Re: SURGERY DATE.....

[Guest guest]

---

Hello to my special visitor while I was in NEBH, the Rehab in

particular.....I am so happy for you that you have dates!! Vonnie and

now you.....12 days is like me, I had 10 days in there......ask Kim

for the lap top...even a lurker like yourself may want to lurk while

in rehab!!! I am very happy for you, keep us posted!! Fondly, ,PA

In , " marturtlesong "

<marturtlesong@...> wrote:

>

> Hi All, PA, Cam, Sharon, Carolyn, Kim, Ann, (and all the

others

> that I had the good fortune to meet at the NEBH dinner)

>

> The turtle is coming out of her shell to let you all know that I

have

> a surgery date with Dr. Rand!! My first stage is scheduled for

> Tuesday, May 16th and second stage is Tuesday, May 30th. He told

me

> that I have to stay in Jordan Rehab for the 14 days in between

> surgeries. PA I know how challenging it was for you to be

there

> for the 12 days.... so I am praying that the time flys as everyone

> just hopes to be on the recovery side of this major undertaking.

> I go to NEBH for my preadmit testing on Friday, May 5th. I am so

> thankful to have hooked up with all of you. I have obtained an

> enormous amount of information from this forum. I feel very

> informed. Forgive me for being a lurker!!! I have been doing a

> physical therapy program... of pool therapy and trying to

strengthen

> my core muscles using the exercise ball. The ball excercises are

> quite challenging as I have never worked any of those muscles. My

> only form of exercise was walking until the pain would no longer

> permit that.

> Meanwhile....I really just started telling folks at work today

about

> the upcoming surgery. It seems that talking about it out loud

makes

> it even more real... and my mind is going 100 miles an hour

thinking

> and trying to accomplish all that I need to at home in

preparation.

> Sooo..... once again I want to thank you all.... you are such a

great

> group of people and I feel so lucky to have your support as I go

> through this journey with all of you.

>

> NH

>

[Guest guest]

NH,

I would say congratulations are in order...for getting your surgery

dates figured out and coming out of the shadows! I put you on the

calender...so like telling your collegues, you will no doubt begin to

feel it all is a whole lot more real in the next weeks!

I must say if you just scheduled it seems like a pretty aggressive

schedule...or have you known the dates for a little while and had a

chance to get your life in order? If not you will have lots to do! I

remember asking Rand in December for dates in Feb or march and he

thought that would be tight....but of course everyone's timetable is

different.

I am glad meeting us and lurking has given you a chance to learn more

about what is ahead. I think you have as much insight as any patient

now and hopefully will be able to have a great surgery and recovery.

Don't sweat the Jordan rehab....once you learn the routine there it

is not too bad a deal....you have to get the " ice girl " (sorry can't

remember her name!) to agree to run down and get you a real coffee

after she finishes her morning rounds. Who knows..with two weeks

between they may even let you go down ther yourself! Of course we

will be sending you lots of emails, so hopefully Kim will set you up

with a laptop to keep you connected to us.

Congratulations too on working on PT on the " front side " ...you will

see the dividends on the " back side " ...no pun intended. Not only will

you strengthen what you can now, which will help give you a little

buffer after surgery...but you will have a little pool routine worked

out and probably find that a nice way to return to activity when you

are allowed. I just loved being in the water and weightless after all

the weeks of laying abed. For me, for some reason just the skin

pressure of the sheets was annoying within 48 hours...and somehow I

got it in my head that had to do with the heightened sensitivity from

all the morphine based products....but I could have been wrong about

that. In any case the water was nice.

Welcome to our world in all ways and please keep posting and asking

questions if you have any!

Take Care, Cam

[Guest guest]

---

Cam,

Ice girls name is Maureen Finn... " Irish on both sides " ...is what she

told me everyday, she was a sweetie!!!, PA

In , " cammaltby " <cammaltby@...>

wrote:

>

> NH,

>

> I would say congratulations are in order...for getting your surgery

> dates figured out and coming out of the shadows! I put you on the

> calender...so like telling your collegues, you will no doubt begin

to

> feel it all is a whole lot more real in the next weeks!

>

> I must say if you just scheduled it seems like a pretty aggressive

> schedule...or have you known the dates for a little while and had a

> chance to get your life in order? If not you will have lots to do!

I

> remember asking Rand in December for dates in Feb or march and he

> thought that would be tight....but of course everyone's timetable

is

> different.

>

> I am glad meeting us and lurking has given you a chance to learn

more

> about what is ahead. I think you have as much insight as any

patient

> now and hopefully will be able to have a great surgery and recovery.

>

> Don't sweat the Jordan rehab....once you learn the routine there it

> is not too bad a deal....you have to get the " ice girl " (sorry

can't

> remember her name!) to agree to run down and get you a real coffee

> after she finishes her morning rounds. Who knows..with two weeks

> between they may even let you go down ther yourself! Of course we

> will be sending you lots of emails, so hopefully Kim will set you

up

> with a laptop to keep you connected to us.

