The Date Is Set!

[progress]

It's true!

Yes congrats,
I would also like to add, for those considering surgery that the post-op period is quite life changing. I felt a bit sorry for myself that I would be using all my accumulated sick and holiday pay on recovery. I am pleased to say though except for a bad two weeks in hospital, mainly due to a bowel ileus (sleepy bowel), recovery has been dreamlike. I have been enjoying walks and have really slowed down so I am noticing flowers etc that I would have overlooked in the past. I have really enjoyed quality time with family and friends, as well as reading and watching DVDs guilt free. This the holiday I always wanted but I think in holidays you always feel you should be on the go or productive. It sounds like you might be ready for this kind of break too. The area of my back that was concave is still quite numb and gets a bit achy at night but I feel that in time it will pass but may take months. I am now just over 4 weeks post-op and will be ready to return to work at 6 weeks, although my work isn't physical and quite cruisy.
All the best
Kelly
Progress
49 yrs
55 deg thoraculumbar

Maybe my slowing down says something about what a stress head I have been and I think this major surgery helps us to not sweat the small stuff and appreciate everything. Anyway I hope this feeling lasts. But you can definately view recovery after the first few weeks as a chance for a break as long as you have support. Just go with the flow, use the grabbers, and let the house get a bit untidy.
Kelly

[mabeckoff]

Maybe my slowing down says something about what a stress head I have been and I think this major surgery helps us to not sweat the small stuff and appreciate everything. Anyway I hope this feeling lasts. But you can definately view recovery after the first few weeks as a chance for a break as long as you have support. Just go with the flow, use the grabbers, and let the house get a bit untidy.
Kelly

Thank you Kelly for putting into words the way I am feeling

Melissa

[BendyBill]

Katie, thank you and good luck for your degree. I'm so excited and feel endlessly positive about my career and it seems you feel the same way. How fortunate we are. The decision is getting much easier with time and research thank God, but that is not to say I won't start to get gradually more petrified as the surgery looms closer...


Rebecca, as I'm sure is the case for many, I am the same as you in that the main thing I'm worrying about is progression - that and a loss of ability to maintain some of the more strenuous activities that I hold dear to me (rock climbing, snow boarding, surfing, squash), which could be taken from me whatever my decision. Regardless, I am determined and WILL re-start these activities when my body is ready and when my doctor says I am able.
I have sent a follow-up email to my surgeon's secretary and will hopefully get a reply in the near(ish) future...
And thank you for directing me to your blog, this will be of great help to me and thank you for your blessings.

Karen, I'm so happy you're doing so well. I seem to remember some posts of yours saying you are rather active - would you say that such a successful recovery has something to do with this?

Ed, thanks for directing me to this book - it looks like a very interesting read! Do you know of any studies on the long-term effects of CD instrumentation? Thank you for your help and thank you for all your (1676) posts. They are invaluable.

Kelly, funnily enough I don't think I do need the break because as I type this post I'm in a villa in Spain in the blazing sun surrounded by olive groves, and I'll be here for another week and a half! I'm very much looking forward to spending time relaxing and watching DVDs but the excitement of having time to compose and play the 'cello far outweighs it! I hope I'm not being unrealistic when it comes to these things. Do you think I am?

Jess, my father and I have spoken about my surgery a lot and, although he is scared and has the parental guilt, he has also been telling me that this is a chance to take a load off. One thing he thinks is hugely important and almost certainly makes Kelly and Melissa's vacation-like recovery possible is POSITIVITY. It's effects are insurmountable.

Thanks for all your posts.

B

[progress]

Have you got a spare bed in Spain!

