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junosand
09-24-2011, 11:03 PM
Had my one yr checkup with Dr Lenke this week. Xrays were taken again and showed no change, i.e. everything still looking great and completely straight. Just wants to see me in another year.

I have continued to slowly improve since last posting 6 mos ago. I basically have no real pain, just sometimes some mild general back muscle soreness if i try to work more than 4 -5 hrs of physical work, even if it's very light work. Being fused to the sacrum, i have had to learn to get used to the loss of balance that occurs when you lean too far one way and can't compensate by bending the opposite. At first i had a couple falls, hitting the ground and wondering what the hell had just happened. Dr Lenke said this was normal and something i just had to learn to be careful about. I also have yet to regain my pre-back problem stamina. I work out with a personal trainer twice and week and just try to keep doing as much as i am able. All the weakness i had in my left quad muscles slowly returned.

So, basically i got an excellent result and should be thrilled but i have to remind myself how much better i am than before surgery. Day to day, however, i have to deal with the balance issue, reduced energy and the extra difficulty whenever trying to bend over (like putting on socks in the morning) and have to sadly accept my "new normal."

But it IS a great improvement and i'm very grateful to Dr Lenke whose expertise has gotten me as far as the current state of the art (which he has done much to develop) can at this point in time.

kennedy
09-24-2011, 11:50 PM
junosand that great

JenniferG
09-25-2011, 02:47 AM
Excellent news! Over the years, I've read many accounts here of people not regaining their former energy for 2 or more years. So I think you can expect further improvements yet.

I have a minor balance problem but so far haven't fallen, but the way you described it was exactly how I would also describe it. I think this too, will improve with time.

Overall, a very good report!

golfnut
09-25-2011, 08:08 AM
Junosand,
I'm so glad to hear from you. I was thinking the other day that you would be a year post-op in Oct. and wondered how you are doing at this point. I haven't noticed any balance problems yet but haven't tried to bend much. I still use a suction cup on the end of my putter to get the golf ball out of the hole. Congratulations on a good report. I feel fortunate to have had Dr. Lenke as my surgeon.

naptown78
09-25-2011, 08:54 AM
Good work Junosand!
Your results sound similar to mine, in that my balance is a little off. I can't count the number of walls I've run
into! Small price to pay for how I felt pre-surgery. I am 1 1/2 years out from my revision and have noticed
improvement still, even after one year. I expect you will too. So glad you have had a successful result ;-)

RitaR
09-25-2011, 11:37 AM
I too am little over one year postop and fully understand your balance issues. Good grief - thought someone was tilting the world when I wasn't looking. It truly is wild! But something I have come to deal with. I am one year postop last March 1st. My energy level is very good. Although I still know when I push it too much - I pay for it th enext day. Geesh.

Mojo's Mom
09-25-2011, 12:57 PM
junosand, GREAT to hear from you. I read your posts often last year. The balance issue is one I had never even thought of, yikes. I want to hear from Titanium Ed on this, because he skis. He must have worked this out somehow.

golfnut
09-25-2011, 01:06 PM
I am almost 9 months post op and haven't noticed any balance problems in my tap dancing class that I
returned to a couple of months ago or at any other time. I am going to try a Tai Chi class tomorrow which may be a different story.

Susie*Bee
09-25-2011, 07:32 PM
Juno- I just spent about 15 minutes replying to you and then lost it all. Aughhhh! Briefly, you sound just like I felt at one year post-op. I thought I was done and I had accepted my limitations and was ready to move on with my life. Fair enough. And just as I thought back then, that may be. But what astonished me was that as each anniversary passed by (my surgery was over 4 years ago) I have increased strength and abilities. My surgery left me very weak and I really had to work my way back. I read on the forum with amazement so many times of people who are back to doing "normal" things in just a few months and can hardly believe it. I've said it before and will undoubtedly say it again-- some of us are turtles in recovery... so don't think you are "all done" quite yet. Time may surprise you.

Also, I can really relate to your inability to correct when you lose your balance. I have that problem even though I'm not fused to the sacrum. I still have 15 levels fused and I think it's just the length of non-flexibility. Sometimes at school I'll start to lose it and have to say "oops!" as I totter, and explain to the kids how their backs work to help them regain their balance and mine doesn't compensate that same way...

I'm super impressed if you put your socks on the old-fashioned way! I am fused from T2-L4 and use a sock-aid. It's second nature to me and so easy. My legs are just too long and I've got arthritis in my hips and knees to boot. You might try one if putting on socks are a pain. Once you get the hang of a sock-aid, it's a piece of cake.

