Saw the Specialist helper today! =) Okay appointment

[alimcat]

Well I don't know why whenever I actually have something to do where I need to explain, I have a head in the clouds day... But the appointment went okay, they are going to send me for a flow study mri. That is exciting, again if exciting is the word I should be using.. But I only saw the assistant today, not the actual chiari specialist, she was a little cold at first but by the end of the appt I think I warmed her up a bit. Haha!! =) She did say that she "didn't think the chiari was the cause of ALL of my symptoms but since I do get headaches and nausea to throw up sick after any activities that she wanted a csf flow mri." That study won't take place for about 4 weeks give or take. But thats all they told me, I am guessing then that I am correct and I do have Chiari? Right? I mean since I am being sent for the flow study but she didn't discuss anything about the herniation size. So I guess we will see. Thanks everyone for your continued support and a special special thank you to selmaS! If it wasn't for you selma I would have given up. God sent you my way and I am glad you found me! =) God bless your soul!!

Anyones feed back is always appreciated! Any particular questions that I should ask also or ask them to look for or do they do that on their own? Thanks again everyone!

[alimcat]

Amen to ALL of that!!!! Hahaha!! I love the way you said everything, took the words right out of my mouth!! Thank you, I am excited and I am glad I am not the only one to feel that way. Its tough being put through all the emotional disregard from people and being treated like you are just being weak. Not this last weekend but the one before I got sick from the pressure coming in from the storm plus being in higher than normal elevation and was just sitting by the fireplace. I wasn't bothering any one, not moping or anything, I have always been one to hide my emotions, its just the way I was raised. Well my dad comes inside and starts telling me I am lazy and if I would just work out and on an on. Besides when I go to see him he never stops by my house to say hi and he literally drive right by, not exaggerating. So he knows nothing of my daily life which involves going to school, doing my internship, taking my 3 yr old on walks and going to the park where I do play with him, I just try to be careful not to run or anything that could potentially make the symptoms flare, which isn't hard as a fellow chairian would know. Anyways he hurt my feelings super bad, I thought I was making lead way with him understanding but that was a huge step back. I remember saying to him do you think I want to sit here and watch you guys have all the fun, laughing and riding ATV's. I can't even drive them anymore I have to ride with someone while I wear a neck and back brace. Anyways I know we have all been through it. My mom and sister I text and sent a link for a video to explain it, they live in southern california. Well I haven't heard a word back, so I sent another saying its okay you guys don't care I still love y'all, trying to jokingly be like are you guys serious right now, I am confirming a serious disorder and you can't even just say I am sorry to hear that? Well my mom responded that she was on the phone with a talker and she cares. Hahahaha!!! Oh Lordy give me the patience and understanding to not have anger for these peoples stupidity. Anyways not sure how I got off on that.... But yes, thank God for you guys and this group. My boyfriend is pretty darn good at getting it and very helpful usually but even he doesn't really get it. Definitely a goal to spread more awareness, I would like to try to get a walk going in Sacramento Ca. I do web design, and other graphic media stuff too, so I in my spare time, which is pretty scarce between feeling bad and making up for what I didn't get to do on the days I feel not so bad, I would like to get something going for chiari awareness. God bless you all and have a glorious day!!! ;-)

[Rahe28]

The appointment does sound like a success! It really doesn't sound weird at all for you to say you are excited....when I left my 2nd opinion's office....I was truly exstatic !!! For the first time...I was treated like a real person with a real medical problem....and I was sooo over-joyed to find a Dr that knew more about chiari than I did, and made me feel so completely comfortable...I was actually laughing in his office he was so wonderful, so I understand.

I have said it a thousand times, and all of my family and friends know who Selma is. She truly takes time to really make a difference and try her  best to help send you the right way. I have learned so much from her. And learining what I have, I have been able to help guide others. I can't even imagine the amount of peoples lives that she has touched ! So, again Selma....thank you from the bottom of my heart.

Again, Congrats on your appointment going well....that is such a verifying experience. It makes you feel like...finally...I am really not crazy !!!

[alimcat]

it is seriously crazy, and I too have noticed it seems like we all have pretty much the same story. It is just so nuts that all these years we go just dealing because we know no different until we finally find out that there is a problem and that we are just some super non complainers. literally though everyone just deals and figures oh just must be the day, or ate something wrong, must have slept wrong or just picked up too much, whatever the excuse we come up with its just amazing that we go for so long in all this unnecessary pain or discomfort. Literally we are Chairian Warriors! =) Go Us!

