Aa
Just for fun :) Tell me the strangest/most frustrating time you get the Chiari head pains??
I was shopping for shoes today at Kohls and Had to keep bending over to try on shoes, I ended up on the floor ready to throw shoes everywhere!!! I just sat there so frustrated and angry!! All I wanted was some FLAT shoes so that I don't fall over so easily and what a process it was!! Terrible head pains just from shoe shopping!!! Happily though I came home with two cute pairs of shoes that I should not tip over when wearing :)
the strangest thing for me....is facial pains,everytime i ate...I am SO GLAD that doesnt happen anymore!
The more I read the more I think I might have to try some crocks :) I have hated them... my 11 year old loves hers! Might just be worth checking them out this spring :)
LOL I am laughing over the croc thing. I thought they were so ugly and thought to myself how can people wear them. I started to have problems with one of my feet. My daughter gave me a real pair to try and see if it helped my foot when I walked. OMG I loved the darn things. It was the only shoe that did not hurt my foot. I wore them the whole summer and then the winter too with real thick socks. On Christmas another one of my kids bought me another pair.MY foot has since healed and it is better but I still wear them. In fact I did put them away for the winter this year but now everyone has reminded me to get them out again
I thought these croc posts were amusing.
Chadry
I thought these croc posts were amusing.
Chadry
Ha ha you gave into the crocks too...at this stage I think comfort wins over everything else...that's probably why I live in sweats for most of my life...
But the big question is.,..do you wear yours with slippers?? LOL
Believe it or not I'm only 33..how sad..
But the big question is.,..do you wear yours with slippers?? LOL
Believe it or not I'm only 33..how sad..
Okay, so I always thought that Crocs were the UGLIEST things on the planet. I didn't care HOW comfy they were, I wasn't going anywhere near them. I am a self proclaimed shoe-*****, no matter the pain or discomfort. Then I found these almost not-as-ugly rubbery mock croc-y shoe things at Wal-Mart. I had bought a pair for work, and fell in LOVE with them. Then they went on sale for 50 cents a pair, so I bought one in each color that was my size. I think I have, like, 5 or 6 pairs.
I can't count how many times I've had to lean on DH for support when the HA's and dizziness and disorientation kicked in. Yup, Shopping is usually the culprit here, too...
I can't count how many times I've had to lean on DH for support when the HA's and dizziness and disorientation kicked in. Yup, Shopping is usually the culprit here, too...
Scottie...truthfully...sometimes I wear socks, slippers and the crocks!! The only way to keep my feet warm and sometimes that doesn't work. Never thought I'd see the day...
Good idea..with the recipes for freezing...I had people bring me a couple of weeks worth post op and it was a lifesaver!! My problem is being able to stand in the kitchen that long to do it...I guess maybe I could get the kids and DH in on the action!!
Good idea..with the recipes for freezing...I had people bring me a couple of weeks worth post op and it was a lifesaver!! My problem is being able to stand in the kitchen that long to do it...I guess maybe I could get the kids and DH in on the action!!
Carolyn~
The ONLY way to wear Crocs is with socks!!! Otherwise your feet sweat in them, even though your toes are freezing, lol, and then your feet completely freeze because they're all wet, ick. I have taken to using them as my "house slippers"... the wide soles are great on the days when I'm feeling wobbly (although if my legs give way, I'm going down no matter what, lol!).
There is a great website out there (I can't remember the name/address at the moment, but I'll see if I have it in my files) that is about "taking one day and cooking for the week" (or month, or something like that). Has great recipes to use which freeze really well. I have a Food Saver, and I LOVE it. It's going to come in handy right before I have my surgery should I ever get that far/get insurance!
Scottie
The ONLY way to wear Crocs is with socks!!! Otherwise your feet sweat in them, even though your toes are freezing, lol, and then your feet completely freeze because they're all wet, ick. I have taken to using them as my "house slippers"... the wide soles are great on the days when I'm feeling wobbly (although if my legs give way, I'm going down no matter what, lol!).
