RE: Build up of fluid under skin after TC surgery - help!

[Guest guest]

In a message dated 3/13/2008 9:48:16 P.M. Eastern Daylight Time,

deeinbc@... writes:

I came home from hospital yesterday and today when I woke up I noticed

a lot of swelling above top 1/2 of my incision. Swelling is getting

bigger. Saw my family doctor this afternoon and he has a call into my

neurosurgeon (who was unreachable due to being in the OR all day) but I

have not heard back from him. My family doctor did not think I was in

any danger and described it as a fluid filled cyst under my skin, about

7 cm wide.

Dee, sorry to say that it sounds like a spinal fluid leak is a possibility

that needs to be ruled out ASAP. You need to talk to the neurosurgeon's

office to see what they want you to do. If you haven't heard back from them

yet,

call the hospital and ask for the neurosurgery resident on call, there is

someone at the hospital 24 hours a day for calls like this in the post op

period.

If it is, sometimes bedrest can help it resolve, sometimes you need it taken

care of surgically, but only the NS can make that call depending on how it

looks and your symptoms.

Best of luck!

Connie

Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial

torsion

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)

conni60640@...

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[Guest guest]

Connie --

Thank you for your quick reply -- I took your advice and called the hospital and

got the neurosurgeon on call -- he said yes, most definately a spinal leak but

said as long as it doesn't seep out of the skin or wound not to be too

concerned, just rest as much as possible and if it doesn't go down after the

weekend to make appt to see him in the spine clinic.

I didn't know what to do so thanks for the advice (I have no confidence in my

local health care resources when doctors have not even heard of tethered

cords!), feel better talking to the neurosurgeon, although will feel more

relaxed when it subsides as I don't want to make the trip to the spine unit, 5

hours away! I couldn't find info on google and then I thought there must be

someone on this group who can help - how did we ever live without the internet!

I am surprised a leak would happen after a week of no problems -- would the long

drive home contribute? Can a spinal leak make you generally feel crappy?

Dee

Dee

To: tetheredspinalcord@...: conni60640@...: Thu, 13 Mar

2008 22:29:29 -0400Subject: Re: Build up of fluid under skin after TC

surgery - help!

In a message dated 3/13/2008 9:48:16 P.M. Eastern Daylight Time,

deeinbc@... writes:I came home from hospital yesterday and today when I

woke up I noticed a lot of swelling above top 1/2 of my incision. Swelling is

getting bigger. Saw my family doctor this afternoon and he has a call into my

neurosurgeon (who was unreachable due to being in the OR all day) but I have not

heard back from him. My family doctor did not think I was in any danger and

described it as a fluid filled cyst under my skin, about 7 cm wide. Dee, sorry

to say that it sounds like a spinal fluid leak is a possibility that needs to be

ruled out ASAP. You need to talk to the neurosurgeon's office to see what they

want you to do. If you haven't heard back from them yet, call the hospital and

ask for the neurosurgery resident on call, there is someone at the hospital 24

hours a day for calls like this in the post op period. If it is, sometimes

bedrest can help it resolve, sometimes you need it taken care of surgically, but

only the NS can make that call depending on how it looks and your symptoms.Best

of luck! ConnieMom to Sara 16, Nicky 9 (GI issues, megacolon), and

7(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal fistula

imperforate anus (repaired 5/00, managed with daily Exlax), single kidney, PDA

(closed on its own), malformed pelvis and hemisacrum, long segment lumbosacral

levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06), extra left

rib, genital anomalies with hypospadius (repairs 9/00,11/00, 5/01,12/01,12/03),

hypoplastic left leg with clubfoot (repaired 5/01) tibial torsion and 4.5cm

length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)conni60640@... Our website:

_http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/) VACTERL/VATER support

_http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/) TC support group

_http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/) Congenital scoliosis support

group _http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/) Anorectal

malformations support - The Pull-Thru

Network_http://www.pullthrunetwork.org/index.php_

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[Guest guest]

I had this and mine got infected go back to the hospital where your

surgury was if your concerned I had mine tapd twice before a pressure

bandage was applied and stoped it. They called mine a red and white

blood cell attack. And thats exactly what they pulled out the day I

went to the er. I was then readmited for a week.

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

> In a message dated 3/13/2008 9:48:16 P.M. Eastern Daylight Time,

> deeinbc@... writes:

>

> I came home from hospital yesterday and today when I woke up I noticed

> a lot of swelling above top 1/2 of my incision. Swelling is getting

> bigger. Saw my family doctor this afternoon and he has a call into my

> neurosurgeon (who was unreachable due to being in the OR all day)

> but I

> have not heard back from him. My family doctor did not think I was in

> any danger and described it as a fluid filled cyst under my skin,

> about

> 7 cm wide.

