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620923 tn?1452915648

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
60 Responses
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620923 tn?1452915648
COMMUNITY LEADER
Bumping up for September Awareness month 2018
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Avatar universal
Any suggestions on keeping a 3-4 year old from most of these activities?
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1 Comments
it is the contact sports you need to be worried about for a child that age.....being tackled....they tend to avoid what makes them feel poorly, I know as a child I avoided things that I determined I just didn't like but as I got older and got my DX I realized why I didn't like those activities.....unless or until a Dr says there is a concern for what activities your  child should avoid....just try to have them avoid the tackles...etc....

Good luck.
Avatar universal
Has anyone used kinesio tape? Is that safe for chiari?
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1 Comments
Hi and welcome to the Chiari forum.
Not sure where you would put it.....
Avatar universal
How about shooting pool?
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1 Comments
Wrong post sorry . Asking if shooting pool is ok with chari 1
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

Let me ask you a few questions....first, what was done during your first surgery, laminectomy, dura plasty? If dura plasty what type of patch was used? And were ALL related conditions ruled out before surgery?
Why did you require two more surgeries?What was done in each?
And lastly, did they offer the option of a stand up MRI? Ask and see if this is possible in your area....unfortunately not all of us have this option near us, but do ask.
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4 Comments
First surgery I had was dura plasty patch and I'm unsure of the type
. Some kind of mesh I think titanium.. the second surgery was to repair the ripped mesh and to relieve the bleeding in the brain.. and the third surgery was because I had an allergic complication to the surgical glue.. my body after few weeks started to reject it .. pushing all of it out and not allowing the incision to heal causing bacterial meningitis .. I then needed a third surgery to clean out infection.. cut away dead tissue and reapply a new patch and to close the incision
The titanium  mesh is used to help hold the cerebral tonsils in place but is not used to seal the dura, another patch would have been used such as bovine, cadaver, synthetic or tissues harvested from you.....if you were rejecting the glue, I wonder if you are also rejecting your patch? AND if you have EDS....those with EDS tend to have these types of reactions and is why Chiari specialists will harvest tissue from the patient to help prevent this issue.....
Was the patch torn or the mesh?
The mesh was torn and cause bleeding is the way it was explained to me .. I will ask my Neurosurgeon.. his office called to say that I have a MRI with complete sedation scheduled for the​ 11th....so fingers crossed.. what is ED
EDS is Ehlers-Danlos Syndrome and is a related condition to Chiari, there are some Drs that feel it is the EDS that causes us to have Chiari...it is a connective tissue disorder which has several types one being hypermobility..some refer to it as being double jointed...but EDS can also cause us to bruise easily, be slow to heal, resistant to local anesthetics, (such as novicane) and some pain meds do not work how they should and sometimes work opposite as they were intended...
I am surprised as I wasn't aware titanium mesh could tear.....
Fingers crossed for you...if this doesn't work, ask about the upright MRI.
Avatar universal
Hello I'm new to the forum.. I have had headaches my whole life.. was told that I suffered from a form of migraines called cluster headaches.. I never seem to feel any relief.. as the years passed my headaches and symptoms of not being able to bend over, blacking out when laughing or coughing, hoarse throat and neck pain became worse at the end of last Oct. they had become so bad I lost my job became almost bedridden.. I went to a neurologist and he then diagnosed me with Chairi Malformation ... He told me after looking at the MRI he won't be able to treat me I had to see a Neurosurgeon asap.. so within weeks I was in the Neurosurgeon office and he was explaining the​ condition and that I needed surgery asap.. so I was scheduled for surgery Nov 30.. since then I have had to have 2 more surgeries and finally a few months after this last surgery in February.. I started to think I and feel like I might be finally on the path to recovery.. but then as April was ending my symptoms returned ..the whole left side of my skull is numb, I have pins and needles in both feet and calf's..,if I stand in place (like to cook dinner) for more than 5mins my ankles and feet swell turn blue and black, I now have tingling in my arms and my two little fingers are numb, I get a shooting pain from my elbow to my chest, I have almost no voice.. then all of a sudden I get this sharp stabbing jab of instant pain then it's gone in my head but after that it feels like the liquid in my head is lava. I called my Neurosurgeon and his nurse said that he needed me to get an MRI so I scheduled one .. I went to get it and during the MRI my pain became so bad I could no longer lay in that position .. making it impossible to complete scan. So that Monday I call back to the Neurosurgeon office and was told by his nurse that he said I have to have the MRI for him to be able to do anything and that he was debating on how he wanted to proceed in getting me sedated to get it done..so his said she would be calling me back with the details.. it's been two weeks and I can't seem to get him or her on the phone.. I keep leaving messages with no response.. I don't know what to do
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Avatar universal
Hi, I had a lumbar puncture that suggests I have ms in 2015 but I have been having nerve damage with ataxia gate so they did mri and found chiari malformation 1 I have been having a lot random attacks that simulate strokes that gets worse each time Dr is sending me to a neuro surgeon how will they know if my problemschedule are from Ms or chiari in deciding surgery or not
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1 Comments
Hi and welcome to the Chiari forum.

