help with family

[nsalem656]

My family has been trying to convince me that I shouldn't have surgery and they know nothing about Chiari. I'm not saying I should but I think I should be ready in case that is the case. How do I get it through their thick heads it's not up to them? Any advice. Any experience with unsupportive family.

[nsalem656]

Very helpful. You made me laugh. :) Unfortunately I never remember being healthy. I think I had symptoms since I was a kid if asthma like symptoms without asthma and slow walking are symptoms but I would love it if I was as well as I was when I was a kid. The other symptoms have only made my life worse.

[hookgan09]

I went from working a 40 hour week, taking care of my 12 year old, keeping my house clean and taking care of my husband, to staying in my dark room 90% of the time. I no longer work, go outside for bar-b-ques, go to races, the river, or even ride my quad any more. I can't take a shower or bath by myself anymore because they have had to pick me up off the floor because i knock myself out falling on my face. I can totally relate to walking slower and having the dizzy spells.  My daughter says that i have gone back in time to being a toddler, clumsy, off balance, and my depth perception is totally off. God help me if i have to  walk, talk and chew bubble gum. Because i will knock myself out. lol. (Sorry, but I have to find all the humor i can since i got sick.)

Try to remind your family what you were like before getting the symptoms. Did you spend time outside, listening to loud music, did you like to dance? Did you spend time with alot of people around and alot of noise? Ask them how they would feel if all of a sudden, thier  life changed as much as yours has. Could they honestly say that the quality of life hasn't changed so  drastically. It will hopefully put it into perspective for them.
Also explain to them that it isn't like you WANT someone opening up your skull and playing with your brain. but its your only chance at not being in pain every minute of every day for the rest of your life, than it is something that you need to consider.
I really hope that i have helped in any way possible. Because until i found this site, I thought i was all alone in this. I am grateful that everyone here can relate to what i am going thru and what comes up next.

[nsalem656]

My family doesn't think my quality of life is bad, yet I'm walking slower then them, can't work, and the dizzy spells have only gotten worse.

[hookgan09]

there is a video under chiari 1 malformation that has a picture of your brain, it doesn't show them cutting open the skull, but it shows the rest of it. I watched it because i need the surgery,  and wanted to prepare myself for what its going to entail.  My kids watched it too. they are 14, 22, and 26 years old. My husband tried to watch it but started crying and walked out.

For the people who don't understand why the surgery is sometimes our only option, i tell them that yes it does not guarantee that my symptoms will go away. but It will hopefully stop the progression of the symptoms.  If having that surgery gives me even the slightest chance at a Better quality of life than i have right now, I would try just about anything.

[nsalem656]

Hey what video? I only saw the mystery diagnosis episode but the girl in it had other things wrong too. What video???

[linnielou232]

My DH and DD and DS went on line and watched the surgery.  I couldn't get myself to watch it, but it did help them to know what it all detailed.  
Good luck

[nsalem656]

They read the mayo clinic website and still didn't understand enough to not annoy me.

[linnielou232]

This has to be a scary time for you.  Making the decsion isn't an easy one, and not having support from family must make it harder.  I agreed with every one above.  You have to make this decision for you and what is best for you.  In my journey my family voices their oppions on some decisions my DH and I had to make for me, but that is what I told them  It is my body my decision.  It is nice to have your family supporting you and as Selma stated they might need time to be able to absorb this.  Having them read material and knowing what your body is dealing with will help them.  I know for me it did.  I wish you the best.  Listen to your heart and it will direct you in the right direction.  

[nsalem656]

Hopefully my surgeon will help me talk to them but I feel crazy. As for getting another one I have county insurance (and medi-cal which is california medi-caid) and I already got the second opinion from ucla that I never forgave. It will be diffucult to get a third.

[selmaS]

  Oh I hear u....but, u still have to do what is best for u...so push for more answers and keep  moving forward.

[nsalem656]

I'm thirty three and because of the hand and the chiari's symptoms before being diagnosed my ability to financially take care of myself went out the door. I won ssi based on hand but they don't pay enough so my parents still have too much influence.

[selmaS]

  If u have a good NL yes, u will want one for post op care...there is none once ur scar is healed...the NS  is there to do surgery, and we do call them chiari Dr..but that does not mean we can go back to them once they release us....If u can not find a good NL, u may want to see if the NS u decide on has one they work with....or talk with ur PCP, mine has been willing to read and get as much info as possible to help me...as long as u have a Dr that understands chiari and is checking u, that should be ok....a good NL is best, but we can not all find one that knows chiari.

Once ur parents know, they know....but u can not make them understand...I do not know ur age, or  if u need their approval....but, u need to give them time to digest this...they may need more time then we do.

  

[nsalem656]

I almost didn't tell my parents but they knew I had a nl appointment and persisted in asking what happened. I still can't find a good nl. I have a specialized ns but when the surgeries are over don't I have to keep following up with an nl?

[selmaS]

  I know this may not help, but we can not expect family and friends to understand this condition when there r so many Drs and NS's that do not....but, we can take them to Dr appointments and have them read articles....

  For me, it was easier to not explain it,....I left it go until just b4 I went in for surgery to tell my parents....

What many of us do not consider is our parents think we r blaming them or they blame themselves for something that is blameless.....

Guilt and just being afraid for u, not knowing how to help...people make jokes, or ignore...what ever is the best way for them to handle this stressful info....this impacts them just as much as it impacts us, and they may not be able to support us like we would like....

  Just know u r not alone in this, and we r here to help support u the best we can...some of us have had surgery and some are like u, waiting to see if and when it may be scheduled.....

  Hang in there : )

   "selma"

[nsalem656]

Thanks for being here. They have been coming to my ns's appointments just to drive me even more insane. Mom said yesterday she can't wait till I feel better. I told her that might not happen even with surgery. :( I just want to do what is in my best interest.

[billyz123]

I haven't had much luck with that but I wouldn't discourage that approach because it seems reasonable...that's why I tried it :)
The Conquer Chiari book says something like 'the Chiari road must ultimately be walked alone' . I highly recommend this book and you can preview most of it on amazon for free. There is a section in the book specifically about this situation. As for me, I don't care what they're opinions are because they are uneducated about this complicated disorder and don't understand the impact it has on every part of my being. I think that if you are suffering, physically or emotionally or any other way, and there is a way to end that suffering, don't let them hold you back from helping yourself or making a better life for yourself. The real key to all this - is to move forward guided by all the best things about yourself like your heart, spirit, and nothing but love. I know this may be hard, but try to be rational when making decisions. Also don't be afraid to show your real feelings, like when you are feeling vulnerable, in pain, or just scared. If you reach out them in those times they will be there for you... and if not, we are here <3

[irislita]

Tell them how bad u r and make them read about the disease and success stories and involve ur ns that he tells them the consequences if untreated

[nsalem656]

I'm literally quoting my sister on this one to my mom "Your not going to let her have surgery are you?" I hate it when family doesn't understand.

[sunnyset]

I'm sorry that your family is being unsupportive. If you have been diagnosed with Chiari and you are suffering from the symptoms, it is really your decision as to whether you have surgery or not. Like many have said, because we don't have a cast on or any wounds.. sometimes it's harder to convince people that we are really suffering. I'm sorry that I can't offer any advice.. I am just hoping that things get better for you and that you are able to make your own decision regarding this and hope that in the end, your family will support you. Surgery is scary.. and maybe they are just scared.