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1755089 tn?1376053555

Wondering about my mother!

I made a list of all my symptomes that I have now at 30. And I read it to my mother, she looked at me and she asked what it was all about. When I told her that those where the symptomes I was living with on a day to day basis, she told me that she taught that I had made a list of how she was feeling 20 years ago!

My mothers health is very bad. She can barelly can walk, her breathing is hard and she has a lot of problem with her heart. She is in constant pain all day and night long in all her body, even painkillers are useless. She is only 60 and she has to live in a retirment home.

Since I got my diagnose of Chiari, I have been thinking about this. Could my mother have an untreated Chiari. When I asked her if she would get an MRI, she answered ''Why for? They can't do nothing for me, I'm done''. I think she might be depress.

I would like to know if Chiari made her like she is now. It scares me beyond words! I'm effraid to become like her. When I was a kid she used to be supper active and full of life and suddently ( almost 20 years ago) she can work and she sleeps all the time and she is always in some sort of pain.

I know I'm going to sound horrible here, but lately she always says that she wont be here for her next birthday and she still refuse to have an MRI. Would it be resonable that if she dies before I get her to have an MRI, that I ask to the doctor to have an autopsy on her and also to check if she had a Chiari Malformation. Sory I know that this sounds horrible, but it scares me so much.

And if ever I convince her to have an MRI and they find a Chiari do you think it whould be to late for her to have a surgery. I love my mother with all my heart and for she as been my rock all my life and this sittuation scares me so much, I had to share it with someone. Thank you.

Drew
18 Responses
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1306714 tn?1327257080
Sometimes it is best to have some one outside the family say something ecpecially a friend.  Some seem to listen to them more, probably because they can see the love and concern we have for them.   Wish the best for you,  good idea to wait until Christmas is over so you can enjoy your family and not touchy subject's.  Let us know how it goes.  
Helpful - 0
1755089 tn?1376053555
No I didn't talked to her friend in the last few days, and my mum didn't talked about the evening either. I'll try to be patient and wait to see.

I decided that I wont talk about Chiari to her until after Christmas, mabey if I don't mention it for a week or two she might get on the suject herself!

I will also wait for the call of her friend (I never know when to call, I don't want her usband to answer the phone, he scares me! It's crazy but it's true!). When she'll call I'll ask her if she could get her to see a doctor.
Helpful - 0
1903798 tn?1333905288
Drew any luck with moms friend talking to her?
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Avatar universal
You know your mom best, so you know if it's a good idea to push the subject.  Some people don't take it well.  I hope that you can get inside her head a little and get her to talk to you about why she's avoiding the subject.  Maybe it is like I said. 60 is not that old, and she may have difficult to treat Chiari + easy to treat complications.  Who knows!

I feel for you, can't be easy.
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1755089 tn?1376053555
Thank You jenshead I think you might be right!

I mention my apointment that I have in January to her today. I asked her if she would come with us and she answed negatively telling me that I just had to call her after the apointment to tell her what the doctor will tell me. She said that she would babysit the cat insted! The cat doesn't need a babysitter for a day (or two)!!!!

She is avoided the subject one more time.
Helpful - 0
Avatar universal
One other thing.  We're all scared of what this disease will bring, and watching your mom is difficult as you say.  But there's a difference between you and her...you have all this information!! Your mom didn't.  She may now, but for all the reasons I mentioned above, she may be past wanting it.  You are keeping an eye on yourself at a young age.  You are doing everything in your power to NOT let this disease run your life.  I like to think that if we can all keep up such positive, proactive attitudes, we'll win this battle.  
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Avatar universal
I think there are a couple important things to keep in mind here.  I was concerned about my mother for a little while as well, though I now think she has something else going on.  I was wondering why she wasn't anywhere near as eager to get treatment as I was, but after thinking on it, I think I understand.

1) Chiari can possibly be genetic.  No mother wants to see her child sick, and I can only imagine that it's 10x worse to realize that they are sick because of her own genetics.  WE know it's not her fault, but I'm sure she would feel guilty even so.

2) The pain from CM is horrible, but you can get used to it.  I know I have.  If your mom has been dealing with this for a long time, her desire to get treated may not be as strong as yours because she's come to accept it over time.

3) There is no cure.  Treatment of symptoms isn't even that great.  Your mom may know this from talking to you.  Some people may take that information and say...well, I'd rather be in pain and at home than in pain and in a doctor's office all the time.  I can't blame them.
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1755089 tn?1376053555
My mother is having diner with her best friend tonight. I hope she will be able to talk her into having more test run, including an MRI. It seems that her health as been worst lately that I thought! Her best friend told me that she told her that her periods have started again after 10 years of been over. So I hope she will lisen to her more than me.
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Avatar universal
I agree with the family history comment.  My kids have acquired both CM related family migraine issues and non-CM related ones.  I'm grateful to have that knowlege to give them because they are so prone to them geneticly.

