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titaniumed
01-29-2011, 10:13 AM
3 years ago today, was the day I had to go in and get things done....and boy, did I ever get things done!

I would never ever reverse my decision and nobody can tell Iím fused....

Dr Menmuir saved my life. No doubt. I still cant believe it. It totally changed my life.

Of course I have to add my skiing video in case any of you missed it!
http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=email
Ed

Pooka1
01-29-2011, 10:16 AM
Congratulations all over the place, Ti Ed!

Yours was a major overhaul and you had a great result.

The skiing is amazing and so are the photos of you twisting. Those go a long way to dispel fears about range of motion in long fusions I think.

mgs
01-29-2011, 11:08 AM
Happy Anniv!!!!!!

Great video! (Your cameraman had his work cut out for him!)

ShariMSU
01-29-2011, 11:36 AM
Congratulations! You are an inspiration every time I read your posts.

titaniumed
01-29-2011, 12:21 PM
Sharon
Thx

Yes, those range of motion pics help quite a bit... I hope people look at those, they are in my threads.

My surgeon really didnít want to do my surgeries and painted a grim picture. It was only after my blood work that he saw that I really was in great shape from all the skiing. After all the exploratory that my vascular surgeon did, my guts were raw! He also checked me out up high when he removed my gall bladder. I think that with all my metals and toxin exposure all these years, they wanted to look at things...they were looking for cancers. Hey, I passed the test! No problemo! I think that exercise and diet play a big part and being funky about toxins at the plant. I wont allow certain things to happen...Cutting Berylliumís, no leads, no solvents, things like that. I was warned by engineers at Lawrence Livermore about this many years ago.....

Iím funky about chemicals, toxins and medications. I wont use insecticides....I will use baby powder.

mgs
Yes, my cameraman was boarding that day, and he is pretty good. I hope that people realize that we are experts who do this stuff often. There are rules that we follow, and are pretty safe. There are people that die out here about 1 per month, there are searches that happen often. Backcountry skiing takes training.

Sonny Bono was skiing on painkillers, in flat light, at 4pm on the 3rd day after a storm with above freezing temps, alone. He broke many rules.
When the snow setís up, we stay out of the trees or far from trees. We also spot one another. If a person doesnít show up at the bottom, we will go back up the lift and ski the exact same line again. I donít ski alone anymore.
Ed

Pooka1
01-29-2011, 12:35 PM
Yes, those range of motion pics help quite a bit... I hope people look at those, they are in my threads.

I think they are important enough for you to consider putting them in your sig file. I think they have quelled fears about fusion to the pelvis. They are among the most counterintuitive photos on this forum in my opinion. That is, I never would have thought you could have that much ROM with a T2-pelvis fusion but of course I wasn't basing that opinion on anything real world.

Pooka1
01-29-2011, 12:36 PM
Sonny Bono was skiing on painkillers, in flat light, at 4pm on the 3rd day after a storm with above freezing temps, alone. He broke many rules.
When the snow setís up, we stay out of the trees or far from trees. We also spot one another. If a person doesnít show up at the bottom, we will go back up the lift and ski the exact same line again. I donít ski alone anymore.
Ed

Was Michael Kennedy breaking any rules (besides playing football that is)?

titaniumed
01-29-2011, 01:49 PM
Kennedyís breaking rules? No way.

I watch weather like a hawk because Iím a storm skier. Love that deep pow! Itís a terrible addiction with no cure.

We were following the Bono story closely since we are locals. When CR Johnson died at Squaw last year, the word spread quickly...There were many sad people out here.

Mountain goats sometimes fall off cliffís....
Ed

foofer
01-29-2011, 01:53 PM
Congratulations, Ed

You are a great help to us fledgeling headed-for-surgery types, and I thank you.

I know what you mean about the chemicals thing- I was always aware, but not diehard, and now I would rather live in harmony with the fruitflies enjoying my plants, rather than spray them. I might be also aging-eccentric, as well. Hmmm.

jeneemohler
01-29-2011, 02:09 PM
Ed, I agree about putting your ROM in your signature. It would be easy to miss them if it isn't a topic at that particular time. Those pics were instrumental in easing MY fears of fusion and pelvic fixation.
I can't believe all you do at 3 years post op. Amazing. You are indeed our beloved poster boy!!!

Doodles
01-29-2011, 02:22 PM
Happy Anniversary, Ed! The skiing video is great--hadn't seen it before. Seeing as how my skiing experience was very very limited before surgery, don't see it happening now. Looks fun except for all those trees that could jump out in front of me. Keep going strong with all those things you enjoy. That's fantastic! Janet

JenniferG
01-29-2011, 04:05 PM
Hearty congrats Ed! Your joy in your outcome is plain for all to see. Your result is nothing short of miraculous. Enjoy and make the most of every single day!

backissues
01-29-2011, 04:29 PM
Happy 3rd Anniversary!! Congratulations!!
You are an inspiration and a tremendous help to all who seek your advice. Thank you.
The skiing video was great! You are amazing. Glad you follow all the safety rules.
Wishing you a lifetime of good health and joy.
Best wishes,
Irene

Singer
01-29-2011, 07:02 PM
Ed, you are THE MAN. Congratulations and keep up the good work -- and be careful out there!!!

loves to skate
01-29-2011, 07:11 PM
How fast three years goes by. Congratulations and thanks for all your inspiration. You really know how to live.
Sally

golfnut
01-29-2011, 07:25 PM
Congratulations on 3 years. You are such an inspiration and give such good advice to all of us.

pilar
01-29-2011, 07:50 PM
ED,
you are my personal hero and truly an inspiration... I can't wait to feel better and not be aware of my back all the time.
Thanks so much for your words and constant support to all of us!!!
Pilar

Lilysaidwhat
01-29-2011, 09:22 PM
Ed, thank you and congratulations on a 3 yr anniversary! I hope I have similar success.

