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Chiari Malformation Community
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Avatar universal

how do you handle pain on bad days?

Hi,

I was diagnosed with chiari 2 1/2 years ago (with a small syrinx) and things have pretty much gone downhill from there. In the last few months, I was diagnosed with POTS and Ehlers-Danlos as well. I also have extremely bad TMJ. I am in an inordinate amount of pain several days of the week and my questions at this point are how to try and manage the pain until I can get in with Dr. Heffez (I sent him all of my stuff already). I have been against the idea of surgery pretty much since I've been diagnosed and now I've gotten so desperate that I would have the surgery tomorrow if I could.

So how do you manage the pain on bad days? I've been rotating between percocet, maxalt, and fioricet so that I don't build up a tolerance (and I take them as little as possible). I always have my heating pad on and on the right side of my head/neck (and sometimes literally on my face because of the build up of pressure). I have a pretty high pain tolerance but lately I've been waking myself up sleeping from moaning :( not good. Desperate of some more ideas...
4 Responses
Avatar universal
I'm not familiar with what you're taking except for the percocet. I just recently was put on Tramadol(pain reliever) and Flexeril(muscle relaxant). Tramadol gives me a very bad headache so I have to take three advil(600 mg) & with all that it has been helping my back of the head & neck pain that goes into my shoulder and down my arm as well as wraps around shoulder blade and chest area on my right side. Sorry you are suffering so much. I hope you find relief soon.
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Listen to your body as certain activities can make symptoms flare.....meds, can seem to help but should you prove to be a surgical candidate the meds you take b4 surgery can  affect their effectiveness post op....so it is not wise to be on strong meds b4 surgery as most do not help or they lessen the possible help or benefits when surgery is done.

We do have a list of activities to void I will post  below.

But soak in a warm bath relax with soft light and music...what ever works for you. Keep a journal of what you are doing daily to see what could be triggering your flares.

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.

-If surgery is suggested, asked which type they do, and why.....ie- endoscopy, bony decompression, or PFD w/duraplasty and what kind of patch is used.


-after surgery, how often will you be seen by the dr for follow up visits, MRI's ect..

-is everyone in the OR covered by your insurance, ask for their names and contact( check this with your insurance comp)

-if you traveled to your NS, how long after you are released from the hospital, does he need you to stay in the area.


-when scheduling surgery, ask about local "houses" that you and your family can stay at lower rates.
ie- WI- Kathy's House- see our links page for more info.
TCI in NY has Variety House- see links page for more info

-will the Dr check you for related conditions like tethered cord, syringomyelia(syrinx) or Ehlers-Danlos (rejection issues)

-what % of benefits does the Dr feel you should get from having surgery

-if you are not a surgical candidate at this time, ask what treatment options are available, Pain Management, meds, ect...and how often you will be monitored, via a visit or MRI.

-ask if the NS can refer you to a good Neurologist in your area that understands chiari.
Avatar universal
Thanks, the list is really helpful!
620923 tn?1452915648
COMMUNITY LEADER

  Glad  you find it helpful : )
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