Re: New member with TCS

Posted March 8, 2008 · March 8, 2008

I think your doc may have been kidding about being too short!! but how

wonderful of him to suggest a pediatric neurosurgeon since they have so much

more

experience with this surgery!! Much good luck!! I only have the experience

of my daughter so I will leave it to the adults to talk about recovery. The

young ones bounce back really fast typically so hope it all goes wonderfully

well!!

Randee

In a message dated 3/8/2008 10:43:15 A.M. Eastern Standard Time,

peacamp@... writes:

Hi everyone,

Just found this forum, so haven't had much time yet to research older

posts.

I am a 52 year old woman living, working in S. Florida, and was

recently diagnosed with TCS. Started having symptoms only this past

November, had an MRI, and much to my dismay, found out I have

Diastematomyelia (split cord malformation)Diastematomyelia (split cor

region), and some herniated discs. Was also diagnosed with Spina

Bifida, which I believe is related to the split cord malformation.

This past Monday I had an appt. with Dr. Green in Miami, and will be

scheduled for TCS surgery very soon. They will also fix one of my

discs that is pressing against my sciatic nerve.

Dr. Green said the TCS surgery in Miami is normally handled by

pediatrics, and he will confer with the pediatrics NS (I believe Dr.

Ragheb) and they will make a plan together for my surgery. DH says I

have to have pediatric surgery because I am too short to have adult

surgery!

One of my first concerns is recovery time for the TCS surgery. Dr.

Green said 2-3 weeks, but from what I have been reading that sounds

very optimistic. My job is not physically demanding (computer

programmer), but it is a bit intense, with long days expected, and I

am worried that I won't be able to handle the normal work day for a

few months.

Best regards to all

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

Posted March 8, 2008 · March 8, 2008

Welcome! Sorry you wound up here with us but if you have TCS its a

great place to be. Each surgery is so different and it is very hard

to tell how long to expect for recovery. Usually 6-8 wks is about the

norm (I think 2 wks is absurd myself) as long as your work is not too

strenuous. Go back a couple of hours at a time and work your way up

so you dont overdo. Make sure your employer understands that this is

very unpredictable and to be flexible. Good luck with your surgery

and recovery, feel free to ask " anything " here, its ok. Blessings,

>

> Hi everyone,

>

> Just found this forum, so haven't had much time yet to research

older

> posts.

>

> I am a 52 year old woman living, working in S. Florida, and was

> recently diagnosed with TCS. Started having symptoms only this past

> November, had an MRI, and much to my dismay, found out I have

> Diastematomyelia (split cord malformation), TCS, a syrinx (lumbar

> region), and some herniated discs. Was also diagnosed with Spina

> Bifida, which I believe is related to the split cord malformation.

>

> This past Monday I had an appt. with Dr. Green in Miami, and will be

> scheduled for TCS surgery very soon. They will also fix one of my

> discs that is pressing against my sciatic nerve.

>

> Dr. Green said the TCS surgery in Miami is normally handled by

> pediatrics, and he will confer with the pediatrics NS (I believe Dr.

> Ragheb) and they will make a plan together for my surgery. DH says I

> have to have pediatric surgery because I am too short to have adult

> surgery!

>

> One of my first concerns is recovery time for the TCS surgery. Dr.

> Green said 2-3 weeks, but from what I have been reading that sounds

> very optimistic. My job is not physically demanding (computer

> programmer), but it is a bit intense, with long days expected, and I

> am worried that I won't be able to handle the normal work day for a

> few months.

>

> Best regards to all

>

Posted March 8, 2008 · March 8, 2008

Hi,

I am not sure what your name is .... so forgive me for not addressing you

correctly. I had surgery in 1/06 for repair of a tethered cord from a

lipomylemeningocele. My Neurosurgeon told me I would be in the hospital for 3-4

day. I was in for 3 weeks. I know that this isn't the norm when it comes to

hospital time. I think I had a undiagnosed cerebral spinal leak. It is a good

thing that you have a job that doesn't demand as much physical work. That might

get you back sooner..... but most neurosurgeons keep people out at least 4-6

weeks. I previously worked as an ICU nurse which was very physically demanding.

