A Couple of Questions

[Guest guest]

This is what I like about this place! Everyone feels free to speak

honestly and tell it like it is!!!! Theresa

> Theresa.....I do too. But you know where I have the biggest problem

with

> it? On a toilet seat! It's so strange - but I actually have to

position

> myself justtttt right, otherwise that hard seat about feels like its

going to

> drive that rod end right through my skin!

> ~~

[Guest guest]

> > > These questions are to anyone: #1 - Does anyone get pain right

at

> > the

> > > top of the leg on the sides when you walk? What have you done

for

> > it

> > or

> > > what helps? Does it slowly go away? I just got back from a mile

> > walk

> > > and that is where I have the most problems. #2 - I guess this

one

> > would

> > > be for folks that are fused to the sacrum or very low - When

you

> > sit,

> > > does it feel like you can feel the end of the rod? In some

chairs

> > it

> > > feels like the end of the rod is poking into me. Any answers

would

> > be

> > > helpful. Theresa

[Guest guest]

Hi Dianne...

I haven't seen anything in the literature about burring off the heads

of the bolts, so that could actually be a new technique developed by

Dr. Berven.

--

> Hi ,

>

> Yes I do have the illiac bolts. At my last appt. with Rand about

> 3 weeks ago I did ask him about the possibility of needing them

> removed it things worsen. He prefers not to remove any hardware

> because he thinks the added support is important, especially with a

> long continuous fusion into the pelvis.

> I didn't think to ask him about the upper part of the bolts being

> shaved down, thank you for mentioning that. Right now I don't mind

> waiting a while longer as some people seem to take a good year and a

> half to two years to really see optimum benefits from this surgery.

> And thank god, I'm now getting really good results with the pain

> meds since turning that over to my regular doc. But I'll definately

> ask him about the bolt heads if this continues much longer.

>

> Thanks for your suggestion. All my best, Dianne

[Guest guest]

Theresa,

My main complaint post revision was the pain in the area just where

the leg joins the torso...hip flexor area.

My theory is that when they have you on the table establishing

lordosis they have to stretch that area out...and of course depending

on how long you have been in flatback it might cause the muscles and

tendons to be traumatized as they are suddenly stretched.

It took awhile but I would say around the 5 month mark I realized it

was almost gone. Can't advise you on the other stuff...I can't feel

any hardware.

Needless to say the above is just my guess...if the area is bothering

you more than seems reasonable, you chould consult your surgeon.

Take care, Cam

[Guest guest]

Hi Theresa,

I am always pretty sore (just over 3 months post op) at what I could

describe, as you do, the top of the leg on the sides. I think it is

muscular because I find ice helps me. I am fused to the sacrum but

don't have iliac bolts. I am fairly small in stature but have never

felt as if any hardware was protruding.

BTW thanks for sharing your story.

> These questions are to anyone: #1 - Does anyone get pain right at the

> top of the leg on the sides when you walk? What have you done for it

or

> what helps? Does it slowly go away? I just got back from a mile walk

> and that is where I have the most problems. #2 - I guess this one

would

> be for folks that are fused to the sacrum or very low - When you sit,

> does it feel like you can feel the end of the rod? In some chairs it

> feels like the end of the rod is poking into me. Any answers would be

> helpful. Theresa

[Guest guest]

That's kinda what the doctor said as well. I wanted to hear it from

someone who had gone through it. It always seems like I can tolerate

things better when I have heard of someone having the same thing and

it has gotten somewhat better over time. I am a Virgo and want

things done right the first time and done right away. I am not real

crazy over these long recovery times but I am getting better at it.

Theresa

> Theresa,

>

> My main complaint post revision was the pain in the area just

where

> the leg joins the torso...hip flexor area.

>

> My theory is that when they have you on the table establishing

> lordosis they have to stretch that area out...and of course

depending

> on how long you have been in flatback it might cause the muscles

and

> tendons to be traumatized as they are suddenly stretched.