It's been great to hear from you-- keep in touch and let us know how you're doing. Take care!

lray
09-26-2011, 01:47 PM
You sound great Junosand. Thanks for updating us on your recovery especially by commenting on your balance problem. I've been having this too, as others here have commented, and thank goodness it's not just me! I keep thinking that people must think I'm drunk because I have a hard time walking a straight line at times, especially if I am holding something and can't use my arms while walking for balance.

CHRIS WBS
09-26-2011, 02:56 PM
I am fused from T4 to sacrum and I no longer use a sock aid. Because of my long fusion, I cannot lean forward as I did before to pull up socks but cross one leg over the other and pull my foot up as far as I can and have no problem getting socks on that way. Pantyhose is another story. I will never wear them again. Theyíre no longer fashionable anyway. But I do like wearing colored opaque hose during the fall and winter and it does take a little extra time to get those on. The balance issue unfortunately I feel is permanent. While Iíve never fallen or even come close to falling since my surgery in June í08, I use extra caution when walking on uneven surfaces such as grass or brick pavements. And Iíve accepted the fact that five-inch wedge sandals are not for me. Bending is no longer a problem, and itís become second nature. I feel Iím as good as Iím going to get and Iím as pleased as Punch.

loves to skate
09-26-2011, 04:16 PM
Junosand,
I really think that the older we are when we have this surgery, the longer it takes to get our stamina back. For me, it took at least 2 1/2 years and at age 71 now, I have to keep reminding myself that now it is my age, not my surgery that I am fighting to keep the stamina that I have. Hang in there, it sounds like you are doing great. Good to hear from you.
Sally

loves to skate
09-26-2011, 04:19 PM
BTW, as far as balance goes, I started back to roller skating at 10 months post-op and it was scary at first, but my balance returned in no time. I just had to remind myself to stay off wet leaves on a slippery slope. Haha!

junosand
09-27-2011, 02:57 PM
thanks you ALL for taking the time to reply to my post; the encouragement and support means a lot to me; this is really a terrific forum of very intelligent and thoughtful people coming together to help each other

your replies provide the salve of empathy for my difficulties and hope that further improvement is still possible;
i'm especially encouraged about trying winter sports again; i seriously doubt i will be able to snowboard but maybe i can still ski; i will, at least, give it a try; prior to reading your posts, i was having serious reservations about ever going to the mountains again

i do have to ask Karen: how is golfing? i don't golf so i may not understand the mechanics but it looks like it involves a lot of twisting; it seems you could easily swing, the momentum pulling you too far and down you go (on soft turf, at least) or am i wrong? have you played a full round and kept score to compare pre with post?

from my heart, thanks again everyone

golfnut
09-27-2011, 03:30 PM
Junosand,
You are right that the golf swing involves twisting. I have only been allowed to chip and putt and will hopefully get the okay for a full swing on my Jan. 18th appointment. I know that LisaB, Shari, & Rich from the forum have returned to golf following surgery. I am sure that I will have to swing a little easier and maybe turn the hips and shoulders more in one piece. Balance may be an issue as well. I am expecting my handicap to go up the first season, but after that, no excuses. I may have to become a better putter!
Best of luck in your continued recovery!

Confusedmom
09-29-2011, 09:02 PM
Juno,

Glad to hear from you! Can't believe it's been a year (I know, it probably seems a lot longer to you!). You said that the weakness in your leg muscle gradually returned. You mean strength, right???! I'm hoping you're doing better in that regard!

As always, I appreciate your insight and candor. Glad to hear you are recovering well!

Evelyn

junosand
09-30-2011, 08:11 PM
yes, sorry, i did meant the strength returned; i can do stairs without thinking even of needing an assist from railing and, when working out, i can do as many squats or lunges as i could pre-op

Doreen1
09-30-2011, 09:03 PM
yes, sorry, i did meant the strength returned; i can do stairs without thinking even of needing an assist from railing and, when working out, i can do as many squats or lunges as i could pre-op

You're able to do squats/lunges fused to sacrum?! I'm SO impressed and happy to hear that.

Warmly,
Doreen

titaniumed
09-30-2011, 11:00 PM
Hi Juno

Better a late post than never, Iíve been on the road travelling in my RV.

Since I started skiing 50 years ago, I guess you might say that I have ďcatsĒ balance. If you lean in any direction, you have to counter with a leg or arm or both and its second nature to me. I have always suggested ski poles for recovering patients, they act as counter balances on both sides of the body. With more practice this second nature balance issue should resolve itself. I would use ski poles and walk a line, and get used to throwing your weight off in different directions using the poles. I used to practice this as a young skier running on curbs. Ski poles act as counterweights in skiing. Snowboard, and you lose this advantage.