There is a great website out there (I can't remember the name/address at the moment, but I'll see if I have it in my files) that is about "taking one day and cooking for the week" (or month, or something like that). Has great recipes to use which freeze really well. I have a Food Saver, and I LOVE it. It's going to come in handy right before I have my surgery should I ever get that far/get insurance!
Scottie
Zygy...Congrats on the new nephew...I love that name Storm..hopefully it isn't any indication on temperment tho...lol
The best thing I had was family members making dinners and freezing them for us...it was a huge help so spread the word now. No flowers, cards etc....just food!! I am totally with you on the hubby page..mac and cheese is his speciality and if he goes grocery shopping..I get a lot of goodies and not so much good stuff!!
Scottie....Crocs rock!!! I love mine and I am not ashamed to admit it! I wear them around the house too and have been know to have them on to pick up the kids (with socks on too...) much to my kid's dismay!!
Selma...One day the Chiarian line is going to happen...lol...then we will all be rich!!
Carolyn
The best thing I had was family members making dinners and freezing them for us...it was a huge help so spread the word now. No flowers, cards etc....just food!! I am totally with you on the hubby page..mac and cheese is his speciality and if he goes grocery shopping..I get a lot of goodies and not so much good stuff!!
Scottie....Crocs rock!!! I love mine and I am not ashamed to admit it! I wear them around the house too and have been know to have them on to pick up the kids (with socks on too...) much to my kid's dismay!!
Selma...One day the Chiarian line is going to happen...lol...then we will all be rich!!
Carolyn
Sounds like all of us don't do well out shopping!! We should easily be able to recognize each other LOL I was excited to come home and see all the new posts!!! I just got back from the hospital... I now have a new nephew! A 7lb 15oz baby boy named Storm!!! I am exhausted and have a killer headache but it was awesome to watch my nephew born!!! Amazing!!! I am now home with a headache, my kids and my neice for two days... it is going to be a long long afternoon! All your posts made me smile at least!
It is amazing how similar all the stories tend to be! You can be quite embarrassed grabbing onto things to stand and holding your head when you are in public. It makes me feel like a crazy person some days. I figured if they were watching me on the security camera at Kohls that they were wondering what that lady was doing!!!
I hope that I too will wear those great heels again someday! I really hope that is a realistic goal for after surgery!!! I am already tall so it is an extra bonus to put on high heels. At work one day they wanted me to go up the ladder and decorate the 10 foot Christmas tree (tallest with longest arms get those jobs), I just laughed :) then I asked about how good my Boss' insurance policy is :) Luckily for me my boss is an old friend and is very accommodating to my needs... like NOT being the one to climb the ladders.
I like the walmart story!! There is nothing like a cute little old lady or old man coming to your rescue!!! It is so strange because normally you would not look at us and see anything wrong!
Redkim- That is wonderful that you looked for the right surgeon, and found the answers you wanted to hear! I am looking forward to asking lots of questions when I go in on the 29th.... I have started my list! Sounds like you keep busy and active, that is great! I like to walk, I used to power walk about 8-10 miles a day but I have been so tired the past year that now it is only about two miles a day but it helps. I also have a bad knee... I like to have strange problems, I get weird bone tumors growing in my knee so NO running anymore. Luckily my husband has a job where he can work from home some so when I have surgery he should be able to help. I only dread what he might feed us, I need to cook and freeze things in advance! In the 19 years I have been with him I don't think he has EVER been grocery shopping.... pretty spooky!! I will just have to get as organized as I can before surgery. Your art really is amazing, I have NO artistic talent and am just amazed by people that make it look so easy!!! I do well if I am in a kindergarten class and can use crayons to make stick figures :) I am probably not even really good at that if I was being really honest! If I can make big messes with art supplies and my kids than I am happy!!
It is amazing how similar all the stories tend to be! You can be quite embarrassed grabbing onto things to stand and holding your head when you are in public. It makes me feel like a crazy person some days. I figured if they were watching me on the security camera at Kohls that they were wondering what that lady was doing!!!
