TIPS FOR LIVING WITH SM/CM

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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby sylvester » Sun Feb 15, 2009 2:01 pm

Another suggestion for the nausea -- car sickness -- is sea bands. My PCP actually suggested them for the almost daily nausea I have, and the drugs all have side effects that don't play well with my other meds. Most drug stores sell them (I got mine at Walgreen's) and they work on a principle of accupressure. Usually sold as a remedy for seasickness they are an elastic band with a plastic "bump" that contacts the pressure point on the wrist. I haven't tried it in the car yet, but it works at home to relieve the nausea that pops up without warning or reason. "Sea band" is the actual name of the product. And no side effects!
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tnglitter » Sun Feb 15, 2009 2:42 pm

sylvester wrote:Another suggestion for the nausea -- car sickness -- is sea bands.


Wow! Never, ever heard of this! Has someone tried sea bands in an auto for motion sickness? Do they work? I've got a few family members that might even benefit from this.

Rhonda
T Spine SM T8-T12 (9 mm) Syringopleural Shunt & Laminectomy T10/T11 5 Jan 09
C spine Disc bulges/canal narrowing/DDD
L spine Spondylosis/DDD

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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tnglitter » Sun Feb 15, 2009 2:45 pm

tattoodlb1 wrote:I have found excellent relief with a cigarette adapter plug in massage seat with heat.....


I never would have thought of this - great idea!

Rhonda
T Spine SM T8-T12 (9 mm) Syringopleural Shunt & Laminectomy T10/T11 5 Jan 09
C spine Disc bulges/canal narrowing/DDD
L spine Spondylosis/DDD

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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby mindriot » Sun Feb 15, 2009 4:53 pm

yeah for my nausea i formerly used marijuana and have also used a lot of Dramamine... which just makes me fall asleep. i will check into these sea beads.

one thing that i have is a heat-up pad for the microwave... it has some kind of beads in there and it lasts for a good long time. it is shaped like an exaggerated "U" and velcros at the neck and hangs down on the cape-part of shoulders. very soothing.


for major pound my head into the wall headaches, i use an ice pack on my eye area and the heat pack on my neck/shoulders. seems to work the best for me.

anyone else do that?
i am not my illness, i will rise above.

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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tlserenity » Sun Feb 15, 2009 6:07 pm

Yes - I love the ice pac for the head aches!! I have 3 different sizes ranging from eye patches to almost 8x10 in my freezer.

I heard of an ice pac that stays cold for 18 hours??? has anyone heard of this???

I have been looking for my heating pad though - and after 6 wks of having everyone look for it - i have decided that someone took it! I think i am going to have to break down and get a new one.
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby lovemygirls2 » Sun Feb 15, 2009 11:11 pm

The tips were great! I have a question- the DON'ts that were listed....are those for before surgery for CM or after or BOTH?? I had decompression surgery October 08- I am feeling much better! But, just wondering if those don't still apply to me post surgery!
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tnglitter » Mon Feb 16, 2009 1:43 am

lovemygirls2 wrote:The tips were great! I have a question- the DON'ts that were listed....are those for before surgery for CM or after or BOTH?? I had decompression surgery October 08- I am feeling much better! But, just wondering if those don't still apply to me post surgery!


BOTH! (sorry)

Rhonda
T Spine SM T8-T12 (9 mm) Syringopleural Shunt & Laminectomy T10/T11 5 Jan 09
C spine Disc bulges/canal narrowing/DDD
L spine Spondylosis/DDD

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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby Amy Joe » Mon Feb 16, 2009 7:04 am

My tips would be in the cleaning area and saving money.

1. When cleaning floors, put floor cleaner in a small spray bottle. Sit on floor and work in small areas using old socks that are missing their pair.

2. When cleaning shower/tub, do this while taking a shower. Use an old shower scrunchy and face cleaner lie St Ives. No fumes from harsh chemicals and the steam from shower helps.