As far as CM being genetic.  I think the more the docs study us the more they will find there are some very strong genetic traits that don't always add up to CM; however, they do give us a strong probability of it.
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Avatar universal
Drew, I'm probably going to repeat a lot of what has already been said; it's a bad head day for me.

It's so hard to watch your closest relatives suffer, and know that if they'd listen perhapse something could be done.  You don't have to follow the same path, you have something she didn't:  knowlege, treatment, and support.  I'm sorry you have to go through this; hopefully you have someone r/t to support you.

I agree with Rylanesmom, try talking to the doc at her care facility.  Is there someone she's already given power of attorney and that sort of thing to?  In some situations the docs can work with that person to help intervene with a patient in your moms situation.

I also agree with the others that she could be depressed.  Heck, I'm diagnosed and depressed due to this disease and the things that go along with it.  Perhapse she'd be more responsive to getting treatment for her depression so she could look at the possibility of living (I hope that wasn't too harsh, it just seems like she's in a fatalistic mindset) and treating her CM?

I had a very good friend as a teen who was 76 and she would always tell me "Oh well, I guess I'll have to live another year" around this time of the year.  Your post reminded me of our relationship.
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1827123 tn?1383865276
I would have it checked out. I am the first DX of 5 generations of migraines. My Great Grandmother found her father dead at the age of 12. He took his own life because his headaches were so bad and could not find relief. I have an Uncle that suffers from migraines. My mother had them also, we discovered hers was from cancer on her brain stem 2 months before her passing at 51. I am not sure of who my father is or what any family history may be on that side of the family, but I believe any family history known makes all the difference!
jiggle93
Helpful - 0
1306714 tn?1327257080
I tried to do this behind my mother's back and sadly to say the Dr. said they couldn't do any thing without your mom's concent.  I would suggest as Selma said.  Ask her to do it for you and express how important this information is not only for her, but also for you and your childeren.  I wish you the best.  I  know my mother is just as stubborn and won't take an aspirin.  It is very flustrating.  
Helpful - 0
1755089 tn?1376053555
I try almost every day to talk to her about MRI and possible Chiari. But she will listen to nothing.

Rylanesmom I will try to talk to her doctor, but I'll have to do it without her not knowing it. I don't like nore trust her doctor (he is young and does as if he knows everything and dismis our oponions most of the time, but he is the only choice she as we have a shortage of doctor in this region), but I will still try!

Thank you all.
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620923 tn?1452915648
COMMUNITY LEADER


  Hi...ur mom's reply is the same my dad makes when I ask him to go, but he is in his 70's....but, I tell him it is also for me, and the rest of the family so we know where in the family it comes from and how it affects us...I know what issues he has, HA's all the time, temper issues, balance issues, sleep issues, and he has heart issues which can result from EDS ...one type involves the heart, it is for our medical history we need to know...but he claims his life is over...yadda yadda...ugh....

Yes, chiari can make one depressed and so can living in pain....let her know u may be able to reduce some of the pain, unfortunately for how long it has gone untreated, there may be perm nerve damage....

No way to know unless she has the MRI...but EDS causes all over body/joint pain...and there are ways to help...so do talk to her as it is related to chiari.

  Good luck
   "selma"
Helpful - 0
1306714 tn?1327257080
I feel your pain.  I watched my dad for yr's with neck wrap's.  Awful headaches. etc.  He has passed on now.  Bless his soul.  but I was dx'd with Chirian after he passed and I alway say that if he was checked he would of been dx'd with Chiari.  They say it's not hereditary, but I question this.  Now I'm watching my daughter who is now 33 with no insurance going through same symptoms as me.  Wish you the best with your answer's  It's hard watching the ones you love with pain all the time.....
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1823499 tn?1370090289
I feel you should do what Rylansmom says. Talk to the drs there. Fill them in on chiari. My mom is 57 she blames all her neck and backpain on 2 motorcycle accidents. Which i believe is part of her issues  yes  but im tryin to have her get an mri to look for chiari. I believe the accidents may have a great deal but i also believe she may have chiari as well. Id like to know. Shes stubborn. Says if she had it they would have foun it by npw. Not if they dont know or werent looking, right?! Makes me wonder.
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1903798 tn?1333905288
Darn iPad sorry for the typos
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1903798 tn?1333905288
Drew I do think that it should be checked.  Since you have chiari and some symptoms are the same investigating would be worthwhile.  if he is a csf flow blockage hat could be improved with surgery.  There are man other illnesses that go along with chiari that cause symptoms as well and proper diagnosis and treatment can improve quality of life.  I would talk to the Drs at the retirement home as they may be able to assist you in getting h proper screening.
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