TIPS FOR LIVING WITH SM/CM

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Re: TIPS FOR LIVING WITH SM/CM

Postby KristyZ77 » Mon Feb 22, 2010 3:52 pm

Ok so this list is it just for people with CM or is it for both people with CM and SM??
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Re: TIPS FOR LIVING WITH SM/CM

Postby wendi » Mon Feb 22, 2010 4:45 pm

It is for both. Many things help us both. I only have cm and tethered cord, but do know that I need to be kind to my neck. CM can cause sm.

When you asked about the heavy lifting before, we don't know why it makes you sryinx bigger but it does, so does things like constipation and the straining that goes with that. Sorry, to be graphic and talking about personal things, but we just have no time to be shy around here. Tethered cord can cause sm also.

Your sm can stay stable, there is no rhyme or reason with either cm or sm. Them's the breaks. We can tell you what we know to be true. You are gambling if you lift anything.

Most people do get MRI's once a year to see if the syrinx has grown if they have sm.

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: TIPS FOR LIVING WITH SM/CM

Postby Lisa85 » Sun Apr 11, 2010 9:33 am

I can't get my best friend to understand what I'm going through. She thinks I've given up because I can't do all the things I used to do. She's a nurse so I thought that she of all people would understand. Not so much. She just can't seem to wrap her head around the fact that even if I could find a surgeon who would say yes to surgery that I would still have all of these restrictions. Not having her full support hurts the most. I feel like I'm losing her and I don't know what to do about it. She's been my rock for 17 years. We've been through so much together, but with this I don't feel like I can talk to her because she just says suck it up. she just doesn't get that there is no fix for this. Maybe I should take her to talk to my neurologist like I did with my kids. I don't know. What doesn't kill us makes us stronger....but I am so tired...and feel so alone.
SM C4-C7, 1.4mm anterior-posterior and 2mm lateral. Mild bulging of disks at C5-C6 effacing anterior CSF space. T1-T4 54mm, hydromyelia thoracolumbar junction extending over 47mm. L3-L4, L4-L5 and L5-S1. Tethered cord, Hypothyroidism.
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Re: TIPS FOR LIVING WITH SM/CM

Postby karenb » Wed May 05, 2010 11:19 am

Rhonda,

Great tips!

One additional tip regarding medical matters (learned the hard way). If, heaven forbid, you are in an auto accident (even what seems to be a minor fender-bender), do not refuse medical attention - go to the emergency room (preferably via ambulance), and make sure the staff understands that you already have a spinal cord injury.

Karen
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Re: TIPS FOR LIVING WITH SM/CM

Postby Lisa85 » Sat May 08, 2010 8:07 am

Most definately, that was one of the first things my doc told me when I was diagnosed. Am (fingers crossed) going to Ala in a few weeks for reunion and he gave me a copy of my latest MRI results to take with me just in case....
SM C4-C7, 1.4mm anterior-posterior and 2mm lateral. Mild bulging of disks at C5-C6 effacing anterior CSF space. T1-T4 54mm, hydromyelia thoracolumbar junction extending over 47mm. L3-L4, L4-L5 and L5-S1. Tethered cord, Hypothyroidism.
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Re: TIPS FOR LIVING WITH SM/CM

Postby karenb » Sat May 08, 2010 1:35 pm

The best place to get a Medical bracelet is the MedicAlert foundation (1-800-432-5378 / http://www.medicalert.org). They issue you a unique ID number and have an 800 number that EMTs, ER workers, docs, etc can call for your info. Info includes all your meds, your diagnoses, allergies, precautions, physicians, emergency contacts, etc. You can update your info any time over the phone or via the net.

There are cheaper IDs available at drug stores & jewelry shops, but those don't have much room for info, and you have to carry your info on paper in your wallet or pocket all the time. If you're unconcious, they don't have much on them to help the emergency responders.

In light of the previous rim-shots, this message applies to SM & CM both.
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Re: TIPS FOR LIVING WITH SM/CM

Postby chrisb » Mon Jun 07, 2010 9:14 pm

thank you for taking the time to type that list out. I printed it up. My Dr already informed me that I need a medical alert braclet working on getting that now.

But THANK YOU for working this list out

ChrisB
39yr old Army wife with 4 kids.
SM from c4-c5 thoughout entire spinalcord. Compressed C5 and L1. hydromyelia, Osteoporosis.
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Re: TIPS FOR LIVING WITH SM/CM

Postby NextNyc » Thu Jun 10, 2010 11:37 pm

Massages are great but leave the “deep tissue massages” for someone else. Make sure they stay AWAY from your spine and upper neck.-- You don't know how many times Ive gotten a massage and been in severe pain for days afterwards. As I posted on the forum, I live in new age/alt health epicenter, so Ive gone to see many different therpists on recommendations. They have all been horrible. I can't even be touched on the neck, yet people here are ridiculous whne it comes to chronic pain and always seem to think that addresses "the source" is worth the pain.... LOL
Syrinx C4 C6 with tail to T1; ACM 3 mm herniation. Symptoms=excruciating pain in arms and worse pain in shoulders & neck pain, the neck at min feels pressure filled and aches.Any position besides a reclined in Lazy Boy makes it worse
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Re: TIPS FOR LIVING WITH SM/CM

Postby MBand2001 » Fri Jun 11, 2010 10:57 am

WOW! This is great info!
I've done a lot of web surfing in the last 2 weeks and this is exactly what I need. Thanks for thinking to post all this info!

Meghan
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Re: TIPS FOR LIVING WITH SM/CM

Postby dlhodgson » Mon Aug 02, 2010 10:29 pm

I copied and pasted the tips to my word processor this evening. I then put it into a large clearer font for me to read at my leisure. I never knew what great tips were available for us to read. i shared them with the hubby who is going to sit down with me and see what we can do to make things easier for me. :o
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Re: TIPS FOR LIVING WITH SM/CM

Postby Janice » Thu Aug 12, 2010 10:08 am

Bump
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: TIPS FOR LIVING WITH SM/CM

Postby luv2bowljen » Sat Aug 14, 2010 2:28 pm

Do you suppose that bowling will be out of the question? I use a 14lb ball, which is about 6lbs heavier than a gallon of milk...but it is also my main hobby - outside of church.

As you can see by my user name, it is sort of my focus...I coach and help run our youth league.

But my symptoms have been getting worse lately, and my new season starts in September...should I quit? or should I at least try?


Last year I fell several times, but by the end of the season I was doing better...
==== :-)====
Jennifer
SM is 3mm x 5mm x 3.7cm T6-T8
Chicago, IL area
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Re: TIPS FOR LIVING WITH SM/CM

Postby karenb » Sat Aug 14, 2010 10:14 pm

Hi Jen,

You might want to check with your doctor about bowling, weight restrictions, and your options for doing it more safely.

It might be possible to get some Physical or Occupational Therapy to help you bowl in a more ergonomic fashion, and more safely... I don't know if a lighter ball is an option.

Karen

P.S. If you need a bad joke, I'm your gal... my hand/eye coordination has always been lousy, so any ball I ever threw ended up in the gutter or someone else's lane :lol: )
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Re: TIPS FOR LIVING WITH SM/CM

Postby wendi » Mon Sep 13, 2010 7:32 am

Bump
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: TIPS FOR LIVING WITH SM/CM

Postby judyg » Fri Sep 17, 2010 2:50 pm

bump
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