit I hoped he'd have something hanging around).

Sharon I hear all your thoughts on riding limitations which was why I had asked on here. My concern with what they were going to do to my back made it illogical in my head that I'd continue to easily ride at the level I do. And on a horse in training vs. a schoolmaster there are always extra bits of effort to correct quirks. In addition to thinking the sit work will lose its fluidity I paid attention last night even during the half pass work to the exact position of everything and I think I'm in for a hard reality after. I honestly don't remember not riding so that which comes intuitively I think will be restricted. That will be my shock. I don't have to think about the majority of the small parts right now. It simply is. I played with pretending I was locked up just in a three track SI on my right side (the more compromised side right now, so easier to imagine) and without the ability to open and articulate the right hip I couldn't get the three track. It was sobering. After that I thought about putting it off another year but then I wake up after riding rather frozen along my shoulders back and right leg and manage to mentally recommit.

What were the BIGGEST shocks to everyone as far as your day to day limitations. How did you prepare for them???

Pooka1
06-01-2013, 10:56 AM
On the horse front - Sat down with my coach and discussed my mare's potential for driving and he thought it would be good so along with the three rides a week we'll add in driving. (I keep her in part training since my back progressed to the point where riding 2x week is my limit so moving to full training is how I planned to have her covered) I have to buy a cart with traces long enough for her because the competitive driving horses at the facility are all ponies (so not unexpected but I'll admit I hoped he'd have something hanging around).

Good plan. :-) I didn't realize they had pony divisions in driven dressage but why not! The FEI ponies are so cute doing third-fourth level. If I was a microwoman (five foot nothing and 90 pounds) and not a regular-sized woman I would only ride ponies. :-)

When you are released to return to ridden work, your mare will be more advanced at least another level having been in full time training for over a year so that will help you get back into it. Fourth is what the schoolmaster was that I lessoned on for about 9 months and that was a hoot!


Sharon I hear all your thoughts on riding limitations which was why I had asked on here. My concern with what they were going to do to my back made it illogical in my head that I'd continue to easily ride at the level I do. And on a horse in training vs. a schoolmaster there are always extra bits of effort to correct quirks. In addition to thinking the sit work will lose its fluidity I paid attention last night even during the half pass work to the exact position of everything and I think I'm in for a hard reality after. I honestly don't remember not riding so that which comes intuitively I think will be restricted. That will be my shock. I don't have to think about the majority of the small parts right now. It simply is. I played with pretending I was locked up just in a three track SI on my right side (the more compromised side right now, so easier to imagine) and without the ability to open and articulate the right hip I couldn't get the three track. It was sobering. After that I thought about putting it off another year but then I wake up after riding rather frozen along my shoulders back and right leg and manage to mentally recommit.

That sounds like a good experiment to give you some idea of how it will be after fusion. As I mentioned I couldn't even turn right shortly after my disc injury because I was in spiral left seat protecting it. Once the pain was more manageable, I had to push into it on most days to get straight and then I had top push into it more for right bend. Perfect balance in dressage is a game of millimeters because horses can be that sensitive.

Take it one step at a time. Allow yourself to recover. Don't go back too early like I did from my disc injury. Here I am giving you advise that I didn't take myself! If you don't take it I will completely understand but I think fusion is in a different category than a herniated disc in terms of potentially bad consequences from going back too soon.

Good luck, Dora.

titaniumed
06-01-2013, 11:44 AM
I think fusion is in a different category than a herniated disc in terms of potentially bad consequences from going back too soon.



Done both. Doing it now.....again......Man-o-man! All I can do now is laugh about this. I was upset (pissed) last month, but Iím over it now. Dora, I now have 2 cervical herniations.....

The difference is if you disrupt a herniation it results in sharp pains..... If you disrupt an fusion, it could mean more surgery.

I walked on eggshells after my scoli surgeries for 10 months because of this....the dreaded non-union and resulting rod breakage. When we read about this happening, we slow down.

Ed

Pooka1
06-01-2013, 12:08 PM
Dora, Here is a thread started by Titanium Ed on life after long fusion. I just wanted to make sure you saw it.

http://www.scoliosis.org/forum/showthread.php?14336-Adapting-to-limited-mobility&p=151170#post151170

Wish2bstraight
06-01-2013, 07:33 PM
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.

