Cam

[Guest guest]

Hi Kam...

My surgeon approved swimming and hot tub about 3 weeks post-op. In

retrospect, that may have been a bit dangerous, but I can't begin to

tell you how great it felt! Hope you can get approved soon.

--

>

> How long did you have to wait to get in the water????

>

> I keep dreaming of a waterproof cover for my incision. A hot tub dip

> would, no doubt, loosen up this tension!

>

> I've considered going to get an arm and leg massage. Rubbing my legs

> does provide quite a bit of relief...just don't know how I'd get

> there. Maybe this weekend.

>

> kam

>

[Guest guest]

Kam,

I just went back and re-read my week by week andblow by blow posts in

the files....It looks like I was back in the water after my 8 week

follow-up.

I can remember being told that it was forbidden until the incisions

were well healed...wouldn't want any nasty bacteria finding their way

in, would we?

The precautions were that I had to be able to enter the water with a

stair case and a good handrail...which the public pools here have.

Must have a very safe pool deck as slipping is not an option! I had my

husband come with me the first few times.

I would guess that you probably will not be able to use a ladder to

exit the water for some time...last summer even 5-6 months out I could

not use a ladder without putting too much stress on my low back.

My first venue was the local hotel with a hottub and a water temp in

the main pool closer to 84deg. It is wonderful. As we were saying

between stages....it is sooooo nice to float and not have anything

touch you.

Try not to get too blue. I highy recommend the Ellen show for some mid

morning laughs. I am never a TV watcher usually...but last winter I

had to find a rountine that got me through my days without going out

of my mind....so after breakfast I would shower and dress and then a

little computer my house walking routine...then a little Elllen,

lunch...meds and a nap...another walk and then usually my son would be

home from school or visitors would come over. I just let my world be

very small for awhile...

I am sorry you are having so many painful moments...it sounds like it

is moving around and that is probably good. I keep meaning to ask...do

you have a bone growth stimulator belt?

Take it easy, Cam

I > How long did you have to wait to get in the water????

>

> I keep dreaming of a waterproof cover for my incision. A hot tub dip

> would, no doubt, loosen up this tension!

>

> I've considered going to get an arm and leg massage. Rubbing my legs

> does provide quite a bit of relief...just don't know how I'd get

> there. Maybe this weekend.

>

> kam

>

[Guest guest]

Well, I like 's answer better, but I will double-check before I do anything. Of course, I've been checking my incision every day for progress. ;o) The pool at the Y is not very warm, but the hot tub is what I'm really craving! Actually, the dry sauna sounds quite welcoming as well. Heat. Warmth. Ahhh.

I remembered your precautions quite well...thought about them a lot when I was in the pool before surgery - planning my strategy for post-op.

I won't be driving until I'm off the pain meds and for now, I'll have to settle for hot showers!

My mom LOVES Ellen and I called her this morning to find out what time she's on...one minute before the show was over. We don't have cable (since we don't watch TV), so I'll have to play with my rabbit ears to get ABC to come in well enough to watch. Hey! That, I can do without worrying about any of my restrictions! I needed a little challenge. Thanks!

Nope, no bone growth stimulator belt and no TLSO. I did put my ice pack belt on my back/butt last night and that felt pretty good. It also made me aware of my unchanging posture. When I went from standing up to laying down with the belt on, it felt really weird...my first awareness of fusion to the sacrum with a little more lordosis. Interesting.

Thank you for the feedback. As for laughter, Adam and I love to laugh (it's in our top five favorite things) so we're renting Curse of the Were Rabbit for our special Valentine evening. Quirky, eh?

Actually, if anyone is looking for something different and romantic for this special day, we watched March of the Penguins last weekend and it is such a beautiful love story - and a man will appreciate the risk and danger aspects!

Happy Valentine's Day! I encourage all of you to do something special today for yourself. If you do have a Valentine, this will be a gift for them as well. Heck, you don't even have to tell anyone what you do!

kam

[Guest guest]

Kam...

Be sure to add Wild Parrots of Telegraph Hill to your list. It's also

a love story.

