Update - Beth on Long Island - six weeks post op

[Guest guest]

This week I noticed that I am moving with less twinging in the back, i.e. when

putting on socks or pulling up pants, all with aids of course. I still need an

aid to wipe/wash my privates, and given the ratio of my arms to my torso that

may very well be permanent. Today I was strong enough to get a half gallon

container out of the fridge and pour myself a drink. Last week I figured out

how to wash my hands without bending forward at the hips, which was never

allowed at rehab but which I hope to eventually be cleared to do, ala the

retreat picture of members taking a drink at the water fountain. I stand 90

degrees away from the sink, and bend my knees until my hand can reach the

handle. I soap and rinse that hand and dry it with the towel I previously

placed nearby. Then I turn 180 degrees and repeat with the other hand.

Cumbersome, but sometimes hand sanitizer just doesn't feel clean! Some days

recently I've been able to walk a total of two miles in half and/or whole mile

increments. This week I noticed that it doesn't twinge my back when I need to

maneuver the walker over cracks in the sidewalk. The only difficulty has been

the neuropathic pain in my right foot. It is almost back to pre-surgery levels.

When I woke from the operation it was gone, but first the numbness and then the

pain started coming back, the numbness started in the hospital and the pain

started in rehab. Rest doesn't necessarily alleviate it, sometimes it almost

feels worse when I'm laying on my back for a couple of hours. I called Hillary

who checked with Dr. Rand. During the operation, he felt he had cleared the

canal for that nerve sufficiently not to need to remove the pedicle. He

recommended going on Neurontin to try to ease the pain. One option is to hope

that the Neurontin and time will allow the nerve to stop being irritated. The

other is to get a myleogram to check more definitively; if the myleogram shows

impingement, then he'd have to go back in to remove the pedicle.

Psychologically I am not prepared for more surgery. I had tried Neurontin in

the past with minimal relief and multiple bad side effects. Still, I'm willing

to try that again over the more invasive option. For those who had neuropathic

numbness/pain after the surgery and that problem eventually went away, I'd

appreciate hearing about how long it took to do so. Thanks in advance.

[Guest guest]

Beth,

Finding new ways, with a new body and restrictions, is part and parcel in getting through in the early days. You'll find tricks to get almost everything done. What you said put me right back in that moment, and for me it's been 8 years.

I'm wondering if you have a brace? I think maybe for me, that extra support, even though I hated it every moment, did allow me some level of added support, cause I was able to pick up say a gallon of milk without too much effort. I do remember early on, how it was awful trying to get dishes into the bottom rack of the dishwasher, but I figured it out.

I know exactly what you mean about toileting, early on it was awful, and I used one of those tools, but I'm lucky I have pretty long arms, and found that with time away, and I use those wet toileting wipes, they give me enough extra reach that I get the job done well, but it took time to figure it out. Healing also helps. I do miss the extra reach I had when I wasn't fused as high, when after my first revision I was only fused to T5, and that added bit of open verebrae, gave me a lot more function, than now after my second, and being fused to T1. Still I manage really well, some things are frustrating, but in the scope of things, I'm so much better, that the frustrating things are just that, frustrating.

As to the nerve pain, time and meds may give you the healing you need, only time will show that. For some, it takes going back in a tweeking things. Just know, and I've been there, that if more surgery is needed, it is worth it, even though now, it just sounds like to much to endure. It will probably be FAR less work, and you will pop back better and faster. I've had three post Harrington surgeries, and while thats a lot, and one was completely unexpected, I got through it, and am actually glad for all three, cause they got to where I am, without the pain and doing well. So give the meds and healing some time, maybe that nerve will quit firing up on it;'s own, but if not, you'll get through it, more surgery can be a blessing, even though now it doesn't seem like it, it worked for me.

I'm glad the walking is going well, sounds like you are healing and seeing improvement, all good.

Wow, all this sure isn't for sissys hunh!

Colorado Springs

[ ] Update - Beth on Long Island - six weeks post op

This week I noticed that I am moving with less twinging in the back, i.e. when putting on socks or pulling up pants, all with aids of course. I still need an aid to wipe/wash my privates, and given the ratio of my arms to my torso that may very well be permanent. Today I was strong enough to get a half gallon container out of the fridge and pour myself a drink. Last week I figured out how to wash my hands without bending forward at the hips, which was never allowed at rehab but which I hope to eventually be cleared to do, ala the retreat picture of members taking a drink at the water fountain. I stand 90 degrees away from the sink, and bend my knees until my hand can reach the handle. I soap and rinse that hand and dry it with the towel I previously placed nearby. Then I turn 180 degrees and repeat with the other hand. Cumbersome, but sometimes hand sanitizer just doesn't feel clean! Some days recently I've been able to walk a total of two miles in half and/or whole mile increments. This week I noticed that it doesn't twinge my back when I need to maneuver the walker over cracks in the sidewalk. The only difficulty has been the neuropathic pain in my right foot. It is almost back to pre-surgery levels. When I woke from the operation it was gone, but first the numbness and then the pain started coming back, the numbness started in the hospital and the pain started in rehab. Rest doesn't necessarily alleviate it, sometimes it almost feels worse when I'm laying on my back for a couple of hours. I called Hillary who checked with Dr. Rand. During the operation, he felt he had cleared the canal for that nerve sufficiently not to need to remove the pedicle. He recommended going on Neurontin to try to ease the pain. One option is to hope that the Neurontin and time will allow the nerve to stop being irritated. The other is to get a myleogram to check more definitively; if the myleogram shows impingement, then he'd have to go back in to remove the pedicle. Psychologically I am not prepared for more surgery. I had tried Neurontin in the past with minimal relief and multiple bad side effects. Still, I'm willing to try that again over the more invasive option. For those who had neuropathic numbness/pain after the surgery and that problem eventually went away, I'd appreciate hearing about how long it took to do so. Thanks in advance.

