New member

[Guest guest]

Hi ! It always pains me to have to welcome new

people to this list, but I am thrilled that we were

here for you to find! This disorder can leave one

feeling very lonely and isolated.

I'm 38. I'm one of the co-owners of the list. I was

born with SBO, lipomyelomeningocele, and a hemangioma

on my lower back/butt. I didn't know I had SBO or the

lipoma until I was 14, so many of my childhood years

were spent thinking I was lazy because I couldn't keep

up with everyone else. And also because I peed my

pants a lot. Finding out I had a reason for those

things was liberating.

I had a baby at 17, surgery at 20 because the arches

of my feet were really high and I had some numbness, a

baby at 23, another baby at 24, surgery again at 30.

The second surgery was due to pain and weakness. The

pain went away for about 6 months, then I lifted

something heavy at work, and it came back with a

vengeance. I've had pain ever since (it's been almost

8 years). I've taken gabapentin (Neurontin) and

Topomax, amitriptyline and nortriptyline. Neurontin

worked, amitriptyline worked. Both had side effects I

couldn't live with long-term. I had injections in my

spine that worked for awhile.

Now I take tramadol at night, sometimes during the

day. The pain is much worse at night, and I can

ignore it most of the time during the day. It's

annoying. I know there are people on the list with

pumps and other things they do for pain. Hopefully

they can be more help to you.

Welcome and I'm glad you found us!

--- Filipi wrote:

> Dear Friends,

>

> Hi. I am happy to finally find a group for TCS

> people. I am a 32 year old mother of a two year old

> and nurse. I was born with spinal bifida which was

> repaired at age two. Thankfully, the only major

> impairment left from S.B. was a neurogenic bladder

> and minor kidney damage. I have lived a full and

> active life until recently. A few months prior to

> my surgery I developed lower back pain and the

> feeling that I was going to loose bladder control

> and some weakness to my right leg. After visiting

> the neurosurgeon, we agreed surgery to untether my

> spinal cord was the best option. On January 16th I

> had the surgery. It was much more involved than he

> planned. I had quite a bit of scarring to my nerves

> that fed my lower extremities. He had to " detangle

> most of my nerves and cut the scar tissue away " .

> Finally he was able to detether my cord. After

> three weeks in the hospital and rehab, I returned

> home to my wonderful son and husband.

>

> I am feel extremely blessed not to be paralyzed.

> However, I am trying to learn how to live with the

> after affects of surgery and TCS. I take Lyrica and

> Cymbalta for the neuropathy (numbness) in my feet.

> And I continue to have moderate to severe lower back

> pain. Even months after surgery.... worse than

> before surgery. I am having to take Vicodan/Norco

> for the pain. I hate having to take pain meds but

> the pain can be so intense at times. I wanted to

> know if others have had this problem. My fear is

> that I have retethered. I want to return to my job

> as a nurse, but it is a physical and demanding job.

> I am not sure that my back can handle it.

>

> Is there anyone who has had a similar situation.

> Every situation is different but there might be

> someone with a bit of advice. Thank you to those

> who developed this group. I was searching for

> something like this and finally found it.

> Thanks!!!!!

>

> Peace,

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

,

Thanks so much for the knd response. It has given me comfort that I know there

are others that have experieced some similar experiences. What a blessing to

have three beautiful children. We have one little boy who is about to turn

three in Sept. He is such a joy. We were planning to have more children when

all of this occured. So we will wait and see what God has in store for us.

Did you ever have your cord detethered? And if so is that when you had high

arches/and or club feet. I was wondering because ever since my surgery my calve

muscle barely contract and my feet are beginng to feel weaker??? I don't know I

might be crazy or maybe it is because I can't fell them very well now with the

neuropathy,

Well again thanks for taking the courage to develop this web site that

apparently has helped so many.

Peace,

Re: New Member

Hi ! It always pains me to have to welcome new

people to this list, but I am thrilled that we were

here for you to find! This disorder can leave one

feeling very lonely and isolated.

I'm 38. I'm one of the co-owners of the list. I was

born with SBO, lipomyelomeningocele, and a hemangioma

on my lower back/butt. I didn't know I had SBO or the

lipoma until I was 14, so many of my childhood years

were spent thinking I was lazy because I couldn't keep

up with everyone else. And also because I peed my

pants a lot. Finding out I had a reason for those

things was liberating.

I had a baby at 17, surgery at 20 because the arches

of my feet were really high and I had some numbness, a

baby at 23, another baby at 24, surgery again at 30.

The second surgery was due to pain and weakness. The

pain went away for about 6 months, then I lifted

something heavy at work, and it came back with a

vengeance. I've had pain ever since (it's been almost

8 years). I've taken gabapentin (Neurontin) and

Topomax, amitriptyline and nortriptyline. Neurontin

worked, amitriptyline worked. Both had side effects I

couldn't live with long-term. I had injections in my

spine that worked for awhile.

