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Activities to avoid with Chiari...
I am posting this here as it seems not many utilize the Health Pages and I want this to be seen by ALL!!
The subject no one wants to hear about, but chiari and syringomyelia are life-altering conditions and you WILL have to face that and change some major things in your life. You will find people with these conditions who continue to do some of these things, but they do so with the knowledge that it can severely alter their current condition for the worse. The following are just some of those No-No’s:
NO neck stressing activities, such as roller-coasters, 4-wheelers, skateboards, horseback riding, motorcycles, wave pools, backpacking, falling asleep in chairs, extended reading with head bent ect.. Anything that “jars” your head and/or spine is a definite no-no.
NO neck stressing sports, such as water skiing, snow skiing, snow boarding, sky diving, bungee jumping, diving, playing tennis, basketball, soccer, football ect (Just trying to cover all the basics – you get the idea.)
NO contact sports.
NO Chiropractor!- Especially at the neck for chiarians and for those with a syrinx, no deep tissue in the area of ur syrinx.(The chiro should be well versed on Both CM/SM)
NO straining which includes straining to reach something, or even straining during a bowel movement. Take a fiber supplement every day if you tend to get blocked up.
NO moving furniture or heavy objects around by pushing, pulling, lifting, or any other way. Pick up nothing heavier than a gallon of milk. I know – that sounds impossible, but keep that gallon of milk in the back of your mind.
NO moving around in the dark!
NO putting yourself into stressful situations or relationships. Try to relax, avoid noise and keep your neck muscles relaxed.
NO twisting your spine – try to keep a good posture with your spine lined up and straight.
NO bending over. lower yourself to the floor by bending your knees – not your back.
NO sudden spinal/neck movements.
NO using the hair wash sink at the hair salon.Instead ask for the special try that most hair salons have that are designed to accommodate people who are unable to bend their head/necks backward.
NO Lifting more than 15 lbs when strength training or backpacking.Heavy lifting is generally not recommended especially if you have a syrinx.
AVOID sleeping in a head down position.
Avoid cervical traction.
Avoid lumbar punctures, spinal taps or epidurals, unless it is a well informed chiari dr....if a LP is drawn too quick it can cause the tonsils to herniate even further.Done incorrectly, this can be very dangerous for a chiarian.
AVOID doing any kind of activity that causes you to bend your head backwards, such as: bending back to gargle, washing hair in the shower ect.
AVOID food with too much salt.Especially for woman during their premenstrual period.
DON'T participate in any physical activity that puts you in jeopardy of falling and or creating trauma of any kind.
DON’T try to keep commitments when you’re feeling badly. Listen to your body.
http://www.medhelp.org/health_pages/Neurological-Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186
The subject no one wants to hear about, but chiari and syringomyelia are life-altering conditions and you WILL have to face that and change some major things in your life. You will find people with these conditions who continue to do some of these things, but they do so with the knowledge that it can severely alter their current condition for the worse. The following are just some of those No-No’s:
NO neck stressing activities, such as roller-coasters, 4-wheelers, skateboards, horseback riding, motorcycles, wave pools, backpacking, falling asleep in chairs, extended reading with head bent ect.. Anything that “jars” your head and/or spine is a definite no-no.
NO neck stressing sports, such as water skiing, snow skiing, snow boarding, sky diving, bungee jumping, diving, playing tennis, basketball, soccer, football ect (Just trying to cover all the basics – you get the idea.)
NO contact sports.
NO Chiropractor!- Especially at the neck for chiarians and for those with a syrinx, no deep tissue in the area of ur syrinx.(The chiro should be well versed on Both CM/SM)
NO straining which includes straining to reach something, or even straining during a bowel movement. Take a fiber supplement every day if you tend to get blocked up.
NO moving furniture or heavy objects around by pushing, pulling, lifting, or any other way. Pick up nothing heavier than a gallon of milk. I know – that sounds impossible, but keep that gallon of milk in the back of your mind.
NO moving around in the dark!
NO putting yourself into stressful situations or relationships. Try to relax, avoid noise and keep your neck muscles relaxed.
NO twisting your spine – try to keep a good posture with your spine lined up and straight.