>

> It took awhile but I would say around the 5 month mark I realized

it

> was almost gone. Can't advise you on the other stuff...I can't

feel

> any hardware.

>

> Needless to say the above is just my guess...if the area is

bothering

> you more than seems reasonable, you chould consult your surgeon.

>

> Take care, Cam

[Guest guest]

Dianne, You really are describing similar symptons to what I am

feeling and we are similar in size. Rand has suggested the same

things to me, but Dianne, I don't have the iliac bolts. Also, this

numbness is new for me. I didn't have that after the fusion to the

sacrum last June. I had other problems, but not my legs constantly

falling asleep. Curious...huh? I would be interested to hear how

your internist has changed your pain management. Best, Ann

> > These questions are to anyone: #1 - Does anyone get pain right at

> the

> > top of the leg on the sides when you walk? What have you done for

> it

> or

> > what helps? Does it slowly go away? I just got back from a mile

> walk

> > and that is where I have the most problems. #2 - I guess this one

> would

> > be for folks that are fused to the sacrum or very low - When you

> sit,

> > does it feel like you can feel the end of the rod? In some chairs

> it

> > feels like the end of the rod is poking into me. Any answers

would

> be

> > helpful. Theresa

[Guest guest]

Hi Ann, I don't have the bolts either. It's reassuring to hear of

other people experiencing the same feelings. Seems like you can deal

with anything when you know you are not alone. By the way, I love

your artwork!!! I think it speaks alot about scoliosis and how we

feel about ourself. It seems like we are in our own little world

looking out at all the other people that don't have scoliosis and

wondering what in the world are they complaining about. I guess that

is true for any problem though. Would like to see more. Theresa

> > These questions are to anyone: #1 - Does anyone get pain right

at the

> > top of the leg on the sides when you walk? What have you done

for it

> or

> > what helps? Does it slowly go away? I just got back from a mile

walk

> > and that is where I have the most problems. #2 - I guess this

one

> would

> > be for folks that are fused to the sacrum or very low - When you

sit,

> > does it feel like you can feel the end of the rod? In some

chairs it

> > feels like the end of the rod is poking into me. Any answers

would be

> > helpful. Theresa

[Guest guest]

Hi Joyce,

Hmm, looks like I now know why my feet were feeling squashed. Thank

you for that heads up, I'll give it a try.

Dianne S.

> > These questions are to anyone: #1 - Does anyone get pain right

at

> the

> > top of the leg on the sides when you walk? What have you done

for

> it

> or

> > what helps? Does it slowly go away? I just got back from a mile

> walk

> > and that is where I have the most problems. #2 - I guess this

one

> would

> > be for folks that are fused to the sacrum or very low - When

you

> sit,

> > does it feel like you can feel the end of the rod? In some

chairs

> it

> > feels like the end of the rod is poking into me. Any answers

would

> be

> > helpful. Theresa

>

>

>

>

> scoliosis vetrans * flatback sufferers * revison candidates

>

>

>

>

[Guest guest]

Hi Ann,

It is so good to see you posting again.

Yes, I do think that it's curious about the leg numbness. WhenI

left Rand's office after my most recent appointment it was almost 2

days before I realized that while we had talked about all of my

concerns, there were no actual conclusions drawn. Yes, the hardware

may be causing the pain and numbness, it could also be that I have

arthritis in my hips. He suggested a type of shot but didn't really

make clear when I should consider them. It could also be a case of

needing more time to fully recuperate from the surgery (low pain

threshold, slow healer?) or, as with you, I

just may not ever get to a point of being pain free and will

require some form of pain management to sustain an active and good

quality of life. While I would rather not have to rely on

medication, it was at least comforting to know that that option has

no time limit. I think I had this irrational fear of having only so

much time to become painfree and after that I'd have to grin and

bear it or have more surgery.

I did call Priscilla (Rand's assistant) about getting a more

conclusive idea of how Rand would like me to proceed about the shots

and more aggressive physical therapy. She thought I needed to wait

at least a couple more months before considering either, but I asked

her to find out from Rand just to be sure. That was a couple of

weeks ago now and she hasn't called back yet. (or, come to think of

it, she HAS and my teenage boys didn't write it down or tell me!)

