What else?

[bledpub]

I don't have a specialist in my state and the only one out of state that takes my insurance is the one I've been trying to see. I am feeling underwhelmed by him and he's not interested in looking for a syrinx or any related conditions. I am feeling really depressed at this point and like a total failure as a mother and wife. I can't do things with my husband or kids anymore and I'm getting to the point where I am constantly miserable and in pain. The CINE study showed blockage on one side and I have a "moderate" herniation. The NS said that he would be "willing" to meet with me as a favor, but not for a few weeks. I have a feeling that I'm not going to get anywhere with him.

What else can I do from here? Has anyone had any luck with specialists out of state taking Medicaid from your home state? I just can't afford to go to TCI. I would like to, but I don't have the money. I could handle the travel expenses if I sold a bunch of stuff on eBay but since they don't take my insurance even if they thought there was a problem I wouldn't be able to handle any of the tests or subsequent stuff.

What else can I do? If there's another doctor or option out there I'd like to get the ball rolling now so that I'm not getting pushed back even further to see someone. I've already bee trying to see a specialist since December. The past few days have been really dark for me and the symptoms just seem to keep getting progressively worse.

[selmaS]

  I am not saying to not to continue to push for answers, I am saying to not be hard on urself and to allow urself to breathe....

I am so sorry for ur loss and I know it had to have an enormous affect on u and how u r approaching this....

And I certainly did not mean u can think about SIDS or something else and cause that to happen, but if u r negative and focus on the negative more negative can occur....as with when driving on ice and u begin to slide, we r told to look where u want to go, not where u fear the car may go...if u look to the ditch, that is where u will end up....look where u want the car to go to help direct it...and that is what I meant. I apologize if it brought up bad memories and it is not that u do not have reason to be concerned...u do....but u have to also give urself more credit then u r.

[bledpub]

I know you have no way of knowing this, but a week before my son died I wrote on Facebook that I had an unnatural fear of SIDS. Someone commented and said that I needed to not worry about it and that if I did think the worse then it could happen. A week later he died from SIDS.

I don't see this as me not being positive. I see this as me being proactive and trying not to leave any stone unturned in regards to my healthcare.

I have not have a good experience with Dr. Tew's office. I was simply looking for another avenue that I could get the ball rolling with, just in case the visit didn't go well. It has taken me 3 months to see him. I was going to get a second opinion anyway and thought I would see what actions I could take on that in the meantime so that I am not pushed back another few months. I will only have insurance until the end of August.

[selmaS]

  My advice would be to put some trust into the Dr and wait to see what is said when u do go to the visit.....I know u r limited as to who u may see with ur ins, but, Dr Tew is well respected and may know something we do not in regards to ur spine and what he has seen so far...be patient and see what he has to say and try to be positive in the meantime as constantly thinking the worst can cause it to happen or at least cause u more stress...and u do not need that.

[bledpub]

Yes.

[selmaS]

  R u going to Mayfield Clinic for Chiari?

[bledpub]

Yes, the one I am seeing is in Ohio. Vanderbilt doesn't take my insurance and so far the Indiana people seem to be going to Ohio. That's why I was posting to the board-to see if other people have had luck with places out of state taking their Medicaid. I have exhausted my own research with surrounding states and neurosurgeons. I wanted to hear if anyone else had had any luck.

[selmaS]

  Check with Drs in Ohio, TN, and Ill.....there r chiari specialists in those states and they do boarder urs......

[bledpub]

I don't qualify for any of the travel services. We've tried and tried for my daughter's sake to use all the ones that you have listed. We have never been able to utilize them. Even though there is only one center that treats her disorder and it's 1,000 miles away and her geneticist, pediatrician, and neurologist have all filled out the paperwork for her to go we make too much money to qualify for the assistance. And by too much money, it's crazy. We are below the federal poverty line.

I talked to my insurance provider. They said that I don't need to see a specialist so they won't cover any out of network. I've appealed it and was denied a second time. Apparently, they think that just as long as there is a NS in my state that has Chiari experience I don't need to go anywhere else. They provided me with a list of neurosurgeons in my state but none of them are specialists and out of the 5 they gave me, only 2 had ever done even done decompressions. So I talked to the insurance company about that and didn't get anywhere. That's why I am trying to find someone out of state that might take my insurance. Sometimes, neighboring states will. The NS I am supposed to be seeing right now is out of state but since he's just over the line he takes mine.

[selmaS]

  Hi...first for travel expenses there r nonprofit orgs that will fly u free of charge to Dr visits...see the Links artical in the Health Pages for more info.

Next contact ur states ins board that covers u and ask if they would cover u to  go out of state as u need a specialist and u do not have one in state that is able to help u.....