4 year old with chiari malformation and IIH

[whishn]

I have a 4 year old son diagnosed with IIH (idiopathic intracranial hypertension) and chiari malformation.  I just got the news from the neurosurgeon that they are scheduling him for chiari decompression surgery August 28.  It is being done here in Cleveland, at the Cleveland Clinic. They said it is being done laproscopically and he should only have about a one inch incision.  I was wondering if there is anything i should know, or what questions I should ask.  I have been online researching this, and it is scary.  I am excited for my son, though, that he should be feeling much better soon.  If anyone knows of any good websites or support groups, that would be great.  Thanks.

[selmaS]

Hi...I did have a patch, it was made from my own skin. The NS harvested skin from under my scalp to make the patch.

Some NS's will use bovine, cadaver a titanium mesh plate or retrieve skin or a tendon from the patient.

If the NS is not planning on a patch it could be bcuz he is not doing a aggressive form of PFD.....not all open the dura and do not require a patch.

Keep in mind, drs use their own opinions of what they feel is best...there is no one set standard bcuz we r all so different and require different things.
Like I could not have had ne of the other patches bcuz I have another condition that would have made me a high risk to reject it.

I know what u mean, we all wish we could get fixed, but it is not a reality.....but many have found relief and less pain after surgery and the healing period.

"selma"

[whishn]

It's disappointing to know that anything could trigger more surgery.  Even though I know it may not  be over, I'd hope he'd just be ok after this.  I worry so much, and very stressed about it.  I saw your pictures, and glad to hear the surgery did benefit you and you're better than before.  I could only hope my son who's only known pain, will know no pain.

I heard they do not put anything over what they've taken out.. a little concerning, but don't know why.  Did they do that with you?

[selmaS]

Well, once dx'd with chiari a chiari dr will say no contact sports, roller coasters...ect.....and it is the same after surgery bcuz there is no cure for chiari ....only treatment to slow the progression.

And , it is possible to need surgery again sometime down the road.....a fall, MVA or ne trauma can trigger it again.

I am still in the healing process after surgery....mine was May 27th of this yr......
but I do feel better than I did b4, but it is too soon to know which of my symptoms are gone for good....I can say for now some are gone, some have come back, but not like b4...and I do not have ne new ones......I do have alot of itching from the hair growing back.....I also have a condition in which I heal slowly, so I am not sure if I am on track with the avg......but we r all different and I am happy I am progressing.

I did add a journal to my profile page in which I posted my experience from my surgery along with pics.

"selma"

[whishn]

you mentioned that you had this done.  Do you feel better than before?  what are your restrictions now?  I've read people cant sleep on their stomach anymore, some had mucle weakness, and some children cannot play contact sports, headaches remained...  any of this with you?

[selmaS]

I understand, I had my surgery on May 28th and I know how I felt...totally unprepared.

SInce we r all different it will be hard to say what to expect exactly...but he should be in ICU a day or 2.....and it also depends on the NS as to what meds he will have...I got sick in ICU...the Dr felt it was from the anesthiesia, but I have had several surgeries within the last 2 yrs and never got sick...so I knew it was from the morphine.....and as soon as the meds were changed I stopped vomitting.

The other issue for me was the noise in the hospital hallways from the staff...I wish I had earplugs...and u deff have to keep the door closed. I am sure they will allow u to stay in his room....ask ahead, they should be able to put a recliner in the room for u.

If u have ne other direct questions please ask....

I was wondering, does ur little guy have acid reflux/gerd also?

"selma"

[whishn]

It is the chiari causing the IIH, as he does not have hydrocephalus.  

His symptoms fully are unknown due to his age.  But, he has speech delays, some hyperactivity.  He has a very hard time staying still.  He also is extremely farsighted, but the doctor said that in adolesence it should disappear.  He is extremely mechanically inclined, and a pro at video games, i just think his communication suffers.  He has what they call "failure to thrive", and is at the bottom end of the growth chart and is small for his age. He also has some skull and face shape abnormalities, and we went for genetic testing with him and they found nothing..  His heart, hormones, and bodily functions are also normal.

He does say sometimes that his "brain hurts" and sometimes hits himself and says "stupid brain"...  I dont neccessarily know how made the correllation to that being his brain, but he is a smart little guy.  

I just feel that we are not enough informed on what to expect during the hospital stay, or post-op.  We are at the cleveland clinic, and even though they are really highly rated, I am very surprised at the lack of information we have.  Thats why I am looking for answers..

[selmaS]

Hi and welcome to the Chiari Forum.

So sorry ur little guy has this condition.

I have heard many pros and cons on laproscopic decompressions.May I ask , did the drs feel the chiari is causing the IIH or was there hydrophalus that caused the chiari?

This is a great place for support.....ur local area may have a group that meets, ur drs office should have info on that.There r many of us that have had the decompression surgery already.....u can ask us nething...

Also, I wonder if u wouldn't mind listing his symptoms?

"selma"