--

> Actually, if anyone is looking for something different and romantic for

> this special day, we watched March of the Penguins last weekend and it

> is such a beautiful love story - and a man will appreciate the risk and

> danger aspects!

[Guest guest]

Kam,

Well I sent you a visualiztion today while I was floating today...I

hope you got it. And " Yes " to heat....no matter how it comes. Just

sitting in that hot tub will be great.

I hope you find Ellen....there is something that just makes you

smile when she just hops up and gets dancing....and her gags where

she phones people up are pretty funny too. I know that in a perfect

world a show should have an intellectual weight to it in order to

take up time in my life...but lets face it...in the months after

surgery when you are pretty drugged up it is pretty hard to

concentrate on anyting.

This permanant " pose " is a little different isn't it? I think I told

you that I asked dr rand if this is the position everyone should

really be sitting in and if so most chairs were really missing a lot

of lordosis...but he said the posture is really to function

standing/walking....they had to make a choice so they make it in

favor of ambulation. The sitting doesn't bother me so much

anymore...but I miss being able to sit into a chair and feel cozy.

Caroline was right...from here on in I can see that pillows will

always be necessary to make sitting comfortable when hanging out.

March of the Penguins was great. Cam

>

>

> Well, I like 's answer better, but I will double-check before

I do

> anything. Of course, I've been checking my incision every day for

> progress. ;o) The pool at the Y is not very warm, but the hot tub

is

> what I'm really craving! Actually, the dry sauna sounds quite

welcoming

> as well. Heat. Warmth. Ahhh.

>

> I remembered your precautions quite well...thought about them a

lot when

> I was in the pool before surgery - planning my strategy for post-

op.

>

> I won't be driving until I'm off the pain meds and for now, I'll

have to

> settle for hot showers!

>

> My mom LOVES Ellen and I called her this morning to find out what

time

> she's on...one minute before the show was over. We don't have cable

> (since we don't watch TV), so I'll have to play with my rabbit

ears to

> get ABC to come in well enough to watch. Hey! That, I can do

without

> worrying about any of my restrictions! I needed a little challenge.

> Thanks!

>

> Nope, no bone growth stimulator belt and no TLSO. I did put my ice

pack

> belt on my back/butt last night and that felt pretty good. It also

made

> me aware of my unchanging posture. When I went from standing up to

> laying down with the belt on, it felt really weird...my first

awareness

> of fusion to the sacrum with a little more lordosis. Interesting.

>

> Thank you for the feedback. As for laughter, Adam and I love to

laugh

> (it's in our top five favorite things) so we're renting Curse of

the

> Were Rabbit for our special Valentine evening. Quirky, eh?

>

> Actually, if anyone is looking for something different and

romantic for

> this special day, we watched March of the Penguins last weekend

and it

> is such a beautiful love story - and a man will appreciate the

risk and

> danger aspects!

>

> Happy Valentine's Day! I encourage all of you to do something

special

> today for yourself. If you do have a Valentine, this will be a

gift for

> them as well. Heck, you don't even have to tell anyone what you do!

>

> kam

>

[Guest guest]

They sure need to update info….from

2003???

From: [mailto: ] On Behalf Of Livia Rockenbaugh

Sent: Thursday, March 02, 2006

9:39 AM

To:

hepCWebWarriors

Subject: [Norton AntiSpam]

[ ] CAM

Here's an interesting link about CAM

Hepatitis C and Complementary and Alternative Medicine

http://nccam.nih.gov/health/Hepatitis C/

[Guest guest]

Val,

I actually have the satin p.j.s...two pairs actually and I can't

believe how well they have worn...every night for almost 15 months and

they still look new.

Happy sliding to you, Cam

[Guest guest]

---

Val,

I was very emotionally unstable before the surgery....I needed

ativan to keep me from taking the bridge! I would be at work and my

classroom aide and I would just look at each other and start

crying...I also wrote notes, via email,sent the day i left to my

kids, I should have written them on paper but I thought my kids would

think i was looney!! I was not too morbid becasue I did not want to

scare my kids..but the reality of the situation was there. ALl I can

say is ride the wave the next few days, you really have to take one

day at a time!! Hang tough!! , PA

In , " redmarmie " <vclark@...> wrote:

>

> Hi Cam,

> I have one child also, they would not let me deliver vaginally.

