Husband support ?????

[roktta06]

Hi everyone (married or with partner) this is kind of difficult for me to post because it is a very sensitive subject for me buuuut, I was wondering if anybody with Chiari has a partner or husband or boyfriend or whatever that does not understand your condition and makes your life more stressful and difficult for you. I DO!!!!!!!!! I do not know if this is the right place to discuss this but I really need to know if I have an insensitive husband or there are a few out there!!!! This upsets me so much that my stress level rises and things (symptoms) get worse!!!! I know my husband loves me a lot but WHY WHY does he not understand. I have send him articles about Chiari malformation…depression and he just does not give a damm….. he has gone with me ONE time to the doctor but I have mainly just be along with my CM. I have been married for 20 yrs now and he married me knowing I had this…
Imagine my depression i have to attend seminars to jump up my self esteem because I can not believe that the person the loves you the most does not care!!!!!!

:(

[teeka21]

Hello everyone, my boyfriend has just been diagnosed with chiari malformation two days ago, after 3 weeks of debilitating migraines, to say the least we are both in shock and i am worried in the extreme because he is currently on trip ( he's in the royal Australian air force) some 2300 kms away from home... he's supposed to fly home tomorrow...just have to wait for the all clear from the specialist :) he being his chilled out self is playing it down, but its hard not to hear the pain in his voice :( i would love to get advice for him and myself... though i'm not entirely sure exactly what to look for, there is so much to search through that it get a wee bit overwhelming :/ i would love to know what support there is in Australia for people suffering cm and if possible if there is anyone for partners to talk to? I feel this could end up being a very rough journey for us both and would like to do and be the best i can for him! Thank you :)

[lydelia]

I totally get where you are coming from. Although my DH did not support me really any, through any of this, he said before the surgery and now after, well "you can't use that as your get out of jail free card any more'. Meaning that now that the surgery is over, I should have nothing to complain about and he should not have to show me any sympathy, not that he did before anyway. I love my husband and he is a great father to my two kiddos, but he ***** when it comes to supporting me in anyway.

[roktta06]

……. "what gets me fried is there r NS's and other Drs in the field that do not understand it...so if they don't get it how can we expect our family”….

SelmaS you are so right to post this and I think it is very important that members read this  because  most of my problems with my husband AND family members is the misinformation that Drs. give us.
My Neurologist takes Chiari very lightly … that one time my husband went with me,  my husband asked him if I had limitations as to what physical activities I could do and he said I could do anything I wanted just to avoid extreme sports. And I turned around surprised at his answer and asked him.."so I can lift weights?”…oh sure!!!! WHAT!!!!!! I can’t even get constipated because just to push my head explodes  in a sudden pain and I feel that  I am going to pass out…  and then my husband asks "so this is not a serious condition???”    he answered…"there are people out there with Chiari and never even know it”…. I was appalled at his answer yet again…

Now here in Mexico I went to see a Neurologist (long story) for my panic attacks that were not yet diagnosed as so,  and he said that my condition was life threatening  and I had to take really good care of myself.
Now guess who my husband choose to believe???
One Neurologist told me there was no problem having a natural birth with my first baby  and I pushed for 4 hours every 2 to 5 minutes as hard as could because I was not dilated and he did not want to perform a C sec. Another Neurologist told me that if I’d  lived through that it had to have been a miracle!!!!

I do understand that family members do not get it but why would we lie about pain and feeling miserable… I personally would give anything to feel
normal again. I lost ME. I lost the woman I use to be..I am literally  going through mourning  …  

[roktta06]

You do not sound bitter at all!!!! I posted this question so we could pour our feelings here were we know that we are understood and  get it of our chests ….because I know my husband will never ever understand or ADMIT he understands. When we were dating he was the most sweetest man I have ever met. He always was telling me how he loved me , bla bla bla…and as soon as we got married I asked him, “What happened to the man I married?” and he answered that he did not want to love me “A LOT” because when his father died his mother was so accustom to his dad doing everything for her and loving her so much  that she had a hard time dealing with being a widow. OMG!!!!!! can you believe this man! so why did he say his vows in Church when he knew he was not going to commit! but this reassures me that men are from another planet!!!! lol…. now I know   he does not want to “spoil” me because to him it probably means he will make me weak and a “spoil brat”… to them it either everything or nothing!!!!!!! MEN!!!! lol!!!!

[linnielou232]

Wow!!!!  I'm glad we have this to  come to and have friend's to share our emotional journey.  As I said to the Dr. today I didn't plan this, I didn't know I had Chairi until in my 40's Bamm.  It hit us all in the head.  This is hard to absorb, ecspecially the changing of life style and the miss understanding.  My family probably get's tired of me mentoning this forum because I tell them that if it wasn't for those of you out there on those day's when yes, my loving husband's tries to understand, but how can they when we ourselves can't understand having this.  It is so discouraging not even having your own reassurance.  I used to be a very very positive person and I try every day to get some of this back.  It is hard, but there is also hope we all can't let ourselves or no one else take that away from us. That's why I try to take one day at a time, and look at a positive in all this.  We wouldn't  be family, Chairian friend's if we didn't have it.  LOL!!!  It's not funny, but just trying to keep on the positive side.
Wish you all the best.  Today, if not today. Tomorrow will be a better day.

[selmaS]

  I am so sorry u r so frustrated but the after care for this is non existent...
May I ask, did they cauterize the cerebral tonsils...if so that is a part of the brain that was worked on during surgery- so he can call it what he wants to help deal with it but it is brain surgery even if the tonsils were not touched...

But if they were,it may help ur case with ur DH....

  I have days when I can sound the same, it is a long bumpy road and unless u have this it is hard to understand....

  Just look at all the Drs that make the claims that they will fix or cure u so u can go back to a "normal'  lifestyle....???

  All we can do is continue to educate those that do not understand.

      "selma"