[linnielou232]

When you mentioned things you notice now that didn't make sense before.  I have noticed that also after having surgery.  Never knew that I can't tolearate noise, light, and ringing in the ear's.  These problems have probably been with me for a long time but never noticed them before surgery.  I have read other's same the same about themselves.  It's funny what we see about ourself when it has been there most of our lives.  Have a good night.
Linda :)

[alimcat]

Thank you all for your continued support. I refer people to this group ALL THE TIME! I joined one on FB and it seems many of them have questions that I know if posted here could be answered. I don't think the FB site is nearly as informative as the chiari group here on Med Help. I can't say it enough how my whole life has been changed. I have noticed weird things about myself for years and years chopping it up to some excuse and must be a normal thing, so now I am finding things I didn't complain about were more than likely symptoms from the chiari. For instance I would wake up sick and still go to school and all the time this happened. My mom would tell me I just had a nervous stomach. Well now that I know I have the chiari I now know that even the other times besides feeling sick in the morning and throughout the day, well sometimes when I was even younger I would get sick for no reason and be throwing up and now I know why. This has answered so many questions for me. As I my self and many others have said before, I am not sure I ever knew what normal was. But I know now what isn't. I love this site and everyone here is absolutely wonderful too. So courteous and helpful, and very kind I have found. Its a great place to get to join and be apart of. I feel so blessed that God led me to all of you and especially Selma who actually found me! Thank you for the awareness, I will absolutely pass it on. ;-)

[linnielou232]

I know how you feel about Selma and all the others on this site.  When I was seaching and feeling lost my DH found this site for me and it has been 2 yrs on June 9th I had my 1st surgery.  If it wasn't for this site of love and support and lifting me up when I didn't know how.  I couldn't of gotten through this without each and every one on here.  I am doing at least 50 percent better due to having surgery, but still come here to listen to others and try to pass on the support that helped me.  I'm thankful to hear this site has helped you as it has for me.  Glad you hear you are heading in the right direction in finding answers.  I think this is the most difficult part of this journey of knowing what is wrong and what they can do to fix it.  Best of luck, my chairian friend.

Linda :)

[selmaS]

  Thanks to both of u....all u need to do is let others know about the forum if they r in need of help, and offer to guide them with the same help u received.

Pay it forward is what I think they call it....lol...

All I know is I never want neone with this to feel alone, or to be mis informed, I can not brow beat info into them and make them listen, but it is here for them to use,.....that is all we can do.

Chiari needs awareness so wear ur purple on days fellow chiarians have surgery and explain to all that ask y.

  There is a walk in Sept for Chiari..see if there is one in ur area, and get a group involved....

  I will post a link to info on the walk so u have links.

[Viva001]

Selma, I would like to express my gratitude at this point too, and look forward to helping out in the future.
Vivian

[alimcat]

Okay great! Thank you for all the information, I will do that at the next appt then.

Well good I'm glad I'm not the only one. And of course no one wants the dx of chiari or any disorder for that matter, but it is soooo wonderful that my whole life makes since! I'm in aww. Haha!! I look forward to learning more and getting the proper help hopefully. Leave it to the Lord I always say. :-)

I will absolutely spread the word and hopefully I can make a difference in even at least one persons life, I will feel good to know someone else can find the answers and help they have probably searched for for years. This is a great feeling and I could only hope to help another like you have me. I'm forever in debt fellow chiarian!  :-)

[selmaS]

  All I would ever ask, is u pay it forward...offer to help others...that is all I am doing, paying forward what was given to me...

Thanks....many here do call me mom, and that is ok with me.....I am glad I was able to offer some insight as to what u may want to look into, and that it panned out, not that I am happy u do have chiari, but that u have answers.

As for the other testing, u can wait till u see the NS, they should do the testing, as that is my experience with chiari drs...they will check u for these issues.

So, get ur CINE MRI done and when u go back, u can ask then...

[alimcat]

Selma this is probably weird and odd for me to say but I love you!!! You are a chiarian momma bear! You have taken great care of me. You are the reason why now I know what is going on with me. I've said it so many times before but seriously if I never signed up to med help and had you never seen my post and took your time to respond I would to this day not know. I absolutely believe you are and gardien angel from God. Now I can't wait to throw this in the pcp face that wrote me the letter that he denies treatment to me any longer for doing my own online research. Thank you Selma I can't even say it enough. I wish there was something I could do for you. If there is anything you ever think of let me know. Now and has been the time to spread chiari awareness so that all may know but especially for those such as many of us who go undiagnosed or incorrectly diagnosed. I would still not know if it wasnt for the awareness you gave me. I will continue to return the favor to anyone I can help too. I will write down all of these things you's have mentioned to bring up on my next visit. Or should I call them and ask do you think? Are these things something that should be included in the brain CINE MRI, or would I ask after the MRI? Today has been very foggy for me so excuse me if some of my words are not making since. Hahaha!! ;-)

[selmaS]

  Hi...so glad u r going for the CINE MRI...once u know if there is an obstruction or not, it will help the Dr decide the next best course of action.

The list of symptoms Dr accept as being Chiari is much shorter then the one we post...even Chiari Drs....but, it may be chiari related so, do make sure u rule out a syrinx in all areas of ur spine, thoracic and lumbar, in addition to the cervical spine, and tethered cord, disk issues, ICP, sleep apnea, ehlers-danlos....

The fact u were seen at the office, they believe u have chiari...but not all with chiari r surgical candidates....so, take a deep breath, and keep an open mind.  : )