Hi Charlotte, I was wondering why you have been so quiet. I\'ll throw some positive Rasta vibes your way and hope you start feeling better soon!

TJ

Hi Charlotte,
Just letting you know that I am thinking of you and hoping that things get easier soon.
Remember that we are all here for you whenever you need us, and until then you will be in our thoughts and prayers.
Please take care,
Lucy

Charlotte - I\'ve been thinking about you and worrying over your appointment yesterday. You\'ll continue to be in my thoughts and prayers, I\'m so sorry things are so difficult right now.

Charlotte:

I\'m so sorry that you are having a tough time. Of course you are always in my thoughts and prayers. I hope things turn around for you soon...In the meantime we\'ll be here for you if you need a shoulder to lean on. Hugs!

MM3

You\'re in my thoughts and prayers Charlotte. I\'m sorry you\'re going through this hard time. I really hope things pick up for you soon!

-Kayla

I, too have been thinking about you. Feel better soon!! I echo everyone else on here; I am here for you always! :) *HUGS*

Hi Charlotte!

Hang in there! You\'ve got to feel better for tonight is GAME 4!!!! GO RED WINGS!!!

I\'ll be rooting for both the wings and our good friend Charlotte! (can you quickly teach me something about hockey???)

I do hope some blessings fall your way and you can find some relief.
Take care,
Bax

Thank you all so much,
This month has been incredibly hard on me, although I got approved for disability on the first try, I have the issues with insurance which has completely tied my doctors hands.

I saw my neuro yesterday, he wants me to see an endocrinologist to see if we can\'t find the hormonal cause of this, we are also contemplating bariatric surgery since none of the other surgical options at this time have worked. He will also refer me to pain management and a new neurosurgeon to look closer at the Chiari which has been flaring more and more....symptoms that are much more specific to the Chiari are quite scary....I was fine when it was just the PTC I had to deal with, but this has gotten me down quite a bit.

My daughter also has me a bit down, she has been really clingy every time I leave afraid I wont come back, she is almost 7 and this last battle has taken so much toll on her little life, she does not remember mom being healthy (My symptoms came back when she was 3) I know I have had had pseudo-remissions as I have never been completely headache free, but the effects it has taken on my family have led to a lot of guilt....which leads to all sorts of other problems, we as a family are having a really tough time with the reality that it doesn\'t look like this is ever going to get better.

I am Will Be contacting a Chiari specialist when the medicare kicks in, but there are only a handfull of those nationwide, and I am debating between 2, and will be emailing the one this week when the pain is unbearable and a tap won\'t do me any good since the last one only helped for 4 hours.

Having a double whammy issue has really been too much of a struggle, and I don\'t like to post if I can\'t be uplifting and supportive. My neurologist admitted yesterday that I know more about this than he does....but thats probably since I have had it the High pressures since he was in 10th grade....I love him dearly though since he is not quitting on me just helping me do what we can in the constraints that we are in.

Thank you Jazzy, for posting since you knew I wouldn\'t your emails have kept me going and seeing all the responses to this made me cry even more, I just wish crying didn\'t raise my pressures like it does.

Charlotte

Okay Charlotte...my dear. Please don\'t ever, ever, EVER feel that you can\'t cry on the shoulders of those here. That\'s why this is called a "SUPPORT" group....to hold you up when you feel like you can\'t lift your head any longer. I know you have supported me multiple times since I\'ve joined the group and I plan to be here for you in the same fashion. I am so deeply sorry that you are feeling so poorly. And I truly understand the toll this takes on the family. The other day I was watching some old family videos with the kids and my oldest daughter said, "Mom you used to be so much fun". My heart broke into a thousand pieces and I had to leave the room to cry. I think she knew I was upset and came in later to apologize and tell me how much she loved me. But, I told her I knew she was right, and that I was so sorry that this illness has taken so much from our family. Nothing about this illness is easy and to top it off you are battling Chiari.

Please don\'t stop voicing both your pain and your successes here. Ultimately, it won\'t only be therapeutic for you but, may also be educational for the rest of us. Every time someone posts something here I learn something about this illness I may not have known before...and more importantly feel less alone on this agonizing journey.

