Aa
how do people cope???!
how do people cope im goin mad! my head and neck pain are gettin worse and its killin me - me head feels sooooo senistive and i wake up throughout the night cus of the pain, and wen i do wake up to get up i have tinglin hands, and me head painfull n me necks stiff. it jus doesnt go away and the doc wont giv me an other pain relief..
ive gotta wait for me neurosurgeons appointment and well see wat he says.. but wat if he says surgeon isnt required.. i wanna cry n am but it ent guna hep me head. i cant get comfy or anythin and i try hide me pain but the last 2weeks its got really bad!
i really cant cope much longer!!
x
ive gotta wait for me neurosurgeons appointment and well see wat he says.. but wat if he says surgeon isnt required.. i wanna cry n am but it ent guna hep me head. i cant get comfy or anythin and i try hide me pain but the last 2weeks its got really bad!
i really cant cope much longer!!
x
Agreed. My husband had surgery in May/10. He stayed at his parents home for 2wks so he could recover in a safe, quiet environment: we have 4 children and 2 lap dogs.
most of us have kids of one age or another. you need someone to help care for them while you are in the hospital and then while you are at home, healing. i don't recall the ages of your children, but if it's possible, it will actually help your healing process if they can stay with a relative or friend the first wk or two that you are home. this will allow you a little time to not have to worry about anything/body but yourself and simply heal. and you will need that time!!
thanx ladies for your comments.
im guna chase it up come monday as enoughs enough.. i told the neuro that its effectin my life that i wanna jus be able to hav normal days. ive two small kids to look after and its affectin them too. wat about if surgery does happen wat about my kids.. that wat scares me.. anyone else had that suitation?
im guna chase it up come monday as enoughs enough.. i told the neuro that its effectin my life that i wanna jus be able to hav normal days. ive two small kids to look after and its affectin them too. wat about if surgery does happen wat about my kids.. that wat scares me.. anyone else had that suitation?
just keep aggravating the heck out of them ,if you have to go to their office and tell them you have come to get the referral,when they see your not gonna quit until you get it maybe they'll help,thats what i had to do to get my drs to help.they dont have to live with this pain so they dont give a crap ,some doctors i mean,i know there are some good drs out there somewhere,they are few and far between though.i like warm bath water to relax or soft music in a dark room.dont bend over or squat alot,just try to think of things you do that seem to make it worse so you stop doing them.imostly i sit on my butt or lay around and dont do much,as far as housework,i figure this house will be here when i'm long gone so i just do what i can when i can.so mainly just take it as easy as you can,and make a list of questions you want to ask the dr,and of all your symptoms,it will help you alot when you see him.god bless
it may not work for you, but it does work for some....try something with a lot of caffine in it like mountain dew or coke and chocolate. sometimes that can help when taken with 3 or 4 aleve or tylenol. i feel for you, friend and know your pain. i hope you can get ahold of your ns on monday....just tell them your symptoms have progressed to the point that you're having black outs and you need to be seen asap. maybe then they will get you in faster. i'll be thinking of you and hoping for the best!!!
elizabeth
elizabeth
Ya, you need to get into that surgeon quickly! The squeaky wheel gets the grease. Don't wait for doctors to follow up, to do referrals, you be sure to phone up the surgeon, keep calling your pcp, keep calling the surgeon until you've got an appt.
Its taken me 2+ months just to get a referral to a neurosurgeon. I made it happen. I called the University of California hospital in San Francisco and talked to staff in the neurosurgery dept. I found out what dr is the Chiari specialist, what I needed to do to see them.. I wish I'd taken the reigns 2 months ago instead of waiting on my pcp to find me a surgeon. They referred me to a surgeon who never got around to my file because she's backed up on referrals. She had no business accepting a stat referral in the first place. She wasted a month of my time.