>

> Congratulations too on working on PT on the " front side " ...you will

> see the dividends on the " back side " ...no pun intended. Not only

will

> you strengthen what you can now, which will help give you a little

> buffer after surgery...but you will have a little pool routine

worked

> out and probably find that a nice way to return to activity when

you

> are allowed. I just loved being in the water and weightless after

all

> the weeks of laying abed. For me, for some reason just the skin

> pressure of the sheets was annoying within 48 hours...and somehow I

> got it in my head that had to do with the heightened sensitivity

from

> all the morphine based products....but I could have been wrong

about

> that. In any case the water was nice.

>

> Welcome to our world in all ways and please keep posting and asking

> questions if you have any!

>

> Take Care, Cam

>

[Guest guest]

Hi and good luck!

Bonnie

[ ] SURGERY DATE.....

Hi All, PA, Cam, Sharon, Carolyn, Kim, Ann, (and all the others that I had the good fortune to meet at the NEBH dinner)The turtle is coming out of her shell to let you all know that I have a surgery date with Dr. Rand!! My first stage is scheduled for Tuesday, May 16th and second stage is Tuesday, May 30th. He told me that I have to stay in Jordan Rehab for the 14 days in between surgeries. PA I know how challenging it was for you to be there for the 12 days.... so I am praying that the time flys as everyone just hopes to be on the recovery side of this major undertaking.I go to NEBH for my preadmit testing on Friday, May 5th. I am so thankful to have hooked up with all of you. I have obtained an enormous amount of information from this forum. I feel very informed. Forgive me for being a lurker!!! I have been doing a physical therapy program... of pool therapy and trying to strengthen my core muscles using the exercise ball. The ball excercises are quite challenging as I have never worked any of those muscles. My only form of exercise was walking until the pain would no longer permit that.Meanwhile....I really just started telling folks at work today about the upcoming surgery. It seems that talking about it out loud makes it even more real... and my mind is going 100 miles an hour thinking and trying to accomplish all that I need to at home in preparation. Sooo..... once again I want to thank you all.... you are such a great group of people and I feel so lucky to have your support as I go through this journey with all of you. NH

[Guest guest]

Hi Cam,

Yes, you are correct.... I have had my dates for a while.... If I

recall we met at NEBH for chat & chew as PA says... on a

Wednesday and on that Friday Hillary called me with the dates. She

first offered me the dates of 5/10 & 5/26 but that was 16 days in

between stages... so I declined and took the next choice of 5/16 &

5/30....

Thanks for the helpful hints regarding Jordan Rehab..... I am hoping

that the hospital has a courtyard of some sort for patients as the

sun is my energy and I will feel much happier if I have access to

it... if not I will just find a sunny window to soak up the vitamin D

that I have recently been deficient in. I am seeing an

endocrinologist to figure out how to treat the osteopenia that seems

to be progressing and he discovered the vit D deficiency.

I do hope to hook up with Kim Cramer for a laptop as my connection to

the real world.

I so agree with you and water therapy. For the first time in my life

I feel like I am accomplishing something working out in the water.

And pain free in the process. Though this is swim lesson season for

the little kiddos... thats a pain... so the novelty is wearing off as

finding a space in the pool is getting more difficult and having all

their moms holding their infants and stare at me as I go through my

exercise program...... But pool therapy is certainly something I will

look forward to after the surgery...and then I will be able to go

during the day (being out of work)....

So thank you again for your wisdom and encouragement as I travel this

journey with you all...

> NH

[Guest guest]

Hi Sharon,

Yes I am alive and well... lurking as usual... I have had my dates

since the Friday after our dinner.

Glad to hear that you got the myelogram over with....better you than

me... get this... I had a myelogram as a child at Children's.....and

still remember screaming through it.... and there is still some

residual contrast material within the spinal canal from the

procedure. Everytime a MD reviews my xrays they comment when they

see the dye mass.

I also have a horseshoe shaped kidney. It is really 2 kidneys but

they are fused at the top. This is a concern and challenge for Dr.

Rand as it suspends lower than normal kidneys and could interfere

with the anterior fusion process. So you and I are unique in our own

way!!

So we are not going to be roomies....but maybe you could at least

come and visit??!! Hope so...

Thanks again for all your support!!

NH

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >

[Guest guest]

---,

I spoke with my sister, Barbara, she was excited to hear about the

surgery dates you. She asked me, to ask you, if she could come see

you while you are in Jordan. I told her I would ask you and have you

give me a call to let me know your last name....she would not be able

to come in and ask for from NH!!! If you lost my number.here is

is..484-919-4950. She really enjoyed talking to you at the Chat n "

Chew we had at NEBH and would love to come see you!!!, PA

In , " marturtlesong "

<marturtlesong@...> wrote:

>

> Hi Sharon,

> Yes I am alive and well... lurking as usual... I have had my dates

> since the Friday after our dinner.

> Glad to hear that you got the myelogram over with....better you

than

> me... get this... I had a myelogram as a child at

Children's.....and

> still remember screaming through it.... and there is still some

> residual contrast material within the spinal canal from the

> procedure. Everytime a MD reviews my xrays they comment when they

> see the dye mass.

