I have read a few posts from others who are completely frustrated with family and friends also. I feel like they think I’m making everything up.
They want me to keep trying alternate things to avoid surgery. The surgeon said the surgery is the only thing that will help yet the neurologist said to try acupuncture and atlas chiro. There are only 5 people in this state that do atlas chiro. I just feel like I want to do the surgery now and get it over with before I get worse.
Sorry for the pity party!!!
How did those of you who have family that understands get them to that point?
Well ultimately it is your body, your life, and your suffering. Only you can truly make the final decision. Best you can do is to do what feels right, inform your family and friends and go from there.
I am so sorry that your family is not fully educated on Chiari.
I would suggest you get the book "Contents Under Pressure" by Ray D'Alonzo and have them read it...I wish I had done that.
I got the book after the surgery!!! Best to have loved ones read it b4....It is a fast read and EXCELLENT!!!!
I know how it is to feel as though you are making more out of your condition than need be....when actually you are more than likely not telling anyone ALL your symptoms, in fear they will think your nuts!!!LOL
My family has been pretty supportive.. except for my dad.. he really doesn't understand what the surgery will do for me when/if I have it.
I'm also having trouble getting my benefits company and work to understand what its like... that has been the hardest part because they don't understand that symptoms can come and go within a day.
I know exactly how you feel, I hope things get better for you. <3
I can completely relate. Fortunately I have some people that do understand, so I have learned to lean on those people and learned to accept that some people that I love and care about just won’t understand. Ultimately, when it comes to surgery only you know when it is time for that. You live with the pain and symptoms and have to do what is best for you. Pray about it and listen for the answers that are given. Please know that I will keep you in my prayers. Take care!
As a family member who use to get frustrated, it is hard to realize what your going through when we can’t see it. I would think my husband was just not having fun and making an excuse to leave parties/events… Of course he wasn’t having fun HE WAS IN PAIN!! I was bitch at times and I fully regret not being sympathetic. Reading this site, talking to his neurosurgeon, researching on the web and seeing pictures has changed my viewpt. He recently had surgery and that experience has forever changed me. (I can see it, his scar, the hospital made it that more serious to me). Some family members may be in denial (his parents were and didn’t want him to get surgery) but it is your life. I recommend surgery if the symptoms are severely impacting your life. My advice, feel completely comfortable with your surgeon and make sure you have someone near you that will be sweet, patient, and nurturing during your healing process.
Girl, that wasn’t a pity party! You just need to vent and this forum is great for it!!
As a family member who use to get frustrated, it is hard to realize what your going through when we can’t see it. I would think my husband was just not having fun and making an excuse to leave parties/events… Of course he wasn’t having fun HE WAS IN PAIN!! I was bitch at times and I fully regret not being sympathetic. Reading this site, talking to his neurosurgeon, researching on the web and seeing pictures has changed my viewpt. He recently had surgery and that experience has forever changed me. (I can see it, his scar, the hospital made it that more serious to me). Some family members may be in denial (his parents were and didn’t want him to get surgery) but it is your life. I recommend surgery if the symptoms are severely impacting your life. My advice, feel completely comfortable with your surgeon and make sure you have someone near you that will be sweet, patient, and nurturing during your healing process.
Girl, that wasn’t a pity party! You just need to vent and this forum is great for it!!
Checking in to see if your family has come to see the light as far as the seriousness of Chiari??? Been on my heart...pray that your family will take it upon themselves to get educated on your condition.
Lonnie'sNoggin: I hate that....people..lay people ...say it has to be something else, ect...as for doctors...my experience was that EVERY NL I saw told be Chiari couldn't possibly be causing all my problems...At one point I was sure the next stop was the mental hospital....at that time..maybe I would have welcomed one of these uneducated NL's to referr me to a Physc Ward...I heard the food is pretty darn good there...At that time I needed to be away from these NL's!!!LOL
Haven't seen you on much Lonnie...how the heck are ya!!!
I am so sorry that your family is not fully educated on Chiari.
I would suggest you get the book "Contents Under Pressure" by Ray D'Alonzo and have them read it...I wish I had done that.
I got the book after the surgery!!! Best to have loved ones read it b4....It is a fast read and EXCELLENT!!!!
I know how it is to feel as though you are making more out of your condition than need be....when actually you are more than likely not telling anyone ALL your symptoms, in fear they will think your nuts!!!LOL
My daughter has been trying many procedures,medicines,therapy,none of things have helped and she has a chronic headache for 3 yrs.She scheduled for surgery on monday
So, Monday is the big day! please be sure to keep us updated on how Krissy is doing..and YOU.....I have 2 girls and I get stressed out when they have a simple flu!!!LOL But trust that she is in good hands.