NO bending over. lower yourself to the floor by bending your knees – not your back.
NO sudden spinal/neck movements.
NO using the hair wash sink at the hair salon.Instead ask for the special try that most hair salons have that are designed to accommodate people who are unable to bend their head/necks backward.
NO Lifting more than 15 lbs when strength training or backpacking.Heavy lifting is generally not recommended especially if you have a syrinx.
AVOID sleeping in a head down position.
Avoid cervical traction.
Avoid lumbar punctures, spinal taps or epidurals, unless it is a well informed chiari dr....if a LP is drawn too quick it can cause the tonsils to herniate even further.Done incorrectly, this can be very dangerous for a chiarian.
AVOID doing any kind of activity that causes you to bend your head backwards, such as: bending back to gargle, washing hair in the shower ect.
AVOID food with too much salt.Especially for woman during their premenstrual period.
DON'T participate in any physical activity that puts you in jeopardy of falling and or creating trauma of any kind.
DON’T try to keep commitments when you’re feeling badly. Listen to your body.
http://www.medhelp.org/health_pages/Neurological-Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186
No pruning--this is what did me in recently.
No helicopter driving either, if you're prone to flicker vertigo.
No helicopter driving either, if you're prone to flicker vertigo.
1 Comments
I have loads of buckthorn in my large backyard tree line and love going at it with pruners or beloved electric pole saw. I would push myself (since doctors said I was physically ok) then die from pain. Pain pills were the only way I was able to function in spurts. This may have been what made my condition so much worse--plus hacking and pulling out old tree roots. Even broke three ribs doing it. Yet the severe worsening of my condition didn't happen right away and I've felt so lousy 24/7 for last several months and total resting. I'm not convinced that certain movements worsen things. The long term effect on adjoining brain systems, with one thing leading to another, is what has really done me in. Pituitary, blood pressure (heart and all organs check out fine), sinus and a stealth infectious component--all related--have steadily done so many hideous deeds.
COMMUNITY LEADER
Helicopter driving?...really?...lmao I 've never been in one let alone drove one....???
Ahh yes pruning well it is the straining u do, in a diff way, but it is still a strain to do and hold ur arms up...ouch
Few question, why not sleeping in head down? Do
u mean face down?
And y can't we use hair salon hair wash sinks? Y
can't we bend head back?
Also in regards to the other board u said no Hoover... Can we seriously not Hoover?
What is it about neck or headmovements that is bad?
u mean face down?
And y can't we use hair salon hair wash sinks? Y
can't we bend head back?
Also in regards to the other board u said no Hoover... Can we seriously not Hoover?
What is it about neck or headmovements that is bad?
We were on our way to the NL in january, when the light filtering through the trees starting making me feel sick, weird, disoriented. I never had a seizure, but it felt like i was going to. I couldn't even focus on the NL, had to keep my eyes closed, although I could talk to him. (he said he couldnt help me)
When I got home, I googled for the symptoms & found flicker vertigo, discovered when helicopter pilots crashed them because of the sunlight flashing through the rotors. Some people are sickened or disoriented by strobe lights, or even fluorescent lights.
I don't know why head position is crucial, but it definitely seems to be!
When I got home, I googled for the symptoms & found flicker vertigo, discovered when helicopter pilots crashed them because of the sunlight flashing through the rotors. Some people are sickened or disoriented by strobe lights, or even fluorescent lights.
I don't know why head position is crucial, but it definitely seems to be!
COMMUNITY LEADER
Head down means with ur neck bent so ur chin is close to ur chest...this can cause pulling, and symptoms to flare. Even cut off CSF flow depending on what all is going on inside...so, I am sure this is y that is suggested.
It is listed here as no vaccumming, that is the same as u saying Hoovering....yup, it is pushing and pulling, u strain to do so.
No hair dresser sinks bcuz it puts strain on ur neck, the support is not good, and we also will struggle to hold ourselves up a certain way causing more pain....I knew these sinks were an issue for me yrs b4 I got my dx and this list....
When u have limited space in ur neck, bending it makes the space even smaller so u r compressing all that is inside.That is the only way I know to explain that one on bending.