You asked in a following post what type of pain management my

internist has me on. It's not that he's doing anything dramatically

different than Rand, it's just that he is much more involved. He

monitors me personally and adjusts my meds as needed. I've never had

to go through a middleman and he has me call him with updates as

well as regularly scheduled visits. At this point I'm on oxicontin

20mg's 2 to 3 times a day. I also take 2 exra strength tylenol with

them. I have a script for percocet 5mg's for breakthrough and he

upped my dose of Trazidone from 10 to 20 mgs at night (used as a

sleep aid and to raise my tolerance for pain). So far so good, I

feel much better then when I was on the short acting oxicontin

(percocet or oxicodone) alone. My mind feels clearer and my memory

seems to be improving.

I'm at my limit for computer time here, but please fill me in

likewise with your current situation. I have been reading your

posts, but am not sure exactlly how much pain you're in. Right now

I'm so tired I can't think straight anymore.

I may have said this already, but I really like your painting

on the home page!

All my best, Dianne

> > > These questions are to anyone: #1 - Does anyone get pain right

at

> > the

> > > top of the leg on the sides when you walk? What have you done

for

> > it

> > or

> > > what helps? Does it slowly go away? I just got back from a mile

> > walk

> > > and that is where I have the most problems. #2 - I guess this

one

> > would

> > > be for folks that are fused to the sacrum or very low - When

you

> > sit,

> > > does it feel like you can feel the end of the rod? In some

chairs

> > it

> > > feels like the end of the rod is poking into me. Any answers

> would

> > be

> > > helpful. Theresa

[Guest guest]

Dianne, would you let us know if taking the original insoles out helps your feet?

Joyce E

[ ] Re: A couple of questions

Hi Joyce,Hmm, looks like I now know why my feet were feeling squashed. Thank you for that heads up, I'll give it a try.Dianne S.> > These questions are to anyone: #1 - Does anyone get pain right at > the > > top of the leg on the sides when you walk? What have you done for> it > or > > what helps? Does it slowly go away? I just got back from a mile> walk > > and that is where I have the most problems. #2 - I guess this one > would > > be for folks that are fused to the sacrum or very low - When you > sit, > > does it feel like you can feel the end of the rod? In some chairs> it > > feels like the end of the rod is poking into me. Any answers would > be > > helpful. Theresa> > > > > scoliosis vetrans * flatback sufferers * revison candidates > > > >

[Guest guest]

Hi Joyce,

I will try them tomorrow and let you know.

Di

> > > These questions are to anyone: #1 - Does anyone get pain

right

> at

> > the

> > > top of the leg on the sides when you walk? What have you

done

> for

> > it

> > or

> > > what helps? Does it slowly go away? I just got back from a

mile

> > walk

> > > and that is where I have the most problems. #2 - I guess

this

> one

> > would

> > > be for folks that are fused to the sacrum or very low -

When

> you

> > sit,

> > > does it feel like you can feel the end of the rod? In some

> chairs

> > it

> > > feels like the end of the rod is poking into me. Any

answers

> would

> > be

> > > helpful. Theresa

> >

> >

> >

> >

> > scoliosis vetrans * flatback sufferers * revison candidates

> >

> >

> >

> >

[Guest guest]

Thanks for the interesting comments about the artwork. All of these

nice comments may actually motivate me to get off of my behind and do

some painting.

Speaking of my behind...I had to do some image searching to get my

hip flexor identified and read more about the piriformis, etc. I

think it may be the piriformis giving me the trouble. It definitely

radiates to my upper butt (not what I sit on).

Does anyone have any advice on how to break the habit of crossing

legs while seated?

I catch myself...but I catch myself several hundred times a day.

