Possible 3rd surgery????

[kskirk]

My son was dx with chiari at age 5 and has had 2 surgeries (6/09, 06/11)  by the age 7 (current age).  His symptoms are coming back and he has a MRI tomorrow.  What are the odds scar tissue being the problem?  They have already taken a peice of skull and part of his 1st and 2nd vertibra.  His chiari was 18 mm, and he told me tonight he is scared that he is going to have another surgery.  I think the only thing else to do is duraplasty right?  But things are getting bad to the point he is missing school.  Is there such a thing as normal pain for chiarians (to me he should be pain free)? when do I say enough is enough?  Is it true that a duraplasty can cause more problems than it will help.  I am sorry to ask so many questions, I dont know what to do or who to ask.  Thanks for listening.  

Sarah

[sherimom]

Hi,
You and your son have been through SO MUCH - my heart goes out to you both. My son had one surgery, currently may need a second one in near future, we'll know soon. My son was almost sixteen with first and is now eighteen, so much older.

It sounds like he has a lot going on, but I thought I'd mention what the new specialist we're seeing said about the tonsils, you may want to check this or ask your son's NS about it. The NS told us that he has seen research showing that shrinking the tonsils can lead to an increased risk of tissue scarring after surgery. That is what they currently think is going on with my son.  Unfortunately, it can't be seen on MRI's, so everytime he's had one, all the prior doctors said everything is fine....grrrr....so frustrating! Until this doctor, in Madison, WI.  Love him!

But I just thought I'd mention it to you = I don't know if it's at all helpful. I honestly don't know that if I had known that I would have done it differently, you know? I think I would have still made the same decision, but it may something to consider.

Good luck to both of you!
Sherimom

[Rahe28]

I am praying  for you and your little boy. My son is also 7 and everytime he says he has a headache...I get sooo worried. I can ONLY imagine what you go through watching your little man suffer. I pray that everything works out for him. what a strong family to have gone through so much. Sending prayers and love <3

[selmaS]

  I am so sorry this is happening...be advised, those with instability have an increase chance of this getting worse after a PFD, as they do shave some of the C1 and C2 which u said was already done, this weakens that area....

Make sure he does his neck exercises post op to strengthen his neck muscles to help with this,

Did they also dx him with EDS?

[Rylanesmom]

We are praying for you too....so many of us had what your little boy is having in 3 surgeries in 1.  As Selma said they often do as little as possible with kids yet this does more often result in future surgeries.  Your little guys are so close together:( it wouldn't hurt to send your stuff to a chiari specialist for a second opinion.  It sounds like it will result in a need for surgery yet a chiari specialist may have (and would) do more testing that may result in more thourough or complete care IMHO.  I dont know anything about your NS or the kids specialists...not telling ou what to do.  Hugs and prayers....I have a 7 year old and can't imagine.  Also if he is saying duroplasty and that's all he can do ou may end up needing a specialist.  Cranial instability also is a sign of EDS and extra concern.  (I have this too)

[kskirk]

Well Jake will be having surgery on June 20th, he does have instablilty and so the Dr. said that after this surgery (durapatch and shrinking tonsils) there will be nothing else they can do. He has already removed part of his skull and part of C1 and C2. He said only if the instabilty gets worse that they would fuse him at a later date but that they are just going to watch him. Thank you all for your support though this. And I pray for all the families on here. ♥

[kskirk]

Well Jake had x-rays today to check for instibility, and came back that on the anterior flexation his c2-c3 are "larger than usually seen". They told us and sent a letter to his school that he is not to play gym or sports. Dont know what to think, we had to tell him today about his surgery and he just cried. I feel like I crushed his world today:'(

[kskirk]

I have already started my list of question. :)  Thank you again and I will let u know.

[selmaS]

  Good luck with the appointment on the 23rd....do ask about checking him for EDS...and what type of patch they expect to use.

I am sure they will have a list of things to tell u but make sure u get answers to those 2.

  DO keep us posted <3

[kskirk]

Talked toCincy today and she adivsed me to stay with Luciano. She said that with Ohio losing so many Neoursurgens and since Luciano is one of the best in Ohio and has already operated on Jake to stay with him. Or at least go to his appt. and talk directly to him before making an appt. So I will wait to talk to him on the 23rd, and we are working on getting x-rays for instibillty. We are unable to go out of state.
He needed the 2nd surgery because there was disminished CFS flow causing his symptoms to come back and worse, same thing this time:(  Thanks again and hope you all are doing well.

[selmaS]

  What did the 2nd opinion say was the reason for needing the 2nd surgery?

