upcoming surgery

[Guest guest]

Is there suspision of additional tethering? A myelogram can sometimes

pick up fibrous bands of tissues but only should be done if there is

strong suspicion that there might be. The test itself carries risks

and is painful so sedation is reccomended.

Good luck on the lysis of filum sugery. Been through it three time

with my children so let me know if you have any questions.

Charnel

>

> Hello! I don't post often as I am more in learning mode than sharing

> mode. But I just wanted to mention that my daughter is having her

> detethering surgery next Friday. It is prophylactic rather than

> reactive, which I know has its pros and cons. Our neurosurgeon is

> very positive about this and I also learned when talking with him on

> Friday that the tether is at the filum terminale, which I have learned

> so much about on this list. That seems like the most common and

> straightforward (?) of the tethers so I am feeling somewhat relieved.

> It isn't possible to confirm from the MRI that that is the only area

> of tethering so anything is possible, but I am certainly hopeful.

>

> As always, interested in any insights or suggestions for post surgery.

> My daughter is only 7 so the more I am prepared for what it will be

> like the more effective I will be in helping her get through it.

>

> Donna

> Mom to , 7, OSD, tethered, scoliosis/kyphosis, short stature

> (IGF1 deficiency), split cord and syrinx

>

[Guest guest]

Charnel

There isn't any specific reason to consider additional tethering, but

the neuro will be checking out the region of her split cord to find

out what caused the split if possible. Depending on what he finds he

may also remove the cause of the split.

Please tell me what you wish you had known before your children were

detethered, I don't think I even know the right questions to ask!

Donna

>

> Is there suspision of additional tethering?

> Good luck on the lysis of filum sugery. Been through it three time

> with my children so let me know if you have any questions.

>

> Charnel

>

[Guest guest]

The two things I would make sure are in place are good pain control

and nausea control options. The pain meds can cause nausea. I had

them give the kids zofran which works well. If the first avenue for

pain does not work well and there is not an altermative order in place

you then have to wait for them to call the doc and get one which can

take a while if it is the middle of the night. It is difficult to keep

them on their back for the 24 hours and the normal things like

coloring are out because they can't sit up. When they first wake up

it is really hard because you cannot reason with a sedated child. We

called to make sure there were VCRs in the rooms and went to the

video store and let the kids pick out a bunch of movies that they

wanted to watch that they hadn't seen before. The other thing we did

was schedule family to visit every few hours in the evening after we

knew the sedation would have worn off and they would be getting

restless. Hope this helps.

Charnel

PS you might also want to ask for the discharge med rxs the night

before you leave so a family member can get them. It is difficult to

stop on the way home and if your nearest pharmacy is 15 miles away

like ours it is difficult to just run out and get things later.

> >

> > Is there suspision of additional tethering?

> > Good luck on the lysis of filum sugery. Been through it three time

> > with my children so let me know if you have any questions.

> >

> > Charnel

> >

>

[Guest guest]

Hello to all about to have surgery...

I saw Charnel's post and it reminded me of how AWFUL my post-

decompression surgery experience was (decompression is the surgical

procedure to treat chiari malformation).

I couldn't stomach all the pain meds they were pumping into me thru

the IV. I had chills, uncontrollable shaking, vomiting....I just

felt so bad...I can't even describe it. Just trust me when I say it

was awful.

On the second day after surgery, my doc was losing patience...saying

I really needed to get out of bed. Keep in mind, I am a very young

33 yrs of age (at the time of surgery). I just could NOT make my

body obey.

Finally, I told them to just take OUT the IV. I'd had it. I told

them I just wanted tylenol 3 - that's it. They looked at me like I

was crazy but did what I wanted. WITHIN SIX HOURS I felt much, much

better. By the next morning, I was out of bed and walking.

3 months later, I had surgery to have a shunt placed. THIS TIME, I

was prepared. I told them up front that I was allergic to the pain

meds (a lie, but it served it's purpose) and all I wanted was

tylenol 3. Again, they thought I was a nut. But, guess what...as

soon as they brought me to my hospital room I was up walking. Just

had a hole drilled in my head, no problem. But, those IV pain

meds...THOSE will kick your butt!

The point I'm trying to make here is, don't be so darned afraid to

let go of the IV if you think it might be making you miserable.

Everything I had heard before my surgery had me terrified of the

pain. And, I AM a wimp. But, tylenol 3 was just fine at contolling

the pain - WITHOUT the nasty side effects.

