Specialist for proper diagnosis

[codell]

I had an mri that showed Cerrebellar Tonsillar Ectopia 6mm on left and 8mm on right.  I haven't had any recent studies on my spine which really seems to have gotten worse since the levoscoliosis was diagnosed.  My last CT scan showed a lymphatic spread, 9mm nodule on my right lung, 6mm cyst on my spleen, multiple cysts about the ovaries (tubes are tied and I have a unicorneate uterus), fluid in the pelvis, signs of ishemic stroke, and I can't get anyone to see me because I don't have insurance.  My husband's insurance will pick me up in July, so I am trying to find out where to start.  I have Factor V Leiden Mutation, too.  I had severe weight gain in 05 and in 06 had 2 dvts in my upper left extremity and a pulmonary embolism.  My kidney function has been decreasing.  I have had 6 "undiagnosed" miscarriages.  In 08 they put me on meds because they thought I was bipolar, which I told them I was NOT and they put me on meds anyway.  I had SEVERE personality changes and finally made it through when I came off the meds.  I have since lost 90 lbs in a 10 month period and am now trying to maintain weight.  I can't go into all my symptoms at the moment, but I think we have enough to begin with, right?  I live in Georgia and am tired of people saying I'm crazy.  Now I finally have the proof...the MRI!

[selmaS]

Hi...along with the card, the Wellmark group should send u info on what is covered, if and what co-pays u would have.

Did u send in a payment?....

If u did not get an explanation of benefits call and ask them to send it to u.... keeping ur old plan with the new makes using insurance even tougher...the 2 companies may fight each other saying which needs to cover it....so, find out which is the better plan and do get rid of one.

Good luck
"selma"

[jenn077]

I saw some questions on insurance on here.. and was hoping you ladies coudl give me your opinions on my situation. I currently have health insurance through a local hospital, which very much limits who i can and cant see. I was upset when i found out about my chiari and the fact that i seemed to be stuck with the local hospital only. For the heck of it i sent in an application to Wellmark Blue Cros Blue Shield.. which is a nationwide health insurance provider and covers nearly anyone! I figured they would deny me saying i had a "pre existing" condition.  I wrote on my application that i had chiari.    The other day i recieved an insurance card in the mail from Well mark. I called them and asked if i had any pre existing riders or exclusions and they said NO.  So does that mean that they are taking me chiari and all?   I am afraid to drop my current insurance then have to ahve more mris or surgery or something.. could wellmark still look back and end up denying my claims? Theni  would be a sitting duck with NO insurance!  

Any experience or opinions? Im fresh out of college and have little to no experience when it comes to health insurance companies!
Thanks!

[*Stormy*]

The surgery did help the breathing...I get it WAY less often than I used to. B4 surgery it was almost every night and I would get the out of breath/chest tightening every few days. Now, I only get both very occasionally and even when I do it is nothing compared to what it was like b4 (less severe).
I noticed your question on the other thread...I want you to know that I did see some improvements from surgery. My worst symptoms were the ones that affected my gait along with the constant sometimes unbearable headaches. My gait was getting so bad that I am sure if I didn't do the surgery I would have ended up in a wheelchair just b/c I couldn't bear the pain caused by walking. The surgery put an end to the progression and my gait was almost immediately 80% better. Some days I even think it is improving even more but it is so slow that it is hard to notice. When you hear of us talk about symptoms that are bothering us, sometimes it is things that we never got rid of in the first place but at least they haven't got worse. Also, sometimes you do acquire a few new symptoms, for me I have had this burning, tingling tongue ever since surgery. Another thing is, you can see relief from symptoms after surgery but then have them return down the road. But still, NONE of it for me is even close to how bad it was b4 and I am confident that the surgery has successfully stopped my progression. It is a "take two steps forward and then one step back" kind of process though, so it can be frustrating at times. I am 5 months post op so I am sure I still have a lot more to learn about it all..

Carolyn

[selmaS]

Well I hope they don't use the MRI findings, but feel it is one of those "red tape" issues that will be the pivotal point.

Good luck with all the insurance stuff !!

"selma"

[codell]

Thank you for your comment.  That's is how I feel.  My mom says even as an infant I held my breath like that.  It is so frustrating.  The surgery didn't help that?  It's very comforting to know you didn't stop breathing.

Codell

[codell]

I haven't been to a Neurologist yet, b/c he wouldn't see me w/o insurance.  The first post has the findings on the MRI.  I also had an MRI in 03 showing an enlarged right lateral ventricle.  Not sure about that, but the one this year showed cerrebellar tonsillar ectopia 6mm on left and 8mm on right.  I do have the wierd sharp pains like little fire pokers at times throughout my body.

We are still checking the Insurance, but thank you for your post.  Now I know what to ask specifically!  I was hoping that since a specialist hasn't given me a dx and all I have are the MRI findings at the moment and knowing all my symptoms... that the insurance would cover the specialist.  I guess the date of the mri itself would show pre existing.

[*Stormy*]

I had a lot of the breathing issues you described b4 surgery...I would feel like a heavy brick was on my chest and I would have trouble inhaling and would have to concentrate to do so..