[Guest guest]

Thanks . I appreciate the positive feedback. I'm only fused up to T6

right now, but given how my upper back has been feeling the six months before

surgery and the six weeks after, I wouldn't be surprised if I ended up needing

another scoliosis surgery in the future to bring the fusion up higher. I do

have a brace and I've worn it religiously, outside of bed, since it doesn't

bother me at all. As has been said so many times before, we're all different

and we all heal differently. I may be walking more sooner than some, but can't

lift as much as others. I wouldn't even dream of asking my surgeon about

driving myself yet - I can tell that my muscles aren't quite ready for that

stress; even though others have received the go ahead from their surgeons at

this stage in their recovery. I caught some flack in rehab for refusing to try

certain things when asked, but I pulled a back muscle on my first two attempts

to flush the toilet and I insisted on waiting at least two days after that

before trying it again or trying the stairs for the first time. The nurses at

rehab actually pushed the OT to get me to learn to flush earlier; I told the OT

that those nurses ought to be thankful I brought my own Easywipe wand with me or

they'd be wiping my bottom every time on top of flushing. The rehab was also

recalcitrant about having to help me put the brace on in bed before I stood up.

They insisted that NONE of Dr. Rand's patients ever needed to put the brace on

in bed and that they didn't even wear the brace just to go to the rest room. I

told them I didn't think it was unreasonable of me to expect them to follow my

surgeon's instructions especially if it made me feel like I was better supported

and less strained when pulling myself to a standing position. A few days later

another of Dr. Rand's patients arrived at rehab. She was someone who developed

severe scoliosis late in life, had surgery in March, and then needed emergency

surgery a few days after me. When I met her, her brace didn't fit her at all -

it was very loose - and she confirmed that she never wore it just to relieve

herself because it was just too much trouble. All I could think to myself was

that she may have brought the emergency surgery upon herself simply by not using

her brace properly.

>

> Beth,

>

> Finding new ways, with a new body and restrictions, is part and parcel in

getting through in the early days. You'll find tricks to get almost everything

done. What you said put me right back in that moment, and for me it's been 8

years.

>

> I'm wondering if you have a brace? I think maybe for me, that extra support,

even though I hated it every moment, did allow me some level of added support,

cause I was able to pick up say a gallon of milk without too much effort. I do

remember early on, how it was awful trying to get dishes into the bottom rack of

the dishwasher, but I figured it out.

>

> I know exactly what you mean about toileting, early on it was awful, and I

used one of those tools, but I'm lucky I have pretty long arms, and found that

with time away, and I use those wet toileting wipes, they give me enough extra

reach that I get the job done well, but it took time to figure it out. Healing

also helps. I do miss the extra reach I had when I wasn't fused as high, when

after my first revision I was only fused to T5, and that added bit of open

verebrae, gave me a lot more function, than now after my second, and being fused

to T1. Still I manage really well, some things are frustrating, but in the scope

of things, I'm so much better, that the frustrating things are just that,

frustrating.

>

> As to the nerve pain, time and meds may give you the healing you need, only

time will show that. For some, it takes going back in a tweeking things. Just

know, and I've been there, that if more surgery is needed, it is worth it, even

though now, it just sounds like to much to endure. It will probably be FAR less

work, and you will pop back better and faster. I've had three post Harrington

surgeries, and while thats a lot, and one was completely unexpected, I got

through it, and am actually glad for all three, cause they got to where I am,

without the pain and doing well. So give the meds and healing some time, maybe

that nerve will quit firing up on it;'s own, but if not, you'll get through it,

more surgery can be a blessing, even though now it doesn't seem like it, it

worked for me.

>

> I'm glad the walking is going well, sounds like you are healing and seeing

improvement, all good.

>

> Wow, all this sure isn't for sissys hunh!

>

>

> Colorado Springs

> [ ] Update - Beth on Long Island - six weeks post op

>

>

>

> This week I noticed that I am moving with less twinging in the back, i.e.

when putting on socks or pulling up pants, all with aids of course. I still need

an aid to wipe/wash my privates, and given the ratio of my arms to my torso that

may very well be permanent. Today I was strong enough to get a half gallon

container out of the fridge and pour myself a drink. Last week I figured out how

to wash my hands without bending forward at the hips, which was never allowed at

rehab but which I hope to eventually be cleared to do, ala the retreat picture

of members taking a drink at the water fountain. I stand 90 degrees away from

the sink, and bend my knees until my hand can reach the handle. I soap and rinse

that hand and dry it with the towel I previously placed nearby. Then I turn 180

degrees and repeat with the other hand. Cumbersome, but sometimes hand sanitizer

just doesn't feel clean! Some days recently I've been able to walk a total of

two miles in half and/or whole mile increments. This week I noticed that it

doesn't twinge my back when I need to maneuver the walker over cracks in the

sidewalk. The only difficulty has been the neuropathic pain in my right foot. It

is almost back to pre-surgery levels. When I woke from the operation it was

gone, but first the numbness and then the pain started coming back, the numbness

started in the hospital and the pain started in rehab. Rest doesn't necessarily

alleviate it, sometimes it almost feels worse when I'm laying on my back for a

couple of hours. I called Hillary who checked with Dr. Rand. During the

operation, he felt he had cleared the canal for that nerve sufficiently not to

need to remove the pedicle. He recommended going on Neurontin to try to ease the

pain. One option is to hope that the Neurontin and time will allow the nerve to

stop being irritated. The other is to get a myleogram to check more

definitively; if the myleogram shows impingement, then he'd have to go back in

to remove the pedicle. Psychologically I am not prepared for more surgery. I had

tried Neurontin in the past with minimal relief and multiple bad side effects.

Still, I'm willing to try that again over the more invasive option. For those

who had neuropathic numbness/pain after the surgery and that problem eventually

went away, I'd appreciate hearing about how long it took to do so. Thanks in

advance.

>

[Guest guest]

Beth...

When I had my surgery, I was religious about putting my brace on every time I

sat up.... for about a month or two. Then, I realized that if I could shower

without it, I could certainly go to the bathroom without it. The purpose of the

brace is really to remind the patient not to bend or twist. If you pay

attention to body mechanics, I personally think that the brace is unnecessary

for short trips to the washroom.

