why does pain dirrectly after surgery get worse

[skinnyinc]

my daughter was diagnosed with chiari she is only 3 and is very delayed because she is visually impared and has diabetese insipidus and other problem steming from a deformed pituitary. she just had surgery the 5 days ago and was seeming to do all right with it until 2 days ago and last night she pretty much screamed the whole night cuz of pain she cant form sentences very good never has but all she pretty much does is says is my head hurts and pats the top of her head. I am wondering why the pain gets worse? i am also wondering why our NS never disgused any thing about long term with us he pretty much told us she needs the surgery and after the surgery in 3 to 6 months will notice a whole new child.

[hernandez7]

good luck.my 2 year old is facing her first decompression and i am very nervous.i have heard more and more kids having problems from it.my daughter is also very delayed and has mild cp.i completely feel you.and i wish you guys the best!!

[selmaS]

Not to contradiction  ur dr but I never heard that explanation....and I wonder how that explains those of us that r told we had this since birth and we r close to 50 b4 it is dx'd?

From how I understand some of us r born with a skull that is malformed....depending on how mis shaped it is and what else is going on the cerebellum tonsils can get forced out on to the brain stem causing many of the symptoms...depending  on the width of the tonsils they can cause a CSF blockage which can cause even more issues.....


May I ask what type of patch did he use...mayb she is having rejection to it?...that can happen....I run a higher risk of that and they used my skin for a patch.

Again something to ask about.

"selma"

[skinnyinc]

i dont believe he is a chiari specialist but he said he has done about 500 of these and he is really reputable graduated with honors and a instructor at chreighton medical center and he specializes in pediatrics he was great to us in every aspect except he made it seem cut and dry until i read all your guys stories and now dont seem cut and dry he explained to us that the reason she has chiari is because a childs brain some times grows faster than the skull and that she may not need surgery when the rest of her body catches up but then the symptoms worsened and we decided to do the surgery and then he came out to tell us after surgery that it was a good thing we did not wait it was worse than seen on the mri and usualy when he cuts the brain cover the fluid starts to flow out but hers was so tight the tonsils actually buldged out and blocked it off so he carterized them and then the fluid started flowing sewed in a patch and closed her up and he gave us some really good before and after photos and a photo of the patch we are just really concerned because of the amount of pain she is in.

[selmaS]

May I ask was this a chiari specialist?

There r NS's and then there r NS's that do focus on chiari and chiari related issues....and that can make a difference...plus, drs all have diff personalities....some just do not have a good bedside manor....u have to pull info out.

Just ask questions...ask the nurses, the PT and the PA...if they don't know, they will ask the dr.

"selma"

[skinnyinc]

sh is starting physical therapy today but the pain is pretty much all the time. I wish I would of asked more questions he made it sound pretty cut and dry to us

[selmaS]

I have to admit, I laid around quite a bit too...but was forced to move.
But I was not in intense pain....but it was managed well with the meds.

A leak would be indicated if when ever she sat up she was in pain...lying down resolves after a while...doesn't like light or sound.

The drs should be able to check her for this.Ask that they look to see if something may be going on, or if it is just her age and communication with her....u may have to force her to get up and do things if she does not have  a leak.

"selma"

[skinnyinc]

she is still in the hospital and they are staying on top of the pain meds they cut the morphin down quite a bit and she is also on lortab and today the decided to try valium she has not done nothing since last wed. (6 days ago) after her surgery except lay in bed in pain. How do we know if she has for lack of better words sprung a leak?

[selmaS]

Hi and welcome to the Chiari forum.

Well there could be several things going on...one, is she still on pain meds, and on schedule?
U need to stay on the schedule to keep ahead of the pain and not let the meds wear off.

The other issue could be that she may have developed a CSF leak.

Was she released from the hospital already?...when do u have a post op with the dr?

The last issue  is that pain can return and or symptoms can as we heal...it is the nerves changing in order to work properly...some drs describe it as they r coming alive.....

And it can take up to 2 full yrs until she is finished healing .....and that long to see all the benefits.

IMHO 3 to 6 months is a bit overzealous to see a new child...but, u will see the benefits begin. We r all diff and she may bounce back sooner...it all depends, but with her other medical issues...I would say be patient unless she is in dire pain...then deff call her chiari dr.

"selma"