I know symptoms for both MS and Chiari are the same....so it could be difficult to determine which condition they come from, but they can look to see how much CSF is being obstructed due to Chiari and open up that space to help keep things flowing and that should also reduce symptoms due to that issue.
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

When did you get your Chiari DX? AND do you have any other related conditions?
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Since Chiari is a congenital condition and we have had it since birth, we also have had symptoms since birth and may not be aware of them as we consider how we feel to be "normal" however it is not normal, but it is OUR "normal"....so not until symptoms increase or worsen do we take notice and even consider that we have symptoms.....

Have you had any other testing? Were related conditions ruled out?

Typically meds do not help with the symptoms of Chiari....if they do the relief is short lived.....

You may want to see a neuosurgeon (NS) as they are more informed on Chiari and related conditions....but make sure it is a true Chiari specialist ...other NL and NS's tend to look for other reasons for the symptoms and most do not believe it is the Chiari causing them....

Not everyone with Chiari will need surgery, but if you are not feeling well...you will want a Dr that is well informed and experienced. If you need a list of Drs to research let us know.
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2 Comments
I would love to have a list of doctors in Canada. Ontario specifically if you have any suggestions.  I have been brushed off by everyone I have seen. I had my first and only seizure a couple of weeks ago and was told, "you cant possibly have seizures on top of everything else." So i was dismissed again. Would love to see a doctor that has some idea of what might be going on inside my head. Any help would be greatly appreciated.
Kim
Hi and welcome to the Chiari forum.

We have a ist compiled by our members here of Drs they have been to, treated by and liked.....the list is not a  referral nor an endorsement of those listed.....

It is possible to have seizures along with Chiari....I know a few that have had them prior to decompression surgery and a few that  developed them post op.

https://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605

Keep in mind you may have to travel....I have no idea how close any of the Drs listed are to the area you mentioned.
Avatar universal
I was diagnosed 4 yrs ago with Chiari. I really didn't have symptoms except little headaches in the back of my head until 3 months ago. I have had so many symptoms. Ear pain, dizziness, migraines so bad I thought my head was going to pop. I had a cat scan showing nothing and then an MRI of head and neck where they found 3 bulging discs in C-4 to C-6. I feel like it's getting worse and my neurologist put me on meds for seizures and supposedly decrease the pressure. Well the meds work a sometimes they don't. I have never felt so bad in my life. I get depressed and feel like I am not getting anywhere. I'm going for a 2nd opinion tomorrow to see another neurologist. My 1st one set me off when she said see me again in 6 mths. 6 months! I can't live like this one more day. My quality of life is slowly going. I have always been a strong person but I try to not let it rule me. I am so sorry for everyone of you who have this.If there is no other meds I  ready to go under the knife.
Helpful - 0
2 Comments
How about shooting pool?
Shooting pool would have been difficult for me before surgery and a few years post op.....but I feel I could do it now.....we are all different and how we are affected not only by the condition but also how we are affected by the surgery and how long it takes us to recover.
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Are you asking if you have Chiari can you have your tongue pierced?

If so, I would look into a related condition EDS before as it can cause you to heal slower and could cause issues with a piercing inside the mouth....
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  No salt as it does add to inflammation and we have less room already due to the herniation....so adding salt may cause even  more tightness and less room for the CSF to flow.
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Avatar universal
Can you get your tongue pierced w it?
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Avatar universal
AVOID food with too much salt.Especially for woman during their premenstrual period.