I felt my recovery was at 90% at 12 months post. The second year I battled the fatigue,(many afternoon naps), and the final 10% of healing. At age 51 and 2 years out, I was pretty much done with my recovery.

The challenges of a scoliosis recovery need to be accepted up front by every patient. Instead of training for a sport, we need to train mentally for what will happen in our recoveries. Itís a slow process that shouldnít be rushed. At 1 year, you can push a little harder and test things....I had permission to lift 100# at 1 year. It sounds like you are doing well. Congratulations.

How were the Galapago islands?
Ed

mabeckoff
10-01-2011, 10:39 AM
Hi Juno



I felt my recovery was at 90% at 12 months post. The second year I battled the fatigue,(many afternoon naps), and the final 10% of healing. At age 51 and 2 years out, I was pretty much done with my recovery.

Ed

Ed, That you were still napping into the second year makes me happy as I am still so tired 3 months out

Melissa

titaniumed
10-01-2011, 11:41 AM
Melissa

These surgeries can really knock your socks off and can take a long, long time to heal. You are just in the very beginning, and should take it easy for now. Naps are signals for more needed sleep but in the long run, you need to get that 9 hours each night.

Weaning slowly off meds is part of recovery. It should be a goal. Eating a proper diet, and maintaining your digestive health are also critical. Eat good things!

Even though you will nap, you still need to be taking short walks often. My surgeon gave me a warning about sleeping all the time. He had all the girls coming out to my house every day making sure of that! I miss those days...

With such a slow recovery, learn to accept small amounts of improvement. If you have had that bad day, remember that we see-saw, and that our goals will eventually be reached in time. Recovery teaches patience.

Ed

debbei
10-01-2011, 12:50 PM
Great news! Remember you will continue to improve, possibly for a few more years.

mabeckoff
10-01-2011, 01:39 PM
Melissa

These surgeries can really knock your socks off and can take a long, long time to heal. You are just in the very beginning, and should take it easy for now. Naps are signals for more needed sleep but in the long run, you need to get that 9 hours each night.

Weaning slowly off meds is part of recovery. It should be a goal. Eating a proper diet, and maintaining your digestive health are also critical. Eat good things!

Even though you will nap, you still need to be taking short walks often. My surgeon gave me a warning about sleeping all the time. He had all the girls coming out to my house every day making sure of that! I miss those days...

With such a slow recovery, learn to accept small amounts of improvement. If you have had that bad day, remember that we see-saw, and that our goals will eventually be reached in time. Recovery teaches patience.

Ed

Thanks Ed. I do not know what I should be doing regarding my meds. Dr Bederman does not feel that I need to worry about weaning at this time, esp as I am
starting PT next week

junosand
10-01-2011, 09:56 PM
thanks ed,

i started skiing in high school and have always (as i was taught originally) to keep my arms forward and "mark" my turns with the poles; i'm not sure to what extent i used to use my arms for balance but i'll keep that in mind this winter when i try to get back into it

the galapagos were great, the naturalist/guides superb; quite a special spot on earth; i was apprehensive about it since it involved a lot of hiking, sometimes climbing steep grades climbing the inactive volcanoes; this was at about 8 mos postop; turned out i didn't have much trouble with the hiking but i got easily short of breath when snorkeling and had to go extremely slow - not sure why

Mojo's Mom
10-01-2011, 10:47 PM
It's funny, after reading about this balance thing and worrying how I would adapt, I realized a couple of days later that I should already have the muscle memory for compensating since I spent several years of my childhood in a Milwaukee brace 24 hours a day. In that brace I played tennis, ice skated, ran and hiked and played at the beach and did basically everything a child would normally do, with a few exceptions (ballet class was out).

So I'm guessing that when I find myself in my new, fused to the sacrum body, the old muscle memory will know what to do, if not right away then pretty quickly. In fact, I have a feeling that during the last 36 flexible years I've enjoyed, I still use a lot of the body mechanics that I developed while braced. I think the braced years probably helped my hips stay very loose, to the point that I can do just a couple of inches short of a full split. Maybe the balance won't be that strange.

jrnyc
10-02-2011, 08:05 AM
Mojo's mom...have you not had the surgery yet?...your signature says April 2011
for surgery...?

jess

Elisa
10-02-2011, 11:18 AM
Jess, I think her signature is supposed to say April, 2012.

titaniumed
10-02-2011, 11:30 PM
thanks ed,

i started skiing in high school and have always (as i was taught originally) to keep my arms forward and "mark" my turns with the poles; i'm not sure to what extent i used to use my arms for balance but i'll keep that in mind this winter when i try to get back into it



Arms out and forward, AND leaning forward are good general skiing habits especially on hard surface skiing. You were taught well. You use your arms more than you think, it should come automatically.

