Re: I'm new here,and was wondering if anyone could help me

[Guest guest]

Hi Sharon,

Thank you so much for responding. I feel very much alone and afraid of what is

ahead waiting for me and my family.  I first starting feeling very week and

tired all the time.  I thought my thyroid was acting up and had blood tests,

and they came back normal. My pcp said stress and running after 2 young children

(2.5, 1.5 and 11) was taking its toll and to slow down and relax more.  Then I

started to have a lot of muscle pain and weakness in both legs, left more than

right, then it progressed to pain and numbness, weird sensations and lots of

random movements. I also have spina bifita occulta,and the patch of hair on my

lower back was getting longer and longer and the lower back pain was getting

worse. Then I started to develop lesions on my lower back and they would

break open and leak a clear discharge.  I thought they were pimples until they

wouldn't heal.  This had been going on for about 2 years off and on.  I also

lost some function of my bowel and bladder which I had contributed to having

children.  Then you know how sometimes something tells you there is something

just not right?  Well I decided to tell my pcp again what was going on and he

still said stress and pimples.  Then my hands and arms started going numb all

the time. The muscles in my arm felt all weak and squishy.  I had a nerve

conduction test done and they said I had a bad case of Carpal tunnel.  So I had

both hands done in Jan and March respectively.  When seeing the NS I told him

about the numbness and lesions on my lower back.  He unfortunately was not able

to help me as he only did hands and feet. So he sent me to my current NS and he

did a MRI and Cat Scan and told me that I had a tethered spinal cord.  He is

the leading Neurosurgeon in Pennsylvania and he heads the dept. of Neurology at

Allegheny General Hospital in Pittsburgh which is also one the the leading

hospitals in the country.  I have a team of 10 drs.  4 NS, a micro

neurosurgeon, a orthopedic surgeon, and a host of other drs. who have taken on

the challenge of detethering me.  I also have deformities of my spinal column

that have to be fixed prior to the detethering.  I had a consult with all drs

on my team and they have come up with a plan for the procedure. I have decided

to have the surgery to hopefully stop the progression of the damage.  They

feel that if I don't have the surgery that I will lose all function of my legs

and become a paraplegic. I have 3 young sons that need me to be mobile and that

is the main reason to do the surgery.  So I either take the risk and have a

chance at mobility or I don't have the surgery and become paralyzed within the

year.  So for me, I would rather have a choice and face the risk of

paralysis rather than not taking a chance and being paralyzed anyway.  So as I

see it, I'm damned if I do, and damned if I don't, but with surgery at least I

have a chance and a choice. Once again, thanks for writing and I hope to chat

with you again soon

Pam

I'm new here,and was wondering if anyone could help me

 

Hi,

My name is Pam and I am 44yrs old. I have been diagnosed with TSC. My surgery is

scheduled for April 16th. I am so scared and I have know idea what is going to

happen. I have a 3yr old, and was wondering if someone would please explain what

happens after surgery. My NS said that I would be " out of it " , for a month. That

I would have painful muscle spasms, and would not be able to do anything. I

understand that I won't be able to carry my son around, but what else can I

expect?

What can I expect after surgery?

Will I be able to walk up the steps?

Will i be able to take care of my son?

Will I be in a lot of pain?

Please, can someone help me? I am so scared of this surgery, but if i don't have

it done the dr. said i may become paralized.

Thanks Pam

Hi

[Guest guest]

Hey Pam...It cdertainly sounds as if you are making a well thought out

and wise decision. We make the best decisions we can at the time with people

we trust. Is there someone available to help you with your little ones for

the first weeks after surgery? Randee

In a message dated 4/12/2010 1:23:58 A.M. Central Daylight Time,

mamabug13@... writes:

Hi Sharon,

Thank you so much for responding. I feel very much alone and afraid of

what is ahead waiting for me and my family. I first starting feeling very

week and tired all the time. I thought my thyroid was acting up and had blood

tests, and they came back normal. My pcp said stress and running after 2

young children (2.5, 1.5 and 11) was taking its toll and to slow down and

relax more. Then I started to have a lot of muscle pain and weakness in both

legs, left more than right, then it progressed to pain and numbness, weird

sensations and lots of random movements. I also have spina bifita

occulta,and the patch of hair on my lower back was getting longer and longer

and

the lower back pain was getting worse. Then I started to develop lesions on

my lower back and they would break open and leak a clear discharge. I

thought they were pimples until they wouldn't heal. This had been going on for

about 2 years off and on. I also lost some function of my bowel and

bladder which I had contributed to having children. Then you know how

sometimes

something tells you there is something just not right? Well I decided to

tell my pcp again what was going on and he still said stress and pimples.