I've found out during this process that you simply can't trust drs to do what they say they'll do. My eye de told me she'd send the mapping of my optic nerve to my pcp because it showed swelling and she was concerned. The swelling was within the "normal" range, but not normal for me, and the 2 eyes compared made it obvious. All my pcp had was a note saying that my optic nerve was normal. This was after the eye dr told me I should consider surgery and offered to refer me to a neurosurgeon herself. Aauugghh! It's so frustrating! These people; the doctors and their staff should be doing their jobs! Patients shouldn't have to check and double check to make sure things get done. We've got enough on our plates with being sick and all! It's infuriating!
So please don't let them give you the run-around. You have to be your own advocate and make sure these drs are keeping on the ball and doing their jobs. Good luck!
-Jenn
Its taken me 2+ months just to get a referral to a neurosurgeon. I made it happen. I called the University of California hospital in San Francisco and talked to staff in the neurosurgery dept. I found out what dr is the Chiari specialist, what I needed to do to see them.. I wish I'd taken the reigns 2 months ago instead of waiting on my pcp to find me a surgeon. They referred me to a surgeon who never got around to my file because she's backed up on referrals. She had no business accepting a stat referral in the first place. She wasted a month of my time.
I've found out during this process that you simply can't trust drs to do what they say they'll do. My eye de told me she'd send the mapping of my optic nerve to my pcp because it showed swelling and she was concerned. The swelling was within the "normal" range, but not normal for me, and the 2 eyes compared made it obvious. All my pcp had was a note saying that my optic nerve was normal. This was after the eye dr told me I should consider surgery and offered to refer me to a neurosurgeon herself. Aauugghh! It's so frustrating! These people; the doctors and their staff should be doing their jobs! Patients shouldn't have to check and double check to make sure things get done. We've got enough on our plates with being sick and all! It's infuriating!
So please don't let them give you the run-around. You have to be your own advocate and make sure these drs are keeping on the ball and doing their jobs. Good luck!
-Jenn
since my doc rushed me to hosptial the other week on possible TIA i think hes finally realised somethins wrong n im in pain. i phoned docs wantin a repeat prescription and my doc fones me wantin to ask me how i am and wat happened at the hospital. never had that before..
its like im lyin in me bed now with no lights on, and the telly on low and me heads jus poundin, throbin and me necks killin.. tinglin in me fingers..
im confused about me neuro appointment i had though, he said id definately got low lyin cerebellum tonsils of 1cm but didnt actually say yes you have chiari malformation although he mentioned it and said its possible as my signs/symptons go inline with that. but then said lets see wat the neurosurgeon says - if surgery is needed. so basically its down to weather or not he thinks soo. wish the appointment would hurry up as ive loads of questions and stuff. plus i want some pain releif thats guna help!
its my birthday tuesday but i ent got the energy todo anythin, i wanna cancel it! as i feel like i hav nothin to smile about.. jus one days rest thats my wish!!
thanx hun xx
its like im lyin in me bed now with no lights on, and the telly on low and me heads jus poundin, throbin and me necks killin.. tinglin in me fingers..
im confused about me neuro appointment i had though, he said id definately got low lyin cerebellum tonsils of 1cm but didnt actually say yes you have chiari malformation although he mentioned it and said its possible as my signs/symptons go inline with that. but then said lets see wat the neurosurgeon says - if surgery is needed. so basically its down to weather or not he thinks soo. wish the appointment would hurry up as ive loads of questions and stuff. plus i want some pain releif thats guna help!
its my birthday tuesday but i ent got the energy todo anythin, i wanna cancel it! as i feel like i hav nothin to smile about.. jus one days rest thats my wish!!
thanx hun xx
Yes u need to call them! Plus to be honest after speaking for a while now you nay need to change your GP. Saying that, given ur complex case it may be that the GP is airing in the side of caution until all tests have been done, the major downside to chairi and related conditions is the waiting around for appointments n tests! X I know what you mean by bending over! Those headaches when even moving hurts is just draining!!!! Xx ((((((hugs))))))
ive no idea.. im waitin on a referral for a neurosurgeon. :-( when i was saw me neuro the 8th oct he said he was referrin me the top neurosurgeon at the QE in birmingham - Dr Flint! im guna fone me doctors on monday try get in and talk to me gp again as he seemed to have hes concerns too.