--

> >

> > Beth,

> >

> > Finding new ways, with a new body and restrictions, is part and parcel in

getting through in the early days. You'll find tricks to get almost everything

done. What you said put me right back in that moment, and for me it's been 8

years.

> >

> > I'm wondering if you have a brace? I think maybe for me, that extra support,

even though I hated it every moment, did allow me some level of added support,

cause I was able to pick up say a gallon of milk without too much effort. I do

remember early on, how it was awful trying to get dishes into the bottom rack of

the dishwasher, but I figured it out.

> >

> > I know exactly what you mean about toileting, early on it was awful, and I

used one of those tools, but I'm lucky I have pretty long arms, and found that

with time away, and I use those wet toileting wipes, they give me enough extra

reach that I get the job done well, but it took time to figure it out. Healing

also helps. I do miss the extra reach I had when I wasn't fused as high, when

after my first revision I was only fused to T5, and that added bit of open

verebrae, gave me a lot more function, than now after my second, and being fused

to T1. Still I manage really well, some things are frustrating, but in the scope

of things, I'm so much better, that the frustrating things are just that,

frustrating.

> >

> > As to the nerve pain, time and meds may give you the healing you need, only

time will show that. For some, it takes going back in a tweeking things. Just

know, and I've been there, that if more surgery is needed, it is worth it, even

though now, it just sounds like to much to endure. It will probably be FAR less

work, and you will pop back better and faster. I've had three post Harrington

surgeries, and while thats a lot, and one was completely unexpected, I got

through it, and am actually glad for all three, cause they got to where I am,

without the pain and doing well. So give the meds and healing some time, maybe

that nerve will quit firing up on it;'s own, but if not, you'll get through it,

more surgery can be a blessing, even though now it doesn't seem like it, it

worked for me.

> >

> > I'm glad the walking is going well, sounds like you are healing and seeing

improvement, all good.

> >

> > Wow, all this sure isn't for sissys hunh!

> >

> >

> > Colorado Springs

> > [ ] Update - Beth on Long Island - six weeks post

op

> >

> >

> >

> > This week I noticed that I am moving with less twinging in the back, i.e.

when putting on socks or pulling up pants, all with aids of course. I still need

an aid to wipe/wash my privates, and given the ratio of my arms to my torso that

may very well be permanent. Today I was strong enough to get a half gallon

container out of the fridge and pour myself a drink. Last week I figured out how

to wash my hands without bending forward at the hips, which was never allowed at

rehab but which I hope to eventually be cleared to do, ala the retreat picture

of members taking a drink at the water fountain. I stand 90 degrees away from

the sink, and bend my knees until my hand can reach the handle. I soap and rinse

that hand and dry it with the towel I previously placed nearby. Then I turn 180

degrees and repeat with the other hand. Cumbersome, but sometimes hand sanitizer

just doesn't feel clean! Some days recently I've been able to walk a total of

two miles in half and/or whole mile increments. This week I noticed that it

doesn't twinge my back when I need to maneuver the walker over cracks in the

sidewalk. The only difficulty has been the neuropathic pain in my right foot. It

is almost back to pre-surgery levels. When I woke from the operation it was

gone, but first the numbness and then the pain started coming back, the numbness

started in the hospital and the pain started in rehab. Rest doesn't necessarily

alleviate it, sometimes it almost feels worse when I'm laying on my back for a

couple of hours. I called Hillary who checked with Dr. Rand. During the

operation, he felt he had cleared the canal for that nerve sufficiently not to

need to remove the pedicle. He recommended going on Neurontin to try to ease the

pain. One option is to hope that the Neurontin and time will allow the nerve to

stop being irritated. The other is to get a myleogram to check more

definitively; if the myleogram shows impingement, then he'd have to go back in

to remove the pedicle. Psychologically I am not prepared for more surgery. I had

tried Neurontin in the past with minimal relief and multiple bad side effects.

Still, I'm willing to try that again over the more invasive option. For those

who had neuropathic numbness/pain after the surgery and that problem eventually

went away, I'd appreciate hearing about how long it took to do so. Thanks in

advance.

> >

>

[Guest guest]

Beth,

Braces come in differing forms, mine was a TLSO, and there was no way I could go to the toilet with it on, maybe others could, but I had to take it off. I wasn't required to wear it to shower or to the bathroom, or while sleeping. My brace maker said it should always be put on laying down, that you could get a tighter fit that way, I never was able to manage that, I put it on either sitting or upright. I wore mine with a man T-shirt underneath, and wore a light shirt over it, or just wore it exposed, as peri-menopause hit after surgery, and with the hot flashes extra clothing was awfully hot with all that plastic( basically a soft plastic cast from hips to above the breasts).

How are you going about flushing and wiping? Are you trying to do it sitting? Standing may give you extra reach. Then to flush you can bend your knee enough to accomplish it just fine.

Ugh, all of this is cumbersome, and different, and plain not the same, but know it does get better and easier with time. For now, you just deal, especially while your fusions are firming up, follow protocol and it always will serve you well. After your fusions are solid, you will find tricks to deal with all this.I'm 8 years out from all this, and yes it gets better, I'm still finding ways to move better, and having improvements in moving, yes all this time later. I still feel like I have a board strapped to my back, but I deal with it better, and other areas compensate for it. I remember when every daily chore seemed a challenge, now I do so much, that very few know I'm a fused as I am when watching me, or if they do know, they are amazed at what I do on a daily basis.

Do know that some surgeons don't require braces at all, mine loves them, and it does remind you to keep good form, and between my 3 post Harrington Surgeries that happened in two calendar years( between 2000 and 2002) I wore that brace for a year total, 3 months with two of the surgeries each time, and for six months with the other. So I'm a brace pro. I HATED it with a purple passion. Others seem to find them comforting, to me, it was plain awful, and it was such a relief to be rid of it each time.

I know all of this just is ugly and cumbersome, but it serves a purpose, and it really is a blip in time, memories of all this fade, and life moves on, for me the memories only come up when I'm asked something, or someone brings up a stage in their recovery, then and only then do I remember. So know in time, it gets better to the point, that it's only a memory.

