Going nuts with my family

[nsalem656]

In an earlier post I told you I was having trouble explaining to my family what's going on. On the appointment day on the way home from the doctor mom had the nerve to ask "Are you happy your having surgery?" She's still treating me like a hypochondriac after all this. I'm going nuts. I spent 17 days in traction to avoid surgery and it hurt from the first day. If I wanted surgery I would have given up on the second.

Any suggestions on giving mom a reality check?

[nsalem656]

Actually uneducated sounds better than ignorant. My ns says my chiari is obvious. Mine is 7 mm and I do have hydromylia. Yet the UCLA doctor knew this and said I wasn't symptomatic. The NS said NL's aren't the right people to see.

[billyz123]

Yeah I know that story ;)
It's like they only hear what they want to hear and that's the end of it. They are being completely IRRATIONAL (sorry but I think that word is super important in these situations because it sums it all up.)
Ok, so UCLA nl said it's not related... how convincing are you MRI's, like do they show that there is obvious overcrowding in the skull or a plugged up foramen magnum? Did you take a copy of your MRI's home to look at?
I can help you with this if you would like.

BTW, hypochondriac is synonymous with "fibromyalgia" which is what I was diagnosed with before we found that I had CM.

You are old enough to decide if you want surgery. Try not to let your families opinions to affect you too much because they are usually just uneducated opinions.
**Telling someone that their views are uneducated usually comes off as derogatory, even if you politely offer to help educate them, so if anybody has a better way of addressing this or a better word than "uneducated" I think this would be really helpful for a lot of us in this situation.

[nsalem656]

I think the biggest problem was the NL at UCLA. I had mom convinced I needed surgery till the UCLA nl told her my symptoms are not related. My family really doesn't understand any of this and they trust the UCLA people more than they trust the NS

[Rylanesmom]

It is a shame that only when we can not fake ok they understand.  When it gets to where it is hard to wall and you can't come up with words...then they can see.  They want to believe you are ok even when you are not.  But there is hope:) we can be ok again!

[billyz123]

   For some reason it seems like family and friends only care about this condition when you physically hit rock bottom. I'm sorry you have to go through this with your mom, I am too<3
   I don't know about your case but I've found that looking at this situation in the big-picture kind of sense... like this is a serious anatomical issue that needs to be fixed - I mean that's the real truth right. It *****, but most people can't wrap their head around this because it's complicated and it looks like nothing's wrong with you (usually).
   I could go on forever about this but basically... from my experience, family and friends will come around, it just takes time. I showed my whole family my MRI's and everything else...I've already got the go-ahead for surgery from TCI. Even with all that, they still don't even think it's real or worth caring about. Like "just take the pills and shutup, we all have our quirks." Those comments hurt because the truth is - this is much more than some quirk, it's suffering.  My mother doesn't support the fact that I want surgery but it doesn't change the fact that I'm going to get it.  I think a lot of us find ourselves living in isolation because of so many people treating us like this, but I think it's inevitable. Just be the best person you can, never forget the truth that you actually do need help, and pray to God for strength and guidance and it will come. much love<3

[Rylanesmom]

I already can tell I will feel much better.  I do not have the constant cape effect anymore.  My occipital area of head, shoulder and, neck feel better already.  I have not been dizzy since surgery.  Don't get me wrong I am 2 weeks out and I know I have a lot of healing to do and I know some things could resurface.  I do feel this surgery is an answer to my prayers.  I could not...did not want to...live like I was.  There are a lot of people who have had surgeries before diagnosis because symptoms were being treated and not the problem.  I knew with my csf blockage I would get worse and that was not an option that was fair to myself or my children.  

[nsalem656]

How are you feeling since the surgery?

My family thinks I want surgery because I've had a lot already. 6 surgeries 6 endoscopies and two colonscopies but I blame them all on the misdxs. My family thinks I want them.

[Rylanesmom]

I'm so sorry I just had surgery 2 weeks ago today and that was one of the hardest things for me.  Family members want to tell you how to feel and that does not help how you feel.  I finally had to say I love you but you telling me how to feel makes me feel worse....there are times I am not thinking at all and you call me and say something that freaks me out....how about we talk when I want to and you don't get to tell me how to feel.

[nsalem656]

Thanks selma.

[selmaS]

  It doesn't matter...pain is pain, and u have them as well as chiari symptoms...u can track all of them....

[nsalem656]

I do have pain but most of my pains are related to my wrist that has Kienbock's. I just meant it's not the pain or at the pain levels of chiari pains.

[selmaS]

  Hi...Dani has a great suggestion....even tho u do not have pain u can keep a record of all ur other symptoms....and no pain can indicate nerve compression....with out the nerves working u do not get the signals for the pain....so no pain is not a positive.

U may want to have ur mom read a few of the posts here...mayb she will understand seeing u r not the only one feeling like this.

  There is 1 in every 100  people that r dx'd with chiari...and only 1 in 1000 dx'd with MS...something to ponder.

[nsalem656]

The pain journal is great idea, but I don't suffer the pains that are associated with chiari. My problem is the other symptoms dizzy spells, vomiting, falls etc.

[DANI0103]

I would do some research and show her everything you find scary or not, and show her. Tell her look this is whats going on and its real. I'm having the same problem w/ my boyfriend, who thinks that I wont die during surgury. But, I did research showed him statistics on how many people do pass in surgury and he finally understood. Hopefully, after you show her the bad and some good something will click for her and she will start to understand. Only we can feel what this pain is like our family and friends will never fully comprehend how we feel.
I also keep a "pain journal" where no matter how graphic it may sound i write down what pain I am feeling. Then I read it to my family and sometimes they have to stop me because it sounds grusome, but its the only way i can tell them what I am going through
Good Luck
-dani