I couldn't go back to that. I ended up being out of work for 6 months. Now I

work as a nurse diabetes educator ...... and I LOVE it. So good things always

come out of it! If you push it you'll suffer more later. I speak from

experience with this. Good luck.

Peace,

New member with TCS

Hi everyone,

Just found this forum, so haven't had much time yet to research older

posts.

I am a 52 year old woman living, working in S. Florida, and was

recently diagnosed with TCS. Started having symptoms only this past

November, had an MRI, and much to my dismay, found out I have

Diastematomyelia (split cord malformation), TCS, a syrinx (lumbar

region), and some herniated discs. Was also diagnosed with Spina

Bifida, which I believe is related to the split cord malformation.

This past Monday I had an appt. with Dr. Green in Miami, and will be

scheduled for TCS surgery very soon. They will also fix one of my

discs that is pressing against my sciatic nerve.

Dr. Green said the TCS surgery in Miami is normally handled by

pediatrics, and he will confer with the pediatrics NS (I believe Dr.

Ragheb) and they will make a plan together for my surgery. DH says I

have to have pediatric surgery because I am too short to have adult

surgery!

One of my first concerns is recovery time for the TCS surgery. Dr.

Green said 2-3 weeks, but from what I have been reading that sounds

very optimistic. My job is not physically demanding (computer

programmer), but it is a bit intense, with long days expected, and I

am worried that I won't be able to handle the normal work day for a

few months.

Best regards to all

Posted March 8, 2008 · March 8, 2008

Hi again. Thanks for the responses and welcome! Just updated my

profile - I had a very old Yahoo account and forgot to update it

before posting.

It wasn't the doc who made the " short " comment; it was my dear

husband, and yes, he thinks he is very funny. But I agree that it is

great that pediatrics is going to be involved in my surgery. I've

heard that Dr. Ragheb is really great with children, and Dr. Green

said they average about one TCS surgery per week.

It sounds like I am getting some validation that the 2-3 weeks for

recovery is unlikely. Maybe that's the case for children, but not for

adults?

Another post-surgery concern I have is that we couldn't live in a more

unaccessible home. It is a condo (called a " carriage home " ) and

although the front door is on the ground floor, you must immediately

go up a flight of stairs to the living area. My husband is very

worried that I won't be able to get up the stairs when we come home

from the hospital. Any thoughts/suggestions on this? Are stairs

particularly tricky after the surgery?

Best regards,

Patty

>

> Hi everyone,

>

> Just found this forum, so haven't had much time yet to research older

> posts.

>

> I am a 52 year old woman living, working in S. Florida, and was

> recently diagnosed with TCS. Started having symptoms only this past

> November, had an MRI, and much to my dismay, found out I have

> Diastematomyelia (split cord malformation), TCS, a syrinx (lumbar

> region), and some herniated discs. Was also diagnosed with Spina

> Bifida, which I believe is related to the split cord malformation.

>

> This past Monday I had an appt. with Dr. Green in Miami, and will be

> scheduled for TCS surgery very soon. They will also fix one of my

> discs that is pressing against my sciatic nerve.

>

> Dr. Green said the TCS surgery in Miami is normally handled by

> pediatrics, and he will confer with the pediatrics NS (I believe Dr.

> Ragheb) and they will make a plan together for my surgery. DH says I

> have to have pediatric surgery because I am too short to have adult

> surgery!

>

> One of my first concerns is recovery time for the TCS surgery. Dr.

> Green said 2-3 weeks, but from what I have been reading that sounds

> very optimistic. My job is not physically demanding (computer

> programmer), but it is a bit intense, with long days expected, and I

> am worried that I won't be able to handle the normal work day for a

> few months.

