Neurologist/neurosurgeon

[butterfly8446]

I recently got mri for my chiari and syrinx. My new family doctors office called today to tell me I have a syrinx in my spine. I already knew that. But they are recommending I see Dr. James Fulop here in Ohio. I had planned to go to the Mayfield Chiari Care Center in Cincinnati Ohio. Do I see Dr. James Fulop first, only go to Mayfield Chiari Care Center, or both.  Dr. James Fulop is not a Chiari specialist. As a matter of fact, my husband sees him for obstructive sleep apnea.
Any help with this question is appreciated.
Thanks

[selmaS]

  Be advised, if u want them to treat the syrinx, they they should be a chiari specialist bcuz as u said they treat Chiari in hopes of shrinking the syrinx...u deff want a Dr well experienced as there are other related conditions that can affect the outcome no matter what the original intent is, syrinx or Chiari it is ALL treated the same , so u still want a Chiari specialist., JMHO

[butterfly8446]

I hear you Selma. Mostly venting my frustration. Got back on the saddle today after licking my wounds. Found a neurologist here in Columbus but she is not a chiari specialist. I'm going to just work on the syrinx for now and see where that takes me. I read it's easier to treat a syrinx resulting from chiari because you just do the decompression surgery and the syrinx disappears (if everything goes right), but a syrinx not chiari related requires a shunt once things get really bad and possibly more surgeries in the future to maintain the shunt. From what I've read, I do not want a shunt.
I keep telling myself to slow down and quit imagining the worst. The doctor may have some good news. I'm praying the Lord gives me peace while I wait.
By the way, you must be right when you say"I know it seems like a never ending battle and a waste of time...but we learn from all of it," because you seemed to have learned a lot and are blessed to pass it on to others struggling as you.
Thanks so much

[selmaS]

  Hi I know it seems like a never ending battle and a waste of time....but we learn from all of it  and who knows, mayb they know something we all don't.

I know the $$ aspect it the harder part to all of it too, as I am in the same boat, I avoid seeing Drs bcuz of what it is going to cost....sad really we have to do that.

If u had a trauma to ur back, I can understand y the Dr would try and see if it was something other then Chiari,....so many do not realize Chiari can and does cause a syrinx in ALL areas of the spine....mayb they need to see u to believe...?

[butterfly8446]

My physician says that, at this point, she is not concerned with which doctor I go to because it's been going on far too long and it's critical that I see a neurologist, whomever I chose. She says that I've already suffered a concussion, what if something worse happens next time. I'm feeling the same way.

[butterfly8446]

Well, confusing news. Mayfield Chiari care center called to schedule me with a different doctor( Dr. Berger and not Dr. Bohinski) because, after reviewing my MRI, he does not think the syrinx and falls are related to my chiari malformation. His reason is that he doesn't see a blockage of CSF flow and that the syrinx must be from something else. Of course I'm no expert, but it seems to me that with the chiari, syrinx, falls and mild scoliosis, this is all related to the chiari malformation.  How can he come to this conclusion without even seeing me and without doing a CINE flow study? Maybe it isn't meant for me to have the surgery, but I just want the falls to stop and the pain to stop. Feels like I'm not in control of my own body.
They still want me to drive all the way to Cincinnati to tell me this and to get Dr. Berger' s opinion. I would think that if they work in the same place together, they will probably agree on the same thing and I will waste my money and time driving there. Here we go again. This really seems hopeless and is why I gave up the first time.

[selmaS]

  Hi...I would suggest u go to both....one reason is many with Chiari also have sleep apnea and u will need it to be ruled out, so to have a Dr that treats that is a good thing.

And this will help keep ur PCP on ur side as u can show him the info from both and he will agree to the BEST care for u,.

Where u go is ur decision, unless u need ur PCP to refer u...depends on ur ins....

[frankie_rush]

I agree with them both yes got to the Mayfield Chiari Care Center in Cincinnati Ohio, they are the specialist.  But respect for your doctor and him for making the appointment.  Unless you call him ahead of time and talk to him and ask him how much he does know about Chiari.

[Sexybare]

My opinion. See both, just for info on what they say. But def go to the mayfield chiari care center. Don't hurt to hear the other drs thoughts tho. Wishing u luck with specialist. That's the imp apt....

[linnielou232]

This is up to you, but if he isn't a specialist I wouldn't recommend going.  I suggest you go to Mayfield and see if your comfortable with them first.  Wishing you the best.
Linda :).;,