Just curious...as to what all ur DS is dealing with.

Many times with children they do minimal decompression's, no duraplasty they claim it is to avoid infection etc...but, many times the child has to go back as that type decompression does not make enuff room to alieve  the symptoms or allow CSF flow.

May I ask where u r going?....did u try Dr Frim in Chicago?...Dr Bejjani in PA?.....Not sure about the NS's in Ohio if they treat children.....but Dr Tew and there is another NS out there ....Dr Daniel P.....I can never remember ....ugh...oh well I am sure u can find it on our list ....

  

[kskirk]

We thought the first sugery was going to take care of it, then his symptoms came back and we got a 2nd opinion and he did the 2nd surgery in June of 2011 and told us that there was only a 90% chance that he would need another surgery and here we are not even a year out and he says he needs another surgery because his sympotms came back (in some cases worse).  So I again have to get a 2nd opinion because I do not want him to have to go though this again for the 4th time.  But yet he is having daily pain and I do not want to wait to long.  I am working on getting him a 2nd opinion tomorrow.  

[selmaS]

  Well I have to ask y is he in need of a 4th....did they expect this many when they started?

Sorry, but I cannot recall all that has gone one so far...and it is making me wonder....

  The thing is some of us do just have  these odd reactions to the surgery...there is no reason for those that develop  ICP post op...Drs have no idea y some do and some do not have this occur....some develop it prior  to surgery....

  But knowing as much as u can will help.

[kskirk]

Thank you, I just want to have all the info I can.  I do not want him to go this a 4th time.  So I am trying to cross all my T's and dot all my I's.  

[selmaS]

  They should use his own pericardium....skin harvested from his skull.....

The others cadaver, synthetic and bovine can cause issues for someone with EDS as they tend to have a higher chance of rejection, and this  may start as a leak or infection.

That does not mean he will deff not have an issue, it just lowers the chances....I had it done that way...also no stitches or staples...glue and sterri strips to close....bcuz  EDSers can have a more fragile skin that can tear more easily....

Again this is y it is good to know b4.....JMHO

[kskirk]

When doing a dura plasty what is your opinion (from what you have heard) what should be used if he does or does not have eds.  I dont even know where to start looking at options.  Thanks

[kskirk]

Thanks, I was thinking about getting an 2nd opinion in Cinncinati, I just pray that they will be able to get him in before.  Again thanks

[selmaS]

  I would suggest u find out b4 a dura plasty is done, and DO ask what type of patch they plan on using...those with EDS tend to have more rejection issues post op...as I always say, it can affect how u feel and heal.

[kskirk]

Well long story short, Dr.'s office called friday and after reviewing Jakes MRI he wants to do a duraplasty and shrink his tonsils.  I sked about eds and about instibility, and they told me to go to his reg. Dr. for the eds and that we would talk about instibility on April 23.  Just wanted to let you know.

[selmaS]

  Thanks for checking that...I know there is a Dr in Chicago ...A Dr Frim and he does treat kids with Chiari....not sure if this is a possibility for u.....

and again thanks for looking into MayField  : )

[kskirk]

Here more on Cincinnati Childrens:

http://www.cincinnatichildrens.org/bio/c/kerry-crone/

www.cincinnatichildrens.org/workarea/linkit.aspx?linkidentifier=id&itemid=57819&libid=57555

Hope it helps....

[kskirk]

This is what I found it said:  Mayfield works closely with Cincinnati Children’s Hospital Medical Center, one of the most highly regarded pediatric hospitals in the world. Adult and adolescent Chiari I cases are treated by Mayfield neurosurgeons; infants and children younger than 13 are referred to Cincinnati Children’s.

Thanks again for your help.

[selmaS]

  No worries...keep us posted...especially about the age of patient MayField Chiari Clinic sees....it  will be good to know : )

[kskirk]

Thank you so much........

[selmaS]

  I am not sure if they have age restrictions...the Chiari center at MayField is new...Dr Tew is not new to chiari...here is a link to their info.
http://www.mayfieldclinic.com/company_profile.htm

MRI's and clinical exams is how they can determine much of the related issues...or get an indication for them and follow with more testing.

MRI's of cervical  spine, thoracic, and lumbar to rule out  a syrinx in all areas of the spine, the cervical and lumbar help indicate if tethered cord is an issue.

CINE MRI looks for restricted CSF flow.

Beighton scale rates hypermobility for joints and other indications during an exam help dx EDS.

  Forms u fill out also help...so always report all symptoms even if u r not sure if it is related as it may be, or can be a related condition,