when is your next appointment!? can you call and see if they've had any cancellations?!?!
it sounds like they need to get you in sooner!!
it sounds like they need to get you in sooner!!
i hav a bath every night.. but doesnt really help. if its too hot can bring on a seizure, cant hav candles on for long and as they too get to me over sensitive eyes.. ive brought a new bed side lamp and got a low watt bulb in as me other lights are too bright and make me head worse..
tonight wen kids went to their dads, i tried tiyin up as kids room was a mess. even this seemed too much. the bendin and standin etc made me head hurt more, had to stop a few times!
the docs gave me co codamol and tramadols but either help with the pain. so i stopped.. the other sunday i had some tramadols as the pain was too much and felt different within 3hours id had a seizure and docs actaully think it was a mini stroke! so erm ive gave them back to the doctor..
i hate this feelin and jus feels like im gettin worse n worse and left to jus get on with it. im tryin soo hard to be normal and not let me pain show but its hard, this weeks been the hardest, im not sleepin or eatin cus of it either..
i really do wanna giv up! i feel soo alone. none of my family or friends understand to me or wat im goin through! i feel like im in a dark dark room and soooooo alone! :-(
tonight wen kids went to their dads, i tried tiyin up as kids room was a mess. even this seemed too much. the bendin and standin etc made me head hurt more, had to stop a few times!
the docs gave me co codamol and tramadols but either help with the pain. so i stopped.. the other sunday i had some tramadols as the pain was too much and felt different within 3hours id had a seizure and docs actaully think it was a mini stroke! so erm ive gave them back to the doctor..
i hate this feelin and jus feels like im gettin worse n worse and left to jus get on with it. im tryin soo hard to be normal and not let me pain show but its hard, this weeks been the hardest, im not sleepin or eatin cus of it either..
i really do wanna giv up! i feel soo alone. none of my family or friends understand to me or wat im goin through! i feel like im in a dark dark room and soooooo alone! :-(
I can't imagine how I'd be able to get through if I didn't have narcotic pain meds and musclre relaxers. I've been on them for 2 yrs for my RA-.type arthritis. I'm kinda lucky I was already hooked up with a pain Mgmt clinic.
If ist weren't for the HA, I'd probably be off the narcotics since my arthritis pan is better. My pain dr is very cool and has allowed me to stay on the meds for my HAs too.
Your dr should rx something to relieve your pain.
If ist weren't for the HA, I'd probably be off the narcotics since my arthritis pan is better. My pain dr is very cool and has allowed me to stay on the meds for my HAs too.
Your dr should rx something to relieve your pain.
selma is right!! the bathtub is always the place you would find me after a bad chiari filled day!! a nice hot bath could always make me take deeper breaths and sorta relax!!
also - as far as the surgery - share your concerns with your neurosurgeon! sometimes - surgery isnt the best - sometimes it IS!! although your neurosurgeon will tell you his/her opinion - the decision (at least from my experience) is up to you!!
good luck!!
also - as far as the surgery - share your concerns with your neurosurgeon! sometimes - surgery isnt the best - sometimes it IS!! although your neurosurgeon will tell you his/her opinion - the decision (at least from my experience) is up to you!!
good luck!!
COMMUNITY LEADER
I am so sorry u r in such pain...have u tried the diff relaxation techniques?
Soak in a warm tub...low lights, candles with a soft fragrance...soft enjoyable music??
I know it is not easy....also, what have u been doing activity wise....I pray nothing with pain like that...just rest, relax as much as u can.
We do have a list of anti inflammatory foods u may want to try that to see if it helps.
http://www.medhelp.org/health_pages/list?cid=186
"selma"
Soak in a warm tub...low lights, candles with a soft fragrance...soft enjoyable music??
I know it is not easy....also, what have u been doing activity wise....I pray nothing with pain like that...just rest, relax as much as u can.
We do have a list of anti inflammatory foods u may want to try that to see if it helps.
http://www.medhelp.org/health_pages/list?cid=186
"selma"
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