>

> Dee, sorry to say that it sounds like a spinal fluid leak is a

> possibility

> that needs to be ruled out ASAP. You need to talk to the

> neurosurgeon's

> office to see what they want you to do. If you haven't heard back

> from them yet,

> call the hospital and ask for the neurosurgery resident on call,

> there is

> someone at the hospital 24 hours a day for calls like this in the

> post op

> period.

>

> If it is, sometimes bedrest can help it resolve, sometimes you need

> it taken

> care of surgically, but only the NS can make that call depending on

> how it

> looks and your symptoms.

>

> Best of luck!

>

> Connie

> Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

> (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06)

> perineal

> fistula imperforate anus (repaired 5/00, managed with daily Exlax),

> single

> kidney, PDA (closed on its own), malformed pelvis and hemisacrum,

> long segment

> lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-

> sacrum 8/06),

> extra left rib, genital anomalies with hypospadius (repairs

> 9/00,11/00,

> 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired

> 5/01) tibial torsion

> and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI

> reflux,

> DGE/gastroparesis, mild swallowing dysphagia, eating issues and the

> most

> beautiful smile ever)

> conni60640@...

>

> Our website: _http://members.tripod.com/conni60640-ivil/_

> (http://members.tripod.com/conni60640-ivil/)

>

> VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

> (http://health.groups.yahoo.com/group/VACTERLNetwork/)

>

> TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

> (http://health.groups.yahoo.com/group/LMC-TCS/)

>

> Congenital scoliosis support group

> _http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

> (http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

>

> Anorectal malformations support - The Pull-Thru Network

> _http://www.pullthrunetwork.org/index.php_

> (http://www.pullthrunetwork.org/index.php)

>

> S. Jersey

>

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

> Money &

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

>

>

[Guest guest]

Dee,

I agree with everyone else. Sounds like a CSF leak. Are you having

headaches when you are sitting or standing? If so, then I would think that

the likely cause. If your neurosurg is unavailable, ask to speak to his RN -

they can usually tell you what to do - either an appointment or to go to the

ER. If you are having headaches, I would try to stay in bed as much as

possible. There is also the possibility that it is a pocket of infection.

Either way, you need to get in contact with your neurosurg's office and if

they are totally unresponsive, I would go to the ER.

Jenn

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of deeallaert

Sent: Thursday, March 13, 2008 9:48 PM

To: tetheredspinalcord

Subject: Build up of fluid under skin after TC surgery - help!

I came home from hospital yesterday and today when I woke up I noticed

a lot of swelling above top 1/2 of my incision. Swelling is getting

bigger. Saw my family doctor this afternoon and he has a call into my

neurosurgeon (who was unreachable due to being in the OR all day) but I

have not heard back from him. My family doctor did not think I was in

any danger and described it as a fluid filled cyst under my skin, about

7 cm wide. However, this doctor (my regular doctor) didn't even know

what a tethered cord was so I can't say I feel re-assured. I feel

crappy today in the head but no severe headache, no fever, and no

increased pain. Anyone have any ideas?

I was told to head to emerg if either severe headache or fever

started. I am a 5 hour trip from Vancouver General where I had the

surgery done. Am 1 week post-op.

Dee

[Guest guest]

I got hold of the spine neurosurgeon on call last night at the hospital in

Vancouver. He told me exactly what everyone else is saying - a spinal leak.

Strange I would be fine for a week then bam. He said to take it easy, not to

panic and it would like go down over the weekend. It is quite a large area of

fluid build-up, but did not grow any larger overnight. He said as long as the

spinal fluid is not leaking through my skin or wound my body would re-absorb it.

My pain increased last night from yesterday though. I am watching for a fever

and am consequently on antibiotics for a bladder infection I got while in

hospital so maybe that is a good safeguard! No serious headaches. I am going to

call my neurosurgeon today again and get his opinion, hopefully I can track him

down. I am a 5 hour trip from the hospital (we do have a hospital here but it

is small, but they do airlift people to Vancouver in emergency situations if

they can't deal with the situation).

To: tetheredspinalcord@...: jlbobin@...: Fri, 14 Mar

2008 11:15:31 -0400Subject: RE: Build up of fluid under skin after TC

surgery - help!

