Crying out! help, i'm so frustrated with neuros!

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SO I WENT TO THE NEUROLOGIST TODAY FOR A ROUTINE VISIT. AFTER ABOUT 5 MINUTES INTO THE APPT, I WAS BEING OPEN AND HONEST ABOUT HOW FRUSTRATED I AM WITH MY RECOVERY AND THAT I'M STILL HURTING. SOME TEARS STARTED TO FLOW. MY EMOTIONS CAME OUT. WELL.......THE DR RESPONDS WITH, "YOU DON'T HAVE CANCER OR A TERMINAL ILLNESS". WHAT???? COULD NOT BELIEVE MY EARS!! SO I'M NOT ALLOWED TO BE UPSET OR SHOW ANY EMOTION OVER MY DISORDER AND HOW IT'S ROBBED ME OF MY LIFE, THE OLD ME. I KNOW IT'S STILL EARLY IN RECOVERY, BUT I'M JUST VERY FRUSTRATED WITH THE PROGRESS. HE'S CORRECT, I DON'T HAVE CANCER, A TUMOR OR A TERMINAL ILLNESS, BUT HOW DARE HE COMPARE THAT TO WHAT I'M GOING THROUGH. IS MY CONDITION NOT WORTH DISCUSSING OR CARING ABOUT?? I SWEAR, I AM SO SICK OF THESE HORRIBLE NEUROS MAKING ME FEEL LIKE CHIARI IS NOTHING!!! I DON'T KNOW HOW TO GET PAST THIS. I AM A CARING, SENSATIVE PERSON WHO KNOWS CLEARLY THAT THERE ARE PEOPLE 0UT THERE DEALING WITH MUCH WORSE THAN ME. BUT WHAT ABOUT ME? IS HAVING A CHRONIC ILLNESS NOT WORTHY OF ATTENTION? I'M CRYING WRITING THIS. I WANT TO SCREAM!! HOW DO WE GET THROUGH TO THESE DRS???

THANK YOU FOR LISTENING. I APOLOGIZE FOR THE ANGER AND SADNESS IN MY WRITING. I'M JUST SO FRUSTRATED!!

CHRISTINE XO

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I’m sorry for ur horrible day, I have felt exactly like u with my ns! I don’t know y ppl don’t take our illness more serious. From what I read it’s bc everyone’s so focused on cancer and heart disease tht they don’t even take much time in med school covering it. I seriously think no one can know how terrible we feel unless they r one of us but it would be nice for some ppl to at least try and have some empathy. No we’re not going to die from it but it does rob ur life away from u and it’s frustrating bc no one seems to know a thing and all we want to do is feel like we used too! I think the hardest thing is surgery is really the only tx and ppl like me who can’t get a ns to do surgery or anything else tend to feel hopeless and now uve had it n still feel terrible! Stay Strong, we are all here for u n u are in our prayers. Pls keep us updated.

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Oh No, Christine.....

Where do these doctors come from, anyway????? I could scream for you right now...do not see him again....I saw way too many NL's that were uneducated in Chiari...but your dude takes the cake in bed side manner (lack there of) , uneducated in your condtion, he has no empathy.....Your feelings are comepletely understandable.

You poor thing..were you at this appt alone???? I would bring Kris with me to all my NL appts..she is a lifelong friend and works for Lilly Pharmacudicals(sp)....she would go in with me and bring out her laptop and type everything that was being said.....a few NL's were very intimadated I think...though they came across as smart asses.

If Kris hadn't come to this 1 particular appt...I really think people would have thought I was stretching the truth about this NL....

I am done with NL's personally...I now see a physciatrist....rehab doctor/pain doctor...you may want to look into that type of doctor..i know i spelled it wrong, sorry.

Keep us posted on how you are today....ok??? we really care!!

Love,

Lori

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You're all so sweet, thank you. I'm feeling deflated today and feel like I always have to prove my disorder. The MRI's and other friggin tests prove it, along with my symptoms. You know, going numb all over my body, dizzy spells, massive headaches, you name it. It's real!! I had a 7 hour operation to prove it! I don't understand the sheer ignorance of these drs.!!! Chiari is not a made up illness!!!! Not sure what to do now. I feel alone medically again. I get new insurance in March and in the meantime, I will keep looking for that dr that will listen and understand my condition. I don't care if it takes 10 more drs to get to the right one. Sorry to be so negative, it's really not my nature to be this whiney, I'm just really mad and sad about this. I want to change this. I don't know how yet, but I will find a way to raise more awareness for Chiari.

XO Christine

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Hi...

1st off..you are not being negative or whiney....you are simply stating the facts!! remember that...don't beat yourself up so much!!

You must feel exhausted emotionally after that NL visit....the heck with him....hope you bypassed the desk on your way out yesterday and 'forgot' your co-pay!!! I'm bad, I know.

Oh..I have the correct spelling now of the kind of doctor I am hoping will help me......PHYSIATRY...I really think this type of doctor is worth a shot.

At this point..just my 2 cents...NL's are out of the loop..useless!!! And the NS feel as though they have done their thing so they leave us high and dry sometimes..is that how you feel????

Do you take anything for the pain??? Oh, how I wish I could give you a hug and let you cry it out....We are here for you.