Dora,

There are only three adult scoliosis doctors in Boston. Dr. Rand, Dr. Woods and Dr. Glazer. Dr. Glazer, from Beth Israel did my surgery at the beginning of January 2013. I didn't start driving until the beginning of April and will be going back to work Monday full time (with some reservations). Neither Dr. Rand or Woods actually studied with Dr. glazer. I don't remember which one it was. You may have some luck trying to see Dr. glazer for a second opinion. Good luck.

susancook
06-02-2013, 12:51 AM
"What were the BIGGEST shocks to everyone as far as your day to day limitations. How did you prepare for them??? "

I am 2.5 months postop. I am impatient to get well. I am doing phenomenal, I think, and take very little pain meds. I guess my shock, or surprise is how long it takes to heal. I was surprised that I needed and still do, need to take a nap during some days [OK, I'm 66 and I am sure that you will heal faster than me!].

Prepare? do deep knee bends holding on to a chair to increase the strength in your quads. Hire a weekly or every other week housekeeper.

Good luck and I feel that you will do well since it sounds like you are in good physical shape.

Susan

Confusedmom
06-02-2013, 09:14 PM
Susan,

I think Ed will back me up on this. There is a phase I went through later, when you really aren't in much pain anymore, but you have tons of fatigue. This was maybe 7-10 months with me. Anyway, I found I wanted to (and usually did) take naps every afternoon. My body was just exhausted, from healing I guess. Finally around 11 months or so I started to be able to be up and about for the whole day. So don't be surprised if the naps last longer than you think.

:-),
Evelyn

jackieg412
06-03-2013, 07:39 PM
I think my biggest shock was how long it takes to feel better. Also not being able to keep working --and I am not happy about that!

Dora
07-24-2013, 11:47 AM
Tomorrow is the day....

I've been trying to keep up with some squats for thigh strength and I let them put me down as part time all the way to Dec 2nd... so thank you everyone for the advice.

I went through the surgery with them on July 10th so I think I have a rough idea what to expect. They are choosing not to fuse the upper portion of my back at the moment, just from the middle down and I'm loosing one disk at the bottom and they're caging others from the front and then putting hardware in through the back.

I asked not to have illiac crest bone taken because of the riding after. They made a note so hopefully that will be the surgical plan. My argument for that was I am on the younger side and anything they remove from me is a life long change. I don't want to trade pain for pain if I can avoid it and they can't put bone they remove back. I'm upset enough they'll be using crushed part of bone from a vertebrae for the front fusion.

All in all I'm a bit of a wreck today but I'm taking it easy and leaving work after my last big meeting so I'll have a few extra hours tonight at home.

tae_tap
07-24-2013, 12:06 PM
All will be fine. Keep positive thinking and do not let anything or anyone negative in your bubble. I will be praying and keep us updated on your progress.

It is in His hands now,
Tamena

loves to skate
07-24-2013, 12:39 PM
Dora, Hugs and prayers for calmness and a successful surgery and easy recovery.
Sally

mabeckoff
07-24-2013, 02:40 PM
Hugs and prayers for a uneventful surgery.

Melissa

Pooka1
07-24-2013, 07:50 PM
I asked not to have illiac crest bone taken because of the riding after. They made a note so hopefully that will be the surgical plan. My argument for that was I am on the younger side and anything they remove from me is a life long change. I don't want to trade pain for pain if I can avoid it and they can't put bone they remove back. I'm upset enough they'll be using crushed part of bone from a vertebrae for the front fusion.

Hi Dora,

The argument I would use were it my child is DO NOT TAKE BONE FROM THE ILLIAC CREST FULL STOP. And I would have witnesses present and I would make the surgeon acknowledge it in front of witnesses. This is one issue I would change surgeons over were it my kids because I view it as that important. I have an online friend who says the pain from the illiac crest harvest site is bad and it will never go away. This has nothing to do with riding as far as I can tell nor does it have anything to do with you being young versus old. They HAVE NOT SOLVED the pain issue with this procedure as far as I know.

Good luck tomorrow. You'll be a star. :-)

Sharon

Doodles
07-24-2013, 08:29 PM
Dora--
Best wishes for your surgery. Prayers and positive thoughts for you! Janet

titaniumed
07-24-2013, 08:49 PM
Dora

You will do well, try not to worry.

Try to keep in touch with us if you can. You could write your username and password down and have someone else post.

I donít think that they will dig on your pelvis for bone since its well known in the scoliosis community that this isnít the best thing. You could mention this to your surgeon before you go in.

Ed

Irina
07-24-2013, 08:56 PM
Good luck to you, Dora.

susancook
07-24-2013, 11:46 PM
Good luck! You will do well!
Susan

Dora
10-20-2013, 07:15 PM
UPDATE :)

I had tried to get on here a few times and I think the forum was down or some such.

So I had surgery the 25th of July as planned.