Can I ask why Salt? My sister has high blood pressure and high potassium, could high salt intake be related to this do you think?
Helpful - 0
1 Comments
Absolutely it's poor diet. Stop eating out, read labels, avoid high salt foods as well as high potassium  foods. Shopping at a grocery store only buy from the outside isles, everything else that is processed is full of salt. There are salt substitutes, herbs, lemon juice, lots of options just takes a conscious effort,   good luck
Avatar universal
I have been diagnosed with chiari nalformation since 2012 and my symptoms were terrible, I had brain freeze, tingling crawling sensation and numbness, combing my hair and washing my face was a task and still is, I refuse surgery because they would have to remove the three top vertebrae to place a shunt.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Listen  to your body....if it hurts..stop more often while doing an activity....

For me, I started to have a loss of upper body strength and it got more difficult to do certain things....

Keep a journal to help you see if there is a decrease in what you can lift b4 you have pain etc.....

We are all different in what they are able to do....and a list like above is a basic guide line...

Anything that causes us to strain will cause more pain.
Helpful - 0
15806082 tn?1443203014
If I list these things to my mom she'll  think I'm 'trying to get out of work' like I 'usually' do. And showing her the  post won't help, she doesn't trust the internet. What should I do to be the absolute safest while still participating  in some of the activities, for example, lifting things, vacuuming??
Helpful - 0
1 Comments
if you do whatever you want to do, it has to be with caution. I am one to go above the things not to do and just take it as far as i can go without hurting me too much. I made a booboo and did too much. That is a no no as well. Listening to your own body is the best thing we can do.
620923 tn?1452915648
COMMUNITY LEADER

  The above list was given by Chiari Drs and this is Pre surgery...some need to follow some of it post op too...as many of us have other conditions in addition to Chiari....and the best thing any of us can do is listen to our own bodies as to what it can handle with out a flare of symptoms.
Helpful - 0
Avatar universal
Couldn't  agree any more.

Also ......
NO blaming every ache, pain, twitch, memory lapse, etc etc etc on chiari.
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Avatar universal
This is an absolutely ridiculous list.Seriously??
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Avatar universal
Personally I think this list is way overboard.  I had surgery at 16 years old.  Since then I've been certified in scuba, play soccer, practice Krav Maga, and lift weights regularly.  I also backpack for a few hours wearing a 45# pack 2-4 times per week.  12 years of these activities and I feel great!

Obviously everyone has their own set of symptoms and sensitivities, but I would like to append this post with a few more warnings:

NO following the advice of untrained professionals over the advice of your physicians and surgeons

NO living in fear of hitting your neck to the point you're afraid of "straining to reach something"

NO letting the fear faced by others limit your opportunities in life.  After all, most of us have already faced the potential loss of life when we had our surgery...we should know how precious life is and how important it is to appreciate every moment.  


The only advice in this post that warrants consideration is to avoid stressful relationships and situations.  Stress is going to do a lot more damage to your body and mind than "falling asleep in chairs."  
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620923 tn?1452915648
COMMUNITY LEADER

Hi and welcome to the Chiari forum.

This is an older thread and the member you addressed your comment to,, has not been active lately....you can send a PM (private message) which will generate an e-mail indicating someone is trying to connect.

Her CSF leak was post op after the posterior fossa decompression surgery for Chiari.....many of us do have connective tissue disorders as well as auto immune disorders, I am not sure if you have Chiari as well as your auto immune issues as well as your CSF leak.

Did you have a MRI of the cervical spine?
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Avatar universal
Hello! I was reading your post and noticed that you have a CSF leak...I was diagnosed with Chiari in June 2 days later in surgery to reduce pressure (they thought it was hydrocephalus turned out to be csf leak). 2 bloodpatches both worked for a bit...I was a big exerciser yoga instructor, zumba, paddle...frustrating not to have my go to "mood helpers". Being tested at Johns Hopkins were at least the DR said my symptoms did not sound strange to her (I cried). I was also diagnosed with RA...keep wondering if there is some connection between auto immune and csf  ...memory, sleep, pain, vision and hearing issues...I am learning so much throughout this ordeal but still would like some normality...as I am sure we all do..
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Avatar universal
I assumed that it was both, but mostly afterwards.
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