What you describe is most likely related to Chiari. I could not remember the link for this so I copied it from my PC. Take care.
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 your 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 fibre 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 herniated 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.
Shortest list- Reduce/eliminate neck stress in daily activities to include sleeping.
1. Wear highly cushioned, support shoes to reduce neck, cerebellum pounding. Commercial cross-trainer sneakers are recommended - New Balance, Nike, Reebok etc. - test before buying.
2. Avoid neck-stressing activities (football, soccer, basketball, wave pools, diving, tennis, roller coasters, other amusement park rides of high G forces, lifting in excess of 15 lb, backpacking, falling asleep in chairs, extended reading with head bent etc.)
3. Get plenty of rest and sleep (eight hr minimum). Pillows and sleep position are very important. Soft, small pillows with fibrefill are very good for this i.e. little or no “push" back. (See expanded list below for other comments about pillows). Most Chiarians are side-sensitive. Use a large pillow(s) etc. to prevent rollover onto affected side. Elevate your bed at the head 4-6 inches by inserting old telephone books, bricks, boards or blocks under the front frame legs. Have a strong relative or friend assist you. If possible, do the same when staying at a hotel/motel or at the home of relatives." Stop eating and drinking three to four hours before bedtime to reduce the need to get up at night.
4. Avoid caffeine, alcohol, aspirin and/or high salt diet if tinnitus is a major symptom or any of these dietary items increase other symptoms.
5. Stay in excellent physical condition via walking, exercise bikes and other non-neck stressing activities - STAY LEAN
6. Sit in soft recliners with high backs and footrests.
7. Support reading material with elbows on your knees/thighs or chair arms. Read "straight" ahead. Use book holders or music stands. Look at computer monitors straight ahead.
8. Drive if you have to but use wide vision mirrors and get seats with high backs. -Take your time and limit your driving to short distances at slow speed preferably during the day. Some Chiarians find orthopaedic collars help reduce neck stress when riding in a car etc. Some do not.
9. Relax and avoid stress and noise. Don't tighten the neck muscles. Stay "cool".
10. Put soft cold compresses on the neck/ brain joint area or on the top of your head for about an hour while lying down (these are soft compresses). Some Chiarians prefer warm compresses.
11. Straining during bowel movements should be avoided. Eat plenty of roughage and eat at regular times. Drinking herbal tea containing senna may help give pain-free relief from constipation.
12. Heavy jewellery, scarves, ties, tight collars, bras, rings, bracelets and watches might feel uncomfortable. Adopt a casual life style and don't wear them.
13. Try to avoid waiting in lines where stutter stepping is involved. Uneven surfaces or checkered designs in floors maybe difficult to walk on. Focusing on an object in front of your or closing one eye may help when dizziness hits.
14. Do crossword puzzles to assist short- term memory retention. Ditto for playing cards.
15. Take calcium supplements to assist in bone enhancement especially after surgery. Be very cautious using vitamins and supplements- most have not been thoroughly tested for primary and side effects. As always, check with your doctor first.
16. TENS machines may help ACM/SM patients, especially those with spasticity (cervical, thoracic, lumbar muscles) and spinal pain. TENS units also can help with headaches. You can buy one for use at home. As always, check with your doctor first.
17. Avoid cervical traction.
18. Lumbar punctures, spinal taps or epidurals can be dangerous for Chiarians. Always ask your doctor and insist they review the literature on these procedures with respect to increasing herniation.
19. Brushing teeth or gargling can result in sneezing. Minimize head motion during brushing and not bending the neck when gargling.
20. Avoid chiropractor adjustment. Most chiropractors have no experience in treating ACM's. One member's herniation significantly increased after cervical adjustment. "That is because I herniated from 3-4 mm to 15-20 mm in 8 months with this treatment (documented on MRIs)".
21. Review daily movements to include cooking and cleaning. Eliminate as much neck stress as possible. See the items on the expanded list below for some helpful hints.
22. Use the special tray that most beauty shops have for washing hair for people who cannot lean back on blunt sink rims. Chiarians should never lean back on the edges of sinks.
Hi i had surgery in aug 2011 and i had and have all those symptoms all on my left side. Exact same thing. Shoulderblade and all. When holding the phone. I mean you just explained me totally. Yes it is chiari related. I just dont know why i still have it after surgery?! Tho i have ocipital nerve damage, thats probly why
That was awesome. Such a great summary. I thank you so much for that detailed compacted list. I'm printing it out.
Such great support on here. Again thanks to all of you.
Did you have the decompression surgery?? Im very active, this is rather inconvenient. hahaha
Yes i had decompression this past aug. I also have headaches everyday. Bad one maybe once every week or 2
I used to get very bad migraines, maybe twice a month. it was awful going to school because the headaches were so often. It got to the point where my teachers thought i was lying. im afraid. up until this point i was joining the military. and now its basically looking like thats not going to happen.