Positives were they left the last vertebra alone once they got in there - That had changed from the final decision going in. So last one is left alone and the top 4 and my neck. I know that I could need surgery later to fix this but I'm hoping that it buys me a bit more time in the dressage saddle (horses for those non-horse people :) )

Another happy point - They left the illiac crest alone and the only bone is a small chunk from on vertebra that they crushed to seed along my spine for the cadaver and bio sponges.

Now this was done at MGH with Dr. Wood and it involved opening me up in the front and the back. The front surgery was done with a general surgeon.

Pre-op the hospital was wonderful. I don't recall but apparently after the surgery for the first 12 hours or so I was on a special floor because they couldn't quite get the post-op pain and vitals figured out. This was also a very good experience.

After this?

It all went to hell.

The general surgery floor was short staffed and the staffing over the weekends were all rather young nurses. The room was disgustingly dirty. My family was horrified and took photos of how disgusting the bathroom was and the floors and walls. From incorrect diet (I'm a reactive hypoglycemic and they kept trying to give me full sugar jello etc instead of a plain clear broth) to not listening that I have a long history of anemia that does not respond outside the hospital without transfusions or iron transfusions.... AND.... because I was on my feet and walking with the walker they released me two days early....right at day 4 when the hospital stops making money on the bed (I know this from my line of work and the spouse's line of work).

Now I get that I was mobile but I still hadn't been able to eat solid food. I ordered it yes, but I couldn't keep it down plus my fever stayed up and I noticed the tell tale lump under the front incision... wound infection.

The young resident intern from the spine team kept calling me "dear" and telling me that he had interned at Children's Hospital with the best already and I certainly didn't have a wound infection and there was no reason to keep me in. He ignored the fact that I kept telling him I couldn't eat.

Anybody with a puncture wound experience will know what I am saying when I was able to explain to him that this lump was not normal. He insisted that it was where the internal stitching happened on the fascia.

He insisted that I sign the release papers. I agreed ONLY if they got me a hospital bed through my insurance.

So off I went without seeing anybody more senior than Dr. "I got my patient out in 4 days" intern.

................ and promptly developed a high fever and a giant wound infection burst about 12 hours later.

Great. Perfect.

Another painful car ride back to Boston and I was tossed between the General Surgeons and the Spinal Surgery team. Nobody would call it a wound infection until after it was dressed up and instructions given and they finally asked me if I had any questions. I said "You need to say to me 'YES THIS IS A WOUND INFECTION' before I'm walking out this door."

They stood there dead silently before one of the general surgical interns shrugged and did and after they all finally admitted that I needed to see my hematologist based on the last lab values from my release day.

So somewhat horrific right? And the recovery from the wound infection was HORRIBLE. And LONG with a metric ton of visits into the city. It's an ugly incision too, very uneven etc. But it's closed now and I'll take that.

Believe it or not I'm going to stop there and not even get into the rest of the experience because it was like a bad, made-for-tv movie when you kind of want to sit there and look sideways at the TV and go "Really? Really? How is that even plausible?"

NOW.... THE GOOD (because I swear I'm not the type to complain and b*tch about everything)......

The surgeon is brilliant.

Dr. Wood took my awful screwed up spine and did something in there that allowed me to go for a (easy) 4.5 mile hike yesterday with my family. I think people on here can understand that prior to this my life was as if I was in prison. I couldn't stand really. I could hardly walk. Sitting at my desk all day was painful. The outside of both my feet were calloused because the foot rolled with each step.

And yesterday I was outside hiking along farm fields and some gentle wooded inclines. We were slow but it was worth it.

I'm back almost full time at work. I'm at a desk so with some changes in furniture and awareness by the company that I'm not quite up to 24/7 self. I'll work from home if I wake up and I'm all locked up.

But I want to share for those looking for some hope....Almost right away I was up on the walker and then every day I was able to walk a bit further and move a bit more. It is/was hard.

Sometimes I'm a sweaty mess after a mile. Sometimes I can't stand for as long as everyone else. I do get tired quickly. I do have pain.

I allow myself all of this. I'll leave work if I'm having a bad day etc.

But I'm down to the oxy 1x a day with some Tylenol.

I'm dreaming of getting back up on my horse and I'm hoping I'm cleared to jump up for some gentle walk lunge lessons on my daughter's horse in November (steady kind horse, my horse is young and a bit risky for now).