Good luck to all of those about to have surgery....

in land

>

> Hello! I don't post often as I am more in learning mode than

sharing

> mode. But I just wanted to mention that my daughter is having her

> detethering surgery next Friday. It is prophylactic rather than

> reactive, which I know has its pros and cons. Our neurosurgeon is

> very positive about this and I also learned when talking with him

on

> Friday that the tether is at the filum terminale, which I have

learned

> so much about on this list. That seems like the most common and

> straightforward (?) of the tethers so I am feeling somewhat

relieved.

> It isn't possible to confirm from the MRI that that is the only

area

> of tethering so anything is possible, but I am certainly hopeful.

>

> As always, interested in any insights or suggestions for post

surgery.

> My daughter is only 7 so the more I am prepared for what it will

be

> like the more effective I will be in helping her get through it.

>

> Donna

> Mom to , 7, OSD, tethered, scoliosis/kyphosis, short stature

> (IGF1 deficiency), split cord and syrinx

>

[Guest guest]

Hi

I agree about too much pain medication - I had the IV PCA after my

detethering in 2001, and by the 2nd morning post-op it was about as much

use as a chocolate firedog. I got it taken out as soon as they could (by

mid morning) and depended on the much better combination of diclofenac,

codeine and paracetamol.

Of course, everyone's experiences are different, but I sympathise with you

on IV drugs

Regards

Nina

Bristol, UK

--On 20 June 2006 20:54 +0000 amandamariebaker

wrote:

> Hello to all about to have surgery...

>

> I saw Charnel's post and it reminded me of how AWFUL my post-

> decompression surgery experience was (decompression is the surgical

> procedure to treat chiari malformation).

> I couldn't stomach all the pain meds they were pumping into me thru

> the IV. I had chills, uncontrollable shaking, vomiting....I just

> felt so bad...I can't even describe it. Just trust me when I say it

> was awful.

> On the second day after surgery, my doc was losing patience...saying

> I really needed to get out of bed. Keep in mind, I am a very young

> 33 yrs of age (at the time of surgery). I just could NOT make my

> body obey.

> Finally, I told them to just take OUT the IV. I'd had it. I told

> them I just wanted tylenol 3 - that's it. They looked at me like I

> was crazy but did what I wanted. WITHIN SIX HOURS I felt much, much

> better. By the next morning, I was out of bed and walking.

> 3 months later, I had surgery to have a shunt placed. THIS TIME, I

> was prepared. I told them up front that I was allergic to the pain

> meds (a lie, but it served it's purpose) and all I wanted was

> tylenol 3. Again, they thought I was a nut. But, guess what...as

> soon as they brought me to my hospital room I was up walking. Just

> had a hole drilled in my head, no problem. But, those IV pain

> meds...THOSE will kick your butt!

> The point I'm trying to make here is, don't be so darned afraid to

> let go of the IV if you think it might be making you miserable.

> Everything I had heard before my surgery had me terrified of the

> pain. And, I AM a wimp. But, tylenol 3 was just fine at contolling

> the pain - WITHOUT the nasty side effects.

> Good luck to all of those about to have surgery....

> in land

>

>

>>

>> Hello! I don't post often as I am more in learning mode than

> sharing

>> mode. But I just wanted to mention that my daughter is having her

>> detethering surgery next Friday. It is prophylactic rather than

>> reactive, which I know has its pros and cons. Our neurosurgeon is

>> very positive about this and I also learned when talking with him

> on

>> Friday that the tether is at the filum terminale, which I have

> learned

>> so much about on this list. That seems like the most common and

>> straightforward (?) of the tethers so I am feeling somewhat

> relieved.

>> It isn't possible to confirm from the MRI that that is the only

> area

>> of tethering so anything is possible, but I am certainly hopeful.

>>

>> As always, interested in any insights or suggestions for post

> surgery.

>> My daughter is only 7 so the more I am prepared for what it will

> be

>> like the more effective I will be in helping her get through it.

>>

>> Donna

>> Mom to , 7, OSD, tethered, scoliosis/kyphosis, short stature

>> (IGF1 deficiency), split cord and syrinx

>>

>

>

>

>

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

> kathy@...,michelle@..., rick@...

>

[Guest guest]

Hi ,

When are you going to have your surgery? Mine is September 12th.