Ann

> > > These questions are to anyone: #1 - Does anyone get pain right

> at the

> > > top of the leg on the sides when you walk? What have you done

> for it

> > or

> > > what helps? Does it slowly go away? I just got back from a mile

> walk

> > > and that is where I have the most problems. #2 - I guess this

> one

> > would

> > > be for folks that are fused to the sacrum or very low - When

you

> sit,

> > > does it feel like you can feel the end of the rod? In some

> chairs it

> > > feels like the end of the rod is poking into me. Any answers

> would be

> > > helpful. Theresa

[Guest guest]

Ann,

I do worse than that. I sit on my left foot!

Kathy

Txbluebelle

> > > > These questions are to anyone: #1 - Does anyone get pain

right

> > at the

> > > > top of the leg on the sides when you walk? What have you done

> > for it

> > > or

> > > > what helps? Does it slowly go away? I just got back from a

mile

> > walk

> > > > and that is where I have the most problems. #2 - I guess this

> > one

> > > would

> > > > be for folks that are fused to the sacrum or very low - When

> you

> > sit,

> > > > does it feel like you can feel the end of the rod? In some

> > chairs it

> > > > feels like the end of the rod is poking into me. Any answers

> > would be

> > > > helpful. Theresa

[Guest guest]

Dianne, I am really going to need to call you on the phone...would you

be around tomorrow or thursday night? Reading your post, I am afraid we

are getting the same vague - pat- answers to our questions. Were you

told you had a low threshold for pain? I wouldn't assume that. Rand

told me I had a very high threshhold and well I NEED the Oxi and I

think I need to up the frequency. It works at 10 mg. I take it twice a

day but need to go back to 3x. Does your hip and butt pain respond to

ice? Mine does and that makes me hopeful that it will get better.

Ann

[Guest guest]

Ohh Kathy, that was my favorite way to sit pre-revision...every now

and then I find myself trying to get there again....too soon....maybe

someday when I am stretched out again... Cam

[Guest guest]

Hi Ann,

Absolutely call me. I'll email you my cell as well as regular

number. I lost yours when my old cell phone bit the dust. And please,

call anytime, you never have to ask! That goes for anyone on this

board, as well. Um, unless you're a pervert lurker with a thing for

the ladies with metal augmented spines (in the words of Paris

Hilton " oo, that's hot " ) .

I haven't tried ice for the pain. The cold weather this past

winter

made my back and hips stiffen so much that I couldn't imagine putting

an icepack on that area of my body!

Di

> Dianne, I am really going to need to call you on the phone...would

you

> be around tomorrow or thursday night? Reading your post, I am

afraid

we

> are getting the same vague - pat- answers to our questions. Were

you

> told you had a low threshold for pain? I wouldn't assume that. Rand

> told me I had a very high threshhold and well I NEED the Oxi and I

> think I need to up the frequency. It works at 10 mg. I take it

twice

a

> day but need to go back to 3x. Does your hip and butt pain respond

to

> ice? Mine does and that makes me hopeful that it will get better.

>

> Ann

[Guest guest]

To answer some of your questions:

1) Yes there are other opinions outside of Cranial Tech. You could go to a plastic surgeon and get their opinon. That is where most people get their perscriptions for bands, I believe.

2) Don't be scared to take your daughter out in her stroller or carseat. Use the bobby noggin nest and just limit your use for strollers,carseats,swings, bouncers etc.

3)Generally they say to try repositioning for atleast 2 months I believe and if you don't see results then you may have to get your daughter in a band.

4)I don't see why physical therapy wouldn't be successful without a band, I am not positive because my daughet did not have to do physical therapy.

5)I don't know of too many plagio friendly products sorry!

6)Tummy time is whenever your baby is on her tummy.

Hope that helps.

STARband 1/31/06 Will be an official graduate tommorrow YAY!!!