So.... right now I am happy I did it. I believe it will get better as time goes on.

golfnut
10-20-2013, 07:29 PM
Dora,
Well, you went to hell and back. What a horrible experience! It sounds like you are doing well now. I can tell you that whatever aches I still had at a year were reduced when I hit 2 years and practically non existent now at close to 3 years. Keep working hard and you will be amazed at your progress in time.

susancook
10-20-2013, 07:56 PM
Wow, what an experience! From dirty hospital to second guessing young MDs. I hope that you contacted Dr. "get you out in 4 days" doctor when you returned with.....seems like nobody said that you had a wound infection. So what did they think that it was? It must have been very frustrating to tell them over and over again about your concerns, only to be discounted.

I know very few people who had a "perfect post-op course". Seems everyone had something from minor problems to others requiring a second surgery or hospitalization. Spinal surgeons are strange people, once the surgery is over, they go on to the next case, seeming never to look back.

I am looking at a second surgery to repair an incisional hernia at the ALIF site. While having the ALIF initially really didn't worry me, I guess because I was so concerned about paralysis from the surgery, I am now quite frightened of infection and the pain.

I hope that your recovery continues and pain decreases more and that you become more active although I am amazed at all that you are doing now. Your horses no doubt miss you and getting back into your previous routine will further normalize your recovery. Pick a gentle horse to start.

Susan

Dora
10-20-2013, 08:24 PM
Karen - I love hearing the positives. I keep reminding myself that I'm not allowed to judge anything I'm feeling until I'm a year out. I'm just counting my blessings that it is an obvious improvement from prior to surgery. I really could not have gone on that walk yesterday before going into surgery.

Susan - I was just catching up on your thread :) I wouldn't worry to much about the hernia surgery. I think I remember that you are a nurse right? You'll be able to articulate any post op issue so much more fluently than I could with my "See young MD, in horses when there is a puncture wound the heals too fast you feel this...." On the pain/recovery part... so many hugs from me. I know that was my biggest thing going into this surgery because I've had two major necessary surgeries (non back related, different hospitals, excellent care) before and it was KNOWING what waited on the other side this time that had me scared before going in.

But from reading about your recovery spirit I bet you'll be amazed at how fast you come back from this one. :)

Oh and as a funny aside, the MGH office I swear to god, hid the young MD. I've seen the other interns and I'll give credit to the spine service that Dr. Wood has personally seen me at each post-op since that whole debacle. Once out of the honestly disturbing room conditions (and I'm a horse person, I can handle dirt) and floor care the situation was almost funny.

For anybody else that is reading: I only get into the hospital conditions here because I don't know if I would have selected MGH had I read something like what I am putting out there. I want people here to be able to add it into their considerations. Even contacting the patient advocate did nothing for the room issue because once the weekend hit the patient advocate was out. I have used Beth Israel and Brigham in Boston for two other major surgeries and I can't say enough about the care and the quality of the facilities.

As a almost pathetically funny aside there was a article in Consumer Reports about a month ago listing MGH as one of the worst for after surgical care. I can attest to the accuracy.


editing to add a general question: Pain management... I'm on oxy 1x a day @5mg. It seems like this is still somewhat normal? I'm on the oxy with 2 tylenol. Now that I'm at 12 weeks out should I be getting off it entirely? Do people just drop the last pill or switch to every other day or?

tae_tap
10-20-2013, 08:57 PM
My mouth just dropped to my chest and my husband was horrified by the details of your experience! I love that you were able to fight and battle (because we all know that this is a battle) back to turn the end result positive! Keeping making those small victories and sharing them to give myself and other hope. Our families hurt with our hurt because of the things we can no longer do due to the pain and exhaustion from the pain. So the battle to overcome is worth it knowing that I will soon be back to normal and be able to do more with them. Hiking? Amazing! I can't wait for that. Congrats on everything!
Tamena

Pooka1
10-20-2013, 09:22 PM
Dora! So glad to hear from you. I was wondering how you were doing!!

What a wild ride you had there. :-) It sounded even wilder than the one Spicer Cub, aka knucklehead of the year, ran... I won't spoil it for you.... http://www.youtube.com/watch?v=1FpaIIKdah4

:-)

So happy that you have plans to continue riding!

Sharon

Dora
10-20-2013, 09:27 PM
My mouth just dropped to my chest and my husband was horrified by the details of your experience! I love that you were able to fight and battle (because we all know that this is a battle) back to turn the end result positive! Keeping making those small victories and sharing them to give myself and other hope. Our families hurt with our hurt because of the things we can no longer do due to the pain and exhaustion from the pain. So the battle to overcome is worth it knowing that I will soon be back to normal and be able to do more with them. Hiking? Amazing! I can't wait for that. Congrats on everything!
Tamena

Oh it is like getting out of jail. I'm not kidding. Sometimes we're even just doing the daily "walk the mama" ( I try to get in a mile a day no matter what that is intentional) and I am amazed that I'm OUTSIDE doing this. Without a cane or feeling my bones grind and then my back freeze up. It was very very very hard on my family. I couldn't do things like say "Lets go clothes shopping for school at the mall", because the mall was a torture chamber of hard surface walking and lots of it. Now I can set out and shop a bit (with reason, I still get tired and it does hurt after an hour or so). Now granted pure hard surface walking I like to use Crocs to cushion it.