Wow, relaxing in Spain. No I don't think you are being unrealistic, especially after the first month of recovery. You may actually find your compositions are more creative. This surgery is so far out of the box that I think it has the potential to open up new possibilities in the way you think..or perhaps it's just the after effects of the drugs. At 4 1/2 weeks post-op I'm starting to look forward to getting back into things at work (counsellor/psychologist), but glad I still have another two weeks to be dreamy. Fatigue still comes over me suddenly for no particular reason so it's nice just to be self indulgent for a while and forget about time.
Kelly

[jrnyc]

i felt really "dreamlike" with a fever of 104 degrees and septecemia,
but i wouldn't recommend it!
i never needed a vacation THAT badly!

jess

[progress]

Hi Jess

Hi Jess,
When did you have the surgery? And how are you now?
I'm still having my moments, just had a little cry because I'm sick of depending on my teenagers and feel I have to ask them politely all the time then wait for hours to have something done when they are ready. I'm also aware that I have had less levels fused than many have had on this forum (T9 to L3) which I think would definately make recovery easier. I also think I have a short memory of those first couple of weeks (survival skill). I still have a way to go, my right side is still quite numb, swollen and sore but I am feeling fairly positive that this will resolve. I think overall it has been easier than expected because I was expecting it to be hell on earth.
Kelly

[titaniumed]

Long term effects of modern hardware?

No, I do not have any studies in my folders. Basically, the hardware realigns and holds vertebrae together till you fuse. After you are fused, they don’t serve much of a purpose, other than preventing long term bone remodeling over decades of time.

There could be a remote possibility that you will need a revision way down the road, I’m assuming that your surgeon will leave a few levels un-fused down low for mobility. This just seems par for the course, fusing to the sacrum doesn’t happen often with younger folks....

The lowest levels actually have about 20 degrees of articulation for each level.

Hmmm....Watching DVD’s in Spain....I would watch “The Good, the Bad, and the Ugly” since it was filmed there. Its rated 4th best film ever on IMDB and a favorite of mine.
Many spaghetti westerns were filmed in Spain years ago.
Ed

[jrnyc]

hi Kelly
i have not had the surgery... yet...
though i started making plans in early 2007, medical issues as well as personal
things interfered, & i postponed the surgery with the surgeon in NYC who has been
following me for years...

at this point, needing fusion to the sacrum (w/pelvic fixation) is
one thing that has stopped me in my tracks....
i also have degenerative disc disease, listhesis, hypokyphosis,
spinal stenosis, and spinal arthritis.

i am so glad that you have had an excellent outcome, though i know you
are still healing...
i hope, once healed completely, that you can do every activity you ever
dreamed of doing....& that you will never need a revision....
i hope you will have the pain free life that you so deserve.

best regards...
jess

[Doreen1]

Hi Jess,
When did you have the surgery? And how are you now?
just had a little cry because I'm sick of depending on my teenagers and feel I have to ask them politely all the time then wait for hours to have something done when they are ready.
Kelly

Hi Kelly,
I have a funny little story for you. A while ago I had a mini break down because I don't want to be a burden to anyone and usually don't ask for a lot of help... until now. Waiting for surgery has been a very humbling experience for me by needing to ask for help frequently. My hubby and daughter said there is no need to feel bad about asking for help, they are happy to help. So we have a new routine every night since I started taking Forteo (daily injections to build bone density for those who need stronger bones for surgery). 9pm I get settled into bed and either hubby or daughter bring up the Forteo pen (which needs to be refrigerated) to me, I do my thing, and they bring it back downstairs and put back into frig. I've heard patients say they are able to avoid dizziness/nausea by doing the shot in bed at night.

Ok, that's the background for my story. Last night, I'm in bed, have my little needle and alcohol swabs ready, I'm in my jammies waiting patiently. I don't hear anyone coming. I wait a little longer, little longer... how could they forget? So I walk toward my daughter's study and hubby's office which happen to be upstairs, just down the hall. I'm standing in the hall, look to my left and see hubby, look to my right and see daughter. I quietly asked, "Can someone bring me Forteo? Anyone? Anyone?" My daughter busts out laughing, "Mom, you are too cute!" She ran downstairs and brought it up and has learned how to do everything in the preparation of the shot except the actual injection (I prefer to do that myself). It's really sweet that she wants to help with the injections. She does the swabbing of the Forteo pen tip and my injection site, attaches the needle, loads the medicine, removes needle caps (I inject and replace needle cap), then she removes capped needle and places in bio-hazard container.

