Chiari Doctor NJ

[whychiari]

Hi there - my 9 mo was dx with chiari 1 with a 5mm herniation. at a follow-up recently, we did another mri and found the herniation to be 8mm now. she is a happy walking toddler....it doesnt seem like she is having symptoms, but maybe she is feeling headache and cries and we mistake it for food/diaper etc..

We are in nj - How is Dr. Thomas Steineke? does anyone know his success rate?

Also does anyone know how infants behave to chiari syptoms? what sort of neurological or learning issues should we watch out for?

Thanks so much.

Mike

[selmaS]

  Yes, regardless if it is the same machine, if they looked at a different slice it could appear to grow or shrink when in fact it remains the same......

Not true now, TCI does take INS ....the change took effect when it got a new head....and it was only him that was taking INS now  all the NS's there do.

May I ask..the CSF effacement comment is there more to it, b4 or after?....

When I was an infant my mom said she tried to get me to sleep on different sides so my head would not end up flat on one side (soft heads as infants) and every time she would flip me, when she came back I would be back on the other side....as I got older I could explain that it hurt and was very uncomfortable to lay on that side....it bothered my neck. The Dr said at the time...don't worry about it, she's a girl and her hair will hide it (flat side)....


They had no idea back then.....and for me looking back and having my mom tell me these things may help someone else.....a child has no idea about some of these symptoms as we just consider them our "normal" as we have always felt like that and are not aware it shouldn't.

[whychiari]

I totally agree with you regarding multiple opinions and taking the time. It is very important to get the right doctor with whom we would be very comfortable.

Thanks for the explanation on the herniation measurement.

The MRI was done at the same place with the same machine.

If I understood you correctly, the herniation could always have been 8mm and the first reporting could have been erroneous because that slice might not have been looked at. Would that be fair?

I had read somewhere on this forum that TCI doesnt take insurance. Isn't that true?

We havent done a CINE MRI yet. A Spinal MRI was done and everything looks normal.

There was a comment in the brain MRI that there is effacement of CSF - which I am trying to understand and am not completely sure what that means.

So far, she sleeps in all positions; some that looks so weird but cute for a baby - could never visualize an adult sleeping that way :)

regarding vomiting - I think she has done it a few times but it seemed it was almost always when the food didnt gel with her - like she hated some of the really sour gerber cereal...

regarding constipation - yep, we have seen that as well and the pediatrician says that all kids go through constipation - so not sure what to make of it yet...  

Thanks much again...

Mike

[whychiari]

Thanks so much. I have only recently begun to start researching different doctors and as a number of folks have mentioned on this forum, it is difficult to gauge their efficacy. There are NS and then there are Chiari NS and then there are pediatric NS and everyone has their own way of performing the surgery etc. So it gets difficult to gauge what might be the least risky approach.

Sometimes I feel very disappointed (not just for chiari; in general) when success rates/failure rates of doctors are not published.

When someone thinks about investing in stock market or otherwise, they tend to look for historical records and approaches etc. This is for money which is an important asset.

But when it comes to most important aspect/asset - your health/your kids health, there is no way of measuring the doctors records etc.

Could I request something: Would it be ok for you to ask your friend to post his/her thoughts to this chain regarding the experience with Dr. Steineke? I will understand if they dont want to; but it would be helpful. Thanks much in advance.

best,

Mike

[selmaS]

  Hi and welcome to the Chiari forum,

I am not familiar with that Dr....but you are close to NYC I would suggest at least getting another opinion of either Dr B or TCI....both are well known and established Chiari Drs.......

As for the herniation size growing....that can be an illusion.....sometimes, the herniation can appear to grow or shrink and it is due to the slice looked at during a MRI if this is not exactly the same slice it can appear to have grown.

So to explain this better imagine the back part of the skull there is an inverted pear...(posterior fossa) if cut into 3 sections it can appear to be different sizes depending on which slice you look at....if you look at either outside slice they may be similar....but to look at the center it can appear it grew when in fact it may be stable and that section not looked at b4.

It is very important that when MRI's are done the same machine at the same settings are used to determine changes.

Also you did not mention if a CINE MRI was done to check  CSF flow or testing for other related conditions...Syringomyelia and ICP, POTS,** sleep apnea** (especially in children should be ruled out), tethered cord, ehlers-danlos.....

For most of us, we adjust to most of the symptoms and consider them "normal"....to know if an infant is experiencing pain or symptoms may be difficult as it may not be how we would expect....you may find they sleep on one side of their head.....refuse to sleep on one side can indicate it is painful or difficult to do ......they may have periods of constipation and or the opposite....reflux and vomiting....may not like bright lights....loud noises/sounds.....or crowds.

Make sure ALL related conditions are ruled out as they can cause not only the same or similar symptoms...BUT can affect how she feels or heals post op should you decide to go with surgery if it is suggested.

Take your time and see a few known Chiari specialists....having the right Dr is key!!!

[lasel22]

A friend of mine knows a child who was operated on by Dr. Steineke and he had a good outcome.  But I personally never met him.  

My PCP told me to see Dr. Neil Feldstein, but he only sees pediatric patients so I wasn't able to make an appointment.  You could check him out.  I think he sees patients in NJ as well as NYC.

If you are willing to make the trip there is always The Chiari Institute and Dr. Bolognese at NSPC in Long Island.