Second NS opinion from U of M today. . .

[turk911]

Well, I must say today was a much nicer appointment for us. We received the same information, but will have further testing. This NS took time to listen, talk to my dd and us and I felt like she really heard what we said.  She feels our dd has a mild chiari and from what she could see on the MRI does not believe that she will require surgery.  She does want to follow this up with an MRI of the spine and neck with contrast to watch the spinal fluid to be certain that it is not impaired or blocked.  This will also rule out my question of her spinal curve etc.  Overall, she believes my dd has migraines and suggested a neurologist for medication.  Much like the first NS, but very thorough and I didn't have to ask about fruther testing, it was a given that it would be done.  She wants to wait a month or so, just to see if there is any change in that time.  I am releived and quite comfortable with this evaluation.  I am looking forward to further testing to be certain, but this NS was all the first one wasn't, which in a nutshell was thorough.  OH yea, she basically said, its not the size of the chiari, but the symptoms it causes.  Typically, with chiari, the headaches act differently than my dd's. . . but she didn't have a "magic number", like I said, she simply listened and I felt we were heard and treated as a patient.  Thanks for all your support and listening and suggestions, I am truly grateful to have found this site when I really needed it most! I will certainly keep you posted on what happens with this.  

[*Stormy*]

That was the thing that sold me on my NS...he sat down and gave me an hour of his time and there was no rush..and he listened to everything I said and just validated me. He saw the Chiari but didn't rush right to saying that was what it was until he looked into it a lot more first. It looks like you have found the right one..I am so glad they are doing the right tests w/o you even having to ask!
Hopefully this will help you rest easy for awhile..having someone who is taking charge of finding out what is wrong with your DD.

Carolyn

[selmaS]

This is the most important step...finding a dr u like and feel is working for ur best intrests...wonderful !!

And, it is so true that many of us have symptoms and do not even consider them symptoms as they seem like normal experiences for us....

Sounds like u will have great care for ur DD.

"selma"

[turk911]

Hey guys!  As you know docs are not one size fits all. . . my dh thinks I ruled the first one out b/f we ever met him.  I gave him a chance though, we just didn't click.  I mean, he didn't even want to follow up with us again!  Today we met with Dr. Karin Muraszko.  She was very patient, unrushed and willing to listen and like I mentioned, it was a given that she would to more testing and follow this case.  Talk about night and day.  She is not a Chiari specialist per se, but on the U of M website it is one of her specialties and she said she will see 4 more like us today!  She was so thorough I didn't have to ask more than 3 of my questions!  I really liked her and her manner.  She had a way about her and I found comfort when she described what she looks for in symptoms and her thoughts about our MRI, which she didn't show me, but made reference to many times.  She had a nice thought process.  Although it was my first meeting with her I feel I am in capable hands and I trust her!  I felt like the first NS was not seeing us as a patient in his office, but a written black and white case. . . it was weird.  He acted like he was listening, but he contradicted EVERYTHING I read about when researching Chiari 1.  Dr. Muraszko rather confirmed what I have read, expanded on it, compared it and applied it to my dd.  When I told her I think my dd has a curve and is off center, she looked at her, I saw her eyes go back and forth, I could see she quesioned me and I told her she is off a little bit, she had her bend over twice. . . and then she admitted she saw it too, but also that it was slight, barely noticable.  The first NS suggested, lifted her shirt, had her do a partial forward bend and that was it, yup, take her to an pediatric ortho. . . imagine my surprise.  The only reason I saw her off center appearance was because scoliosis was listed as a symptom on some literature I read and she is a swimmer and I she looked a bit off in her suit one day.  It may be nothing, but I doubt I would have picked up on it myself.  My big concern is, what if all this is just starting for us and we have the chance to catch it early?  I am so releived about the testing.  Someone else suggested that she may have symptoms and not even recognize them, which is true!  Anyway, I feel good about where I am right now.  That first NS made me feel like I was making a Mt. out of a mole hill, the nerve!  I will get over it soon, its just unthinkable you know??  Well, once again, thanks to all of you who cheered me on, pat my back, walked with me and prayed for us. I intend to keep you guys in my prayers as well, never underestimate the power of prayer. . . Barb, thanks for looking in on me, you are a very kind and concerned woman, I appreciate all of your caring.  Keep me posted on your story, I will too!
Shannon

[mikeysmom1995]

Hi Shannon,
I am glad that you had a good appointment today, and that you got some answers to your questions. If you don't mind, who did you see today at U of M?
I posted on the other thread from yesterday to your reply today, sorry I missed this one before I posted.
Barb :)

[selmaS]

I am so glad that u found a dr u like, please do keep us posted and when u feel ok about sharing this  drs name on the list I would appreciate it as I know others that may live in ur area.

"selma"