> It must be that the pelvic ring could not return to place. To bad

> I couldn't get him to tuck that in while he is there Maybe, he

> will have no choice since he has to move it all to do the anterior

> work, ha! a free be

>

>

>

> >

> > Val...no pelvic pain...only one child...delivered vaginally. I do

> have

> > two friends who had a condition where the babies heads forced

open

> the

> > joint at the front of the pubic bone and to this day it hurts

> > them....the things we mothers endure! Cam

> >

>

[Guest guest]

Hi Carol (CA)

Yes, I finally figured out, they just don't know. I have random

ache's and pain from the pelvic area but only since my son was

born, that is why I agree with the pelvic ring theory though I wore

a brace for 6 months that was suppose to help force it back into

place. Ah, Doc! it didn't work.

> >

> > Val...no pelvic pain...only one child...delivered vaginally. I do

> have

> > two friends who had a condition where the babies heads forced

open

> the

> > joint at the front of the pubic bone and to this day it hurts

> > them....the things we mothers endure! Cam

> >

>

[Guest guest]

What is this " pelvic ring theory " ? Is this the pubic bone that " moves

apart " ? My doctor at the time seemed to think this is a normal thing.

I have never heard of braces........

Carol (CA)

> > >

> > > Val...no pelvic pain...only one child...delivered vaginally. I

do

> > have

> > > two friends who had a condition where the babies heads forced

> open

> > the

> > > joint at the front of the pubic bone and to this day it hurts

> > > them....the things we mothers endure! Cam

> > >

> >

>

[Guest guest]

Hi ,

Yes I live on Nantucket. I love it here year 'round....I actually like

it better in the winter than the summer some days! Are you frightened

of the winter storms? Cam

[Guest guest]

Cam,

No, I think I have a fear of being surrounded by water for extended

periods of time. I had the same problem when I spent a month on Maui.

I always did fine during vacation but if it was any longer I started

having abnormal panic attacks about the water.I actually think it

stems from a movie I saw as a kid where an island disappears in a

storm. Silly huh? but I really think that is where it came from.

>

> Hi ,

>

> Yes I live on Nantucket. I love it here year 'round....I actually

like

> it better in the winter than the summer some days! Are you

frightened

> of the winter storms? Cam

[Guest guest]

Kam,

Thanks for your good wishes. Yesterday was the actual birthday and

since Pete turned 40 a few weeks ago we through a Mid-Summer's Eve

party in the Scandinavian tradition....a tent, a bonfire and 30

friends for dinner...a very fun time all around. And my back held up

fine. I did pace myself over the week...trying not to do too much

moving of heavy things on any one day...or too much garening...but

all in all...very doable.

Hubby gave me a very nice canvas sling shair with my initials and

the word " retired " on it....should be good for the beach!

Glad you are back,

Cam

>

> Cam,

>

> I have repeatedly tried to congratulate you on retirement and each

> time, something happens and the missive is lost at which point I

get

> flustered and/or distracted and don't bother to try again. So,

congrats

> on retirement and happy birthday! I am so excited for what the

future

> has in store for you and grateful that you (and so many of us) can

> truly look forward to full, active lives. Keep us posted on your

> fitness progress and share a few of the fun retiree activities you

> discover. While I expect I'll do " job-related " things for the rest

of

> my life (I love what I do), I don't think retirement will be too

> difficult for me. Playing is oh, so much fun.

>

> Celebrate lots!

>

> kam

>

> p.s. I have just copied this missive to the clipboard just in

case...

>

[Guest guest]

Cam,

I know...and I got it...I'll @ least look @ the cough syrup.

thanks, Kim

>

> Kim,

>

> I completley understand the love/hate relationship with a therapist. I

> knew I was going to doing some " work " and she didn't let me " off the

> hook " or " slide " on much....something like taking cough

> medicine....tastes awful, but I had to do it!!!

>

> Take Care, Cam

>

[Guest guest]

,

I called for an appt but Priscilla was out until tomorrow...hopefully

I will have a date for you then.