Now I take tramadol at night, sometimes during the

day. The pain is much worse at night, and I can

ignore it most of the time during the day. It's

annoying. I know there are people on the list with

pumps and other things they do for pain. Hopefully

they can be more help to you.

Welcome and I'm glad you found us!

--- Filipi wrote:

> Dear Friends,

>

> Hi. I am happy to finally find a group for TCS

> people. I am a 32 year old mother of a two year old

> and nurse. I was born with spinal bifida which was

> repaired at age two. Thankfully, the only major

> impairment left from S.B. was a neurogenic bladder

> and minor kidney damage. I have lived a full and

> active life until recently. A few months prior to

> my surgery I developed lower back pain and the

> feeling that I was going to loose bladder control

> and some weakness to my right leg. After visiting

> the neurosurgeon, we agreed surgery to untether my

> spinal cord was the best option. On January 16th I

> had the surgery. It was much more involved than he

> planned. I had quite a bit of scarring to my nerves

> that fed my lower extremities. He had to " detangle

> most of my nerves and cut the scar tissue away " .

> Finally he was able to detether my cord. After

> three weeks in the hospital and rehab, I returned

> home to my wonderful son and husband.

>

> I am feel extremely blessed not to be paralyzed.

> However, I am trying to learn how to live with the

> after affects of surgery and TCS. I take Lyrica and

> Cymbalta for the neuropathy (numbness) in my feet.

> And I continue to have moderate to severe lower back

> pain. Even months after surgery.... worse than

> before surgery. I am having to take Vicodan/Norco

> for the pain. I hate having to take pain meds but

> the pain can be so intense at times. I wanted to

> know if others have had this problem. My fear is

> that I have retethered. I want to return to my job

> as a nurse, but it is a physical and demanding job.

> I am not sure that my back can handle it.

>

> Is there anyone who has had a similar situation.

> Every situation is different but there might be

> someone with a bit of advice. Thank you to those

> who developed this group. I was searching for

> something like this and finally found it.

> Thanks!!!!!

>

> Peace,

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Actually, I have four children. My youngest is 2 and a

half - he will turn three in October! I had a

c-section with him, and so far, his birth is the only

one that didn't cause me problems with my back/legs.

It is a blessing to have children. My daughter moved

to Wyoming in April to work at Yellowstone and I miss

her terribly! The little guy is a lot of fun, and a

lot of work. They are so much fun when they are

pre-school age, but dang, I just don't have the energy

to keep up with him anymore!

I was detethered twice. The first surgery was for the

high arches. It helped a lot. The second surgery was

for pain in my legs. It didn't do much at all for

that. My leg muscles are lax, to say the least.

Floppy is much closer! I have very weak legs and

feet.

This condition begs for support! It's so bizarre and

different for everyone. It's nice to have a meeting

place to talk things through.

--- Filipi wrote:

> ,

>

> Thanks so much for the knd response. It has given

> me comfort that I know there are others that have

> experieced some similar experiences. What a

> blessing to have three beautiful children. We have

> one little boy who is about to turn three in Sept.

> He is such a joy. We were planning to have more

> children when all of this occured. So we will wait

> and see what God has in store for us.

>

> Did you ever have your cord detethered? And if so

> is that when you had high arches/and or club feet.

> I was wondering because ever since my surgery my

> calve muscle barely contract and my feet are beginng

> to feel weaker??? I don't know I might be crazy or

> maybe it is because I can't fell them very well now

> with the neuropathy,

>

> Well again thanks for taking the courage to develop

> this web site that apparently has helped so many.

>

> Peace,

>

> ----- Original Messag

__________________________________________________

[Guest guest]

Welcome Sonny. I'm sure sorry you have bronch so bad. Kadi

>

>Reply-To: bronchiectasis

>To: bronchiectasis

>Subject: new member

>Date: Wed, 05 Jul 2006 19:55:10 GMT

>

>Hello All,

> I'm Sonny and I'm a newbie to bronchiectasis, a ct scan a couple of

>months ago showed bronchiectasis and a sputum sample turned up a protea

>infection. and was put on levaquin for 10 days. I have copd and am on 02 ,

>24/7 along with nebulizer and inhalers , copd diagnosed about 3yr ago,

>started on 02 about a yr and 1/2 ago . I live in Massachusetts with my 3

>dogs, Teddy, Snoopy , and Hunter. Winters are cold and summer is rainy,

>hot and humid right now. I am no longer able to work , so I have retired .

> I get out and about and like to putter in my garden on a limited basis,

>but not to the extent that I used to. My activities have to be arranged

>around my medicine routine, as to when my breathing is at its good point.