Hang in there, time will be your friend, right now, you just want to get back to life, but know it happens, just go with the healing flow, it's important work, probably the most important thing you will do, let that surgery gel and get those fusions strong, and all the other stuff will get better with time. Hard to hear but true.

Hugs,

Colorado Springs

[ ] Update - Beth on Long Island - six weeks post op> > > > > > > > This week I noticed that I am moving with less twinging in the back, i.e. when putting on socks or pulling up pants, all with aids of course. I still need an aid to wipe/wash my privates, and given the ratio of my arms to my torso that may very well be permanent. Today I was strong enough to get a half gallon container out of the fridge and pour myself a drink. Last week I figured out how to wash my hands without bending forward at the hips, which was never allowed at rehab but which I hope to eventually be cleared to do, ala the retreat picture of members taking a drink at the water fountain. I stand 90 degrees away from the sink, and bend my knees until my hand can reach the handle. I soap and rinse that hand and dry it with the towel I previously placed nearby. Then I turn 180 degrees and repeat with the other hand. Cumbersome, but sometimes hand sanitizer just doesn't feel clean! Some days recently I've been able to walk a total of two miles in half and/or whole mile increments. This week I noticed that it doesn't twinge my back when I need to maneuver the walker over cracks in the sidewalk. The only difficulty has been the neuropathic pain in my right foot. It is almost back to pre-surgery levels. When I woke from the operation it was gone, but first the numbness and then the pain started coming back, the numbness started in the hospital and the pain started in rehab. Rest doesn't necessarily alleviate it, sometimes it almost feels worse when I'm laying on my back for a couple of hours. I called Hillary who checked with Dr. Rand. During the operation, he felt he had cleared the canal for that nerve sufficiently not to need to remove the pedicle. He recommended going on Neurontin to try to ease the pain. One option is to hope that the Neurontin and time will allow the nerve to stop being irritated. The other is to get a myleogram to check more definitively; if the myleogram shows impingement, then he'd have to go back in to remove the pedicle. Psychologically I am not prepared for more surgery. I had tried Neurontin in the past with minimal relief and multiple bad side effects. Still, I'm willing to try that again over the more invasive option. For those who had neuropathic numbness/pain after the surgery and that problem eventually went away, I'd appreciate hearing about how long it took to do so. Thanks in advance.> >>

[Guest guest]

That is actually my instruction with short bathroom runs with my brace. I even

double-checked yesterday with Dr. Glazer. He said EXACTLY what has just

said. The brace is just a " friendly reminder " about body mechanics during the

healing process - ESPECIALLY fo the first few months. As the man I met yesterday

who refitted my brace due to wieght loss said, " get into the mindset that your

brace is not your enemy, but your friend. Learn to love it rather than hate it,

and it will be all that much more easier to adjust to " . I understand his point,

so I guess I have a new friend!! Ha! Ha!

D (RI)

> > >

> > > Beth,

> > >

> > > Finding new ways, with a new body and restrictions, is part and parcel in

getting through in the early days. You'll find tricks to get almost everything

done. What you said put me right back in that moment, and for me it's been 8

years.

> > >

> > > I'm wondering if you have a brace? I think maybe for me, that extra

support, even though I hated it every moment, did allow me some level of added

support, cause I was able to pick up say a gallon of milk without too much

effort. I do remember early on, how it was awful trying to get dishes into the

bottom rack of the dishwasher, but I figured it out.

> > >

> > > I know exactly what you mean about toileting, early on it was awful, and I

used one of those tools, but I'm lucky I have pretty long arms, and found that

with time away, and I use those wet toileting wipes, they give me enough extra

reach that I get the job done well, but it took time to figure it out. Healing

also helps. I do miss the extra reach I had when I wasn't fused as high, when

after my first revision I was only fused to T5, and that added bit of open

verebrae, gave me a lot more function, than now after my second, and being fused

to T1. Still I manage really well, some things are frustrating, but in the scope

of things, I'm so much better, that the frustrating things are just that,

frustrating.

> > >

> > > As to the nerve pain, time and meds may give you the healing you need,

only time will show that. For some, it takes going back in a tweeking things.

Just know, and I've been there, that if more surgery is needed, it is worth it,

even though now, it just sounds like to much to endure. It will probably be FAR

less work, and you will pop back better and faster. I've had three post

Harrington surgeries, and while thats a lot, and one was completely unexpected,

I got through it, and am actually glad for all three, cause they got to where I

am, without the pain and doing well. So give the meds and healing some time,

maybe that nerve will quit firing up on it;'s own, but if not, you'll get

through it, more surgery can be a blessing, even though now it doesn't seem like

it, it worked for me.

> > >

> > > I'm glad the walking is going well, sounds like you are healing and seeing

improvement, all good.

> > >

> > > Wow, all this sure isn't for sissys hunh!

> > >

> > >

> > > Colorado Springs

> > > [ ] Update - Beth on Long Island - six weeks

post op

> > >

> > >

> > >

> > > This week I noticed that I am moving with less twinging in the back,

i.e. when putting on socks or pulling up pants, all with aids of course. I still

need an aid to wipe/wash my privates, and given the ratio of my arms to my torso

that may very well be permanent. Today I was strong enough to get a half gallon

container out of the fridge and pour myself a drink. Last week I figured out how

to wash my hands without bending forward at the hips, which was never allowed at

rehab but which I hope to eventually be cleared to do, ala the retreat picture

of members taking a drink at the water fountain. I stand 90 degrees away from

the sink, and bend my knees until my hand can reach the handle. I soap and rinse

that hand and dry it with the towel I previously placed nearby. Then I turn 180

degrees and repeat with the other hand. Cumbersome, but sometimes hand sanitizer

just doesn't feel clean! Some days recently I've been able to walk a total of

two miles in half and/or whole mile increments. This week I noticed that it

doesn't twinge my back when I need to maneuver the walker over cracks in the

sidewalk. The only difficulty has been the neuropathic pain in my right foot. It

is almost back to pre-surgery levels. When I woke from the operation it was

gone, but first the numbness and then the pain started coming back, the numbness

started in the hospital and the pain started in rehab. Rest doesn't necessarily

alleviate it, sometimes it almost feels worse when I'm laying on my back for a

couple of hours. I called Hillary who checked with Dr. Rand. During the

operation, he felt he had cleared the canal for that nerve sufficiently not to

need to remove the pedicle. He recommended going on Neurontin to try to ease the

pain. One option is to hope that the Neurontin and time will allow the nerve to

stop being irritated. The other is to get a myleogram to check more

definitively; if the myleogram shows impingement, then he'd have to go back in

to remove the pedicle. Psychologically I am not prepared for more surgery. I had

tried Neurontin in the past with minimal relief and multiple bad side effects.