Then my hands and arms started going numb all the time. The muscles in my

arm felt all weak and squishy. I had a nerve conduction test done and they

said I had a bad case of Carpal tunnel. So I had both hands done in Jan

and March respectively. When seeing the NS I told him about the numbness and

lesions on my lower back. He unfortunately was not able to help me as he

only did hands and feet. So he sent me to my current NS and he did a MRI

and Cat Scan and told me that I had a tethered spinal cord. He is the

leading Neurosurgeon in Pennsylvania and he heads the dept. of Neurology at

Allegheny General Hospital in Pittsburgh which is also one the the leading

hospitals in the country. I have a team of 10 drs. 4 NS, a micro

neurosurgeon,

a orthopedic surgeon, and a host of other drs. who have taken on the

challenge of detethering me. I also have deformities of my spinal column that

have to be fixed prior to the detethering. I had a consult with all drs on

my team and they have come up with a plan for the procedure. I have decided

to have the surgery to hopefully stop the progression of the damage. They

feel that if I don't have the surgery that I will lose all function of my

legs and become a paraplegic. I have 3 young sons that need me to be mobile

and that is the main reason to do the surgery. So I either take the risk

and have a chance at mobility or I don't have the surgery and become

paralyzed within the year. So for me, I would rather have a choice and face

the

risk of paralysis rather than not taking a chance and being paralyzed

anyway. So as I see it, I'm damned if I do, and damned if I don't, but with

surgery at least I have a chance and a choice. Once again, thanks for writing

and I hope to chat with you again soon

Pam

I'm new here,and was wondering if anyone could help me

Hi,

My name is Pam and I am 44yrs old. I have been diagnosed with TSC. My

surgery is scheduled for April 16th. I am so scared and I have know idea what

is going to happen. I have a 3yr old, and was wondering if someone would

please explain what happens after surgery. My NS said that I would be " out of

it " , for a month. That I would have painful muscle spasms, and would not be

able to do anything. I understand that I won't be able to carry my son

around, but what else can I expect?

What can I expect after surgery?

Will I be able to walk up the steps?

Will i be able to take care of my son?

Will I be in a lot of pain?

Please, can someone help me? I am so scared of this surgery, but if i

don't have it done the dr. said i may become paralized.

Thanks Pam

Hi

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

Hi Pam,

Your story is very touching I really feel for you and what you are going thru, I

know it must be a very hard decision for you to make about getting this surgery

I myself would be scared to pieces, My mother had Spinal Bifider Occulta she

walked all her life and took care of 5 kids and several grandchildren before she

passed 3 years at age 72....I guess I inherited my spinal condition from my mom

and I believe my son might have a TSC too but not sure, he's an adult in his

30's and as a baby he had a tiny hole at the crack of his butt the little hole

looked like it was going into the spine, but so far no problems with him...

I notice doctors want to operate on adults and little babies just because they

had a TSC not knowing down the future they might not have any issues, but I know

the bladder and bowel issues and pain bring people to the doctor.....I too

thought that maybe one day I will be in a wheel chair because of my TSC I'm 54

but feel 94 because of all my pain, but I have to stop myself from thinking so

far ahead I can't predict the future so I won't get an operation just because I

think I might not walk one day, only time will tell since everyone has a severe

or less severe case...

I don't have a patch of hair but one single long hair at the top of my crack

I've had it since I was a little kid but never knew why it was there, anyway my

thoughts are with you and your children, if you still plan on going with the

surgery I will be sending healing thoughts to you, but please read more stories

from what other people have been thru with this surgery......keep me posted...

sharon

 

________________________________

To: tetheredspinalcord

Sent: Mon, April 12, 2010 2:23:50 AM

Subject: Re: I'm new here,and was wondering if anyone could help me

 