The startling feeling of feeling like you weren't breathing I got too but only at night...I would wake up gasping for air but it was more like I was breath-holding instead of sleep apnea.. I would let out a big puff of air and then inhale.. B4 surgery there was several nights where I was up all night b/c this just kept happening over and over again...it was VERY scary but to help console you...I never did actually stop breathing, it just felt like it. I still get this occasionally now but not to the degree I did b4..

I really hope you get this all worked out so you can see a specialist soon!

Carolyn

[selmaS]

I know just what u mean....scary too.....Do be sure to add this to ur list of things to talk to ur dr about.

I am so sorry to hear ur DS is also having chiari symptoms...have u tried the drs in the TN area?

Did u find nething else out regarding ur insurance?...when r u covered and does it consider ne thing  found prior to be pre existing?
Plus, if u had insurance b4 did u get the certificate of insurance in order to wave the waiting period?...this must be done with in so many days of ur insurance expiring.


"selma"

[codell]

For several minutes at a time off and on the last couple of days, I've felt like I had to tell myself to breathe. Like my brain literally wasn't telling my body to inhale. I also have this wierd feeling a lot now...you know how when you were in school and you fell asleep in class and when you nodded off you would jump like you were startled or falling?  I do that now, except not falling asleep.  All of a sudden it's like I get this brief calm feeling, and then my heart jumps and seems to beat a bit faster and I have to breathe deep as if I haven't been breathing, and I get a wierd tingly feeling throughout my body as well.  Does that sound familiar?  

I wish I could get to the Chiari Institue like you suggested.  I have three small children and this is affecting my ability to take care of them and myself.  I think my son (8years) is having the same issues.  He seems to be degrading in mental ability and he has the same intestinal/digestive issues I have.  He also has bad bladder and bowel control issues.  I know we both have spine involvement, just not how bad.

[selmaS]

U r posting just fine.... : )

Pre existing means u were dx and it is on ur file...has a dr told u or was it on a report that u have chiari?

Once u have a test done regardless if u were treated if the test shows a condition and even tho u were not yet treated it is pre existing

It is very confusing ......

"selma".

[codell]

Am I posting correctly?  When I reply, should I put my name so it goes to my thread or do I put your name?  Thank you so very much for your help.  Is it considered a preexisting condition if I haven't seen anyone to actually say "Chiari" yet?  I have had tests, but no one will see me yet, so can that be pre-existing?  I am confused as far as insurance goes.

codell

[selmaS]

Hi...I have heard of the factor V b4 and I think there is a correlation with chiari somewhere...let me dig into that.....

Um u said that ur DH's insurance picks u up in July, but do u have a waiting period on pre existing conditions?....most times it is 12 months....do ask ur DH to ask his HR rep to find out.

Thanks for sharing ur journey so far and I am glad that u r here as well : )

"selma"

[codell]

Thank you guys.  I have a blood clotting disorder, as well.  The name is Factor V Leiden Mutation.  The surgeon won't biopsy my lymphnodes and nodules without insurance, so all that is coming in time.  I'm more concerned with my inability to predict from one day to the next, my ability to carry out normal everyday activities.  My "monthly" seems to affect it greatly as well.  I am assuming that is from homone production in the brain??  I have about 5 great days a month!  I am so grateful for them.  I know things can always be worse, but when I can't tell anyone what is going on...it's tough.  I don't have any support, until now.  I am so GRATEFUL I found this forum.  I am so grateful for the posts I have read.  I don't feel so alone.  I will look online today for the Chiari Institute closest to me.  No one will tell me anything without insurance, so that is the first step.  I mean, I have all my results, but the doc doesn't understand them and I think I understand more than she does from my research and desperation.  I have minimal lipids in my blood.  She didn't understand and I explained to her I take so many b vitamins a day to function and that's why.  I'm guessing the cysts are from my tubal in 06.  Maybe somehow the eggs are escaping and forming the cysts "about" the ovaries.  The fluid, likely from the rupturing of cysts.  My concern is if the cyst on my spleen bursts what is going to happen?

[Amethyst3]

What do they mean by all the cysts, nodules, and "lymphatic spread"? I might be more concerned about that.

[*Stormy*]

Hello and Welcome to the forum

Wow...you have a lot to deal with. Many of us with Chiari have gone through the "stress disorder\anxiety/depression dx" which was totally untrue! With the herniation showing up on your MRI, I would definitely get your scans to a Chiari specialist. Check out the thread that members have put together of NS they have tried and liked:

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

I have also heard that it is very easy to look at The Chiari Institute closest to you and you can send in your scans for a nominal fee and they will look them over to see if they will take your case.
You mentioned that you have scoliosis...that has been linked to Chiari as well.

Have they found any reasons for the blood clots that you have experienced? This is being drawn out from the back of my mind (lol) but I believe there is a type of EDS that can caused DVT's as it inflames the veins and causes the clotting. EDS is also a related disorder to Chiari so you should also get that checked out too. A Chiari specialist will take all these things into account and do all the necessary testing.

I would start checking into it right now so you can at least get them appts scheduled for when you have insurance in July.

Good luck
Carolyn