Still, I'm willing to try that again over the more invasive option. For those

who had neuropathic numbness/pain after the surgery and that problem eventually

went away, I'd appreciate hearing about how long it took to do so. Thanks in

advance.

> > >

> >

>

[Guest guest]

Hi ,

Even though I am in the VERY beginning of healing, your words already ring

true. After 3 post Harrington surgeries myself (all within 3 months might I add

and having to wear the brace after surgery #1 for 5 weeks before surgery #2!)

your post confirmed things. I too have a TLSO and I agree that there is no way I

can go to the bathroom with it (although I have found wearing elastic

waistbanded shorts does allow doing so a little easier so that you don't have to

take the time to take the darn thing off and then bother to put it back on

again!!). I agree it is cumbersome and everything at this point is just crazy,

but I am sure that one day in the future, this too will all be a blip in time.

D (RI)

> > >

> > > Beth,

> > >

> > > Finding new ways, with a new body and restrictions, is part and parcel

in getting through in the early days. You'll find tricks to get almost

everything done. What you said put me right back in that moment, and for me it's

been 8 years.

> > >

> > > I'm wondering if you have a brace? I think maybe for me, that extra

support, even though I hated it every moment, did allow me some level of added

support, cause I was able to pick up say a gallon of milk without too much

effort. I do remember early on, how it was awful trying to get dishes into the

bottom rack of the dishwasher, but I figured it out.

> > >

> > > I know exactly what you mean about toileting, early on it was awful, and

I used one of those tools, but I'm lucky I have pretty long arms, and found that

with time away, and I use those wet toileting wipes, they give me enough extra

reach that I get the job done well, but it took time to figure it out. Healing

also helps. I do miss the extra reach I had when I wasn't fused as high, when

after my first revision I was only fused to T5, and that added bit of open

verebrae, gave me a lot more function, than now after my second, and being fused

to T1. Still I manage really well, some things are frustrating, but in the scope

of things, I'm so much better, that the frustrating things are just that,

frustrating.

> > >

> > > As to the nerve pain, time and meds may give you the healing you need,

only time will show that. For some, it takes going back in a tweeking things.

Just know, and I've been there, that if more surgery is needed, it is worth it,

even though now, it just sounds like to much to endure. It will probably be FAR

less work, and you will pop back better and faster. I've had three post

Harrington surgeries, and while thats a lot, and one was completely unexpected,

I got through it, and am actually glad for all three, cause they got to where I

am, without the pain and doing well. So give the meds and healing some time,

maybe that nerve will quit firing up on it;'s own, but if not, you'll get

through it, more surgery can be a blessing, even though now it doesn't seem like

it, it worked for me.

> > >

> > > I'm glad the walking is going well, sounds like you are healing and

seeing improvement, all good.

> > >

> > > Wow, all this sure isn't for sissys hunh!

> > >

> > >

> > > Colorado Springs

> > > [ ] Update - Beth on Long Island - six weeks

post op

> > >

> > >

> > >

> > > This week I noticed that I am moving with less twinging in the back,

i.e. when putting on socks or pulling up pants, all with aids of course. I still

need an aid to wipe/wash my privates, and given the ratio of my arms to my torso

that may very well be permanent. Today I was strong enough to get a half gallon

container out of the fridge and pour myself a drink. Last week I figured out how

to wash my hands without bending forward at the hips, which was never allowed at

rehab but which I hope to eventually be cleared to do, ala the retreat picture

of members taking a drink at the water fountain. I stand 90 degrees away from

the sink, and bend my knees until my hand can reach the handle. I soap and rinse

that hand and dry it with the towel I previously placed nearby. Then I turn 180

degrees and repeat with the other hand. Cumbersome, but sometimes hand sanitizer

just doesn't feel clean! Some days recently I've been able to walk a total of

two miles in half and/or whole mile increments. This week I noticed that it

doesn't twinge my back when I need to maneuver the walker over cracks in the

sidewalk. The only difficulty has been the neuropathic pain in my right foot. It

is almost back to pre-surgery levels. When I woke from the operation it was

gone, but first the numbness and then the pain started coming back, the numbness

started in the hospital and the pain started in rehab. Rest doesn't necessarily

alleviate it, sometimes it almost feels worse when I'm laying on my back for a

couple of hours. I called Hillary who checked with Dr. Rand. During the

operation, he felt he had cleared the canal for that nerve sufficiently not to

need to remove the pedicle. He recommended going on Neurontin to try to ease the

pain. One option is to hope that the Neurontin and time will allow the nerve to

stop being irritated. The other is to get a myleogram to check more

definitively; if the myleogram shows impingement, then he'd have to go back in

to remove the pedicle. Psychologically I am not prepared for more surgery. I had

tried Neurontin in the past with minimal relief and multiple bad side effects.

Still, I'm willing to try that again over the more invasive option. For those

who had neuropathic numbness/pain after the surgery and that problem eventually

went away, I'd appreciate hearing about how long it took to do so. Thanks in

advance.

> > >

> >

>

[Guest guest]

I have a Jewett brace, like what Robin Vita has in her photos. The guy who

fitted me said to put it on in bed in the hospital, but not wear it in bed, and

to wear it always outside of bed. Now that I'm home, I put it on after I've sat

up - but it really did help prevent me from twisting while sitting up in the

hospital and rehab when my arms and legs were still so weak; I felt like I was

twisting the few times that the nurses and OT in the hospital refused to put it

on while I was still in bed. I had to confirm with Dr. Rand (through his

assistant and the nurses that, yes, the fitter's instructions were correct.)