>

> Best regards to all

>

Posted March 9, 2008 · March 9, 2008

Well if you go by my surgery which was only a month ago. I'm still not

back to work cant sit to long can't stand to long. I'm pain free but

I'm still awakeard feeling back there. I'm 22. So I guess I didn't

bounce back too quick! It was also my first surgury. You can mail me

with questions.

This message was sent from an iphone and may not display correctly.

On Mar 8, 2008, at 5:17 PM, " Patty "

wrote:

> Hi again. Thanks for the responses and welcome! Just updated my

> profile - I had a very old Yahoo account and forgot to update it

> before posting.

>

> It wasn't the doc who made the " short " comment; it was my dear

> husband, and yes, he thinks he is very funny. But I agree that it is

> great that pediatrics is going to be involved in my surgery. I've

> heard that Dr. Ragheb is really great with children, and Dr. Green

> said they average about one TCS surgery per week.

>

> It sounds like I am getting some validation that the 2-3 weeks for

> recovery is unlikely. Maybe that's the case for children, but not for

> adults?

>

> Another post-surgery concern I have is that we couldn't live in a more

> unaccessible home. It is a condo (called a " carriage home " ) and

> although the front door is on the ground floor, you must immediately

> go up a flight of stairs to the living area. My husband is very

> worried that I won't be able to get up the stairs when we come home

> from the hospital. Any thoughts/suggestions on this? Are stairs

> particularly tricky after the surgery?

>

> Best regards,

> Patty

>

> >

> > Hi everyone,

> >

> > Just found this forum, so haven't had much time yet to research

> older

> > posts.

> >

> > I am a 52 year old woman living, working in S. Florida, and was

> > recently diagnosed with TCS. Started having symptoms only this past

> > November, had an MRI, and much to my dismay, found out I have

> > Diastematomyelia (split cord malformation), TCS, a syrinx (lumbar

> > region), and some herniated discs. Was also diagnosed with Spina

> > Bifida, which I believe is related to the split cord malformation.

> >

> > This past Monday I had an appt. with Dr. Green in Miami, and will be

> > scheduled for TCS surgery very soon. They will also fix one of my

> > discs that is pressing against my sciatic nerve.

> >

> > Dr. Green said the TCS surgery in Miami is normally handled by

> > pediatrics, and he will confer with the pediatrics NS (I believe Dr.

> > Ragheb) and they will make a plan together for my surgery. DH says I

> > have to have pediatric surgery because I am too short to have adult

> > surgery!

> >

> > One of my first concerns is recovery time for the TCS surgery. Dr.

> > Green said 2-3 weeks, but from what I have been reading that sounds

> > very optimistic. My job is not physically demanding (computer

> > programmer), but it is a bit intense, with long days expected, and I

> > am worried that I won't be able to handle the normal work day for a

> > few months.

> >

> > Best regards to all

> >

>

Posted March 9, 2008 · March 9, 2008

Hello Patty, stairs are damn near impossible...you may be able to sit

and kind of scooch up backwards very slowly and carefully but once

you are there you are stuck there. You will need a bedside commode by

the bed or couch, wherever you will be staying. Lots of books or

stichery, a bell (yes a bell) to call for help, something to throw up

in in case you dont handle pain meds well (like me) in other words

you are there until you aren't. Sorry, but better prepared than not.

Many Blessings,

> >

> > Hi everyone,

> >

> > Just found this forum, so haven't had much time yet to research

older

> > posts.

> >

> > I am a 52 year old woman living, working in S. Florida, and was

> > recently diagnosed with TCS. Started having symptoms only this

past

> > November, had an MRI, and much to my dismay, found out I have

> > Diastematomyelia (split cord malformation), TCS, a syrinx (lumbar

> > region), and some herniated discs. Was also diagnosed with Spina

> > Bifida, which I believe is related to the split cord malformation.

> >

> > This past Monday I had an appt. with Dr. Green in Miami, and will

be

> > scheduled for TCS surgery very soon. They will also fix one of my

> > discs that is pressing against my sciatic nerve.

> >

> > Dr. Green said the TCS surgery in Miami is normally handled by

> > pediatrics, and he will confer with the pediatrics NS (I believe

Dr.