> I also have a horseshoe shaped kidney. It is really 2 kidneys but

> they are fused at the top. This is a concern and challenge for Dr.

> Rand as it suspends lower than normal kidneys and could interfere

> with the anterior fusion process. So you and I are unique in our

own

> way!!

> So we are not going to be roomies....but maybe you could at least

> come and visit??!! Hope so...

> Thanks again for all your support!!

>

> NH

>

> > >

> > > scoliosis veterans * flatback sufferers * revision candidates

> > >

[Guest guest]

NH,

Well it all makes a little more sense as a time line if you had

those dates back in March! So I hope you have read my constant

admonition to get those nice silky jammies packed for your adventure

in hospital living....especially with these long stays...you really

have to bring some items to wear that make you feel human...and the

slippy sliddy fun of the silkies is imperative in my book!

I really have no experience with the great outdoors at NEBH since I

was there during snow season...but even then the room I had in

Jordan did face one of the pretty interior courtyards. Even when I

have been at the hospital during better weather I don't know if I

have seen people out there. I did get to walk out with my little

cute PT boy all the way to a long interior concourse that I assume

was built to accomodate those original NEBH patients with lung

ailments up in the fresh air high on the hill....

I love the sun too. I admit I happily chance too much sun for a few

wrinkles (or skin cancer yikes!)and freely admit I was happy to

learn that they now suspect that too much sun lotion and avoidance

of sun can cause it's own problems. It makes me at least feel like

there is a reason to be out in the sun.

Where do you work out in the water? Take a look for any hotels that

will let you come in for a daily price. Especially after you are

released to start a water workout, the last thing you will want are

a lot of other people in the water with you...especially kids! For

the first few weeks I went to a hotel here that never has guests in

the pool mid week and I would go take my noodle and just ride around

and too bad for anyone who thought I looked like a nut job! The

other advantage was that I didn't have to abide by any particular

schedule....which worked because sometimes it took me all morning

just to get showered and dressed and out the door.

It is an adventure to be sure. Glad to help you along the way.

Take Care, Cam

[Guest guest]

[ ] Re: SURGERY DATE.....

> Hi Sharon,

> Yes I am alive and well... lurking as usual... I have had my dates

> since the Friday after our dinner.

> Glad to hear that you got the myelogram over with....better you than

> me... get this... I had a myelogram as a child at Children's.....and

> still remember screaming through it.... and there is still some

> residual contrast material within the spinal canal from the

> procedure. Everytime a MD reviews my xrays they comment when they

> see the dye mass.

> I also have a horseshoe shaped kidney. It is really 2 kidneys but

> they are fused at the top. This is a concern and challenge for Dr.

> Rand as it suspends lower than normal kidneys and could interfere

> with the anterior fusion process. So you and I are unique in our own

> way!!

> So we are not going to be roomies....but maybe you could at least

> come and visit??!! Hope so...

> Thanks again for all your support!!

>

> NH

>

>> >

>> > scoliosis veterans * flatback sufferers * revision candidates

>> >

[Guest guest]

Wow, that's amazing about the dye mass. Do you have any idea why the dye

didn't dissipate?

I'm sure I would have screamed bloody murder as a kid, too. Did they even

give you a local anesthetic?

So Rand didn't need a myelogram on you. That's great, especially since I'm

sure your early experience with it must have been very traumatic.

I don't know anything about my kidneys. I will ask Rand. I have read that

congenital scoliosis patients often have one kidney, and since you explained

about yours I suspect that is what they mean. I haven't had any studies

done to examine my kidneys, so it's very possible I have that. I seem to

have just about every possible physical abnormality found in occult spina

bifida.

Too bad you won't be at NEBH on May 8, which is my follow-up appointment

with Rand. But maybe I will have some other reason to be there while you

are there, and if I don't make it while you're in Boston, I can certainly

come see you when you get home. (I'm much more comfortable in NH traffic.)

Keep up the good work of preparing yourself!

Sharon

[ ] Re: SURGERY DATE.....

> Hi Sharon,

> Yes I am alive and well... lurking as usual... I have had my dates

> since the Friday after our dinner.

> Glad to hear that you got the myelogram over with....better you than

> me... get this... I had a myelogram as a child at Children's.....and

> still remember screaming through it.... and there is still some

> residual contrast material within the spinal canal from the

> procedure. Everytime a MD reviews my xrays they comment when they

> see the dye mass.

> I also have a horseshoe shaped kidney. It is really 2 kidneys but

> they are fused at the top. This is a concern and challenge for Dr.

> Rand as it suspends lower than normal kidneys and could interfere

> with the anterior fusion process. So you and I are unique in our own

> way!!

> So we are not going to be roomies....but maybe you could at least

> come and visit??!! Hope so...

> Thanks again for all your support!!

>

> NH

>

>> >

>> > scoliosis veterans * flatback sufferers * revision candidates

>> >