Yes, I sweat a lot under the three support plates. I have to change my t-shirt

after every walk because they get so wet from sweat - we're had hotter than

usual weather on Long Island lately. I still need it to tell me to not move the

wrong way during the day. When I was constipated it helped prevent me from

bending during pushing. It also prevents me from bending forward when I sneeze.

To wipe I stand up and do a plie with my torso perpendicular to the floor. It

doesn't go in the shower, so I'm extra cautious in there.

> > >

> > > Beth,

> > >

> > > Finding new ways, with a new body and restrictions, is part and parcel

in getting through in the early days. You'll find tricks to get almost

everything done. What you said put me right back in that moment, and for me it's

been 8 years.

> > >

> > > I'm wondering if you have a brace? I think maybe for me, that extra

support, even though I hated it every moment, did allow me some level of added

support, cause I was able to pick up say a gallon of milk without too much

effort. I do remember early on, how it was awful trying to get dishes into the

bottom rack of the dishwasher, but I figured it out.

> > >

> > > I know exactly what you mean about toileting, early on it was awful, and

I used one of those tools, but I'm lucky I have pretty long arms, and found that

with time away, and I use those wet toileting wipes, they give me enough extra

reach that I get the job done well, but it took time to figure it out. Healing

also helps. I do miss the extra reach I had when I wasn't fused as high, when

after my first revision I was only fused to T5, and that added bit of open

verebrae, gave me a lot more function, than now after my second, and being fused

to T1. Still I manage really well, some things are frustrating, but in the scope

of things, I'm so much better, that the frustrating things are just that,

frustrating.

> > >

> > > As to the nerve pain, time and meds may give you the healing you need,

only time will show that. For some, it takes going back in a tweeking things.

Just know, and I've been there, that if more surgery is needed, it is worth it,

even though now, it just sounds like to much to endure. It will probably be FAR

less work, and you will pop back better and faster. I've had three post

Harrington surgeries, and while thats a lot, and one was completely unexpected,

I got through it, and am actually glad for all three, cause they got to where I

am, without the pain and doing well. So give the meds and healing some time,

maybe that nerve will quit firing up on it;'s own, but if not, you'll get

through it, more surgery can be a blessing, even though now it doesn't seem like

it, it worked for me.

> > >

> > > I'm glad the walking is going well, sounds like you are healing and

seeing improvement, all good.

> > >

> > > Wow, all this sure isn't for sissys hunh!

> > >

> > >

> > > Colorado Springs

> > > [ ] Update - Beth on Long Island - six weeks

post op

> > >

> > >

> > >

> > > This week I noticed that I am moving with less twinging in the back,

i.e. when putting on socks or pulling up pants, all with aids of course. I still

need an aid to wipe/wash my privates, and given the ratio of my arms to my torso

that may very well be permanent. Today I was strong enough to get a half gallon

container out of the fridge and pour myself a drink. Last week I figured out how

to wash my hands without bending forward at the hips, which was never allowed at

rehab but which I hope to eventually be cleared to do, ala the retreat picture

of members taking a drink at the water fountain. I stand 90 degrees away from

the sink, and bend my knees until my hand can reach the handle. I soap and rinse

that hand and dry it with the towel I previously placed nearby. Then I turn 180

degrees and repeat with the other hand. Cumbersome, but sometimes hand sanitizer

just doesn't feel clean! Some days recently I've been able to walk a total of

two miles in half and/or whole mile increments. This week I noticed that it

doesn't twinge my back when I need to maneuver the walker over cracks in the

sidewalk. The only difficulty has been the neuropathic pain in my right foot. It

is almost back to pre-surgery levels. When I woke from the operation it was

gone, but first the numbness and then the pain started coming back, the numbness

started in the hospital and the pain started in rehab. Rest doesn't necessarily

alleviate it, sometimes it almost feels worse when I'm laying on my back for a

couple of hours. I called Hillary who checked with Dr. Rand. During the

operation, he felt he had cleared the canal for that nerve sufficiently not to

need to remove the pedicle. He recommended going on Neurontin to try to ease the

pain. One option is to hope that the Neurontin and time will allow the nerve to

stop being irritated. The other is to get a myleogram to check more

definitively; if the myleogram shows impingement, then he'd have to go back in

to remove the pedicle. Psychologically I am not prepared for more surgery. I had

tried Neurontin in the past with minimal relief and multiple bad side effects.

Still, I'm willing to try that again over the more invasive option. For those

who had neuropathic numbness/pain after the surgery and that problem eventually

went away, I'd appreciate hearing about how long it took to do so. Thanks in

advance.

> > >

> >

>

[Guest guest]

To flush, I have to stand sideways directly next to the handle and push straight

down with my dressing stick. I hurt myself in rehab with the OT/PT when I tried

to use the handle of my grabber as a lever to push down on the handle.

> > > >

> > > > Beth,

> > > >

> > > > Finding new ways, with a new body and restrictions, is part and parcel

in getting through in the early days. You'll find tricks to get almost

everything done. What you said put me right back in that moment, and for me it's

been 8 years.

> > > >

> > > > I'm wondering if you have a brace? I think maybe for me, that extra

support, even though I hated it every moment, did allow me some level of added

support, cause I was able to pick up say a gallon of milk without too much

effort. I do remember early on, how it was awful trying to get dishes into the

bottom rack of the dishwasher, but I figured it out.

> > > >

> > > > I know exactly what you mean about toileting, early on it was awful,

and I used one of those tools, but I'm lucky I have pretty long arms, and found

that with time away, and I use those wet toileting wipes, they give me enough

extra reach that I get the job done well, but it took time to figure it out.

Healing also helps. I do miss the extra reach I had when I wasn't fused as high,

when after my first revision I was only fused to T5, and that added bit of open

verebrae, gave me a lot more function, than now after my second, and being fused

to T1. Still I manage really well, some things are frustrating, but in the scope

of things, I'm so much better, that the frustrating things are just that,

frustrating.

> > > >

> > > > As to the nerve pain, time and meds may give you the healing you need,

only time will show that. For some, it takes going back in a tweeking things.