I hope that I too will wear those great heels again someday! I really hope that is a realistic goal for after surgery!!! I am already tall so it is an extra bonus to put on high heels. At work one day they wanted me to go up the ladder and decorate the 10 foot Christmas tree (tallest with longest arms get those jobs), I just laughed :) then I asked about how good my Boss' insurance policy is :) Luckily for me my boss is an old friend and is very accommodating to my needs... like NOT being the one to climb the ladders.
I like the walmart story!! There is nothing like a cute little old lady or old man coming to your rescue!!! It is so strange because normally you would not look at us and see anything wrong!
Redkim- That is wonderful that you looked for the right surgeon, and found the answers you wanted to hear! I am looking forward to asking lots of questions when I go in on the 29th.... I have started my list! Sounds like you keep busy and active, that is great! I like to walk, I used to power walk about 8-10 miles a day but I have been so tired the past year that now it is only about two miles a day but it helps. I also have a bad knee... I like to have strange problems, I get weird bone tumors growing in my knee so NO running anymore. Luckily my husband has a job where he can work from home some so when I have surgery he should be able to help. I only dread what he might feed us, I need to cook and freeze things in advance! In the 19 years I have been with him I don't think he has EVER been grocery shopping.... pretty spooky!! I will just have to get as organized as I can before surgery. Your art really is amazing, I have NO artistic talent and am just amazed by people that make it look so easy!!! I do well if I am in a kindergarten class and can use crayons to make stick figures :) I am probably not even really good at that if I was being really honest! If I can make big messes with art supplies and my kids than I am happy!!
I used to be a cashier for WalMart... and one day I was the lucky one to give the door greeter a break (I hated "door duty"). A frail, elderly man came into the store and needed one of the electric carts which I got for him. I got up from it, and had just gotten done helping him onto it when the pain hit, floored me, and ended up with HIM helping me up off the floor and to one of the benches while co-workers gathered around wanting to know if I needed an ambulance. I was mortified!!!
As for shoes, I find that Croqs (Crocs??) are THE most comfortable for me 'round the house. Yes, and sometimes I WILL wear them in public... but only on my really bad days. They are ugly as sin, but are wonderful feeling... especially since I have heel spurs on top of the chiari! I tend to wear walking shoes more than anything else because of the heel spurs. My podiatrist always told me that, when you're trying to find a good pair of walking shoes, the price doesn't really matter. The one thing you should always check is if the shoe bends when you grab it by the toe and the heel and try to "fold" it upwards (towards the upper). If it bends, don't buy. There will be no support.
Scottie
As for shoes, I find that Croqs (Crocs??) are THE most comfortable for me 'round the house. Yes, and sometimes I WILL wear them in public... but only on my really bad days. They are ugly as sin, but are wonderful feeling... especially since I have heel spurs on top of the chiari! I tend to wear walking shoes more than anything else because of the heel spurs. My podiatrist always told me that, when you're trying to find a good pair of walking shoes, the price doesn't really matter. The one thing you should always check is if the shoe bends when you grab it by the toe and the heel and try to "fold" it upwards (towards the upper). If it bends, don't buy. There will be no support.
Scottie
COMMUNITY LEADER
Great idea Carolyn.....lol...we can design a shoe that looks good, but only feels good on a chiarian...the others will envy us...hahahaha
Only in my dreams would that happen...lol...but such a nice thought.....
Only in my dreams would that happen...lol...but such a nice thought.....
I'd have to agree....lights, stores, being in a crowd or a large social situation...
Even at the grocery store..I just feel like I need to get the heck out of there..the headaches and disorientation start and the leg pain gets unbearable and I feel like running out of there!! I'd say for me that is the most frustrating b/c we have to eat and the kids need clothes and stuff and I feel like it's almost torture going shopping. It's a pity really b/c I'm sure otherwise I would feel like it would be therapy but I can't get past my head. So I have now taken to trying to buy everything online :) sounds crazy maybe but it is making my life easier!! I know at Christmas I took advantage of the no shipping fee deals and bought all my kids presents and they were shipped to my house.