Hi Sharon,

Thank you so much for responding. I feel very much alone and afraid of what is

ahead waiting for me and my family.  I first starting feeling very week and

tired all the time.  I thought my thyroid was acting up and had blood tests,

and they came back normal. My pcp said stress and running after 2 young children

(2.5, 1.5 and 11) was taking its toll and to slow down and relax more.  Then I

started to have a lot of muscle pain and weakness in both legs, left more than

right, then it progressed to pain and numbness, weird sensations and lots of

random movements. I also have spina bifita occulta,and the patch of hair on my

lower back was getting longer and longer and the lower back pain was getting

worse. Then I started to develop lesions on my lower back and they would

break open and leak a clear discharge.  I thought they were pimples until they

wouldn't heal.  This had been going on for about 2 years off and on.  I also

lost some function of my

bowel and bladder which I had contributed to having children.  Then you know

how sometimes something tells you there is something just not right?  Well I

decided to tell my pcp again what was going on and he still said stress and

pimples.  Then my hands and arms started going numb all the time. The muscles

in my arm felt all weak and squishy.  I had a nerve conduction test done and

they said I had a bad case of Carpal tunnel.  So I had both hands done in Jan

and March respectively.  When seeing the NS I told him about the numbness and

lesions on my lower back.  He unfortunately was not able to help me as he only

did hands and feet. So he sent me to my current NS and he did a MRI and Cat Scan

and told me that I had a tethered spinal cord.  He is the leading Neurosurgeon

in Pennsylvania and he heads the dept. of Neurology at Allegheny General

Hospital in Pittsburgh which is also one the the leading hospitals in the

country.  I have a team of 10

drs.  4 NS, a micro neurosurgeon, a orthopedic surgeon, and a host of other

drs. who have taken on the challenge of detethering me.  I also have

deformities of my spinal column that have to be fixed prior to the

detethering.  I had a consult with all drs on my team and they have come up

with a plan for the procedure. I have decided to have the surgery to hopefully

stop the progression of the damage.  They feel that if I don't have the

surgery that I will lose all function of my legs and become a paraplegic. I

have 3 young sons that need me to be mobile and that is the main reason to do

the surgery.  So I either take the risk and have a chance at mobility or I

don't have the surgery and become paralyzed within the year.  So for me, I

would rather have a choice and face the risk of paralysis rather than not

taking a chance and being paralyzed anyway.  So as I see it, I'm damned if I

do, and damned if I don't, but with surgery at least I

have a chance and a choice. Once again, thanks for writing and I hope to chat

with you again soon

Pam

I'm new here,and was wondering if anyone could help me

 

Hi,

My name is Pam and I am 44yrs old. I have been diagnosed with TSC. My surgery is

scheduled for April 16th. I am so scared and I have know idea what is going to

happen. I have a 3yr old, and was wondering if someone would please explain what

happens after surgery. My NS said that I would be " out of it " , for a month. That

I would have painful muscle spasms, and would not be able to do anything. I

understand that I won't be able to carry my son around, but what else can I

expect?

What can I expect after surgery?

Will I be able to walk up the steps?

Will i be able to take care of my son?

Will I be in a lot of pain?

Please, can someone help me? I am so scared of this surgery, but if i don't have

it done the dr. said i may become paralized.

Thanks Pam

Hi

[Guest guest]

Hi Pam - it sounds like you are in good hands with your team of surgeons.

Please remember that everyone's experience with TCS is different, but the

decision to go ahead with surgery when you are having neurological symptoms

makes sense. As long as the neurosurgeons are experienced with this surgery, as

it sounds like your case may be complex - do you have a lipoma? I had the

surgery 2 yrs ago but mine was a simple detether of a fatty filum. Two years

later am doing much better (less aching in legs mainly and a little less back

pain), but it took quite awhile for me to see the benefits. I too have some

other spinal deformities (spondolylithesis) and my NS wanted to to the detether

first before doing a spinal fusion as he said that would be safer. I am

currently in line for a spinal fusion and wondering if it's the right thing to

do (I think it's natural to question our decisions over and over about these

surgeries).

Not sure I have much to add about what to expect after surgery - I was in

hospital 5 days I think, ended up flat for 3 due to bad headaches. Had a spinal

leak when I came home so that set me back a bit. I remember my legs being very

weak, like jelly for a long time, but they are so much better now, it just took

a long time and a lot of rehab to regain my strength. The first week I had my

husband home as I needed help dressing, bathing, meal prep, etc. He went back

to work after 2 weeks and I was ok on my own as long as he put everything I

needed up high for me before he left. I started driving at 4 weeks, but only

short distances. I was walking for the first month and then started PT. The

one thing I can add is to bring pillows and a blanket (maybe not needed this

time of year) for the car ride home. That tip was given to me and I am so glad

it was as I don't think I would have thought of it, made it much more

comfortable. Also, if you can have a family member or friend be with you in

hospital the first few days until you are up and about is so needed - as the

nurses can not attend to your every need, and it is also comforting to have

someone by you.

Good luck!

Dee

To: tetheredspinalcord

From: ilquackies@...

