My sister in law needs help with finding a specialist

[Kristen_Kuehl]

Are any of you familiar with Avera Health care? It is like a Kaiser Plan I guess, for South Dakota.

My sister in law has this and they are giving her migrane meds for her Chiari Malformation. =( and telling her that there's nothing she can do and they are not telling her what type she is or anything else. She has escalated quickly in her symptoms, over the last year and as of now, all it takes for her vision to go black, is one of the kids to bump her head. She needs a specialist but if you are familiar at all with the type of insurance, then you know she has to stay within the hospitals network. I dont know anything else about the insurance but anyone who has experience with this and can offer advice, would be welcome. We believe this was acquired and not congenital.

[selmaS]

  Hi and welcome to the Chiari forum,

Many times Chiari can sit dormant or the symptoms are not that noticeable until something happens, sounds like you had a CSF leak which may have triggered yours to flare.

Size of the herniation should not be a concern as the length can be very long and not cause issues, but it can be short and cork things up...so the width is more of an issue...and if you have a CSF obstruction.

There is more testing to be done, and research to find the right Dr for you and education so you will know the Dr when you see him/her.

I think so many of us have also had what we have dubbed "the Royal Chiari Run Around" each Dr we see has no idea, so they send us to another one and another one....and none of them know enuff about Chiari or related conditions to offer help.

But there are good Drs out there...and that is why we do have a list of them here on this site...it is not a referral nor an endorsement of those on the list, it is only meant to help you research Drs....a starting point...and it is up to you as to whom you feel most confident in and comfortable with.

[kwalker0004]

I was right where you were back in January. Though I had migraines since I was 15 after one night of learning how to free dive. That's when all but slowly my life became a living nightmare. No one believed me the first few years besides my dad because I never complained of pain or wanted to miss a day of school. But eventually when it started to last for a week at a time my dad was really concerned but couldn't get a doctor to believe us. So I basically self medicated 10 years taking between 10 to 15 500 mg of Extra Strength Excedrin a day to get rid of migraines.

Then when I went to my PCP, he really was concerned so he ordered the MRI right away. We got it taken care of. As soon as we heard it was Chiari, he told me he didn't know much about it but he knew a ns that did and he would be in contact with him so he could learn about it. So we could both learn together and understand this. So im also thankful I have a ddoctor who admits he doesn't know everything but who isnt afraid to learn more to help his patient out. That let's me know he truly cares about them.

Best of luck in your journey. Don't give up!!! Fight fight, even though we all feel alone and these doctors act as know it alls we know different. We are strong together maybe we should stand up let our voices be heard and maybe these doctors will actually began to learn more about this condition to accommodate us all including those who suffer from cluster headaches.

[Kuehljessica]

Hi my name is Jessica.  I'm married and a mother of 4 amazing kids! My sister in law Kristen has been talking about me above!  :)  My headaches started when I was pregnant with my third child. He will be 2 in August. Shortly after having him I got pregnant with our 4th. She was born in January. I had my first ever eppideral with her. 2 day later I had the worst migraine of my life!  They did a blood patch but I have had headaches or migraines everyday since. They sent me to a neurologist and they put me on Topamax (which I absolutely hate). They have told me I have eyegraines. I fought with them to get a MRI. I finally got my MRI on June 4th. A week later they call and tell me I have Chiari... That's it no explanation!  2 weeks later I have my neurologist appt and they don't even discuss my MRI or my Chiari.   I had to ask them about it and they said it's no big deal, it's common and it's probably not even causing my headaches. They didn't even tell me how big my hernia was. I went to see my reg doc yesterday and he tells me that it's type 1 Chiari and my hernia is 6mm but is probably not causing my headaches because it's not that big!  Just get more rest he said!  I'm just getting more frustrated and would like some answers but nobody around here seems to be able to do that!  Thank you so much for your help Kristen!  Love you!

[selmaS]

  No worries,.,...I thought that is what you meant....but many times with a congenital condition like this, we tend to have symptoms but are not aware they are symptoms as to us they appear to be "normal" our normal....so if she is like me, may realize she has had symptoms far longer then she thought,.,..as Chiari symptoms can come and go for short or long periods of time...and some symptoms can be ignored as we may consider them the result of other things....