> > Ragheb) and they will make a plan together for my surgery. DH

says I

> > have to have pediatric surgery because I am too short to have

adult

> > surgery!

> >

> > One of my first concerns is recovery time for the TCS surgery. Dr.

> > Green said 2-3 weeks, but from what I have been reading that

sounds

> > very optimistic. My job is not physically demanding (computer

> > programmer), but it is a bit intense, with long days expected,

and I

> > am worried that I won't be able to handle the normal work day for

a

> > few months.

> >

> > Best regards to all

> >

>

Posted March 9, 2008 · March 9, 2008

As for the throw up catcher--use a large plastic

pitcher with a handle--it's easy to hold, empty, and

you can sterilize it in the DW. It took having a third

child to figure that one out, but it's muche less

messy than a bowl or garbage can.

I hope you won't need it! My daughter didn't handle

the pain meds well either--it wasn't until we switched

to regular tylenol that she stopped barfing--anything

else was awful!

Good luck!

--- livedream_believe

wrote:

> Hello Patty, stairs are damn near impossible...you

> may be able to sit

> and kind of scooch up backwards very slowly and

> carefully but once

> you are there you are stuck there. You will need a

> bedside commode by

> the bed or couch, wherever you will be staying. Lots

> of books or

> stichery, a bell (yes a bell) to call for help,

> something to throw up

> in in case you dont handle pain meds well (like me)

> in other words

> you are there until you aren't. Sorry, but better

> prepared than not.

> Many Blessings,

>

> > >

> > > Hi everyone,

> > >

> > > Just found this forum, so haven't had much time

> yet to research

> older

> > > posts.

> > >

> > > I am a 52 year old woman living, working in S.

> Florida, and was

> > > recently diagnosed with TCS. Started having

> symptoms only this

> past

> > > November, had an MRI, and much to my dismay,

> found out I have

> > > Diastematomyelia (split cord malformation), TCS,

> a syrinx (lumbar

> > > region), and some herniated discs. Was also

> diagnosed with Spina

> > > Bifida, which I believe is related to the split

> cord malformation.

> > >

> > > This past Monday I had an appt. with Dr. Green

> in Miami, and will

> be

> > > scheduled for TCS surgery very soon. They will

> also fix one of my

> > > discs that is pressing against my sciatic nerve.

> > >

> > > Dr. Green said the TCS surgery in Miami is

> normally handled by

> > > pediatrics, and he will confer with the

> pediatrics NS (I believe

> Dr.

> > > Ragheb) and they will make a plan together for

> my surgery. DH

> says I

> > > have to have pediatric surgery because I am too

> short to have

> adult

> > > surgery!

> > >

> > > One of my first concerns is recovery time for

> the TCS surgery. Dr.

> > > Green said 2-3 weeks, but from what I have been

> reading that

> sounds

> > > very optimistic. My job is not physically

> demanding (computer

> > > programmer), but it is a bit intense, with long

> days expected,

> and I

> > > am worried that I won't be able to handle the

> normal work day for

> a

> > > few months.

> > >

> > > Best regards to all

> > >

> >

>

Posted March 9, 2008 · March 9, 2008

Excellent idea Mindy!!

> > > >

> > > > Hi everyone,

> > > >

> > > > Just found this forum, so haven't had much time

> > yet to research

> > older

> > > > posts.

> > > >

> > > > I am a 52 year old woman living, working in S.

> > Florida, and was

> > > > recently diagnosed with TCS. Started having

> > symptoms only this

> > past

> > > > November, had an MRI, and much to my dismay,

> > found out I have

> > > > Diastematomyelia (split cord malformation), TCS,

> > a syrinx (lumbar

> > > > region), and some herniated discs. Was also

> > diagnosed with Spina

> > > > Bifida, which I believe is related to the split

> > cord malformation.

> > > >

> > > > This past Monday I had an appt. with Dr. Green

> > in Miami, and will

> > be

> > > > scheduled for TCS surgery very soon. They will

> > also fix one of my

> > > > discs that is pressing against my sciatic nerve.