Just know, and I've been there, that if more surgery is needed, it is worth it,

even though now, it just sounds like to much to endure. It will probably be FAR

less work, and you will pop back better and faster. I've had three post

Harrington surgeries, and while thats a lot, and one was completely unexpected,

I got through it, and am actually glad for all three, cause they got to where I

am, without the pain and doing well. So give the meds and healing some time,

maybe that nerve will quit firing up on it;'s own, but if not, you'll get

through it, more surgery can be a blessing, even though now it doesn't seem like

it, it worked for me.

> > > >

> > > > I'm glad the walking is going well, sounds like you are healing and

seeing improvement, all good.

> > > >

> > > > Wow, all this sure isn't for sissys hunh!

> > > >

> > > >

> > > > Colorado Springs

> > > > [ ] Update - Beth on Long Island - six weeks

post op

> > > >

> > > >

> > > >

> > > > This week I noticed that I am moving with less twinging in the back,

i.e. when putting on socks or pulling up pants, all with aids of course. I still

need an aid to wipe/wash my privates, and given the ratio of my arms to my torso

that may very well be permanent. Today I was strong enough to get a half gallon

container out of the fridge and pour myself a drink. Last week I figured out how

to wash my hands without bending forward at the hips, which was never allowed at

rehab but which I hope to eventually be cleared to do, ala the retreat picture

of members taking a drink at the water fountain. I stand 90 degrees away from

the sink, and bend my knees until my hand can reach the handle. I soap and rinse

that hand and dry it with the towel I previously placed nearby. Then I turn 180

degrees and repeat with the other hand. Cumbersome, but sometimes hand sanitizer

just doesn't feel clean! Some days recently I've been able to walk a total of

two miles in half and/or whole mile increments. This week I noticed that it

doesn't twinge my back when I need to maneuver the walker over cracks in the

sidewalk. The only difficulty has been the neuropathic pain in my right foot. It

is almost back to pre-surgery levels. When I woke from the operation it was

gone, but first the numbness and then the pain started coming back, the numbness

started in the hospital and the pain started in rehab. Rest doesn't necessarily

alleviate it, sometimes it almost feels worse when I'm laying on my back for a

couple of hours. I called Hillary who checked with Dr. Rand. During the

operation, he felt he had cleared the canal for that nerve sufficiently not to

need to remove the pedicle. He recommended going on Neurontin to try to ease the

pain. One option is to hope that the Neurontin and time will allow the nerve to

stop being irritated. The other is to get a myleogram to check more

definitively; if the myleogram shows impingement, then he'd have to go back in

to remove the pedicle. Psychologically I am not prepared for more surgery. I had

tried Neurontin in the past with minimal relief and multiple bad side effects.

Still, I'm willing to try that again over the more invasive option. For those

who had neuropathic numbness/pain after the surgery and that problem eventually

went away, I'd appreciate hearing about how long it took to do so. Thanks in

advance.

> > > >

> > >

> >

>

[Guest guest]

Beth,

My numbness took many months to clear up. Some patches took about a year to

clear up. Luckily, I did not have to deal with pain with my numbness. I do

hope that things improve for you, and that you find some answers with Dr. Rand.

Congrats on the walking! Please continue to keep us updated!

>

> This week I noticed that I am moving with less twinging in the back, i.e. when

putting on socks or pulling up pants, all with aids of course. I still need an

aid to wipe/wash my privates, and given the ratio of my arms to my torso that

may very well be permanent. Today I was strong enough to get a half gallon

container out of the fridge and pour myself a drink. Last week I figured out

how to wash my hands without bending forward at the hips, which was never

allowed at rehab but which I hope to eventually be cleared to do, ala the

retreat picture of members taking a drink at the water fountain. I stand 90

degrees away from the sink, and bend my knees until my hand can reach the

handle. I soap and rinse that hand and dry it with the towel I previously

placed nearby. Then I turn 180 degrees and repeat with the other hand.

Cumbersome, but sometimes hand sanitizer just doesn't feel clean! Some days

recently I've been able to walk a total of two miles in half and/or whole mile

increments. This week I noticed that it doesn't twinge my back when I need to

maneuver the walker over cracks in the sidewalk. The only difficulty has been

the neuropathic pain in my right foot. It is almost back to pre-surgery levels.

When I woke from the operation it was gone, but first the numbness and then the

pain started coming back, the numbness started in the hospital and the pain

started in rehab. Rest doesn't necessarily alleviate it, sometimes it almost

feels worse when I'm laying on my back for a couple of hours. I called Hillary

who checked with Dr. Rand. During the operation, he felt he had cleared the

canal for that nerve sufficiently not to need to remove the pedicle. He

recommended going on Neurontin to try to ease the pain. One option is to hope

that the Neurontin and time will allow the nerve to stop being irritated. The

other is to get a myleogram to check more definitively; if the myleogram shows

impingement, then he'd have to go back in to remove the pedicle.

Psychologically I am not prepared for more surgery. I had tried Neurontin in

the past with minimal relief and multiple bad side effects. Still, I'm willing

to try that again over the more invasive option. For those who had neuropathic

numbness/pain after the surgery and that problem eventually went away, I'd

appreciate hearing about how long it took to do so. Thanks in advance.

>

[Guest guest]

Yes,

I second the notion that it takes time for the numbness to go away after

revision surgery to. For me it took a good 1 and a half years. Now I'm feeling

back up to speed and the majority of my numbness is gone. I amalmost 2 and a

half years post op from revision surgery.

Carol- NY (Also from Long island)

> >

> > This week I noticed that I am moving with less twinging in the back, i.e.

when putting on socks or pulling up pants, all with aids of course. I still

need an aid to wipe/wash my privates, and given the ratio of my arms to my torso

that may very well be permanent. Today I was strong enough to get a half gallon

container out of the fridge and pour myself a drink. Last week I figured out

how to wash my hands without bending forward at the hips, which was never

allowed at rehab but which I hope to eventually be cleared to do, ala the

retreat picture of members taking a drink at the water fountain. I stand 90

degrees away from the sink, and bend my knees until my hand can reach the

handle. I soap and rinse that hand and dry it with the towel I previously

placed nearby. Then I turn 180 degrees and repeat with the other hand.

