Hi I’ve had my surgery last month in oct but its been so hard dealing with having Chiari malformation because a lot of people don’t get what it is and what happens and since my surgery I’ve had a real hard time coping with it when I first found out all I did was cry I wasn’t showing any symptoms beside a headache for 7days straight the strange thing was I wasn’t scared of the surgery or the cuts or pain I was going to go thru I was scared of the needles (I’m a needle phobic) but recovery has been hard as well I still have stitches and glue sticking out and a hole lot of back pain and a new thing is when I bend down or try to stretch my leg my thigh starts to hurt super bad and it feels like im pulling a muscle and then ill stand up straight. And it will start burning really bad I don’t know it anyone has had the same problem PLEASE SHARE I can’t get the doctor to look at it when I told him he said keep stitching it will go away PLEASE REPLY to me
im sorry, this does not soumd fun
first off, why do you still have stitches, these should of been taken out about 10days after surgery,
this can cause other issues, and the scar to grow over it,
i reccommend you to have these removed NOW, you would have healed enough to not need them,
next question, whats been hard for you? is it the recovery, or the mental side of it, or family and friends not understanding?
we are here for you,
im sorry for the questions,
I agree those stitches should have been gone a long long time ago!! get them out NOW your doctor sshould know this...
as for the burning sounds like it might be a nerve thing but then it might be coming from the stitches still being in there and you healing over them.
like joelene i have to ask what specifically is hard?
The dr told me the stitches are suppose dissolve and I can’t get him to see me its the whole thing friends don’t under stand family don’t get it recovery sucks and I just realized its I’m always going to have Chiari Malformation it makes me feel like I’m not normal. I feel so misplaced and noone really been there for me No one understands not even the drs I haven’t met one dr that’s heard of it or know what it is besides the surgeon that did the surgery
The dr told me the stitches are suppose dissolve and I can’t get him to see me its the whole thing friends don’t under stand family don’t get it recovery sucks and I just realized its I’m always going to have Chiari Malformation it makes me feel like I’m not normal. I feel so misplaced and noone really been there for me No one understands not even the drs I haven’t met one dr that’s heard of it or know what it is besides the surgeon that did the surgery
I am sorry to hear you are in such pain. I understand the whole issue of people not understanding. When you have a condition like Chiari, fibromyalgia..etc, people can't see your problem's so they think "oh well, she can walk and talk so it must not be that big of a deal" but it really is. I deal with guilt and shame because I can't work or clean my house like I used to, and even though I know why I can't, I can't seem to get rid of these feelings. I also find that I don't tell my immediate family about pain or other issues, it's like I am trying to shield them, but that only makes me feel worse and they tell me they would rather me let them know. I hope you get some relief from your pain and will keep you in my prayers! Pam
this is such a big issue,
i dont have support, and omg it sucks,
my husband ignored it for yrs even when i had 2 mini strokes in front of him, or in so much in my chest and couldnt breath,
i asked my family for help, my dad came over and straight away had a go at me, and told me to sell my house and husband to quit job to stay home and look after me, he told me that when i marrried him, his responcibity was taken away, i then said for once i could use some support, he then turned to me to my face and screamed that i was ungratful, he was right in my face, to the point i was starring at the knife on my bench ( iwould of used it), he then yelled and called me a f%$%^ B%#%#% i could hit you right now,
i cried for days, but i never asked for help again, i felt so alone, i wanted to die,
so support is such a rare thing, and if you have a little of that hold on to it,
chiari is an illness that no one really understands even us who suffer from it,
i had surgery in june, (decompression) and my sister asked me to visit her, i told her i wasnt well, she then asked me, did i have aviris? i told her no it was just chiari,
her relpy was "you are fixed due to op"
i told her there was no cure and im still going to have problems,
she then asked if my symptoms have eased, i told her no some of them has,
sh then said OK
that was the end of it, i havent heard from her in 2wks,
the thing that got me was, there is my family that thought i was fixed, and they didnt understand ir want to know more about what it is and what i suffer from.
ive had 2 surgeries, one was a removal of a arachnoid cyst compression my spinal cord in my thoasic area,
that was 3yrs ago, a horrible surgery.
decompression was done june just past,
i waiting now for another mri and surgerical date for a removal of a intradural lesion (tumor) in my spine, in the same place as the arachnoid cyst was,
and im still not taken seriously, when i told my mum its was a tumor she yelled at me, and told me i was wrong,
anyway its up to us to try the best we can, try not to beat ourselves up, and tell people to get stuffed, lol
Omg i feel u I told my sister were like best buddies she’s the only one that understood me to know what I’m going thru and when I mentioned that this whole thing was going to happen she made a joke oh ur going to get brain surgery I knew then she wasn’t going to be there my dad helped me a lot but he don’t understand and my hunny was amazing on being a nurse but hed get mad for no reason and his mom would make me food I could not have cuz I had the surgery twice and then 4day before Halloween I had to go back and get my gull bladder removed and I was so sad cuz I have a 6yr old I didn’t not get to go trick or treating with it made me more depressed and I has to spend my bday there as well I was only hm for one day before I had the bladder surgery
iam sorry the first thing you need to do is educate your family and then educate your doctors....and realize you are not normal-LOL-- you are EXCEPTIONAL-- you are a strong person surviving in the jungle of mixed up emotions and recovery! my suggestion to you would be
1 find a new doctor one who is a chiari expert even if you have to travel (honestly yours sounds like a yutz)
2 find yourself a counselor (i really think you need to talk to someone esp about your depression)
3 find yourself some support, support doesnt necessairly have to understand your plight just be there for you.(this can also be #3,or we here in this group too we understand)
4 and please dont take this the wrong way but
STOP feeling sorry for yourself-- YES chiari SUCK & YES recovery SUCKS & YES many people DO NOT understand it,
But you are Making all those things worse by feeling bad about yourself & your situation. you are ALLOWING all to continue to pile up-ya see what I am saying?? Once you stop feeling sorry for yourself,and letting everyone's BS pile up on you start putting your foot down to doctors and finding the care and direction you NEED & DESERVE others (family/friends) may start realizing things a bit more clearly!
* AND REMEMBER YOU NEED TO EDUCATE THE UNEDUCATED -Lots of information on this site to do just that!
i agree with lisa,
we need to empower ourselves, and knowledge gives us that power,
there are alot of drips out there, even docs, you need to weed of the negative people, one by one each one goes,
i did that, so i could get stronger, i now rely on me, no one else, i dont expect anything from anyone,
i must admit that comes with time, you learn who you can lean on and who you cant, try not to take it personally when they dont help, there is a great women who once told me, its their loss for not knowing and caring for awonderful person, and you know what she was right, it is there loss, not mine, i live my life as they do with theirs, and if we join up then cool, but if we dont then its the way it goes,
i hope this might help, and i am here to hear all your toubles, so if anything bugs you please come on here, we understand it, we just sometimes in different stages mentally, as we have dealed with this longer, and learning comes with it over time,
joelene