The shoe thing...how I long for the day that I could wear a heel...I look at those woment with dark jeans and heels and I wish that could be me...I most definitely would fall on my face if I tried so it's not worth the risk lol
I agree it is really hard to be trendy when you have to have flat shoes, that aren't too pointy b/c your feet are wide and swell all the time..so I got hightops which I love...but aren't too good with the dress pants :) What to do... maybe we should design our own line of Chiarian fashion!
Carolyn
Even at the grocery store..I just feel like I need to get the heck out of there..the headaches and disorientation start and the leg pain gets unbearable and I feel like running out of there!! I'd say for me that is the most frustrating b/c we have to eat and the kids need clothes and stuff and I feel like it's almost torture going shopping. It's a pity really b/c I'm sure otherwise I would feel like it would be therapy but I can't get past my head. So I have now taken to trying to buy everything online :) sounds crazy maybe but it is making my life easier!! I know at Christmas I took advantage of the no shipping fee deals and bought all my kids presents and they were shipped to my house.
The shoe thing...how I long for the day that I could wear a heel...I look at those woment with dark jeans and heels and I wish that could be me...I most definitely would fall on my face if I tried so it's not worth the risk lol
I agree it is really hard to be trendy when you have to have flat shoes, that aren't too pointy b/c your feet are wide and swell all the time..so I got hightops which I love...but aren't too good with the dress pants :) What to do... maybe we should design our own line of Chiarian fashion!
Carolyn
COMMUNITY LEADER
I must agree going into stores ...I went into a Wegman's with my family and had to grab onto DD for dear life...I later realized it is the florescent lights that play with our depth perception as well as light and dark tiles on the floor....teh last time this happened I was with my sister just prior to Christmas in a Kmart....I still didn't realize it was the lighting until shortly after, but it is embarrassing to say the least....I get disoriented, hot, then nauseated...
As for shoes, I have always had a terrible time finding some not only to fit, but to feel good while wearing for ne length of time....I have ugglike boots that worked great over the colder months...EMU's...comfy, warm and wide...u could fit an orthodic in them if needed.
Sandals is also my preference in teh summer, but lately they r too flat and flimsy...no support, I saw nice thick soles, very cushy with support in the mens shoes, so, I have a pair of boys size 5 sandals...lol...but they work : )
Straps all the way around too...slip on shoes do not work well for us....and I might add, even being barefoot we can lose our balance, it isn't the shoe or height of the shoe as much as it is our chiari making us lose balance.
"selma"
As for shoes, I have always had a terrible time finding some not only to fit, but to feel good while wearing for ne length of time....I have ugglike boots that worked great over the colder months...EMU's...comfy, warm and wide...u could fit an orthodic in them if needed.
Sandals is also my preference in teh summer, but lately they r too flat and flimsy...no support, I saw nice thick soles, very cushy with support in the mens shoes, so, I have a pair of boys size 5 sandals...lol...but they work : )
Straps all the way around too...slip on shoes do not work well for us....and I might add, even being barefoot we can lose our balance, it isn't the shoe or height of the shoe as much as it is our chiari making us lose balance.
"selma"
Wow!!! What a question. Do you really want an answer? This is a weird one but...
Giving a Public Talk in front of the Congregation about how we can learn to cope with all of lifes trials without loosing hope in God as our fortress. Now my personal goal is to hopefully not have anyone focus on me but rather think about how they could apply the scriptures to help themselves in their own life situations. So how exactly to you hide a subcrainial or chiari pain shooting through your head while speaking to the congregation? Yeah that one was not exactly timed very well! :-\ But we made it and frankly somehow no one noticed, not even my wife. :-) Now the other day coming out of WalMart that was different, that one almost put me on my duff. I grabbed the little brick ledge and just stood there thinking no one would notice me and it'll go away. Well the WalMart greeter noticed.
Don't you hate the unpredictable nature of Chiari? To me that's the worst part about it.
Wolf P.S. hope you enjoy the shoes!
Giving a Public Talk in front of the Congregation about how we can learn to cope with all of lifes trials without loosing hope in God as our fortress. Now my personal goal is to hopefully not have anyone focus on me but rather think about how they could apply the scriptures to help themselves in their own life situations. So how exactly to you hide a subcrainial or chiari pain shooting through your head while speaking to the congregation? Yeah that one was not exactly timed very well! :-\ But we made it and frankly somehow no one noticed, not even my wife. :-) Now the other day coming out of WalMart that was different, that one almost put me on my duff. I grabbed the little brick ledge and just stood there thinking no one would notice me and it'll go away. Well the WalMart greeter noticed.