COMMUNITY LEADER
Oh ok...so u do not mean u were in a helicopter but the effects similar...gotcha now...
I know what u mean, and strobe lights, and florescent lights in particular make me sick....I can not stand them....I avoid going into stores bcuz that is all they have...and I worked in one for over 15 yrs...and now the Gov is mandating all light bulbs be florescent....I keep telling my DH to buy all the incandescent bulbs he can.
I found when riding in the car it is best to have the seat reclined but then to have a big fluffy pillow so I am still up right, but the pillow helps hold my head from bouncing around....and depending on the light I close my eyes.
I always were sun glasses and many times I have a hat on, as the sun peeks in over the top of the glasses and the brim on a hat prevents that.
Refresh me, have u had decompression surgery?
So we are banned from doing these or can i still Hoover my house? I've never had a problem
COMMUNITY LEADER
U r not banned, it is suggested to avoid as many of us do have an issue, with the pushing this involves the shoulders and arms, which affect the neck....if this causes u no ill effects u may be able to continue...the big thing is to listen to ur body.
My concern is, those with severe nerve impingement may not have pain when doing things that cause more damage....do u know, do u have a syrinx? Or something that may be causing nerve compression?
Oh I get pain when doing stuff, but I know when to stop and to go slowly, always go slow now adays, even before diagnosis, I learnt fast and hard = headpain. Still trying to get in to docs for referral to chiari specialist to sort out CINE and full spine mri to rule out blocked and syrinx yet, I think maybe got both, as get back pain ( but could be weight related )
COMMUNITY LEADER
When in doubt...avoid what u can...wait till u get an official word from a specialist....but u know ur body...just take it easy : )
Use the list as a guide.
I had a cervical laminectomy in 2002. I knew not to sustain looking up-- my spinal cord was kinked, just like a hose gets--but this recent downturn was due to sustained looking down. I was happily hacking away at a backyard jungle. Which was foolish, in retrospect.
I remember being warned a long time ago, by a friend also mis- Dx'd w/CFS who later had Chiari, to be very careful to myself, because there wasn't much known about spinal/brain stem compression and what it could do. Indeed.
I remember being warned a long time ago, by a friend also mis- Dx'd w/CFS who later had Chiari, to be very careful to myself, because there wasn't much known about spinal/brain stem compression and what it could do. Indeed.
COMMUNITY LEADER
Yeah that type of work is not for us, and looking up or down is not great either way it makes a narrow area smaller...think about it, if u have a straight straw and try to bend it to drink from it is more diff to get the drink thru the straw and u have to draw harder on the straw...now put something inside the straw no matter which way u bed the straw the best position to get fluid to travel thru it is straight.
Right i am officially being driven insane with all this Chiari stuff..
I have been diagnosed with it and told the only fix is surgery. i dont know if this is normal but my doctor really doesnt seem to give a crap.. excuse my language..
Does anyone else herew experience a REALLY bad short term memory? also this is a new symptom for me and it may sound weird and it is most likely the alcohol or stress.. but only recently when i drink i have NO memory of the night before..
This condition really scares me and i feel the only people who understand me are those going through it.. PLEASE reply to me..
I have been diagnosed with it and told the only fix is surgery. i dont know if this is normal but my doctor really doesnt seem to give a crap.. excuse my language..
Does anyone else herew experience a REALLY bad short term memory? also this is a new symptom for me and it may sound weird and it is most likely the alcohol or stress.. but only recently when i drink i have NO memory of the night before..
This condition really scares me and i feel the only people who understand me are those going through it.. PLEASE reply to me..
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I too have short term memory issues, and I do not drink so I do not know how that might affect it, so if u find that it is affecting u that much u may want to rethink drinking or drinking less...
All of us have found that until u get the right Dr,m a true chiari specialist u may not get the best care....
Did ur Dr do a CINE MRI to check u for a CSF obstruction? DO u have a syrinx?....these along with symptoms would be reasons for surgery....
And unless ur Dr gave u these reasons and rules out related issues like ehlers-danlos , PTC, disk issues, sleep apnea, tethered cord...u may be moving too fast.
Also know surgery is not a cure or a fix and there r risks involved.,
Educate urself and do reserch b4 u decide on nething.