Take Care, Cam

[Guest guest]

Ok, there are a dozen of women waiting for details. Thanks, VC

>

> ,

>

> I called for an appt but Priscilla was out until tomorrow...hopefully

> I will have a date for you then.

>

> Take Care, Cam

>

[Guest guest]

Do you have 's email address? I would like to ask her about her

pelvic fracture.

[Guest guest]

While they are not the only ones on the west coast, the ones we hear

the most about as doing flatback revision are Drs. Berven and Hu at

UCSF (San Francisco). (Hopefully someone will correct my memory if I

got the names wrong; Hu I'm sure of.) Dr. Serena Hu has done revisions

for a number of people in the group and we hear only good things about

her. It would be worth your while to seek out an opinion there.

Sharon.

madnsn2 wrote:

thank u for the detailed supportive note and i wonder if there is

a flatback specialist on teh wes cst lke CAl i know there nwt one in

vegas/ And my ex from 13 yrs ago lives there and gave me the do so je

may hel take her.

Im so blessed racine emailed me about this site im at wits end

and i feel that if this is all i have to look forward to then i have

the means to end it. It should be our choice. I tild my PA that 2 dys

aig0 i meet my dr agai today if i can manage the drive.. May i ask the

big questions??? ????????? ????

Hpw long were you in the hospital after the surgeruam and are you on

long term disability from surgery

if you coould let me know if there are great flatback drs on WC that

would make my process easier

my neuro symptms are worse mow hard to swallow and kerking body pparts

did oyu have that

thanks Donna god bless u

[Guest guest]

Jana,

I offer this up for you and our several new member to read. First, go to the " FILES" section on the site, open it, and there is two articles to read. Under writings of Mina, read" Flatback Syndrome.doc", is a patient like us, who was a pioneering patient, who's writing abilities are superior, and has put together very detailed papers on the subject, little written compares to her work, and holds up all these years later. She has three I think articles there, all are excellent reading. Next, read from the FILES section" SRS flatback White Paper.pdf", has excellent pictures of exactly what Flatback looks like and why.

My next suggestion is to read, read, read, the FILES section is full of info. With this or any medical problem, you have to become a scholar, knowledge is power, it help when seeing docs to ask pointed questions, and gives you decearnment when they are talking to you, to know if you have found the right doc for you.

As to issues that can be caused by Flatback, many of us pre revision could not hold ourselves upright, we were cast forward, and that puts pressure on the knees, knee problems are common. Many of us had dramatic hip pain. Knee and hip pain is sometimes how we get driven back to doctors, not knowing it's a complication of our loss of Lordosis. Many of us have stenosis, that can cause hip, butt and traveling leg pain. Many too have arthritis in the unfused verebrae below our fusion mass, that causes low back pain. Other complications seen is broken or unhooked rods, that too can cause pain. Many have areas of numbness, hands, feet , or legs. Shooting or take your breath away pain. Some have dull pain constantly, some have constant pain, some will have pain that resolves if sitting down. Serious symptoms where you should see a doc ASAP are, inability to stand at all, loss of bowel or bladder control, or complete loss of control of your legs. Most symptoms come on over time( years) and are progressive. There are too those who are basically fine for decades, and then whammy, pain hits, and they go downhill almost immediately. Many of us have been dealing with symptoms for years, adjust to them, and write it off as we have a crappy back, till the pain increases, or we are left with less abilities.

For me my downhill process began 11 years after my Harrington was placed. I had a baby, was great pregnant, but immediately after, I had awful shooting pain down my right leg to the ball of my foot. If I was up, I was in pain. Saw three different orthos, all said my rod was unhooked at the top, here's some pills to ease the pain, and learn to live with it. Over the next ten years, I saw doc's over and over again, cause my walking ability had decreased, I was only able to walk a block or two till the pain was so bad I had to sit down, and I couldn't stand long. Again I got told my fusion mass looked great, rod now was unhooked at both ends, but here some pills, you have ones of the worst x-rays I've seen, you have a bad back, learn to live with it. In 2000, 15 years later, I was helping a neighbor move, just packing boxes, and my back went completely out, my husband had to help me walk back home, and i reluctantly went to the doctor, after seeing 20 over 15 years with no real answers to what was wrong, I wasn't feeling the idea of seeing yet another, but maybe they could give me some pills to help with the pain. My new PCP( we had just moved to Denver) had never seen anything like my x-ray and wanted me to be seen by a Ortho ASAP, !3 phone calls later cause none of the docs took my insurance, I had an appointment with Dr. Kumar. Sometimes you get to good things in a round about way. After 15 years of pain, I got my diagnosis of Flatback and a plan to fix it. I cried the whole way home from the appointment, it was such relief to know it had a name, and someone was finally listening to me.