Date: Mon, 12 Apr 2010 06:57:55 -0700

Subject: Re: I'm new here,and was wondering if anyone could help me

Hi Pam,

Your story is very touching I really feel for you and what you are going thru, I

know it must be a very hard decision for you to make about getting this surgery

I myself would be scared to pieces, My mother had Spinal Bifider Occulta she

walked all her life and took care of 5 kids and several grandchildren before she

passed 3 years at age 72....I guess I inherited my spinal condition from my mom

and I believe my son might have a TSC too but not sure, he's an adult in his

30's and as a baby he had a tiny hole at the crack of his butt the little hole

looked like it was going into the spine, but so far no problems with him...

I notice doctors want to operate on adults and little babies just because they

had a TSC not knowing down the future they might not have any issues, but I know

the bladder and bowel issues and pain bring people to the doctor.....I too

thought that maybe one day I will be in a wheel chair because of my TSC I'm 54

but feel 94 because of all my pain, but I have to stop myself from thinking so

far ahead I can't predict the future so I won't get an operation just because I

think I might not walk one day, only time will tell since everyone has a severe

or less severe case...

I don't have a patch of hair but one single long hair at the top of my crack

I've had it since I was a little kid but never knew why it was there, anyway my

thoughts are with you and your children, if you still plan on going with the

surgery I will be sending healing thoughts to you, but please read more stories

from what other people have been thru with this surgery......keep me posted...

sharon

________________________________

To: tetheredspinalcord

Sent: Mon, April 12, 2010 2:23:50 AM

Subject: Re: I'm new here,and was wondering if anyone could help me

Hi Sharon,

Thank you so much for responding. I feel very much alone and afraid of what is

ahead waiting for me and my family. I first starting feeling very week and

tired all the time. I thought my thyroid was acting up and had blood tests, and

they came back normal. My pcp said stress and running after 2 young children

(2.5, 1.5 and 11) was taking its toll and to slow down and relax more. Then I

started to have a lot of muscle pain and weakness in both legs, left more than

right, then it progressed to pain and numbness, weird sensations and lots of

random movements. I also have spina bifita occulta,and the patch of hair on my

lower back was getting longer and longer and the lower back pain was getting

worse. Then I started to develop lesions on my lower back and they would break

open and leak a clear discharge. I thought they were pimples until they

wouldn't heal. This had been going on for about 2 years off and on. I also

lost some function of my

bowel and bladder which I had contributed to having children. Then you know

how sometimes something tells you there is something just not right? Well I

decided to tell my pcp again what was going on and he still said stress and

pimples. Then my hands and arms started going numb all the time. The muscles in

my arm felt all weak and squishy. I had a nerve conduction test done and they

said I had a bad case of Carpal tunnel. So I had both hands done in Jan and

March respectively. When seeing the NS I told him about the numbness and

lesions on my lower back. He unfortunately was not able to help me as he only

did hands and feet. So he sent me to my current NS and he did a MRI and Cat Scan

and told me that I had a tethered spinal cord. He is the leading Neurosurgeon

in Pennsylvania and he heads the dept. of Neurology at Allegheny General

Hospital in Pittsburgh which is also one the the leading hospitals in the

country. I have a team of 10

drs. 4 NS, a micro neurosurgeon, a orthopedic surgeon, and a host of other

drs. who have taken on the challenge of detethering me. I also have deformities

of my spinal column that have to be fixed prior to the detethering. I had a

consult with all drs on my team and they have come up with a plan for the

procedure. I have decided to have the surgery to hopefully stop the progression

of the damage. They feel that if I don't have the surgery that I will lose all

function of my legs and become a paraplegic. I have 3 young sons that need me to

be mobile and that is the main reason to do the surgery. So I either take the

risk and have a chance at mobility or I don't have the surgery and become

paralyzed within the year. So for me, I would rather have a choice and face the

risk of paralysis rather than not taking a chance and being paralyzed anyway.

So as I see it, I'm damned if I do, and damned if I don't, but with surgery at

least I

have a chance and a choice. Once again, thanks for writing and I hope to chat

with you again soon

Pam

I'm new here,and was wondering if anyone could help me

Hi,

My name is Pam and I am 44yrs old. I have been diagnosed with TSC. My surgery is

scheduled for April 16th. I am so scared and I have know idea what is going to

happen. I have a 3yr old, and was wondering if someone would please explain what

happens after surgery. My NS said that I would be " out of it " , for a month. That

I would have painful muscle spasms, and would not be able to do anything. I

understand that I won't be able to carry my son around, but what else can I

expect?

What can I expect after surgery?

Will I be able to walk up the steps?

Will i be able to take care of my son?

Will I be in a lot of pain?

Please, can someone help me? I am so scared of this surgery, but if i don't have

it done the dr. said i may become paralized.

Thanks Pam

Hi