Don't you hate the unpredictable nature of Chiari? To me that's the worst part about it.
Wolf P.S. hope you enjoy the shoes!
I love shopping, maybe I do it for stress relief.
My NS is 100 miles from me. I met with one in town, 10 miles from where I live, but he didn’t have the experience I wanted. Nor would he agree that any of my symptoms were related to the Chiari, but was willing to do the surgery. He wouldn’t tell me how many surgeries he did and when I asked him what symptoms got better for his patients he told me that after surgery he never met with them again – HUH!!
I had my surgery a little over a year ago and am feeling much better. I am not back to the level I was before surgery, but I try. I figure skate and am able to do that 1-2 times a week, and I take an art class on the weekends. I still work fulltime and was taking some night classes last semester. I actually tried to this semester but stopped because all the walking to and from class was giving me headaches. So the search for good shoes begun.
I understand the laughing thing! How awful to not be able to show joy by laughing. I do get Chiari HA’s from laughing, it does suck. I don’t have kids to worry about, and can not imagine how stressful Chiari and the surgery would be. You have little ones to look after.
The incision isn’t too bad, my hair has grown out quite a bit, not to the length of the rest of my hair, but it’s getting there. It was actually nice having short hair back there, less to manage.
My symptoms before surgery weren’t as bad as some other on here, and I didn’t want them to get worse. I don’t regret the surgery, looking at MRI’s now my brain is all tucked in where it should be, which is amazing to see. I would say I am 80% what I would expect to be if I didn’t have Chiari. This weekend we get an elliptical machine and I look forward to getting back to being active. Six months after surgery we bought mountain bikes, which I ride casually. Really walking is the pits.
Thanks for the compliments on my art, I love having hobbies. My right arm is the most painful thing for me now. I have a bulging disk in my neck which could be the cause. I also have DDD and some days have extreme lower back pain with leg pain. I think becoming physically stronger will help with those, and I start therapy soon.
It’s scary to have surgery, especially brain surgery. You will know when you’re ready. I kept trying to get everyone to make the decision for me, then I just bit the bullet. Personally, I am happy I did. Hopefully you can get varying opinions and info on here to help you decide.
My NS is 100 miles from me. I met with one in town, 10 miles from where I live, but he didn’t have the experience I wanted. Nor would he agree that any of my symptoms were related to the Chiari, but was willing to do the surgery. He wouldn’t tell me how many surgeries he did and when I asked him what symptoms got better for his patients he told me that after surgery he never met with them again – HUH!!
I had my surgery a little over a year ago and am feeling much better. I am not back to the level I was before surgery, but I try. I figure skate and am able to do that 1-2 times a week, and I take an art class on the weekends. I still work fulltime and was taking some night classes last semester. I actually tried to this semester but stopped because all the walking to and from class was giving me headaches. So the search for good shoes begun.
I understand the laughing thing! How awful to not be able to show joy by laughing. I do get Chiari HA’s from laughing, it does suck. I don’t have kids to worry about, and can not imagine how stressful Chiari and the surgery would be. You have little ones to look after.
The incision isn’t too bad, my hair has grown out quite a bit, not to the length of the rest of my hair, but it’s getting there. It was actually nice having short hair back there, less to manage.
My symptoms before surgery weren’t as bad as some other on here, and I didn’t want them to get worse. I don’t regret the surgery, looking at MRI’s now my brain is all tucked in where it should be, which is amazing to see. I would say I am 80% what I would expect to be if I didn’t have Chiari. This weekend we get an elliptical machine and I look forward to getting back to being active. Six months after surgery we bought mountain bikes, which I ride casually. Really walking is the pits.
Thanks for the compliments on my art, I love having hobbies. My right arm is the most painful thing for me now. I have a bulging disk in my neck which could be the cause. I also have DDD and some days have extreme lower back pain with leg pain. I think becoming physically stronger will help with those, and I start therapy soon.