North Carolina

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[Guest guest]

hi all beth here i just got back from my appt. at the ns. he said he

believes with all the symptoms i expained to him that i have that i

should have the sugery done for the tc. so it is scheduled for

wednesday,august 2nd, he also said the hospital stay is about 3-5 days

and the surgery is approx. 4 hours long. can anyone tell me what to

expect after surgery? how much pain are you in after surgery? is there

physical therapy and how long is the actual recovery? all the info you

can give me would be a big help. thanks beth

[Guest guest]

The hardest part of the post-surgery for my granddaughter was laying flat on her

back for 2 days and she couldn't be held and comforted by anyone and at the age

of 16 months this is a really big deal. This next surgery we are going to find

some way to be able to hold her, whether we can climb into bed beside her or

have her on some type of back board and keep her flat, she needs to be held and

comforted. As soon as they let her get off her back, she was up and walking

around her crib and after 2 weeks postop she was still weak but if you didn't

know she had had surgery, you wouldn't be able to tell. Hope everything goes OK

with your little guy. Hugs, Diane V.

Upcoming Surgery

Hi,

I'm new to the group and wanted to introduce myself. My name is Kim and my

5-month-old

son has been diagnosed with LMC-TCS. He's having the detethering surgery next

Wednesday.

So far, we haven't observed him having any symptoms but, from what our doctors

have told

us, we may not know until he's older.

I'd really like to hear from anyone whose children have been through the

surgery. We really

have no idea what to expect and hearing about anyone else's experiences would

ease my

nerves right about now.

Thanks

k

[Guest guest]

Thanks Diane,

Since our son is so young, they are going to sedate him for the four days that

he needs to

be flat. I think it's probably going to be hard on us to have him out of it for

so long but I

think it's probably going to make it a lot easier for him and the staff.

Can I ask why your granddaughter is having another surgery? We were told that

our son

wouldn't need any other proceedures unless it re-tethered.

Thank

k

>

> The hardest part of the post-surgery for my granddaughter was laying flat on

her back

for 2 days and she couldn't be held and comforted by anyone and at the age of 16

months

this is a really big deal. This next surgery we are going to find some way to

be able to

hold her, whether we can climb into bed beside her or have her on some type of

back

board and keep her flat, she needs to be held and comforted. As soon as they

let her get

off her back, she was up and walking around her crib and after 2 weeks postop

she was

still weak but if you didn't know she had had surgery, you wouldn't be able to

tell. Hope

everything goes OK with your little guy. Hugs, Diane V.

>

> Upcoming Surgery

>

>

> Hi,

>

> I'm new to the group and wanted to introduce myself. My name is Kim and my

5-

month-old

> son has been diagnosed with LMC-TCS. He's having the detethering surgery

next

Wednesday.

> So far, we haven't observed him having any symptoms but, from what our

doctors have

told

> us, we may not know until he's older.

> I'd really like to hear from anyone whose children have been through the

surgery. We

really

> have no idea what to expect and hearing about anyone else's experiences

would ease

my

> nerves right about now.

>

> Thanks

> k

>

>

>

>

>

>

[Guest guest]

Mackenzie was detethered on October 24, 2005 and it was discovered in May 2006

that she has retethered. She has really gone downhill quite quickly as far as

her ability to walk. Her feet and legs are starting to roll, her feet will arch

and she is in a lot of pain. Her pediatric neurosurgeon had been telling his

patients parents that he had never seen a retether at the spot where her's is

and he has had to start telling them there is always a chance that it could

happen. Her anatomy seems to be different from normal (they said only 8-10%

have her type of anatomy). We thank God every day she has a twin who seems to

be completely normal developmentally; otherwise she would be very far behind

without her sis to mimic. She has started to have speech problems now as well,

but we haven't been able to find out if this is just another problem or part of

her spinal problems. I guess time will tell. She is such a little trouper and

is so loveable. Even though she doesn't like her nurses and doctors poking at

her, when it's time to say goodbye she will blow them all kisses.

Kenzie has another MRI scheduled for next Tuesday and we will know soon after

that about surgery. We KNOW she is having it, just not scheduled at this time

yet. Please keep us informed of his progress. Hugs, Diane V.

Re: Upcoming Surgery

Thanks Diane,

Since our son is so young, they are going to sedate him for the four days that

he needs to

be flat. I think it's probably going to be hard on us to have him out of it

for so long but I

think it's probably going to make it a lot easier for him and the staff.

Can I ask why your granddaughter is having another surgery? We were told that

our son

wouldn't need any other proceedures unless it re-tethered.

Thank

k

---

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