>I use my exercise bike each day and am going to get a tread mill. I have

>been through rehab and know the importance of exercise. I struggle to

>maintain my weight and appetite . When I was at rehab I met only one other

>person who had the same weight issue as me. Now even when I have to go on

>prednisone burst, I don't get hungry like I use to, yet I know so many

>people have just the opposite problem and have to fight to not gain weight.

>I hope to be an active member of this group and to learn and grow from it.

>

> Sonny,

>

[Guest guest]

Welcome Sonny!!! I live near Peoria, IL with my 4 dogs!! I have mild

bronchiectasis with chronic bronchiolitis. Hope you find what you need

here.

Cook, Case Manager

UICOMP

One Illini Dr.

Peoria, IL 61656-1649

[Guest guest]

Welcome Sonny!

My name is and I also live with three dogs in very humid Cincinnati. I have mild bronch but see a difference with the increased humidity.

[Guest guest]

Dear Sonny,

Welcome to the group.

I have a Lhasa apso, Suzzy dog and a tabby cat,

Bonnie. Both provide wonderful companionship.

For almost 6-years I have been on 02. Amazing how fast

the time flies. My bronchiectaisis is considered

advanced and I am hoping to receive a double lung

transplant. My doctors think I have a variant of

cystic fibrosis that has lead to the development of

bronch. I also have asthma that flare-ups especially

during the hot and humid summer days. Today the air

seemed smoggy. Nova Scotia never used to get smog, but

now she blows in and often stays for a few days during

the summer.

Good-luck with your garden. We do not have one this

year, as it was so rainy and difficult to get one

started.

Best Wishes:0)

Liz in Nova Scotia, Canada

e-mail:maryholt12@... or lungsformary@...

Pre-Lung Transplant Journey - For updates please visit my carepage and leave a

message. Thank you!:0)

carepages.com name:maryelizabeth

) " Miracles happen with love..... " ..... Please support your local children's

hospital.... and " Give with all your might! "

http://iwkfoundation.org/

)Visit.... Children's Miracle Network.... http://www.cmn.org/ )

" I don't give in, I don't give up, and I don't take no for an answer. "

~Doris ~

__________________________________________________

[Guest guest]

Hi , The humidity sure is a bummer for me . I'm sure you must get as much pleasure from your three dogs as I do. They give so much love and ask for so little. When I fill my portable 02 tank, my Teddy , makes sure he is never out of eye sight and the look on his face says , don't forget you need me to accompany you, cause thats what best buddies are for. Of course he usually gets his way. Sonny,

[Guest guest]

I have just joined the group today so am writing to introduce myself. I

have had bi-lateral bronch since I was a baby, probably as a result of

having had Pink Disease, followed by repeated bouts of pneumonia etc. I

had a lobectomy in 1984 after which I was much better. Over the years

my condition has worsened and in 2003 I had to take ill-health

retirement. I also have chronic sinusitis, asthma and reflux problems -

pretty typical I believe.

Since January this year I have had lots of infections, mainly H Flu,

and have been pretty miserable-however,the most recent course of

Clarithromycin seems to have worked so I am enjoying the respite.

Moira

[Guest guest]

---

My son ph was born with a dimple on his lower back.We took an

mri at two weeks of age.the ns said the mri didnt show the lower

part of his spine (most inmportant part) so he couldnt tell, but

said his exam was normal so this was nothing to worry about and he

was a known ns in new york hospital so we let it go.

ph wasnt fully potty trained till about five years old and

walked on his toes.I took him to an ortho and they said this was

just herititary because my younger son was born with bilateral

clubfeet and just do stretches with him.

about a year ago he started to complain about pain in legs and he

couldnt walk more than a couple of blocks because of pain and

fatigue.

we took him to a ns in wpb florida where we reside now. the ns took

three mri's and found he has sbo,tethered cord,scolosis and a small

sryinx.

He had his surgery on 11/14 and is doing great,as far as back pain

and walking.

he still has pain in the legs and cant walk for too long.

the ns said he probaly needs leg surgery for the toe walking

( achilles tendon lenghting)which we will see the ortho next month.

In tetheredspinalcord , " DK Moulton "

wrote:

>

> Hi ,

>

> Sorry to hear about your son. What were his medical problems that

led to the untethering? How is he doing?

>

> Almost all of your symptoms could be related to a tether if that's

what you end up being dx'ed with, especially the bladder, back,

spasms, etc. When is your MRI?

>

> Kathy

> co-owner, co-moderator

> New Member

>

>

> Hi my name is and my eight year son just went for

untethering

> surgery two weeks ago.Thank god all is well with him.Now i will

be

> checked.

> My question is : Are the symptoms different for an adult?

> My symptoms are headaches,dizziness,tremor,back aches,cant lay

on left

> side(pain and numbness),incomplete emptiness of bladder,frequent

> urination and scolisis.

> Has anyone experienced these symptoms?

>

>

>

>

>

>