Thank you very much..
Okay thank you for that. I just feel like i havent been told much its all so new to me. My neurologist that i have seen once specialises in this condition and is keeping an eye on me.
My doctor and non specialist neurologist treated me as if it is nothing when they dont reaslly know. I actually had a letter telling me that this is neither major or minor so i thought iu was going to see the specialist and just get some painkillers so it came as a massive shock to me when he actually explained the malformation to me..
I dont really know what any of that meant.. i have a descent of 8-9 mms that is all that i know..
He said there is no reason for him to HAVE to do the surgery but he would be more than happy to do it should i want it.. because of my age and how the headaches affect me.. i struggle to concentrate on anything and i am at the start of my career so it is reallt disruptive.. I have had a MRI and i am going back for another one with the specialist in september to determine the fluid..
I have done so much research i have folders of it but everytime i read it i just cry or get stressed which makes the headaches worse.
Did you or anyone on here experience risks from the surgery?
I am struggling to find statistics on the risks involved so if you could help with this also that would be great!!
Okay thank you for that. I just feel like i havent been told much its all so new to me. My neurologist that i have seen once specialises in this condition and is keeping an eye on me.
My doctor and non specialist neurologist treated me as if it is nothing when they dont reaslly know. I actually had a letter telling me that this is neither major or minor so i thought iu was going to see the specialist and just get some painkillers so it came as a massive shock to me when he actually explained the malformation to me..
I dont really know what any of that meant.. i have a descent of 8-9 mms that is all that i know..
He said there is no reason for him to HAVE to do the surgery but he would be more than happy to do it should i want it.. because of my age and how the headaches affect me.. i struggle to concentrate on anything and i am at the start of my career so it is reallt disruptive.. I have had a MRI and i am going back for another one with the specialist in september to determine the fluid..
I have done so much research i have folders of it but everytime i read it i just cry or get stressed which makes the headaches worse.
Did you or anyone on here experience risks from the surgery?
I am struggling to find statistics on the risks involved so if you could help with this also that would be great!!
1st I want to say your not alone. You are a lot younger than I was when I was dx'd, I was 48 and had surgery, the issue I had was CSF leaks due to a issue with my body tissue. Everyone is different in recovery, but your age of being younger is a plus for you because younger tend to heal easier. I still remember the day I heard the word Chairi and it was scary to me so I know all of us who have been dx'd can relate. We are here for you and understand. If I can help at all please let me know. I have went through this journey, yet a hard one for me because of my recovery, but I have no regrets. I do feel better today than I did 2 yrs ago, and I once again do some of the activities that I did before surgery, yet in different ways. When we are dx'd with Chairi with or without surgery we always will have it and there are things we need to avoid. I had a couple of NS tell me the exact thing your Dr. told you and it is discouraging, but it is a choice. Only you know how you feel and it is a majoy surgery. It's good that you are doing research infor is the best way to make your decision. I dediced to have my surery when the NS asked me if I was living the life I wanted because my syptoms were not going to get better, so my family and I decided what was best for us. Listen to your heart and your body, and you will know what is best for you. I wish you the best in your decison, but know you are not alone. We are here to support you.
Linda :)
Linda :)
Thank you for replying. yes my neurologist is concerned with my age wich is why he is happy to do the surgery should i decide that i want it.
Yeah i was scared when i realised what it was when i saw the specialist..
I am due to have another scan to see how much CSF is there so i know whether i have to have the surgery..
Did you recover well from the surgery?
All of my family want me to go ahead but i dont think they realise the risks.. also they dont understand the pain i am going though.. it does fully affect my life and restrict me from a lot of things.. even if you dont have the surgery there is still alot you shouldnt do isnt there~? it doesnt help that i go out partying alot and i lift alot of heavy things on the regular.. i am also very very clumsy so fall over alot. I just feel like regardless i am always going to have to be careful because of Chiari and its just horrible.
I was so shocked when i was diagnosed with it.
I do sometimes and i havent told my doctor this because i am embarrassed but for like as long as i can remember i get hallucinations.. they are hard to explain but it feels like i am having a out of bodyexperience like i feel like im watching myselkf from the outside and i cant physically move whilst im experiencing this.. i do not know if this is Chiari related?
