Pediatric NS for Chiari 1.5 more complex case?

[MLShelly]

So we've already been to 4 different Pediatric NS who all recommend surgery.  Most recent NS was closest to a Chiari specialist and the first to point out that my 5 yr old actually has more complicated Chiari 1.5 due to brain stem herniation and compression, along with his 27mm cerebellar herniation, platybasia and retroflex odontoid.    NS is ordering cine MRI with head and neck moved to multiple positions, sleep and swallow studies.  My 5 yr old is still mostly asymtomatic and no syrinx or scoliosis but his brain MRI pics result in every NS telling us surgery is inevitable.

So I wanted to see if anyone has any pediatric NS recommendations for complex Chiari 1.5 cases like ours?  New insurance kicks in jan 1st and we will go anywhere in the country to find a Pediatric expert in non routine cases.  I've already looked at the doctor list compiled on here and a few other sites and really can't narrow it down on my own.

[dare2dream11]

Dr Rekate in New York is a pediatric surgeon. He did my chiari 2 surgery and he was great!

[soccero]

hi! i just read ur posts and just wanted to add i would not suggest going to see dr campbell. hes a very nice dr but is NOT a chiari specialist and is not well versed on chiari imo .
mollu

[selmaS]

  Were all those NS's Chiari specialists?....there is a diff btwn a NS and a Chiari specialist.....

LOL...no, not more then 7,....lol...

I have a friend that was under age so considered a minor or pediatrics when she went to Dr Henderson.....and she is still a patient....I was not aware there was an issue....?? I will have to ask her.

As for the sleep study I did the one part at home and it was so nice not to try and sleep in a clinic......chiarians have issues sleeping so own own bed will help get a more accurate assessment.

[MLShelly]

Selma- I thought I heard through the grapevien (but haven't actually verified myself) that Dr. Henderson isn't currently seeing Pediatrics because of some issue specific to the hospital where he performs surgery.  I will definitely want to see him if he is seeing Pediatrics again though!

BTW, I just LOL'd because we've already been to not one but FOUR Pedi NS's and I'm even more confused than when we began this journey last summer.  I know I'm planning to set up at least three others now that we have better insurance.  Have you actually heard of anyone getting MORE than seven opinions? LOL

Honestly, I know absolutely nothing about sleep studies, except that the first NS recommended we do a Sleep Consult with a Neurologist at his hospital and then whatever study was recommended from there.  Since I don't have a chosen NS, I basically have to do my own research from scratch and approach our Pediatrician on my own and just ask his staff to write the referral.  (Pediatrician and his office was clueless when I asked for a recommendation.)  My son also had a EKG, Echo and Holter Monitor done yesterday (appear to be normal....monitoring benign premature atrial contractions) and the Cardiologist had no clue about sleep studies either.  I have to resort to google or the Chiari forums to figure this one out I guess.

[selmaS]

Hi welcome back !! Congrats on getting him on a better ins plan.

Well I can add to that list Dr Henderson in MD....If u see or consult with 3, Dr Henderson, Dr Frimm and TCI u should be able to compare them and see which u feel is right for ur DS.

No one should go to just one even if they r Chiari specialists....u need to compare what they say to someone  of the same caliber....u must also like the Dr and going to one limits that....we all will not like the same Dr for various reasons....so listen to ur moms intuition.

What type of sleep study r u doing?...Have u been offered to try the in home one? It is more relaxing  so better results. NovaSom is  a sleep study for in home and u can google it and see if ur Dr will use them....

[MLShelly]

I've been MIA for a few months.  I finally got my 5 yr old on my (much better) insurance so now I'm able to get a couple of NS consults outside of NJ.  

I'm contacting TCI this week and beyond this is where it gets confusing.  I've had so many patients/parents give me various recommendations....Dr. Campbell in DE, Drs at Duke, Frimm in Chicago, Keating in DC, Menezes in Iowa....and that's just for starters.  I have no idea how to narrow this down without randomly choosing someone.   I'm willing to go anywhere in the US for a true Chiari specialist with who is familar with complicated Pediatric cases.  Does anyone else have any Pedi NS recommendations since it's been several months since my original post??

In the mean time, I'm working on getting his sleep study and some other  testing done while I narrow down the Pedi NS options.

[selmaS]

  Well it is a connection.....my Chiari NS and his NL are the ones that DX'd it and there are far too many that have it for it not to be a connection.....

http://www.chiariinstitute.com/

http://www.chg.duke.edu/diseases/pdfs/Chiari_Newsletter_2012.pdf

Here are just 2 links......