> > > >

> > > > Dr. Green said the TCS surgery in Miami is

> > normally handled by

> > > > pediatrics, and he will confer with the

> > pediatrics NS (I believe

> > Dr.

> > > > Ragheb) and they will make a plan together for

> > my surgery. DH

> > says I

> > > > have to have pediatric surgery because I am too

> > short to have

> > adult

> > > > surgery!

> > > >

> > > > One of my first concerns is recovery time for

> > the TCS surgery. Dr.

> > > > Green said 2-3 weeks, but from what I have been

> > reading that

> > sounds

> > > > very optimistic. My job is not physically

> > demanding (computer

> > > > programmer), but it is a bit intense, with long

> > days expected,

> > and I

> > > > am worried that I won't be able to handle the

> > normal work day for

> > a

> > > > few months.

> > > >

> > > > Best regards to all

> > > >

> > >

> >

>

Posted March 9, 2008 · March 9, 2008

Greetings,

I think I am one of the few on this board who was able to return to full-time

work 2 weeks after surgery. To be honest, I should have taken another week off.

I had few symptoms before surgery (at first I also thought it was a disc

problem) and have nothing major afterwards other than what I describe as

continual low level pain: numbness of the butt, back of thighs (feels like a bad

sunburn almost 4 years after OP) and unfortunately in my right foot - that is

the most annoying as I have had to go to orthopedic shoes to get any relief.

My Dr. put me on PT right away, and I have lifted weights and done cardio with

no problems. I actually feel worse if I skip my PT. Supposed to do streching

etc.every day, don`t always do it. It really seems to help against the numbness

(which differs day by day).

Good luck!

New member with TCS

Hi everyone,

Just found this forum, so haven't had much time yet to research older

posts.

I am a 52 year old woman living, working in S. Florida, and was

recently diagnosed with TCS. Started having symptoms only this past

November, had an MRI, and much to my dismay, found out I have

Diastematomyelia (split cord malformation) , TCS, a syrinx (lumbar

region), and some herniated discs. Was also diagnosed with Spina

Bifida, which I believe is related to the split cord malformation.

This past Monday I had an appt. with Dr. Green in Miami, and will be

scheduled for TCS surgery very soon. They will also fix one of my

discs that is pressing against my sciatic nerve.

Dr. Green said the TCS surgery in Miami is normally handled by

pediatrics, and he will confer with the pediatrics NS (I believe Dr.

Ragheb) and they will make a plan together for my surgery. DH says I

have to have pediatric surgery because I am too short to have adult

surgery!

One of my first concerns is recovery time for the TCS surgery. Dr.

Green said 2-3 weeks, but from what I have been reading that sounds

very optimistic. My job is not physically demanding (computer

programmer), but it is a bit intense, with long days expected, and I

am worried that I won't be able to handle the normal work day for a

few months.

Best regards to all

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

Posted March 9, 2008 · March 9, 2008

Just a quick note again I was fine to walk up my stairs into my house

after a week in the hospital. But then I started to leak and I had a

hard time getting out of the house to go back to hospital. But it was

easy to go up the first time.

This message was sent from an iphone and may not display correctly.

On Mar 9, 2008, at 1:11 PM, Sportolari

wrote:

> Greetings,

> I think I am one of the few on this board who was able to return to

> full-time work 2 weeks after surgery. To be honest, I should have

> taken another week off. I had few symptoms before surgery (at first

> I also thought it was a disc problem) and have nothing major

> afterwards other than what I describe as continual low level pain:

> numbness of the butt, back of thighs (feels like a bad sunburn

> almost 4 years after OP) and unfortunately in my right foot - that

> is the most annoying as I have had to go to orthopedic shoes to get

> any relief.

> My Dr. put me on PT right away, and I have lifted weights and done

> cardio with no problems. I actually feel worse if I skip my PT.

> Supposed to do streching etc.every day, don`t always do it. It

> really seems to help against the numbness (which differs day by day).