I'm even hoping to be able to play soccer with my daughter a bit and maybe join her and the spouse with their 5k endeavors. That has been my first goal. Walk a 5k (which was yesterday. I walked that and still felt good enough to go on)

I know everyone is different but barring any real individual pain management issues, or surgical complications (or anything that COULD happen) all I can say is go into recovery knowing it is painful and you have to push through it (within reason, I used a physical therapist to judge if I was ready to push the walking further and further) but the outcome will worth it. It really was reading on here that kept me focused on going through the surgery and then knowing I am going to recover with time/patience/effort.

Dora
10-20-2013, 09:36 PM
Dora! So glad to hear from you. I was wondering how you were doing!!

What a wild ride you had there. :-) It sounded even wilder than the one Spicer Cub, aka knucklehead of the year, ran... I won't spoil it for you.... http://www.youtube.com/watch?v=1FpaIIKdah4

:-)

So happy that you have plans to continue riding!

Sharon

I hadn't seen that! Well they can market him as having "Dressage potential" when he flunks out of the race world :) Change the bend and he'd have a hell of a zig zag.

Though knucklehead of the year goes to my mare. I let a dear friend take her out this fall to grab a score. Mare proved that well behaved horses rarely make it GP and the friend bought some real estate, sprained her ankle and had to scratch. Bad, bad big baby horse.

I think I saw on another thread that you had to stop riding with your disk??? Temporary?

Pooka1
10-20-2013, 09:48 PM
I hadn't seen that! Well they can market him as having "Dressage potential" when he flunks out of the race world :) Change the bend and he'd have a hell of a zig zag.

Good point! Spicer Cub was the fastest horse in that race considering the distance he covered. He's a star if they can keep him on the track. :-) And the jockey lost his irons on the second "excursion" and finished the race with no stirrups and a long leg!


Though knucklehead of the year goes to my mare. I let a dear friend take her out this fall to grab a score. Mare proved that well behaved horses rarely make it GP and the friend bought some real estate, sprained her ankle and had to scratch. Bad, bad big baby horse.

Oh yikes! Well, she is just a baby. And I agree they need a fire in the belly to make it to GP.


I think I saw on another thread that you had to stop riding with your disk??? Temporary?

Yes temporary!!!!!! I have been pain-free for about a month now, starting about 1.5 weeks after I stepped off and started driving up the world wide price of Motrin. Though sorely tempted to take him back now, I will be good and will leave him in training until early November. I'm going to try a test ride near the end of this month, just walking, to see if I have any pain. If I do I will leave him in training for longer. If not I will bring him back.

Irina
10-20-2013, 10:46 PM
Dora,

Wow, what an experience! But the worst is over, right? Speaking of oxy - when I was weaning off I was going off and on the final dose until I completely stopped taking it. I think it's normal to take 5 mg every other day, than every two days - it will be easier on you. Everything will get better as time goes by. Keep walking and doing PT and you'll notice small improvements. Some days would seem like nothing changes, and then bum, you're able to do something you could not before! I am impressed that you're back to work already - you are a one tough woman!

aileens
10-21-2013, 12:10 PM
Wow, so sorry to hear that you had a terrible time at MGH - you wouldn't think that one of the top hospitals in the country would be in that condition! I wonder what the infection rate post-surgery is for MGH? New England Baptist emphasizes that their infection rate is only 0.4% and it was one of the factors in my decision to go there. I was scared off from Beth Israel because of the teaching hospital status - oh, you were in the hospital when the new interns/residents came in for the year, that probably didn't help matters. I had the opposite issue at the Baptist - not only was it super clean, I found the younger doctors to be overly cautious and had me freaked out about a pulmonary embolism, subjecting me to an additional CT scan over the weekend when I was fresh out of my second surgery. Of course as soon as the more senior cardiologist came in on Monday, he was like "nothing to worry about, this is normal". I know it's better to be safe than sorry, and I'm glad they erred on the overly cautious side.

I'm amazed that you're back at work so soon. I'm at 8 months post-op and I still like to work one day from home.