>> thanks so much for all of your support and help. i really appreciate it.> > was wondering if any had any insight into the following:> > 1) is there a 2nd opinion beyond cranial institute? > > 2) i am so scared to take my daughter out now in stroller/car seat? i bought the noggin nest- what else can i use to protect her head? is there a wedge for a car seat?> > 3) shes now 4.5 months- how long would u recommend- from all of your experiences- waiting to see if improvement happens from agressive repositioning?> > 4) I am going to try pt for her- is this known to be successful without the band?> > 5) Any other plagiocephaly friendly products on the market today?> > 6) Can tummy time be considered holding the baby without putting the baby on its back?> > Thanks so much for your tremendous help!!> > > ---------------------------------> New Messenger with Voice. Call regular phones from your PC and save big.>

[Guest guest]

I'll try to answer as many as I can. There are some others on the

board that can help you better than I can with some of the questions.

1)If by Cranial Instatute you mean Cranial Technologies there are

some other places you can get another opinion but it really depends

where you live. There are other band manufacturers like,

Orthomerica who makes the Starband, Hanger who makes the Hanger band

and there are other " localy made " bands/helmets. If you post where

you live someone who is in your area may be able to direct you

somewhere.

4)If your child has torticollis and you want to try repositioning

before banding you should definitly get her into Physical Therapy.

6) I think you are on the right track. The more time spent off the

flat area of the head the better. You may want to place her on the

prominent areas of her head though depending on the shape of her

head (if that makes sense).

Haylee

mom to Andre 21 months tort/doc band #1 22/11/05 doc band #2 coming

soon & Lesly 21 months

>

> thanks so much for all of your support and help. i really

appreciate it.

>

> was wondering if any had any insight into the following:

>

> 1) is there a 2nd opinion beyond cranial institute?

>

> 2) i am so scared to take my daughter out now in stroller/car

seat? i bought the noggin nest- what else can i use to protect her

head? is there a wedge for a car seat?

>

> 3) shes now 4.5 months- how long would u recommend- from all of

your experiences- waiting to see if improvement happens from

agressive repositioning?

>

> 4) I am going to try pt for her- is this known to be successful

without the band?

>

> 5) Any other plagiocephaly friendly products on the market today?

>

> 6) Can tummy time be considered holding the baby without

putting the baby on its back?

>

> Thanks so much for your tremendous help!!

>

>

> ---------------------------------

> New Messenger with Voice. Call regular phones from your PC

and save big.

>

[Guest guest]

Use the noggin nest everywhere she lays her head down. That is what

I did. Except the crib, they say. The noggin nest is the best

product out there in my opinion.

I would make your banding decision by 6 months. That is what we

did. And I wouldn't have wanted to be any later.

The PT is for the tort and the repo (or band) is for the plagio.

They are two different problems that are related. But the treatment

is different. PT for tort. Repo or band for plagio. As the tort

gets better it will help keep the plagio from getting worse.

Holding your baby to keep them off their back is good but it does

not substitute for tummy time. Tummy time is important so that

their neck, trunk, and arms can all get strong enough to someday

roll over, crawl, sit up and do all those important things. Tummy

time is critical in the growth and development of your baby. Try as

much as they will take and increase as you go. The more you insist

on it and keep at it the more your baby should begin to tolerate

tummy time.

Best of luck. I don't mean to be impersonal, I just didn't have

much time and I really wanted to write to you.

Bobbi H.

7 months/left tort/brachy/plagio

DOC band 5/8/06

PHX

> thanks so much for all of your support and help. i really

appreciate it.

>

> was wondering if any had any insight into the following:

>

> 1) is there a 2nd opinion beyond cranial institute?

>

> 2) i am so scared to take my daughter out now in stroller/car

seat? i bought the noggin nest- what else can i use to protect her

head? is there a wedge for a car seat?

>

> 3) shes now 4.5 months- how long would u recommend- from all of

your experiences- waiting to see if improvement happens from

agressive repositioning?

>

> 4) I am going to try pt for her- is this known to be successful

without the band?

>

> 5) Any other plagiocephaly friendly products on the market today?

>

> 6) Can tummy time be considered holding the baby without

putting the baby on its back?

>

> Thanks so much for your tremendous help!!

>

>

> ---------------------------------

> New Messenger with Voice. Call regular phones from your PC

and save big.

