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  #76  
Old 3rd September 2014, 10:19 PM
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Default Re: Introduction- Surgery in 3 days

This is fab to see and hear Hayley! Hope you continue to make such fantastic progress
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Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
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  #77  
Old 3rd September 2014, 10:52 PM
Mrs. Krier Mrs. Krier is offline
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Default Re: Introduction- Surgery in 3 days

Hayley,
You look absolutely amazing!! I bought a swim suit at the Dillards annual swim sale but ONLY because it was 75% OFF!!! I am not sure I'll ever be in one again, just feel odd in my new body. 5 weeks out as off yesterday. But it makes me so very happy to hear how amazingly well you are doing!!! When do you go back? Just trying to figure out how these check ups are spaced out.
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  #78  
Old 4th September 2014, 10:36 AM
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Default Re: Introduction- Surgery in 3 days

What a fantastically reassuring post, thanks Hayley I'm so pleased to hear how well you're doing
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  #79  
Old 5th September 2014, 03:24 AM
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Default Re: Introduction- Surgery in 3 days

Hayley

Usually I respond with “Nice Rack!” Only because I can get away with it since I’ve got one of my own.....He he

Its so hard to post any comedy with the passing of Joan Rivers, but she would have agreed with me......

So glad your ok....

You made it! Congratulations!

Ed
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  #80  
Old 5th September 2014, 04:20 AM
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Default Re: Introduction- Surgery in 3 days

Aw thanks Indie, Jay, Mrs Krier, Gilly & Ed! It's nice to drop in with the odd progress report, even if nothing major has happened I can't express enough how comforting it is to have met you guys before and immediately after the op. It's almost hard to think back to those pre-op days- I don't think I've ever been so frightened. I think I would have felt much more alone and afraid without hearing all your experiences and words of encouragement. Offline everyone has stopped asking about it, and we've all moved on, but I still feel like I've "seen things," kind of like a war vet. *shakily lights cigarette*


Quote:
Hayley

Usually I respond with “Nice Rack!” Only because I can get away with it since I’ve got one of my own.....He he

Its so hard to post any comedy with the passing of Joan Rivers, but she would have agreed with me......

So glad your ok....

You made it! Congratulations!

Ed
Haha- Ditto Ed! Though your rack is far larger and more impressive than mine. I call it my spine bling.

That sure was a shock! She was an icon. Seems like we've lost quite a few lately.

We all made it! High fives all around! Chest bump! Ouch….

Quote:
Hayley,
You look absolutely amazing!! I bought a swim suit at the Dillards annual swim sale but ONLY because it was 75% OFF!!! I am not sure I'll ever be in one again, just feel odd in my new body. 5 weeks out as off yesterday. But it makes me so very happy to hear how amazingly well you are doing!!! When do you go back? Just trying to figure out how these check ups are spaced out.
3 months from now actually! Then 6 months after that, then I think once a year for five years.

Haha- don't give up swimming! It's great for you. I haven't been swimming yet (I'm probably missing my chance for this year), but I think it would be a good thing to take up for some extra back strength.
Yeah the body does definitely feel odd at first- your muscles don't know what to do in their new position! If you're anything like me- it starts to really even out once everything loosens up. How are you feeling at 5 weeks?
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  #81  
Old 5th September 2014, 05:59 AM
Mrs. Krier Mrs. Krier is offline
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Default Re: Introduction- Surgery in 3 days

Hayley,
I feel pretty good, It's funny my family is so impressed with how I am doing and they constantly say " oh my 5 weeks already" and I feel like it's been foooooreeeevvvver! "In the voice of the boy from Sandlot" haha!
I usually walk a mile in the evening, I shower myself and i don't really need much help doing anything, of course still no BLT'S! !
I did attempt an all over highlight on my mother and I was so pooped afterwards! The bone stimulator makes me sooooo sore! You said you wore one 30 minutes a day? I wear mine 4 hours a day and it's annoying, more inconvenient then anything! And I still wear a funky brace but sometimes it actually feels good , nice and snug with lots of support!
I haven't swam either since surgery but the swim suit was 120$ and I got it for 21$!!!!!! Had to get it! All and all I think I am doing okay for 5 weeks, I even climbed up in my truck and drove for a bit. I am still swollen in areas especially where my rib hump was, up high on the right side but I think that's normal.
So glad to hear how great your doing, never gets old hearing from you! !!!
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  #82  
Old 6th September 2014, 04:52 PM
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Default Re: Introduction- Surgery in 3 days