I\'m glad your application for disability went through. Hopefully your insurance and medical care will line up soon. I\'m glad that you have a neurologist who is supportive in helping you find a life of wellness.

(Now that was a long post!)

Start feeling better soon.

MM3

Charlotte, remember you are not judged by how you are feeling here..let us know what YOU need in terms of support, if you want to vent just vent it all out..and if your concerned that nobody will post back just post again, and again, and again, lol. I think so many posts happen that some are missed, remember you are not alone, Jazzy

MM3, Thank you so much, I just have a hard time when the negatives outweigh the possitives so much, usually I am a very positive person no matter what happens....and I haven't seen much positive especially when the docs gave up....He will treat me, but at the same time, I have already had a failure in all the traditional drugs, pain meds, and even the shunt, my only positive right now is that my vision is staying stable after my fenestrations over 10 years ago...

I am having Chiari symptoms though Bladder issues, my sleep apnea has gotten much worse as has the occipital parts of the headaches....and there are a grand total of maybe a dozen docs in the US who treat Chiari and none in MI....I am also having multiple drop attacks a week, those things really scare me since they made what I knew totally different.

Bax, I watch the games, but I can't teach, Hockey is the ONLY sport I watch and tonights game made my headaches worse but it was screaming so it was a good worse,

Jazzy, I love you dearly, you have been there for me even whenI couldn't be there for myself....you have no idea how much that means

To everyone else, thank you so much....I really need to get over feeeling ashamed of not getting better...I am just not used to not being in control....even during a rough spot I could always keep control and I have lost all control of whats going on, literally.

Thank you Again
Charlotte

Oh sweetie..I totally understand that feeling of not having control, it is absolutely awful. I think it is even more difficult as a mom and wife because we feel so responsible for being the center of their universe. We are the caregivers and the one's who are there to cheer them on, go to school events, decorate for holidays, etc., etc., etc. I've recently come to a place however, where I've had to submit, because I realize that ultimately they would rather have me healthy and around then away somewhere in a hospital. I so wish I could give you a hug right now. If it helps, I just know that while it may not happen tomorrow, soon you will find some help and things will turn around.

I admit that I don't know too much about chiari other than the basics. What is a drop attack?

I will pray for you because I always believe that first...everything happens for a reason...but, more importantly I believe that God can always fix what the doctors don't know how to. I hope that all who read this post will pray for you as well, because the bible says that whenever two or more shall come together....it shall be done. So we will lift you up in prayer.

Know that I am far from a bible thumper and I am typically very private about my faith, but I feel that you really need our prayers...and so for you, dear Charlotte, I am sharing my faith here.

I truly want you to be well as I do each of you here. Hang in there Charlotte. (Insert poster of Kitty hanging from a tree branch here.)

MM3

Oh Charlotte, you help me more than you could ever know...I'll have to learn about hockey so I can follow it with you, lol.

I know it is so hard not to feel in control, especially when it comes to our bodies and emotions. I remember one day I did a load of laundry because it was the only thing that made me feel like I had some sense of control..take that you washing machine.

I know you don't want to bother others with posting about your chiari, but that is what we are all here for, to support each other, (and your chiari is from your shunt so there is no reason why you can't post about it).

Don't give up, your family, friends and all of us here love you. Jazzy

Drop attacks are similar to black outs or passing out but only last a very short time, they are related to dizziness and often you have no idea what happened....I started having them a couple years ago, but after my last tap they increased significantly....I fall into walls and "trip" over absolutely nothing most of the time I catch myself, but they are very common with the compressed brainstem that Chiari causes....thats one of the biggest reasons I had not been posting, because whats happening now the hospital has admitted is predominantly Chiari related....

I have had doubts all year now of what the real problem is since my doc saw it in a CT scan before my shunt was placed and while I was headache free for two years with it, my pressures did not go down, and Chiari causes a flow problem which makes that increased pressure even worse....I am learning way more than I want to about it as I connect dots that I always just assumed were there to drive me crazy since they were not PTC symptoms per my research....I have talked to IHRF when the changes first came out and even they were dumbfounded...oh well, I have always been complicated.

I appreciate the prayers, I do believe God is in control of this...and has been all along, I just can't see the light at the end of the tunnel and the last two times I did, it was a train...
Charlotte