Cumbersome, but sometimes hand sanitizer just doesn't feel clean! Some days

recently I've been able to walk a total of two miles in half and/or whole mile

increments. This week I noticed that it doesn't twinge my back when I need to

maneuver the walker over cracks in the sidewalk. The only difficulty has been

the neuropathic pain in my right foot. It is almost back to pre-surgery levels.

When I woke from the operation it was gone, but first the numbness and then the

pain started coming back, the numbness started in the hospital and the pain

started in rehab. Rest doesn't necessarily alleviate it, sometimes it almost

feels worse when I'm laying on my back for a couple of hours. I called Hillary

who checked with Dr. Rand. During the operation, he felt he had cleared the

canal for that nerve sufficiently not to need to remove the pedicle. He

recommended going on Neurontin to try to ease the pain. One option is to hope

that the Neurontin and time will allow the nerve to stop being irritated. The

other is to get a myleogram to check more definitively; if the myleogram shows

impingement, then he'd have to go back in to remove the pedicle.

Psychologically I am not prepared for more surgery. I had tried Neurontin in

the past with minimal relief and multiple bad side effects. Still, I'm willing

to try that again over the more invasive option. For those who had neuropathic

numbness/pain after the surgery and that problem eventually went away, I'd

appreciate hearing about how long it took to do so. Thanks in advance.

> >

>

[Guest guest]

Carol and --

Are you referring to numb patches on your back or neurological numbness/pain in

your toes? I've got plenty of patches on my back, but that doesn't bother me at

all. It's the tournequette feeling in my right foot, similar to what I had

before surgery, that's getting to me - especially at night when I have to lay

still and try to go to sleep.

--Beth

> > >

> > > This week I noticed that I am moving with less twinging in the back, i.e.

when putting on socks or pulling up pants, all with aids of course. I still

need an aid to wipe/wash my privates, and given the ratio of my arms to my torso

that may very well be permanent. Today I was strong enough to get a half gallon

container out of the fridge and pour myself a drink. Last week I figured out

how to wash my hands without bending forward at the hips, which was never

allowed at rehab but which I hope to eventually be cleared to do, ala the

retreat picture of members taking a drink at the water fountain. I stand 90

degrees away from the sink, and bend my knees until my hand can reach the

handle. I soap and rinse that hand and dry it with the towel I previously

placed nearby. Then I turn 180 degrees and repeat with the other hand.

Cumbersome, but sometimes hand sanitizer just doesn't feel clean! Some days

recently I've been able to walk a total of two miles in half and/or whole mile

increments. This week I noticed that it doesn't twinge my back when I need to

maneuver the walker over cracks in the sidewalk. The only difficulty has been

the neuropathic pain in my right foot. It is almost back to pre-surgery levels.

When I woke from the operation it was gone, but first the numbness and then the

pain started coming back, the numbness started in the hospital and the pain

started in rehab. Rest doesn't necessarily alleviate it, sometimes it almost

feels worse when I'm laying on my back for a couple of hours. I called Hillary

who checked with Dr. Rand. During the operation, he felt he had cleared the

canal for that nerve sufficiently not to need to remove the pedicle. He

recommended going on Neurontin to try to ease the pain. One option is to hope

that the Neurontin and time will allow the nerve to stop being irritated. The

other is to get a myleogram to check more definitively; if the myleogram shows

impingement, then he'd have to go back in to remove the pedicle.

Psychologically I am not prepared for more surgery. I had tried Neurontin in

the past with minimal relief and multiple bad side effects. Still, I'm willing

to try that again over the more invasive option. For those who had neuropathic

numbness/pain after the surgery and that problem eventually went away, I'd

appreciate hearing about how long it took to do so. Thanks in advance.

> > >

> >

>

[Guest guest]

Hi Beth,

Yes I was referring to numb " patches " on my back. Didn't have any problems with

my toes from what I remember.

> > > >

> > > > This week I noticed that I am moving with less twinging in the back,

i.e. when putting on socks or pulling up pants, all with aids of course. I

still need an aid to wipe/wash my privates, and given the ratio of my arms to my

torso that may very well be permanent. Today I was strong enough to get a half

gallon container out of the fridge and pour myself a drink. Last week I figured

out how to wash my hands without bending forward at the hips, which was never

allowed at rehab but which I hope to eventually be cleared to do, ala the

retreat picture of members taking a drink at the water fountain. I stand 90

degrees away from the sink, and bend my knees until my hand can reach the

handle. I soap and rinse that hand and dry it with the towel I previously

placed nearby. Then I turn 180 degrees and repeat with the other hand.

Cumbersome, but sometimes hand sanitizer just doesn't feel clean! Some days

recently I've been able to walk a total of two miles in half and/or whole mile

increments. This week I noticed that it doesn't twinge my back when I need to

maneuver the walker over cracks in the sidewalk. The only difficulty has been

the neuropathic pain in my right foot. It is almost back to pre-surgery levels.

When I woke from the operation it was gone, but first the numbness and then the

pain started coming back, the numbness started in the hospital and the pain

started in rehab. Rest doesn't necessarily alleviate it, sometimes it almost

feels worse when I'm laying on my back for a couple of hours. I called Hillary

who checked with Dr. Rand. During the operation, he felt he had cleared the

canal for that nerve sufficiently not to need to remove the pedicle. He

recommended going on Neurontin to try to ease the pain. One option is to hope

that the Neurontin and time will allow the nerve to stop being irritated. The

other is to get a myleogram to check more definitively; if the myleogram shows

impingement, then he'd have to go back in to remove the pedicle.

Psychologically I am not prepared for more surgery. I had tried Neurontin in

the past with minimal relief and multiple bad side effects. Still, I'm willing

to try that again over the more invasive option. For those who had neuropathic

numbness/pain after the surgery and that problem eventually went away, I'd

appreciate hearing about how long it took to do so. Thanks in advance.

> > > >

> > >

> >

>