Finding a Dr

[BOOTSIE80]

Hello..I am 54 yr old  female and I have a 16mm Chiari and fortunately my symptoms have been tolerable in the past but the past couple of years have gotten worse.  The last month I am just besides myself.  Terrible back of head pain, pain behind my left ear, neck pain, shoulder pain, arm pain, face pain etc.  I do not know what to think.  In the past I have had Drs tell me this isnt causing me any problems.  I am one of those women who always write my symptoms off to other things like the past 6 months my memory has gotten terrible and I blame it on menopause.  I have been having some problems with choking, not with food but seems to be with like while I am just swallowing saliva I choke and I have been blaming that on acid reflux.  I dont know what to think or who to see.Sometimes I am in so much pain I feel like I am hurting everywhere and then I think to myself I know I am not a hypocondriac, come on get on with it the Drs told u this is nothing!! I am in Northwest Indiana about 30 minutes outside of Chicago.  Any information would be helpful

[PurpleForPeeps]

Dr. Nicholas Wetjen at Mayo, Rochester just operated on my little one.  He's wonderful.

[frankie_rush]

You need to Call Dr. Troy Payner.  He is at IU Health Methodist in indianaopilis he is the doctor that did mine and heis good.  I am not making a decision for you but only recommending him.  He has done several papaers on Chiari.

[selmaS]

  Hi and welcome to the Chiari form.

As Abby mentioned u r not crazy.... unfortunately there r more of us with Chiari then there r Drs that know just how it can and does affect us.

U mention that u have had Chiari, but it was manageable....and many of us have learned to live with our symptoms and considered them from something else or just considered them "normal".

What u did not mention is if u were tested for a CSF obstruction, or related conditions to Chiari like syringomyelia, tethered cord, ICP, POTS, disk issues, or ehlers-danlos.

  Many of us with Chiari do have reflux, but a good number of us also have ehlers-danlos too, and it  can affect us more then some of these Drs realize, so this is something u want to rule out b4 u consider surgery.

As Abby also mentioned u need a true Chiari specialist....we do have a list here of Drs the members here have been to and liked, the list is NOT a referral and is meant as a tol for u  to use to research Drs as all may NOT be true Chiari specialists...I encourage u to visit a few compare them and go with the one u feel most confident...and educate urself on what the Dr should be testing and asking u so u will know u have the right Dr for u.

[Sabbynal]

Hi there, you are not alone, and you are not a hypochondriac either. Your description could stand in for many people on this forum as pretty typical Chiari sypmtoms. Here's what I do know, symptoms do increase at a certain time, often after something has acted like a trauma to the Chiari area.  After that point, they don't go away on their own, seek a specialist. Which brings me to the other thing I know for sure, MOST drs do not have the first clue how to treat a Chiari patient. You need to find a specialist in Chiari. Just seeing a really good NeuroSurgeon will not do. They need to specialize in Chiari, and some of them will even tell you that.

The back of head pain and the pains on a specific side of the body have to do with your cerebellum being squeezed and your nerves affected by it.  When the symptoms accelerate, they can often get increasingly worse in a very short peiod of time. As waiting lists to see specialists may be long, you need to get connected with someone now. This forum has a list of Chiari specialists in different areas. My doc is in Arkansas, which may be too far for you, and there are others closer.

Your memory issues, textbook Chiari. Ever find that you cannot find a word when you need it, even normal everydaywords? The swallowing thing is typical too. Your neck space is crowded with brain matter that shouldn't be there. It makes sense that it's hard to swallow. Do you get light-headed when you strain, or cough, or laugh too hard? Feel lop-sided and unable to get your bearings visually? These are just some normal Chiari symptoms. You need to be seen.

Most importantly, you are not crazy. I'll say a prayer thay you get to see a dr who can really treat you very soon. In the mean time, try lying on your side for a little while when the symptoms are bad. Weather changes make them worse, but there's not much to do about that. Best of everything to you!
Abby