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!!!!!!

:(

[selmaS]

  Do look into finding a way to get some oxygen support for sleeping, it will help ur HA's , ur fatigue and prevent u from stop breathing...this is very IMPORTANT!!!

  Do u have insurance?..If not check into PICP.gov

There are also clinical trails for chiari that may take u into the trials...do check into that.....

    "selma"

[roktta06]

OMG! I am so sorry to hear this... it is so terrible to see how selfish people can be!!!  Life is not about having fun 24/7, it is about how much you love and care for  others in need AND how to be humble and giving. It is so satisfactory to  see somebody happy because you contributed to that.
I have told my husband over and over again...that if he only would be a little more giving and forgiving toward me I know I would feel much better. but being bullied about my condition it NOT FAIR!  Hold on !!! We wil be better human beings because of this!!!

[roktta06]

Thanks linnielou for caring so much and every one posting... My op for sryingomyelia was 1987 looong time ago... I was not married yet... and before getting married I told my husband everything  . But I did not know that the syrinxs was related to my Chiari Malformation until I got sick of my Neurologist not listening..(he was like a wax museum figure)... and went to see Dr. Goldfarb. He was the one to tell me that my sryrinxs was due to CH. My husband heard but not listened!!! I had three children in a span of 6 years with one miscarriage in between and another after. When my second boy was born he was born with pyloric stenosis. For a whole month he cried and did not sleep 10 minutes in a row! To make a loong story short we ended up in ER with him just barely  hanging to life. My husband NEVER gave me a hand even though I told him that my head was going to burst because I had not had  a full hour of sleep of more than a month. His response..."I am tired too"....the op was a success (thank God) but after the op I had a difficult time in  starting  feeding my baby again little by little. He cried and cried and cried for 2 years in a row!!!!!!!!! we tried every method out there to try to get him to sleep. During those two years I was pregnant and had already had my third!!!!! NO help whatsoever from Frankenstein !!!! I was feeling MISERABLE!
I went to see my Neurologist telling him I was sure I had a huge tumor in my head because the headaches were soooooo bad that it was not humanly possible not to. MY husband did go with me..but here comes the fun part....I was telling my doctor what I had gone  through during those years (sadness, huge terrible panic attacks crying a lot)  and my husband was next to me telling the Dr. ..."I tell my wife she should exercise more....I tell my wife to go shopping and get a life..and I tell my wife bla bla bla ..." the Dr. left everything he was doing and stood up to him and told him..."OK now, let me see...are you a doctor sir???" I couldn't stand it and laughed soo hard. lol
BUUUT that was it..he never again went with me!!!! I guess his ego was hurt!
I tell my friends that he is like dr. jekyll and mr. hyde...he can be so loving but when it come to me not feeling 100% well he is a monster and could hurt my feelings so bad.  
I do not think there is anything that I could possibly do right know to make him understand!
By the way I did not have a tumor..lol...but after thoroughly listening and examining me, he decided to  send me to a Psychiatrist. I was diagnosed with Generalized Anxiety disorder  and major depression!!!

[Missy131197]

my heart is just breaking reading some of the posts.  I have a fabulous boyfriend who is very understanding.  Does he have frustration's yes, he was just recently like 2 weeks ago diagnosed with Type 2 Diabetes so the last 2 months have been absolute hell for us both medically, but he is completely understanding that this is not my fault. He goes with me to appt and offers support in whatever he can. I am saddened to hear that people can be so selfish. My prayers and thoughts are with those struggling.  :)

[selmaS]

  This is a very difficult issue to deal with, and I wanted to add a few links to older threads on the same topic-
http://www.medhelp.org/posts/Chiari-Malformation/How-are-your-SOs-with-this/show/651563?controller=posts&action=show&id=#

http://www.medhelp.org/forums/search/257?utf8=%26%23x2713%3B&query=support+of+partners+

[AmyFS]

Great topic/question!! This was exactly what I was wanting to discuss when I visited the forum today.  I am very frustrated because as one of the postings mentions- everyone thinks that because my surgery was 14 months ago that I am all done- all zipped up-all better- ...WHAT????Don't get me wrong, my husband is wonderful-truly- but sometimes I feel completely alone in my struggle. During the whole miserable process of getting diagnosed and having surgery and "recovering" for a couple of months, he was amazing  Went to the appointments with me, researched, listened & listened to me, stayed with me in the hospital all 5 days through all of the agony and took 2 weeks off afterwards to be there with me.  So I know he "gets it".  I should count my blessing, I know, but I have to vent.  It's almost like he has blocked it out entirely.  He's not rude or disrepectful or anything like that.  The impression I get is that "I've used up that excuse" sort of thing. Like when I say that I feel like my head is going to explode (and I get no reaction)  or I've been having a difficult week physically, or gee, my balance is off today- my symptoms seem to be making one of their 2-week long appearances again...all to little or no reaction.  I don't think I'm looking for sympathy- just empathy? Support?  Someone to say ok, its time for you to listen to your body and rest.  Nope.  It leaves me feeling like a whiner & a victim.  And that is NOT me.  So that upsets me even more.  I feel guilty saying this stuff because he IS such a good man and a loving,sensitive husband, but we recently had a conversation that I will never ever forget (until my chiari makes me forget).  I asked him if he realizes that I still really do have alot of problems. That I don't say this stuff just to get attention, etc. The surgery wasn't a cure. Just a treatment.  That my symptoms come back.  That I don't ever have a single day where I don't hurt. That I will probably never sleep well again (and as a working mom of 2 pre-schoolers, that's a biggie!).  He said that he understands that.  He knows (he works in the medical field so he is more up on things than the average person) that the body takes a long time to heal from something like that surgery.  He remembers how all of the Drs said over & over to us in the hospital that this was THE most PAINFUL surgery they do.  
THEN, when I said, "I mean, it was brain surgery for goodness sakes" he said, well they don't really consider it brain surgery because they didn't "go in there & take out a tumor or fix an aenurysm or something like that. It was Skull surgery, yes and Neck surgery, yes" . OH MY GOD? WHAT???  OK- then why did a brain surgeon perform the surgery? To try his hand at something new for a change? It still makes me so upset thinking about that. I know that he wasn't saying it malicously, but wow~ Not brain surgery? I am still speechless.  He's even watched the videos of the surgery.  I guess those tonsils that were blocking the flow of CSF in my BRAIN were just an pesky part of my neck that were misguided.  That the dura isn't really part of the brain 'cause its on the outside of it.
Sorry to make light of it, but if you have something wrong with your brain or your heart, that's about the epitomy of health problems!
  
That was the first time that I could clearly see that he (and others) think that my "needy time" is done. That ship has sailed.  I should just forget it ever happened and move on. Just like that. That's not what he said and I'm sure it's not what he meant, but that is how it registered to me. One of those crystal clear moments that I relive over & over.  Most people, even those closest to us who endured the emotional roller coaster with us, have no idea that this is really a life long condition. There are good days and there are bad days, but it will always be a part of who I am. Sorry.  If I could make it all go away, I would.
I know it takes alot emotionally out of them (spouses, significant others).  And God bless them for being with us through it all.  I don't know what its like to be on that side of the fence.  Maybe it is something that men in particular need to mentally file away once the "big part" (surgery) is over?  I couldn't have asked for a better partner during the diagnosis,surgery and initial recovery.  I guess my suffering is not as obvious to him now that the scar has healed and my hair has grown long again.
Thanks for listening. Wow, I didn't mean to sound that bitter!   I really do thank God for him :)
It is so good to have this forum where we can share our feelings with people who GET IT!