Quote:
Originally Posted by Mrs. Krier View Post
Hayley,
I feel pretty good, It's funny my family is so impressed with how I am doing and they constantly say " oh my 5 weeks already" and I feel like it's been foooooreeeevvvver! "In the voice of the boy from Sandlot" haha!
I usually walk a mile in the evening, I shower myself and i don't really need much help doing anything, of course still no BLT'S! !
I did attempt an all over highlight on my mother and I was so pooped afterwards! The bone stimulator makes me sooooo sore! You said you wore one 30 minutes a day? I wear mine 4 hours a day and it's annoying, more inconvenient then anything! And I still wear a funky brace but sometimes it actually feels good , nice and snug with lots of support!
I haven't swam either since surgery but the swim suit was 120$ and I got it for 21$!!!!!! Had to get it! All and all I think I am doing okay for 5 weeks, I even climbed up in my truck and drove for a bit. I am still swollen in areas especially where my rib hump was, up high on the right side but I think that's normal.
So glad to hear how great your doing, never gets old hearing from you! !!!
Your doctor *may* take off restrictions at around a month- mine did. Then in physio they had me bending quite a lot. It's a little alarming at first, you think you're going to bend the hardware, but it's tough stuff that apparently stands up to most activities.

I'm sorry you're having trouble with the bone stimulator! What causes the soreness- is it just the bulkiness? Mine is a "Spinalogic"- it's a circular thing, pretty light. I guess different types work for different durations. 4 hours seems like a drag though- how long do you have to keep it up?

That is a fab deal- I had a similar experience at Dillards with a bridesmaid's dress for my sister's wedding- it was 200 bucks when I first saw it- then it was on clearance for 60! The swelling will go down, so will the numbness. I still can't feel much in the upper portion of my back, but the numb area is definitely shrinking. Sounds like you're doing everything possible to make a flawless recovery- a mile a day is fantastic. How are your pain levels?
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  #83  
Old 6th September 2014, 06:24 PM
Mrs. Krier Mrs. Krier is offline
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Default Re: Introduction- Surgery in 3 days

Hayley,
My bone stimulator is an Orthifix, something like that. It's 2 squares that go around you and buckle, it's light weight and I wear it twice a day for 2 hour increments. I think I hurt after just because of the electromagnetic stuff going on...lol I laugh because I don't actually understand any of it thats just what they told and said it was normal.
Pain wise I am doing really well, the occasional tramadol does the trick. However I did attempt an all over highlight which left me with a burning sensation down the right side of my back and that night a took percocet. Think I just really over did it.
I attempted PT one day and I absolutely knew it wasn't right! I was 3 weeks out and she asked me to try touching my toes and being backwards. My surgeon said not to return. I have a list of stretches and I walk. I think the therapist was curious more then anything she just asked a ton of questions, none of which pertained to my PT. I go back the 22nd and I will be 6 weeks this Tuesday. I feel like I walk so oddly but my husband says it's fine.
Ok....total TMI, but......the change in my boobs is great, I imagine you were probably uneven as well? Sorry....don't blush! Lol! I didn't even notice it was my mom and husband "and my 3 year old and 7 year old and the damn dog" that were helping me get into the shower and mother blurts it out! There is zero privacy in my house! But I noticed in the swim suit I am much more level now! Total perk! "Mid air chest bumb.....oh no way"!!! Fist bumb instead! Haha!
I can't imagine bending!!!!!!!! But my entire lumbar is fused and I had two discs replaced so that may be awhile!
Hayley is great visiting with you as usual! Have a great Saturday! !!!!!
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  #84  
Old 8th September 2014, 02:20 AM
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HayleyM HayleyM is offline
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Default Re: Introduction- Surgery in 3 days