It took me years to master deep powder skiing which involves sitting back or shifting your weight back and balancing. I grew up on the east coast skating around on the ice and dodging rocks. Upon moving west years ago, and loving deep powder, learning was a necessity....a much different style of skiing. Let me know when you are ready....

titaniumed
10-02-2011, 11:32 PM
thanks ed,

the galapagos were great, the naturalist/guides superb; quite a special spot on earth; i was apprehensive about it since it involved a lot of hiking, sometimes climbing steep grades climbing the inactive volcanoes; this was at about 8 mos postop; turned out i didn't have much trouble with the hiking but i got easily short of breath when snorkeling and had to go extremely slow - not sure why

I would LOVE to dive the Galapagos Islands. It sounds like it was a great trip! I donít know why you would have been out of breath snorkeling unless you were battling currents, or dealing with cold water, which they have down there. I started diving about 15 years ago for my back, it seemed logical and of course I was ďhookedĒ after my first drift dives. In the last few years leading up to my scoli surgeries, I had many painful dives and realized that the damage in my lower spine could only be resolved by surgery. The writing was on the wall.

Ed

titaniumed
10-02-2011, 11:44 PM
Thanks Ed. I do not know what I should be doing regarding my meds. Dr Bederman does not feel that I need to worry about weaning at this time, esp as I am
starting PT next week

Talk to your surgeon about weaning off. Yes, you are early but its ok to keep it a goal.

I had such a hard time with my meds with constipation and immunity that it really wasnít working for me. The pain after 6 weeks was not being controlled taking huge amounts, and hot 107 degree tubs were the only way for me to deal with the bone and nerve pain from my partial corpectomies. The water therapy for you will be highly beneficial. Itís a great method of relaxation.
Ed

titaniumed
10-03-2011, 12:41 AM
So I'm guessing that when I find myself in my new, fused to the sacrum body, the old muscle memory will know what to do, if not right away then pretty quickly. In fact, I have a feeling that during the last 36 flexible years I've enjoyed, I still use a lot of the body mechanics that I developed while braced. I think the braced years probably helped my hips stay very loose, to the point that I can do just a couple of inches short of a full split. Maybe the balance won't be that strange.

Balance immediately after surgery can feel strange...especially after having everything altered....I donít think that old muscle memory plays a major part in the beginning, its mainly dealing with the pain and soreness of having soft tissues injured from surgery.

The slow process of recovery has many stages. In the beginning, your standing after a major trauma, all the nerves, muscles, tendons, etc have to heal and function under certain amounts of loads. As time goes by, healing happens and you realize that pains change, hopefully reduce, and these soft tissues can handle just a tad more load. The adjustments happen at different rates, and in different areas. Muscle length changes can also have quite an effect. I learn this from Kevin.

Recovery for me took 2 years. At 1 year, I was still improving and testing new areas. One of the things that is delicate is coming home from the hospital. This is due to this movement. At 1 year out, I had a friend who wanted me to go for a ride in his jeep off road. After 30 minutes of rocking back and forth, testing and using these new soft tissues, I was sore for days. About 2 months later, I could handle 2 hours in his jeep and so on. I went extreme rock crawling for 9 hours yesterday and have no issues whatsoever.

Balance does improve at a slow rate. I have no balance issues at all and can walk on a tightrope.

These pics will show exactly how extreme the motions can be, a true test for the post scoli spine. The Fordyce trail is the roughest rock crawling trail in California.
Ed

mabeckoff
10-03-2011, 12:11 PM
Talk to your surgeon about weaning off. Yes, you are early but its ok to keep it a goal.

I had such a hard time with my meds with constipation and immunity that it really wasnít working for me. The pain after 6 weeks was not being controlled taking huge amounts, and hot 107 degree tubs were the only way for me to deal with the bone and nerve pain from my partial corpectomies. The water therapy for you will be highly beneficial. Itís a great method of relaxation.
Ed


The water therapy will be great while I am doing it. What I am afraid of is afterwards , when I am out of the water. That is why I do not want to start weaning
from my meds until I see how this water therapy goes

JenniferG
10-03-2011, 05:05 PM
Good thinking Melissa, especially since you're already in a lot of pain.