As my PT told me two days ago, "Even if it does bother you to wear your stilettos, you're stubborn enough to strap them on and go on anyway." Here's to my lifelong stubbornness finally paying off...

boopy1
01-30-2011, 02:34 AM
Ed,
Ther's nothing I can add but thankyou for your posts, you helped get me thru some really bad days
Donna

Lorz
01-30-2011, 07:43 AM
I totally agree with everyone's sentiments. I think it is amazing that you still take the time, 3 years post-op, to continue lending support/inspiration to those of us who need it. I think it is human nature, after going through such a traumatic life event, to want to put it behind you, and move on. I will be forever grateful, that you did not. I know that reading your posts, and looking at your pictures, really gave me the courage to go ahead and schedule my surgery. Of course, having done so, I am second guessing my decision daily. When I start doubting, I come to the forum, and read your, and everyone's posts, and remember why I am doing this. Thank you . When you fly down those powdery slopes, know that you are carrying many of us with you!:) Sincerely, Lori

mgs
01-30-2011, 10:50 AM
What Lorz said.

titaniumed
01-30-2011, 10:56 AM
Thanks everyone. After all the years of living with scoliosis, thinking I was the only one with bad curves, and not knowing any other people with scoliosis, makes me feel like I need to offer what I can offer. I always wondered when I was going to have my big day, scared to death, all I could do was forge on and continue with life.

I knew when the pedicle screw came out in 1983, that that was a great idea, and that was the method of attachment that would be used on me. It was 25 years after this introduction, that my day came. I walked the yellow brick road for all those years. I was fortunate to have completed that walk when I did, because the pain was completely out of control at the end.

I am amazed at how many of you out there have such large curves, and also how many of you that are around my age are out there. You were walking the yellow brick road with me, only I couldnít see you. For those just behind me, I hope your wizard will come through for you!

Todayís trivia. Did you know that Judy Garland was discovered at the Cal-Neva lodge on the north shore of Lake Tahoe? That happened in 1935, when she was 13, singing with the Gumm sisters, an MGM scout, convinced Louis Mayer to sign her without an audition. The Cal-Neva lodge was the first casino in the US, and was owned by Frank Sinatra at one point. The rat-pack, Kennedyís, and Marylyn Monroe hung out there often.

Time to hit the slopes.
Ed

Susie*Bee
01-30-2011, 04:57 PM
Hey Ed-- congrats on the anniversary! I was off celebrating with my kids-- hit the big 6-0. :) I guess I'll have to change my signature. Thanks for your friendship over the past few years. It's so good to keep getting stronger and better, isn't it?!

Nitram
01-30-2011, 09:47 PM
Hey Ed, congrats on the 3 year mark!! You have been an inspiration to all of us and for that I can't thank you enough!

Nitram

YogaNut
01-30-2011, 09:49 PM
Thanks for sharing your video and story. I have been told fusion is in my future....as an avid skier, I was concerned that the surgeon would take that away from me. After watching your video, I think....maybe not. I had lumbar spinal decompression surgery 4 months ago and spent MLK weekend skiing Park City. I skied very conservatively, but enjoyed every minute of it. Thanks for sharing!
Julie

jChris
01-31-2011, 10:57 AM
3 years! Wow, that's great Ed. Thanks so much for your continued support on the Forum. It means so much. I am another T2 to pelvis with 3 neck vertebrae fused. I am amazed at the flexibility that I have 3 months post op. I am not a skier, but it sure looks like fun! Maybe someday......

lray
01-31-2011, 12:26 PM
Happy anniversary Ed! Like others before me have already remarked, you are a true inspiration to us who have just had the surgery or are about to, especially at our age. Watching your video kind of makes me think that I may give skiing another try when I am able. I never got the ski bug because I really don't like the cold. I enjoy Tahoe in the summer months.

Have fun on the slopes!

titaniumed
01-31-2011, 07:51 PM
All right! We have Laurie and Chris willing to join the NSF ďdownhillĒ exhibition ski team. And with Chris being one of our longest, or most fused, Iím sure I could get us in skiing magazine....He he. We just have to group up, make some noise. lol

Actually, I must say that it was not easy for me and had issues I had to overcome with skiing. But then again, it was never easy for us anyway, whatís a little more work right? I just kept at it, and wouldnít give up. Karen, remember this when you start golfing.