I look forward to being "on the other side" so I can relate to you and others who are now recovering.

Warmly,
Doreen

[golfnut]

Bill,
Definitely, having a smooth recovery makes me want to be as active as allowed. I also have to
think that being in good physical condition prior to surgery and having a great surgeon attributed to a
smooth recovery. I realize that some people are in too much pain to exercise as much as I did before
surgery.

Kelly,
I know exactly what you meant. During my recovery, I didn't feel guilty watching movies and reading
tons of books. I had seldom taken a nap in the afternoon, but knew it was important for recovery and
enjoyed. However, I don't want that "vacation" ever again.

[JenniferG]

I have to say that overall, I enjoyed my recovery. (Minus 2 weeks withdrawals from Oxycontin.) I think not having a job to go back to, helped. I was free as a bird. I had all day to do simple little tasks, there was no rush. I didn't have to chase after anybody else. There were no expectations. It was the most peaceful, relaxed time of my adult life. I know not everyone has it so good, but once out of hospital, things went very smoothly for me, apart from the withdrawals, and I think the meds actually relaxed me. I had been an awful sleeper, but I was sleeping 11 - 12 hours a night then 2 - 3 hours during the day. That was heaven to me.

[Doreen1]

but I was sleeping 11 - 12 hours a night then 2 - 3 hours during the day. That was heaven to me.

Wow! That's sounds wonderful!

[BendyBill]

Ed, just seen that if you do a google study search for 'Cotrel Dubousset' it comes up with a couple of interesting studies. I remember being told by my surgeon that I'm being fused down to L3 but, I have type II scoliosis and thought the lumbar curve was flexible and often corrects itself after the main structural curve is 'fixed'?! Is this right? If so, why do you think my fusion is going so low? Also, with a fusion to L3, is there more of a chance of disk degeneration at L4/5?
My knowledge of spaghetti westerns is minimal so I feel I need to gen up on that during my recovery. I'll be an expert by the time I'm better!!

Karen, good to know. Quick question regarding the exercise thing for you and any others who might be able to help: I did a bit of sight-seeing in Spain yesterday and went for a lovely jaunt around the Alhambra in Granada (beautiful place and well worth a look if you are in the area!!). It was a very long day with a lot of rather incline-ridden stretches and I could feel my back getting tired towards the end of the day. I powered through without too much trouble but, today, my back is so tight and sore! It seems to be tightness in the (very prominent) muscle on the outside of the convex part of my lower compensatory curve. The same place that I get it every time I do exercise! Do lots of people have this? And, does anyone know of any good stretches for it?!!?

As for relaxing during recovery, I need to have a certain degree of work/productive activity. I used to be a bit of a layabout and don't want to get lulled back into that pitfall!!

One more quick question. What is coronal decompensation?

Thanks for all your help!!

B

Coronal decompensation?

[BendyBill]

Further to my questions in my previous post, I've been wondering if Scoliosis is making me tired?! I seem to be more tired than other people and sleeping more, too. Has anyone else experienced this? Do you think it's just me and how I am/a sleep problem or the tension in the muscles in my back working over time and wearing me out? Any ideas?

B

[Doreen1]

Hi Billy,

As my situation has worsened dramatically this year (lost 3" in height, ribs compressing into lungs so that it hurts when I breathe, etc.), I find that I am worn out every afternoon. My new daily routine is: upon waking, do PT exercises followed by yoga since I have the most energy in the morning, about 2p laydown in bed on heating pad - sometimes I fall asleep, up out of bed by 4p, make dinner, family walk through neighborhood then bed by 9p for Forteo injection. Quite exciting days I lead.

For me I think there are two major things at play causing my increased lack of energy.
#1 physical changes of progressing curves (muscles and bone contorting into places where they don't belong)
#2 mental exhaustion sorting out details of possibly doing out of state surgery since local surgeon canceled surgery

You're not alone.

Warmly,
Doreen