3. When cleaning anything made of Tile, use old toothbrush and toothpaste. Again no chemicals.

4. Want an inexpensive fresh smell in your home, plus a use for the crock pot? Load it up with fruit rinds and your favorite baking spice. Let it cook with the top off to fill the air with natural fruity smell.

5. If you drink coffee, those empty Maxwell blue containers are wonderful for making items easier to work with. I use them to store smaller amounts of pet food, kitty litter, laundry soap, small wash tubs, paint storage. I love these little buckets.

It is important for all of us to FEEL independent and by taking a daily task that USE to be easy.....changing it up a bit, we can do it!

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tnglitter » Mon Feb 16, 2009 1:05 pm

Thanks for taking time out of your uber-busy life right now to offer tips, Amy Joe. Very good ones!

Thanks,
Rhonda
T Spine SM T8-T12 (9 mm) Syringopleural Shunt & Laminectomy T10/T11 5 Jan 09
C spine Disc bulges/canal narrowing/DDD
L spine Spondylosis/DDD

Mom of 3 daughters & MiMi to 2 grandsons & 1 granddaughter
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby Baz69 » Mon Feb 23, 2009 8:25 am

Jack Daniel's & 100mg of kapanol,50ml of ordean and 20mg of vall's but still find my lower back still hurts about 3 or 4 out of 10 on the pain chart. Have found nothing else works as well. If I just have pill's (200mg kap, 25ml ord 15mg vall) Dr say's to have Im 5s/10 but that bit more and the jack helps more, but they still won't do a disc shave or fix syrinx after 4 years. So what are you spos to do, live in pain or numb it down so you can live.
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby razzle51 » Mon Feb 23, 2009 2:21 pm

Jack Daniels and all those pills dont mix , please be careful. you shouldnt drink and take medication. I would go for another dr. maybe you need a shunt. :)
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Re: TIPS FOR LIVING WITH SM/CM - PLEASE ADD YOUR OWN

Postby tlserenity » Mon Feb 23, 2009 3:06 pm

My husband wishes I could still drink!
Pills or no pills - my drinking days are over - since my Chiari 'got angry' one glass of any kind of alcohol and I leaning over the toilet! :oops:

I will stick to my pills, ice/heat, etc......
Terry Lynne
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Re: TIPS FOR LIVING WITH SM/CM

Postby tnglitter » Sat Mar 28, 2009 3:10 pm

FYI to all board members: This post was/is involved in a discussion here viewtopic.php?f=3&t=12

Rhonda
T Spine SM T8-T12 (9 mm) Syringopleural Shunt & Laminectomy T10/T11 5 Jan 09
C spine Disc bulges/canal narrowing/DDD
L spine Spondylosis/DDD

Mom of 3 daughters & MiMi to 2 grandsons & 1 granddaughter
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Re: TIPS FOR LIVING WITH SM/CM

Postby SMLady » Mon Mar 30, 2009 3:25 pm

I live with SM like this - if it hurts don't do it. If I have questions, I ask my doctor.

Works great!
Proud Mom of One Son
Idiopathic SM T1 - T9, DDD, Scoliosis, Pinched Nerves, Bulging Discs, Spondylosis, Stenosis
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Re: TIPS FOR LIVING WITH SM/CM

Postby wendi » Thu Apr 30, 2009 1:43 pm

I wanted to bump this and then read thru the tips and wanted to add one for the CM'rs.

If you can, raise the head of your bed 6" using wood or hollywood block. This helps the CSF from pooling in your head while sleeping and can help prevent some of the HA's you get. We aren't sure why it works, but it does. DON'T USE A PILLOW TO PROP UP, THIS HURTS YOUR NECK AND YOU MUST BE KIND TO YOUR NECK.
If you try this trick, you will find for some reason, this little trick works.

Also, if you already have the dreaded HA, sometimes, not all the time, but sometimes, if I take sinus meds and drink a huge cup of coffee, the combination of the caffeine and sinus med drying me up can alleviate the horrible HA. Some people have found staying hydrated, drinking lots of water and/or green tea also helps.

Take care,
Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
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chronic sacrolitis
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