Thank you very much for your supportit means so much x
Yeah i was scared when i realised what it was when i saw the specialist..
I am due to have another scan to see how much CSF is there so i know whether i have to have the surgery..
Did you recover well from the surgery?
All of my family want me to go ahead but i dont think they realise the risks.. also they dont understand the pain i am going though.. it does fully affect my life and restrict me from a lot of things.. even if you dont have the surgery there is still alot you shouldnt do isnt there~? it doesnt help that i go out partying alot and i lift alot of heavy things on the regular.. i am also very very clumsy so fall over alot. I just feel like regardless i am always going to have to be careful because of Chiari and its just horrible.
I was so shocked when i was diagnosed with it.
I do sometimes and i havent told my doctor this because i am embarrassed but for like as long as i can remember i get hallucinations.. they are hard to explain but it feels like i am having a out of bodyexperience like i feel like im watching myselkf from the outside and i cant physically move whilst im experiencing this.. i do not know if this is Chiari related?
Thank you very much for your supportit means so much x
COMMUNITY LEADER
Hi as Linny mentioned we r all diff and I did not have a leak or infection post op, but still do not drive , or work....
U do need to understand this is life altering, what u do now, u may not be able to do going forward....some r able to go back and work and drive and live a "normal" life....unfortunately those r the ones that do not come back ans share how they feel...so we have no idea how they r doing.....
I really feel this is something that takes a while to recovery from, not 4 to 6 weeks like some say....I feel if u rush it, u can have set backs...and to go slowly u will feel better in the long run.....
We all need to have patience, and accept this is how it is....and go from there. There is no way to know how ur body will respond to the surgery, meds etc....
SO, to make sure u heal well make sure all related issues r ruled out and treated and dealt with so it is not affecting ur recovery post op if u choose surgery.
3 Comments
Did you have a plate in with your infection I had a plate in put in and my body rejected it they took the plate out I still have not got played in and that's been since September of 2017 I'm just wondering how long do I go without a plate it's a long story but the doctors are not even calling me back now I have wrecked my car a week ago and the back of my head I don't even have nothing covering but a skin flap I know this can't be right can someone help me
And I do apologize for just stepping in but yeah but this is the first time I've seen this and I really need some advice I need to get a second opinion cuz when I go to any or they don't even call my neurologist please help and I do apologize again I'm just desperate
Hi, I did reply to your other post, I hope it helps answer your questions.
Thank you for this.. was your work physical work.. is that why you couldnt go back?
I am only 18 so i wouldnt want to not be able to go back to my job (i am on an apprenticeship so i am just starting out)
I know it is so difficult to make a decision when you have no idea what could happen.
I am only 18 so i wouldnt want to not be able to go back to my job (i am on an apprenticeship so i am just starting out)
I know it is so difficult to make a decision when you have no idea what could happen.
COMMUNITY LEADER
Well I was not released to drive as I still have other related issues that have yet to be treated and my Drs do not want me to drive and it is those conditions that keep me from working as well as my work itself....I was working 70 plus hrs a week, and it could get physical I was a manager in a retail store with a lot of responsibility and stress....
What type of job is it u r apprenticing for?
oh ok.. he's also advised me not to drive long distances now because of additional symptoms..
well i currently havr two jobs.. one is my apprenticeship which is for quantity surveying and the other being a weekend job just so i can pay off the debt i got myself into.. including commuting time (i work in london) i do about 80+ hours a week. However obviously if i have the op i wont work two jobs..
well i currently havr two jobs.. one is my apprenticeship which is for quantity surveying and the other being a weekend job just so i can pay off the debt i got myself into.. including commuting time (i work in london) i do about 80+ hours a week. However obviously if i have the op i wont work two jobs..
COMMUNITY LEADER
The thing is u have to listen to ur body as to what u can and can not do, or what is too much as u will feel it later for sure......
Being young I am sure u have much more energy and at that age I had chiari too, just did not know, and I worked and did things too, only diff is, u r dx and u do know...so do listen to ur Dr and ur body.
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