Quote:
Originally Posted by Mrs. Krier View Post
Hayley,
My bone stimulator is an Orthifix, something like that. It's 2 squares that go around you and buckle, it's light weight and I wear it twice a day for 2 hour increments. I think I hurt after just because of the electromagnetic stuff going on...lol I laugh because I don't actually understand any of it thats just what they told and said it was normal.
Pain wise I am doing really well, the occasional tramadol does the trick. However I did attempt an all over highlight which left me with a burning sensation down the right side of my back and that night a took percocet. Think I just really over did it.
I attempted PT one day and I absolutely knew it wasn't right! I was 3 weeks out and she asked me to try touching my toes and being backwards. My surgeon said not to return. I have a list of stretches and I walk. I think the therapist was curious more then anything she just asked a ton of questions, none of which pertained to my PT. I go back the 22nd and I will be 6 weeks this Tuesday. I feel like I walk so oddly but my husband says it's fine.
Ok....total TMI, but......the change in my boobs is great, I imagine you were probably uneven as well? Sorry....don't blush! Lol! I didn't even notice it was my mom and husband "and my 3 year old and 7 year old and the damn dog" that were helping me get into the shower and mother blurts it out! There is zero privacy in my house! But I noticed in the swim suit I am much more level now! Total perk! "Mid air chest bumb.....oh no way"!!! Fist bumb instead! Haha!
I can't imagine bending!!!!!!!! But my entire lumbar is fused and I had two discs replaced so that may be awhile!
Hayley is great visiting with you as usual! Have a great Saturday! !!!!!
Yeah being told to touch your toes and bend backwards at 3 weeks is a bit much! Ouch! Was it someone recommended by the hospital? I felt confident with mine because she was directly recommended by the doctor and had trained other patients of his.
If you get another PT you can also ask about therapeutic massage- it can break up some of the scar tissue and really loosens you up. Some people find it really uncomfortable, but I absolutely loved it- it felt really good to have the scar and skin surrounding it scrunched and stretched around after being immobile for so long.

Wow- 6 weeks already! Don't you feel accomplished? Life to me seems so peaceful post-op, nothing to dread on the horizon (knock on wood).

The gait does feel a little robotic for awhile- a lot of it has to do with being so cautious/ having stiff muscles.

Haha- I don't think TMI applies here! Everyone's in the same boat- it's why support forums are so great To be honest my chest was lopsided immediately post-op (they weren't before- which is probably why the operation skewed them), and I was mildly annoyed by it. I figured they would realign themselves somewhat in the following weeks- and what do you know, they've completely evened out! Everything seems to shift around on the surface into a more symmetrical state as the muscles adjust to their new positions.

You should get some use out of that swimsuit while the nice weather lasts! (Says the person who hasn't bothered, even 3 months out XD) When are the swimming restrictions off? I haven't even checked.
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  #85  
Old 8th September 2014, 06:03 AM
Mrs. Krier Mrs. Krier is offline
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Default Re: Introduction- Surgery in 3 days

Hayley,
Are there swimming restrictions? I thought they wanted us too swim?? I don't know, I haven't done anything but walk.
The PT is in the town I live in which is 80 miles from my surgeon! One of the first things the therapist said was "wow where did you have this done at, in 13 years I've never seen something like this" Alarms were going off!!!!
Yes the awful thought of progression is gone I just worry about extension now as I chose not to go to L5S1. Fingers crossed!!!
I am glad things continue to get better because the whole "tin man needing oil feel" really sucks.
Your fused to L1? I am L5 and I do everything by myself but I struggle to put tights on and some socks, like my geeky tall tube socks! Lol! When does that get better? Also.....sitting Indian style on the floor? I can cross my legs but I fall straight backwards?! So frustrating! I know...slow down.
Have a great Monday lady, stay in touch! Really enjoy chatting with you, makes me feel normal and hopeful. I did tell you I had an appointment in Plano didn't i? I canceled after meeting my surgeon. I can't remember the ladies name.....Treva? Maybe? She was awesome!
Take care!
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