After revision for me, all of my preop problems are gone. I walk as much as I'd like, I stand as much as I'd like, gone is the shooting pain, the hip and leg pain. I'm very lucky and I know it. Not all get the whole enchillada, and I'm thankful. I was looking to get my pain reduced, not knowing it was possible for me to be painfree. My doc gave me no guarntees, and thought because of how much arthritis I had, I would have some level of pain after surgery. Lucky, very lucky, and I am thankful to my two surgeons who worked on my case, Dr. Kumar and Dr. O'Brien, who got me to where I am.

So to wrap this up, reading, researching, is valuable. Ask questions here, we all have lived with scoli and Flatback, many of us have gone through the revision process, some are living in Flatback mode for various reasons, and all have valuable knowledge to impart. the sharing is what is key to being here, as many when they first get here are surprised to know other are going through, or have gone through what they are, they thought they were alone, the only one.

Colorado Springs

[ ] Re: Cam

Sorry about that...I'll figure out this posting stuff yet. Those don't sound very fun that is for sure! I have gone to my knees due to pain,(felt like I was being stabbed) but not lost control. What are other issues that can be caused by flatback? I need to get all my info from this group, because doctors here haven't a clue. I hate jumping all the hoops to get to the doctors that do know.> >> > Cam you said, "experiencing any of the emergency types of spine problems" in a post to Plantano. Would you elaborate on this for me? Like I said I'm new to this and need to learn as much as possible.> >>

[Guest guest]

Jana,

When writing I get caught up and sometimes get forgetful. Also and issue is DDD degenerative disc disease. For years we have been bending on a limited part of our spine, the unfused area below our fusion mass. This are thus is getting far more wear and tear than a normal spine. It plain wears out. Disc's have either less height than normal, are displaced, or plain worn out, so verebrae can be bone on bone. Extreamly painful.

Colorado Springs

[ ] Re: Cam

Sorry about that...I'll figure out this posting stuff yet. Those don't sound very fun that is for sure! I have gone to my knees due to pain,(felt like I was being stabbed) but not lost control. What are other issues that can be caused by flatback? I need to get all my info from this group, because doctors here haven't a clue. I hate jumping all the hoops to get to the doctors that do know.> >> > Cam you said, "experiencing any of the emergency types of spine problems" in a post to Plantano. Would you elaborate on this for me? Like I said I'm new to this and need to learn as much as possible.> >>

[Guest guest]

Jana,

As Kathy said, an emergency in the spinal world means that if the problem is not

dealt with immediately then permanent damage will be done...and even if it IS

dealt with quickly...sometimes is permanent. Losing bowel/bladder control or any

apparent paralysis. I am not a medically trained person...so any symptoms should

always be covered with your doctor.

I was just saying that since 's doctor presumably would have detected any of

those kinds of problems that really call for a " hurry up " on surgery...she more

than likely can spend as much time as she needs locating the right doctors, and

even then taking as much time as she likes with her options, unless of course

one of these emergency symptoms appear. Since I have been involved with the

scoli message board world...some 6-7 years...I have yet to read of a patient who

presented with these kinds of problems...although as time went on for me,

between diagnosis and the following year shortly before my surgery date I did

begin to have symptoms of difficulty starting a stream of urine after I had been

up and around a lot. Not an emergency, but was glad to be a few weeks a way from

surgery.

I can say that for me, every day between the time of diagnosis and surgery felt

like an emergency...I couldnt walk or stand comfortably for very long....but I

can see that it really wasnt.

Take Care, Cam