>

[Guest guest]

Hi Cena,

I know I am a broken record on the subject...but I used deep water with

an aqua jogger begining around 3-4 months post op to gently strengthen

my upper body after revison. I " graduated " to

lap swimming later on. You should consult your doctor to see if he

would approve this kind of activity for you.

On your other question, the only " hardware " I keep around these days is

my trusty grabber and a cushion in the car for long trips.

Sorry to hear that massage flared up some pain. I hope it subsides soon!

Take Care, Cam

[Guest guest]

Hi Cena,

I'm in the Toronto area too and also 4 months post /op. I've just begun

physiotherapy at the Spine Centre at Trillium West Totonto. So far so

good. I've been worried about not having any osteotomies at my

revision and was leaning a wee bit forward but after two sessions of

physio it seems that my piriformis/ hip area muscles were severely

shortened and pulling me forward. I'm upright completly after 2 times!!

Maybe you could get some physio that might relieve your symptoms??

Just a thought.

Best regards, Francine

[Guest guest]

Thanks Cam, I really appreciate the info. I'm just getting over pneumonia, so I'm hoping to get into the water soon. Do you, or anyone else, worry about your back? It getting hurt, or something happening? Maybe it's just because it's relatively new, but I find that I worry about "wrecking" it.

I'll let you know how swimming goes!

Thanks

Cena

From: cammaltby@...Date: Thu, 1 Mar 2007 23:33:06 +0000Subject: [ ] Re: a couple of questions

Hi Cena,I know I am a broken record on the subject...but I used deep water with an aqua jogger begining around 3-4 months post op to gently strengthen my upper body after revison. I "graduated" tolap swimming later on. You should consult your doctor to see if he would approve this kind of activity for you.On your other question, the only "hardware" I keep around these days is my trusty grabber and a cushion in the car for long trips.Sorry to hear that massage flared up some pain. I hope it subsides soon!Take Care, Cam Explore the seven wonders of the world Learn more!

[Guest guest]

Hi Francine, thanks for the ideas! I've been going to physio, and just started going twice this week now too. He's focusing on my core and leg strength. I didn't have any osteotomies during my revision either, and like you, I was worried b/c I was leaning slightly forward, which was really noticeable when I was tired. My PT said that my hip flexors are really tight, and the trunk muscles really weak - my surgeon reiterated that, and said that the forward lean wasn't due to the flatback, but the muscles. I still worry that I might need an osteotomy down the road, but my specialist said that might not be the case. Do you worry at all about that? What did you have done during your revision?

Thanks for sharing,

Cena

From: franceegreen@...Date: Fri, 2 Mar 2007 00:12:57 +0000Subject: [ ] re: a couple of questions

Hi Cena,I'm in the Toronto area too and also 4 months post /op. I've just begun physiotherapy at the Spine Centre at Trillium West Totonto. So far so good. I've been worried about not having any osteotomies at my revision and was leaning a wee bit forward but after two sessions of physio it seems that my piriformis/ hip area muscles were severely shortened and pulling me forward. I'm upright completly after 2 times!!Maybe you could get some physio that might relieve your symptoms?? Just a thought.Best regards, Francine Discover the new Windows Vista Learn more!

[Guest guest]

Cena,

Actually, the only time I don't worry about my back is in the water. My

surgeon encouraged me by explaining that there really is no way I could

hurt anything in the water since it supports the body/spine on all

axis' and it doesn't resist you. That way if one tries to twist more

than a fusion will now allow the hip or shoulder will rotate in the

water...unlike in dry land situations. He did specifically say I could

only enter the water by staircase....no ladders. And an extra caution

about the slippery pool deck. So check with your doc before you proceed.

If it is a choice, try to get your doctor to authorize (or whatever

your arrangement is in Canada) work with a PT who specializes in

aquatic therapy. If you can find a center that has a warm water pool go

for it. After the PT teaches you the moves to start off with you can go

on your own. It's great....really!

Take Care, Cam