36 female just had chiari malformation surgery

[Chris0819]

These answers has helped me also. I just had the surgery August 4, 2016 it has been 4 weeks now and I know I have a while to go before Im healed and functioning right. It is very stressful. And Im glad to see someone mentioned stress. Im trying my best not to stress bc I know it want help. But Im so tired of the throbbing pain in the back of my head. Does it suppose to feel like my heartbeat/rate is changing some times? Will it really take 6 months or longer for the pain to go away? Does walking help? The only thing to help me sometimes is laying down because I have found out after standing up for a certain amount of time makes my head hurt and makes me dizzy, and also messes with my vision a little, is this normal? Then is it normal not to have energy?

[selmaS]

  There are activities you can avoid to help lessen the severity of headaches.....

Activities to avoid with Chiari...

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.


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.

[AKRawlings]

Is this list of don'ts forever after a decompression surgery also?

[Chris0819]

Oh ok. Thank you for your reply and words. Much appreciated. Really enjoyed this group.

[Chris0819]

Is there something I can do to help with the headaches.

[selmaS]

  My Dr told me not to drive since I had drop attacks and he felt they may continue  with driving  with the way I would need to turn my head as I also have CCI and RO...and was told I would need a fusion....but I never went for the fusion

I also have had difficulties with my depth perception which can pose a problem while driving. and lastly I get weird vision disturbances randomly....another reason not to be behind the wheel.

I did a lot of walking and was doing neck exercises before I left the hospital.... I really feel those exercises helped me put off the fusion surgery my Dr felt I would need.....

Staying positive and moving forward slow but steady is the best way  

[selmaS]

It really depends on you....I never went back to driving.

Others have gone back after a few months, weeks...

Do you have any other Dr visits planned? I had a 6 week, 6 month and a 1 year follow up visit.

[Chris0819]

U never drove again? Why is that? I go back to the dr in a month. They want me to do therapy for my neck. But overall I just been resting and I just started walking a short distance the other day. But I really think the key is staying positive and trying to stay stress free and prayed up.

[selmaS]

  Hi Chris and welcome to the Chiari forum,

If you are getting dizzy after standing for a while call your Dr and let him/her know. It is possible something else may be underlying causing this.

Same with the pain with standing....do let your Dr know.

Have you had your stitches out and what did your Dr say at that visit?

When do you go back for a MRI?

[Chris0819]

Oh yes my staples are out and Dr said everything looked good it healed fined

[Chris0819]

I already has my follow up mri and they said everything looked good and fluid was flowing like it was suppose to. They told me do to the fact I had quite a bit of bone removed I will be in pain. They say everything is just part of the healing process. It's getting better with time. Today I did take my 1st short walk outside. But my balance isn't how it was at 1st. But all of this is new to me and can be scary at times. But I tell everyone you just gotta stay prayed up and continue to have faith. But how soon after surgery does it usually take before you can start driving again?