> Good luck!

>

> New member with TCS

>

> Hi everyone,

>

> Just found this forum, so haven't had much time yet to research older

> posts.

>

> I am a 52 year old woman living, working in S. Florida, and was

> recently diagnosed with TCS. Started having symptoms only this past

> November, had an MRI, and much to my dismay, found out I have

> Diastematomyelia (split cord malformation) , TCS, a syrinx (lumbar

> region), and some herniated discs. Was also diagnosed with Spina

> Bifida, which I believe is related to the split cord malformation.

>

> This past Monday I had an appt. with Dr. Green in Miami, and will be

> scheduled for TCS surgery very soon. They will also fix one of my

> discs that is pressing against my sciatic nerve.

>

> Dr. Green said the TCS surgery in Miami is normally handled by

> pediatrics, and he will confer with the pediatrics NS (I believe Dr.

> Ragheb) and they will make a plan together for my surgery. DH says I

> have to have pediatric surgery because I am too short to have adult

> surgery!

>

> One of my first concerns is recovery time for the TCS surgery. Dr.

> Green said 2-3 weeks, but from what I have been reading that sounds

> very optimistic. My job is not physically demanding (computer

> programmer), but it is a bit intense, with long days expected, and I

> am worried that I won't be able to handle the normal work day for a

> few months.

>

> Best regards to all

>

> __________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

Posted March 9, 2008 · March 9, 2008

, so sorry to hear about you leak and return to the hospital.

Glad you got through the op ok though!! Hang in there!

>

> > Greetings,

> > I think I am one of the few on this board who was able to return

to

> > full-time work 2 weeks after surgery. To be honest, I should

have

> > taken another week off. I had few symptoms before surgery (at

first

> > I also thought it was a disc problem) and have nothing major

> > afterwards other than what I describe as continual low level

pain:

> > numbness of the butt, back of thighs (feels like a bad sunburn

> > almost 4 years after OP) and unfortunately in my right foot -

that

> > is the most annoying as I have had to go to orthopedic shoes to

get

> > any relief.

> > My Dr. put me on PT right away, and I have lifted weights and

done

> > cardio with no problems. I actually feel worse if I skip my PT.

> > Supposed to do streching etc.every day, don`t always do it. It

> > really seems to help against the numbness (which differs day by

day).

> > Good luck!

> >

> > New member with TCS

> >

> > Hi everyone,

> >

> > Just found this forum, so haven't had much time yet to research

older

> > posts.

> >

> > I am a 52 year old woman living, working in S. Florida, and was

> > recently diagnosed with TCS. Started having symptoms only this

past

> > November, had an MRI, and much to my dismay, found out I have

> > Diastematomyelia (split cord malformation) , TCS, a syrinx (lumbar

> > region), and some herniated discs. Was also diagnosed with Spina

> > Bifida, which I believe is related to the split cord malformation.

> >

> > This past Monday I had an appt. with Dr. Green in Miami, and will

be

> > scheduled for TCS surgery very soon. They will also fix one of my

> > discs that is pressing against my sciatic nerve.

> >

> > Dr. Green said the TCS surgery in Miami is normally handled by

> > pediatrics, and he will confer with the pediatrics NS (I believe

Dr.

> > Ragheb) and they will make a plan together for my surgery. DH

says I

> > have to have pediatric surgery because I am too short to have

adult

> > surgery!

> >

> > One of my first concerns is recovery time for the TCS surgery. Dr.

> > Green said 2-3 weeks, but from what I have been reading that

sounds

> > very optimistic. My job is not physically demanding (computer

> > programmer), but it is a bit intense, with long days expected,

and I

> > am worried that I won't be able to handle the normal work day for

a

> > few months.

> >

> > Best regards to all

> >

> > __________________________________________________________

> > Be a better friend, newshound, and

> > know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

> >

Posted March 10, 2008 · March 10, 2008

Hi, where in S. Florida r u? I am in the Melbourne/Palm Bay area.

Thanks,

Dawn Sweeney