Well I know they also do this during surgery as well....so they know where to do the fusion.... many of us do have a flexion /extension xray or MRI b4 surgery....this is to look for instability...

Each Dr will  take a diff approach as to how they do things....and I hope I am helping and not confusing neone....

[MLShelly]

Selma,  the first 3 NS said that there is no link between Chiari and EDS or never heard of connection, or said it was extremely rare.  I forgot to ask the last/good NS because I was so happy to finally find a Dr that noticed the Retroflex Odontoid and Brainstem herniation on his own without me pointing it out.  I individually came to this same conclusion before even meeting the first NS based on comparing my son's images to many others.  When I brought it up to the first 3 NS's, they dismissed my theory.  

BTW, the good NS planning to do that motion MRI looking at flow with head in different positions is done prior to surgery to help his plan of attack.  He also uses imaging during the actual surgery to help fine tune and make changes to original plan.

[Viva001]

As a type A myself, what better time, than to be the best advocate for your child!
I'd ask how many operations of this kind have they done, if you haven't already.

Personally, I'd be most comfortable w/#3.  Many of us here have had "surprises" found once the NS got in there.  We share the Chiari journey, but we have very individualized stories.

If it's any consolation, the ped NSs seem the most educated about Chiari!  My DD is a pediatric nurse, & she has taken care of many Chiari children; she said that they recover very rapidly.

[selmaS]

  Hi...in question 3 u ask if this is the same as a CINE....it is similar except it is done while the surgery is being done, it is in regards to the  fusion and where the best placement is for flow....so if with motion it blocks flow they may do a fusion where it is less likely to block flow, if with motion there is no restriction, no fusion would be done.

Have ne of these Drs checked ur child for ehlers-danlos?

[MLShelly]

Thanks for the replies thus far and any posted after I write this.  I think what's the most confusing is that each NS's surgical approach is completely different.  All agree on posterial fossa decompression, open dura and removal of posterior C1 vertebrae.  Where they differ is:

1.  First NS plans to cauderize and do a tonsellectomy to the tonsils and dural patch,

2.   2nd NS won't touch tonsils and uses no type of patch (said he lets body heal itself naturally and form its own patch (never heard of this). and

3.  3rd NS takes an individual approach once the patient is opened and uses imaging to assist during procecure and may OR may not do the tonsellectomy, plus will be removing C2 vertebrae and very minimal possibility of spinal fusion (but thinks not likely).  Said his plan of attack will depend on "motion" MRI where they move my son's head in different positions and see if CSF flow varies by position  (Is this the same as a typical CINE MRI??)

So far I'm only impressed/comfortable with this last NS and may ultimately use him for the surgery but I want to make sure there isn't someone even better versed in Chiari 1.5 that will point out some glaring issue that the first 4 NS overlooked.   I must sound very "Type A" about all of this but we have a few months before scheduling surgery anyway and (very shortly) will have much better insurance coverage to go anywhere I choose.  I guess I'm thinking if something goes wrong post-op,  I'll be less likely to blame myself as I had exhausted all options prior.  Maybe I can help guide others later on after interviewing so many different Pediatric NSs too.

[selmaS]

  Hi...Dr Frim in Chicago is a pediatric Chiari specialist and the NS's at TCI as well as Dr Henderson  all treat children...that I am aware of...we do need to make a peds list....

With the issues ur DS has the fact he does not complain of symptoms does not mean he does not have them....again, many of us are so accustomed to our symptoms we consider them normal.....

And with some of that compression he may not feel pain as it can be blocked from getting thru....so,  I am glad u r researching Drs as u want the best for ur son.

I wish I could tell u more, but not having first hand dealings with a peds NS that would be diff....

  Do keep us posted ((hugs))

[Viva001]

What a good mom you are, seeking out all those opinions.
I'm sure that you will get recommendations from others with direct experience, but I understand that Duke has an excellent ped. Chiari specialist.  They have a patient handbook online, which is helpful regardless.

I hope for the best outcome for your son.  You may actually see many of his issues resolve after surgery.

[DechenDolkar]

My NS is at the Cleveland Clinic. Her name is Violette Recinos and she is a Chiari Specialist. She is a wonderful and caring doctor and she sees both adults and children. I do not know how many complex cases she has had but I think she would definitely be worth consulting. I wish you the best!