Suzie Bee, Happy B-day. Yes, its easier as the days pass by.
Julie, I have pics here in my threads skiing at Park City. Here is that thread.
http://www.scoliosis.org/forum/showthread.php?8698-finally-some-skiing&highlight=

Pilar, You keep hanging in there. Never ever look back! always forward....you will get there.

Lily and Lori and those waiting... here is a thread to read
http://www.scoliosis.org/forum/showthread.php?10753-The-benefits-of-being-fused&highlight=

Sharon, You are right. But I need to start a website. It will happen soon...and will include all sorts of things. Can you imagine that? Iíve been thinking about this for awhile....

So hard to respond to everyone...
Ed

scuba steve
02-01-2011, 03:44 PM
Hey Ed, Scuba Steve here.
Man what a bad week. I mean i am really getting burnt out on this pain thing.
Not feeling any better and i have cut my work load down alot.
What is the word on the site about removing hardware??
i know i am opening a can of worms here.
Soooo sick of this pain, and breaking down mentally now.

mgs
02-01-2011, 05:08 PM
Scuba Steve, I know where you're coming from. But, this forum is THE place to be when you (we) need encouragement and hope. No matter how much family and friends love us, and do their best to support us, there is nothing like the cameraderie of fellow scoli surgery veterans.
Hardware removal? I'm not the best person to ask. :) Good luck!

kennedy
02-01-2011, 05:35 PM
happy annivery Ed your doing a great job

titaniumed
02-01-2011, 07:57 PM
Steve

Oh man!

Have you addressed this with your surgeon? This of course, is the first thing you should do. You should have had some healing and some improvement in the last 10 weeks.

If you are only 10 weeks, chances are that any surgeon would want to wait for more time to pass.... Pulling hardware out is something that you really need to think about long and hard. Bone remodels itself, and curves can return right back to where you started. Yes, you are opening a can of worms, let your surgeon make the call without any input. Let him make the decisions.

If you have built up an immunity to your meds, then a drug management specialist should be seen. Weaning takes effort and can be an unpleasant thing.....

I was hoping that you were doing better, so sorry about your pain.
Hang in there, things should improve.
Ed

jeneemohler
02-01-2011, 08:03 PM
A website? That would be freakin' awesome!!! You would have a built-in fan club, right out of the gate. Keep us posted.

Kikki
02-02-2011, 07:01 AM
Very impressive. Personally, I've been a little disappointed (if that's the right word even?) about the loss of flexibility in my back. But I think that perhaps I was hyper-elastic before surgery and therefore, the loss of flexibility is more obvious now?? I don't know... Your video was inspirational - the twisting, turning, manoeuvring.... And GREAT snowfields BTW.... Where can I get me some of those???

Susie*Bee
02-02-2011, 08:07 AM
Scuba Steve-- don't want to hijack Ed's thread, but he won't care... Ed is right (of course) in what he said. It is still really early for you. Some of us had long recoveries. Are you having outright unbearable PAIN, or is it unrelenting discomfort? Maybe I am odd, but to me there is a difference. I took pain meds for 5-6 months, and needed them. With the pain meds, it was more like unrelenting discomfort. My surgeon's nurse had said they want you to be able to function well enough to think straight and do things, but comfortable enough to get along ok. I figured that meant you couldn't have your cake and eat it too. If you were too doped up, you wouldn't have the pain, but you would be in la-la land, brain-wise. It's just a major reconstruction to the foundation of your body that you've had, and it's going to take time to recover. If you push it too hard, too fast, and your body isn't ready, it will rebel. I don't know why some people can do it sooner than others, but not everyone can.

My suggestion, for what it's worth, is to check with your surgeon and see what he thinks. A pain management doctor sounds like good advice. As far as taking out your hardware-- I don't think that would solve any problems at all and would destroy the whole purpose of what you've been through. This surgery is hard work. The recovery is even harder. It builds us into strong people. We scoli surgery people are SURVIVORS... with the scars to prove it. Inside, outside, physically, mentally, emotionally... And one thing many of have had no choice in learning is patience. Best wishes as you continue to recover. (I am home from my job at a school-- snow day in this blizzard!-- so I have a little time to be on the forum)

titaniumed
02-03-2011, 11:45 PM
Kiki

Loss of flexibility in our backs is something we have to live with. Maybe you were very flexible, but you know that when you age with scoliosis, things really get stiff....I did as much stretching as possible, and by the time I was in my mid 40s, it was pretty much a losing proposition from there on. Sometimes we donít have much choice in the matter, and you do the best with what you have. Things get easier as time passes, it always works out. Never look back, always forward.

Great snowfields? The closest for you in would be in Southern New Zealand..... Northern Japan is another hot spot. Utah, has the best snow on earth, I skied there quite a bit through the years...

Glad you enjoyed the video.

I have added the link to my rotational and bending flexibility pictures to my sig.
Ed

fierceliketiger
02-04-2011, 02:14 AM
Wow Ed! Congratulations on 3 years! I am so glad that you had such a fantastic outcome! I would love to learn to ski, but I'd imagine it will be a while for me. You are truly an inspiration, and you give me hope that I'll get back to that pain free place I had for exactly one week :)