Dee,I agree with everyone else. Sounds like a CSF leak. Are you havingheadaches

when you are sitting or standing? If so, then I would think thatthe likely

cause. If your neurosurg is unavailable, ask to speak to his RN -they can

usually tell you what to do - either an appointment or to go to theER. If you

are having headaches, I would try to stay in bed as much aspossible. There is

also the possibility that it is a pocket of infection.Either way, you need to

get in contact with your neurosurg's office and ifthey are totally unresponsive,

I would go to the ER. JennFrom:

tetheredspinalcord [mailto:tetheredspinalcord ] On

Behalf Of deeallaertSent: Thursday, March 13, 2008 9:48 PMTo:

tetheredspinalcord@...: Build up of fluid under skin

after TC surgery - help!I came home from hospital yesterday and today when I

woke up I noticed a lot of swelling above top 1/2 of my incision. Swelling is

getting bigger. Saw my family doctor this afternoon and he has a call into my

neurosurgeon (who was unreachable due to being in the OR all day) but I have not

heard back from him. My family doctor did not think I was in any danger and

described it as a fluid filled cyst under my skin, about 7 cm wide. However,

this doctor (my regular doctor) didn't even know what a tethered cord was so I

can't say I feel re-assured. I feel crappy today in the head but no severe

headache, no fever, and no increased pain. Anyone have any ideas?I was told to

head to emerg if either severe headache or fever started. I am a 5 hour trip

from Vancouver General where I had the surgery done. Am 1 week

post-op.Dee

[Guest guest]

Dee, when I had my leak, I had excruciating headache so I don't know

if I felt over all crappy or not...lol. I do know that infection can

make you feel crappy, please go let someone check on you and make

sure it is a spinal leak and not infection. Better safe than sorry.

Blessings,

>

>

> Connie --

> Thank you for your quick reply -- I took your advice and called the

hospital and got the neurosurgeon on call -- he said yes, most

definately a spinal leak but said as long as it doesn't seep out of

the skin or wound not to be too concerned, just rest as much as

possible and if it doesn't go down after the weekend to make appt to

see him in the spine clinic.

>

> I didn't know what to do so thanks for the advice (I have no

confidence in my local health care resources when doctors have not

even heard of tethered cords!), feel better talking to the

neurosurgeon, although will feel more relaxed when it subsides as I

don't want to make the trip to the spine unit, 5 hours away! I

couldn't find info on google and then I thought there must be someone

on this group who can help - how did we ever live without the

internet!

>

> I am surprised a leak would happen after a week of no problems --

would the long drive home contribute? Can a spinal leak make you

generally feel crappy?

>

> Dee

>

> Dee

>

>

> To: tetheredspinalcord@...: conni60640@...: Thu, 13 Mar 2008

22:29:29 -0400Subject: Re: Build up of fluid under skin after

TC surgery - help!

>

>

>

>

> In a message dated 3/13/2008 9:48:16 P.M. Eastern Daylight Time,

deeinbc@... writes:I came home from hospital yesterday and today when

I woke up I noticed a lot of swelling above top 1/2 of my incision.

Swelling is getting bigger. Saw my family doctor this afternoon and

he has a call into my neurosurgeon (who was unreachable due to being

in the OR all day) but I have not heard back from him. My family

doctor did not think I was in any danger and described it as a fluid

filled cyst under my skin, about 7 cm wide. Dee, sorry to say that it

sounds like a spinal fluid leak is a possibility that needs to be

ruled out ASAP. You need to talk to the neurosurgeon's office to see

what they want you to do. If you haven't heard back from them yet,

call the hospital and ask for the neurosurgery resident on call,

there is someone at the hospital 24 hours a day for calls like this

in the post op period. If it is, sometimes bedrest can help it

resolve, sometimes you need it taken care of surgically, but only the

NS can make that call depending on how it looks and your

symptoms.Best of luck! ConnieMom to Sara 16, Nicky 9 (GI issues,

megacolon), and 7(CRS/VACTERLS incl. tethered spinal cord

(repaired 9/00, 8/06) perineal fistula imperforate anus (repaired

5/00, managed with daily Exlax), single kidney, PDA (closed on its

own), malformed pelvis and hemisacrum, long segment lumbosacral

levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot

(repaired 5/01) tibial torsion and 4.5cm length discrepancy - wears

AFO and 3.5cm lift, SUA, GI reflux, DGE/gastroparesis, mild

swallowing dysphagia, eating issues and the most beautiful smile ever)

conni60640@... Our website: _http://members.tripod.com/conni60640-

ivil/_ (http://members.tripod.com/conni60640-ivil/) VACTERL/VATER

support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/) TC support

group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/) Congenital scoliosis

support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

Anorectal malformations support - The Pull-Thru

Network_http://www.pullthrunetwork.org/index.php_

(http://www.pullthrunetwork.org/index.php) S.

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

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