And it is true Child birth or a fall, car accident,  hard sneeze or cough could trigger symptoms to flare....

  Keep us posted.

[Kristen_Kuehl]

Sure will, thanks again! I sent her the link to this thread so that maybe she can jump in directly. =) I only have so much information and I only found out she was having any problems at all, yesterday.

[Kristen_Kuehl]

above, to Selma, I mangled my words... She had been asymptomatic her entire life thus far....   =) my brains going faster than my fingers.

[selmaS]

  I was given all sorts of pills for migraine and anxiety when in high school...Drs most of them do not have a clue especially with this condition...so it is no wonder she is not getting the help or guidance she needs...lucky for her, she has you.

OIC...I am not familiar with Avera....only that we had people in CS use a Dr that knew Chiari and worked with Kaiser.....

She may want to look into clinical trials , if she is not able to locate a Dr in her area....

Keep us posted on what you find out and how she is doing.

[Kristen_Kuehl]

Thank you K, for replying. Even hearing others stories helps with understanding the fight. =D  I am a firm believer that you cant give up and the more help the better when it comes to your health. I recently went through this with my own father and CLL. Like Chiari, it is also a difficult condition to find good Drs for. If all that I can do is research, educate and support, I will be glad to do so. If it helps even in the least. That is what family and good friends are for.

Anyhow, I will pass on the encouragement to her about the insurance and that maybe not accepting defeat with them may turn out for the better and worth the fight! Thanks again!

[Kristen_Kuehl]

thank you so much for your input. I am only speculating that she could have acquired it, seeing as how she had not had asymptomatic her entire life thus far (since having her third child and even more drastically after her 4th child). Although I know she could have had it and had no symptoms, as well. But like I had mentioned, none of her Dr's are offering any information or guidance other than pushing migraine pills down her and telling her that her herniation is "not that bad". But we have no real conformation.

She does not have Kaiser, she has something to the equivalent of what Kaiser is for us here in CA. Its in South Dakota and is called Avera. I only used Kaiser as an example to those who may be local to me and not her. =D But any information in regards to Doctors who can point us in the right direction or offer some assistance is much appreciated.

My own father was recently Dx with CLL and it is also one of those conditions that not too many Dr's are familiar with and they tend to downplay the condition due to what I assume is a lack of knowledge or a desire to portray that lack of knowledge. Either way, I did a LOT of searching, reaching out and found some excellent resources to get him with someone who would be good for him. I would do the same for anyone I care about. Its all i CAN do, so I will. =D thank you again, Selma.

[kwalker0004]

I had to fight my insurance company to go out of network. I finally got approved. It took six months to do so and a really scary accident with my horse for it to all happen. But my insurance is finally agreeing with me to see and out of state specialist in August. So it was well worth the long fight. It took a lot of paper work and a lot of calls to make sure there were no available doctors with in an hour radius who deals with at least one and a suspected other condition the the current NL I see believes I have. And once it turned out there was no one available my insurance agreed to pay for my doctors visits. But I must pay for any test or surgeries or services that are not done in the state of Maryland. But my family and I will cross that bridge when we get there.

Best of luck you your sister in law. Thank you for seeking help and advice on her behalf. We don't get much support from family members. But unlike so many I have most of my family and my adoptive family in my corner. I couldn't ask for more. They have seen me suffer. They seen me at my worse and they are finally happy i am able to get some answer's for once.

[selmaS]

  Hi and welcome to the Chiari forum,

I want to thank you on your sister's behalf as many of us do not have the support we need from family as it is hard to find Drs that listen and know how this condition affects us, so to have someone know, and advocate for us is fantastic...she is lucky to have you.

May I ask why you feel it is acquired and not congenital?

We do have a list of Drs...and the only ones I am familiar with that work with Kaiser are in CA.....the list is not a referral nor an endorsement for those listed it is just meant to be used as a tool to research Drs.....I will bump the list up for you.

Maybe one of the kaiser Drs will be willing to consult with a Dr that is a Chiari specialist on the list and maybe kaiser will allow for her to visit one outside network if she appeals...some insurance will allow an appeal if there are no specialists in the area....

Keep us posted on how the Dr search goes and how your sister is doing.