Love,

Lori

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I would never see that neuro again. I hate to say you'll get use to this, but in my case it's been true. I've been conditioned to actually go to offices expecting to hear things like that. I'm sorry you had to go through this <3 my heart truly goes out to you. The important thing to remember, especially right in the moment of someone being completely insensitive, is that you are suffering, but you are strong, and you will make it through this. Statements like the one you described don't deserve your energy. Always listen, let the words run through your mind, but as you process them let there be one ultimate goal... the truth :) <3

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Bill, thank you so much for your words, you made me cry. You have a way with words. Where were you when I had my appt yesterday?? lol Wish you were there. I am strong, but have my breaking points sometimes and these statements by drs drain me of my energy. I know the truth Bill, thank you again. Your words made my heart and mind feel much better. :)

Lori, thank you for always being there for me. I can't tell you how much that means. I wish you could give me a hug too. I sure could use one! I do have a phychiatrist. I'm on Zoloft (only 25 mg). He's a very wonderful man and very sensative and understanding to everything I'm going through. He's aware of the drs who keep making me feel worthless. I am def. not going back to my NL (4th one!). He wanted to see me in 3 months and I didn't make the appt. I did make my co-pay (unfortunately lol) and left without a word. I do feel as if my NS was done with me right after the surgery. He tells me how extensive my surgery was and says the door is always open. However, whenever I call, I get the cold shoulder. I'm constantly being told "this is normal, give it time, all will be okay in the end, only time will tell....". Too many contradictions from too many different drs. Makes my head spin. Just knowing I'm not alone in this does help. It doesn't make me feel good for any of us though. We deserve better.

Susan, thank you for caring. My God, can you believe drs?? I mean that's really bad when you don't even care enough to know your patient enough that they have a shunt in their head!!! That's downright scary!! We put our faith in them that they know what they're doing. I know their human of course and people make mistakes. However, this was a biggy and just goes to show the insensativity and complete disregard to your situation. I'm not okay with that. Thanks again for taking the time to share with me. XO

Diane, thank you for your kind words. I'm so sorry you are going through so much yourself. It is just a frustrating journey. We all have to be our own advocate which is really hard sometimes to do it alone. Having the support of a medical dr who is educated in our disorder is key. The problem is finding one. We're all in this together. XO

All my love my chiari friends,

CHRISTINE XO

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Christine,

Please know that it is out of line to compare CM to anyother illness. It is very difficult to get through to these NS. It is very hard for then to deal with grey in their black and white world. Everyone here has dealt with this. This illness is misunderstood & misdiagnosed & treated. You deserve total respect. If your NS was smart he would learn from you instead of insulting you. Please let us know how things are going. I can feel your inner strength. Know I am always here to vent to. You will be in my prayers....

Tracy

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Thank you so much Tracy. :)

TracyZ said:

Christine,

Please know that it is out of line to compare CM to anyother illness. It is very difficult to get through to these NS. It is very hard for then to deal with grey in their black and white world. Everyone here has dealt with this. This illness is misunderstood & misdiagnosed & treated. You deserve total respect. If your NS was smart he would learn from you instead of insulting you. Please let us know how things are going. I can feel your inner strength. Know I am always here to vent to. You will be in my prayers....

Tracy

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Christine,

You are so welcome!!! Please know you all help me make it through the day. It's snowing in Va, and I am going to have to lay down. I can feel the pressure building in my head. You understand. I appreciate you all So Much !!!! I feel like we are a big family thrown together during the worst time in our lives and the beauty is the respect and caring we have for eachother...

Tracy

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Gentle hugs for you, Christine. No need for apologies. That is why we are here. As there is such a shortage of Chiari Specialists available to us, we can hardly drop our current NS in favor of another, can we.

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Thank God I have you all!!! XXOO

TracyZ said:

Christine,

You are so welcome!!! Please know you all help me make it through the day. It's snowing in Va, and I am going to have to lay down. I can feel the pressure building in my head. You understand. I appreciate you all So Much !!!! I feel like we are a big family thrown together during the worst time in our lives and the beauty is the respect and caring we have for eachother...

Tracy

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Christine,
You have every right to cry and be angry! It gives me a pit in my stomach hearing your story because I went through something VERY similar after my 2002 surgery. My NS said to me " I don’t know what your problem is or what to do with you. I’ve never had a patient give me so many problems post op!" As if I was having pain and a difficult post open to spite him!! We just kept bothering him and showing up until he figured it out and helped me. My husband and Mom had some very heated “discussions” with my NS! You are your only advocate…keep fighting! Good luck!
Monique

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lol christine

thats horrible but i couldnt help but laugh, my sister says the same to me,

i dont get why cancer is taken more seriously,

when i mentioned that they thought there is a tumor in my spine, my dad suddenly showed interested for the first time,

but if you look at it in a different way cancer starts with C, chairi starts with C, so maybe if we told everyone we have C, maybe they will treat us better, lol

sorry no offence to you in anyway, but really what do doctors know, they dont live it, breath it, deal with it, suffer it,

and its still a mystery on what chiari does, as technology gets more advanced more of it will be understood, but until that time, they have no idea,

try not to let it bug you, keep your head up and push, dont give up cause one doc doesnt take it seriously, that doctor is an idiot.

there are lots of people that suffer from worse, and for them its bad, and there are others that suffer less and cant handle it, everyone deals with things differently,

you suffer everyday you deserve better, chiari is tough, and i think it makes us tough to, since i get really bad, i take no ones crap, i dont get pushed around anymore,

you are allowed to feel the way you do,

joelene