It’s scary to have surgery, especially brain surgery. You will know when you’re ready. I kept trying to get everyone to make the decision for me, then I just bit the bullet. Personally, I am happy I did. Hopefully you can get varying opinions and info on here to help you decide.
I agree!!! I went out today because I needed a normal day... shopping sounded good!
Ankle strap heels are the best no matter what... nothing worse than walking right out of your shoes!!
I am near Dartmouth Hitchcock Medical Center so it is wonderful to have a good hospital in my area! The 29th I am meeting to discuss the surgery with two Neurosurgeons. I love the Lady I am currently working with but she is young and I need to hear more about how much experience she has with this surgery. I really like and trust her though and that is a big step. I have two kids and really would like to get my head back to being able to laugh with them!! Laughing is probably my largest complaint, I am a happy person and to have pain when I laugh makes me very frustrated. I am lucky not to be having all the other neurological issues! Just lots and lots of Chiari pains with what some days feels like everything I do!
I looked at the pics in your profile!! First of all, amazing art!! Beautiful!!! Second, that is quite the cut they make... I am not sure yet that I have the guts to schedule the surgery to have that done to myself!! Call me a big chicken!!!
Ankle strap heels are the best no matter what... nothing worse than walking right out of your shoes!!
I am near Dartmouth Hitchcock Medical Center so it is wonderful to have a good hospital in my area! The 29th I am meeting to discuss the surgery with two Neurosurgeons. I love the Lady I am currently working with but she is young and I need to hear more about how much experience she has with this surgery. I really like and trust her though and that is a big step. I have two kids and really would like to get my head back to being able to laugh with them!! Laughing is probably my largest complaint, I am a happy person and to have pain when I laugh makes me very frustrated. I am lucky not to be having all the other neurological issues! Just lots and lots of Chiari pains with what some days feels like everything I do!
I looked at the pics in your profile!! First of all, amazing art!! Beautiful!!! Second, that is quite the cut they make... I am not sure yet that I have the guts to schedule the surgery to have that done to myself!! Call me a big chicken!!!
haha, I think buying the shoes is a good thing. You need to have things you love and make you feel normal. I have to say that when I start to get the headaches from walking I also tend to walk like an old lady, very slow...
It's hard for me to find heels because of the size difference, one it either too tight or it fallsing off the other foot, lol! Ankle starp heels are my only safe bet.
Have you decided which surgeon will do your surgery?
It's hard for me to find heels because of the size difference, one it either too tight or it fallsing off the other foot, lol! Ankle starp heels are my only safe bet.
Have you decided which surgeon will do your surgery?
:) Two different size feet has to make your shoe shopping VERY difficult!! I LOVE naturalizer shoes, they are usually cute enough and have enough cushion to be be comfortable!! I was happy to find some that were flats, I am sick of falling over at work and needed to find some reasonable shoes while my head is wacky! I now have two neurosurgeons that have said "YES, have the surgery" so it is a matter of when...I am just not really looking forward to making room for that in my schedule. I did buy a cute pair of heels though for after surgery and recovery!!! Can't always be practical!!!
I need to find some good shoes, I get headaches from walking. None of my shoes are very supportive so I was thinking of posting a questions to look for recommendations.
I understand your frustration. I wear boots, flats, sandals - they all cause headpain. I like sandals because during the summer it's too hot to wear sneakers. I wear flats for work - when we have to dress business casual. Boot I like when it's cold.
I have high arches, and one foot is a size 7 and the other a 5.5 so it's already hard to find shoes to fit. Plus I want them to look cute :).
Any advice on a brand that's offers support and cushining?
I understand your frustration. I wear boots, flats, sandals - they all cause headpain. I like sandals because during the summer it's too hot to wear sneakers. I wear flats for work - when we have to dress business casual. Boot I like when it's cold.
I have high arches, and one foot is a size 7 and the other a 5.5 so it's already hard to find shoes to fit. Plus I want them to look cute :).
Any advice on a brand that's offers support and cushining?
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