CSResearch

Starting phyical therapy next week

feeds@yuku.com (tiredmama) — Wed, 28 Oct 2009 21:43:03 GMT

Hooray... I finally bit the bullet and checked out the physical therapy at one of my local hospital and was in for a couple of pleasant surprises. First, when she asked me what I had been diagnosed with and said syringomyelia, she knows what it is. That's very promising:) Then when I asked about the co-pays she told me they bill the insurance first, then the following month they bill me, and I can make payments on it, instead of paying the whole bill every month:) At least this is going...

???s about Tethered cord and does temp probs go with SM?

feeds@yuku.com (rorow78) — Sun, 25 Oct 2009 11:00:15 GMT

Is inability to regulate body temperature a normal symptom from SM? When I'm cold, it's so hard to warm up, when I get overheated, it's very very difficult to cool down. I remember reading a long time ago that this can be a part of SM, but does anyone else have this? I'm thinking this could be a hormonal thing maybe.

ALSO, anyone here who has tethered cord deal with a lot of low back pain? What were your personal symptoms of this? I'm curious about this syndrome...

Tonight's Seventh Annual "Working Toward a Day Without Pain" Gala

feeds@yuku.com (babkane) — Sat, 17 Oct 2009 08:01:16 GMT

I am so sorry I haven't been able to participate on this message board for quite awhile. It looks like I have a lot of catching up to do! I continue to recover from major spine surgery, and struggle through each day with my recovery and mitochondrial disease. I'll explain that one soon, but for now I will tell you that it is a serious energy and strength sapping disorder.

At the same time this has been going on, I have been very busy working with volunteers to plan the...

Chiari crusader dies so sad

feeds@yuku.com (razzle5150) — Wed, 14 Oct 2009 11:31:25 GMT

http://www.legacy.com/obituaries/deseretnews/obituary.aspx?n=kelly-morrill&pid=134320970

After giving up for quite some time...I'm ready to look for more answers

feeds@yuku.com (rorow78) — Wed, 14 Oct 2009 07:45:17 GMT

Good morning!
I haven't been here for a very long time. I actually got to the point quite some time ago where I felt like if I spent anymore time on the CM/SM sites and groups, it would just keep me going in the downward spiral I was already going in. So, I quit visiting them, and quit looking for answers. Just worked with my PCP/internist to keep my symptoms treated and lived my life.

I have two little boys 8 and 5 who are very high...

First visit to neurologist

feeds@yuku.com (tiredmama) — Tue, 06 Oct 2009 14:29:09 GMT

OK... I will start off by saying how disappointed, disgusted, and completely fed up I am. The neurologist the neurosurgeon sent me to feels that the symptoms I am having can't be coming from my syrinx, but fully admits that enormous syrinx can have no effects while small ones can have alot of symptoms. I have been completely up front in that my symptoms come and go, with the only constant being pain. I passed my initial neurological exam, but he did see more muscle weakness while...

went to rheumatologist

feeds@yuku.com (tiredmama) — Thu, 10 Sep 2009 14:41:39 GMT

No ehlers danlos. good news at long last. lol. he did prescribe lyrica. hoping that will work. i liked him alot, but i don't have to go back and see him again. so that is one less doctor i will have to see. that definitely makes me happy.

It's that time again! Day Without Pain Biograhies

feeds@yuku.com (LKanePunyon) — Sun, 30 Aug 2009 15:59:37 GMT

Good Evening!

As you know, the 2009 Working Toward a Day without Pain is coming upon us quickly (10/17/09)! That means it is time to update the biography PowerPoint and framed biographies. The framed biographies sit on the dinner and item tables and the power point will be on a loop through dinner. We have found that these biographies really added a personal touch and helped show the guests the faces of the people they are helping.

If you would like to...

How is everyone?

feeds@yuku.com (Lisa Stringer) — Mon, 24 Aug 2009 12:13:10 GMT

Hi,
I hope everyone is enjoying the end of their summer. I just wanted to see if we can get updates on what people are up to.

We know Barbara is hard at work recovering from surgery and is back behing the wheel.

We know the addition for Owen is done so I am sure they are all exhausted.

Mel how are you and the kids?

Jerry any new movies?

Kathi how are you an Neil?

Eliza are you getting ready to go back to school??

...

And the results are in... well the MRI results

feeds@yuku.com (tiredmama) — Wed, 19 Aug 2009 18:09:43 GMT

I was very sneaky and got my MRI results.... it is my body after all. No reason to wait until the end of September to find out if something is wrong with my brain. Anyway... NO CHIARI!!! That's great news. They did find 2 developmental venous anomalies. One is about 12mm in the front of the cerebellum and draining to the rear. At least it's draining, I think. lol. From what I have read they can hemorrage, that would be quite bad I would think, and can cause seizures. Don't...

Eight Month Surgerversary

feeds@yuku.com (babkane) — Fri, 07 Aug 2009 11:13:33 GMT

My eight month surgerversary was on Saturday. It is amazing how fast the months are flying.

I reached several new milestones over the last couple of weeks:

1. I drove to and from a medical appointment 30 minutes away. Most of the drive was on Transit Rd.

2. Are you ready for this one? I tied my own sneakers!! I have been avoiding shoes with ties...

Went to neurosurgeon

feeds@yuku.com (tiredmama) — Tue, 04 Aug 2009 21:57:53 GMT

Went to the neurosurgeon on Friday and I have to redo the MRIs of my back and also have one done of my brain. He thinks I may have a lesion on my brain due to facial numbness. He said all facial nerves are in the brain. He tested my reflexes and they are almost nonexistant on the left side. Left arm barely moved, left leg barely moved, shoe flew off right foot when he tested the right side. At least there was one moment of humor lol. I have to see a rheumatologist because he thinks I may have...

At long last--the addition is finished

feeds@yuku.com (01sMom) — Sun, 26 Jul 2009 12:02:44 GMT

You all listened to me whine these last 2.5 years about our project and how it will never get done. It is done, just waiting for Owen to feel well enough to start packing. I am going to try to post the photos.....

Research Announcement

feeds@yuku.com (babkane) — Sat, 11 Jul 2009 11:56:46 GMT

Hi Everyone,

I had two great meetings this week. We had a kick off meeting with Dr Nishikawa regarding his COH funded research project. He and our volunteer scientific advisor/NSG, Lee Guterman, discussed the scientific design of the study and some in depth anatomy which I...

Research Announcement

feeds@yuku.com (babkane) — Sat, 11 Jul 2009 11:55:57 GMT

Hi Everyone,

Disability Retirement

feeds@yuku.com (babkane) — Sat, 11 Jul 2009 08:04:43 GMT

Well, I am now officially retired. My teachers retirement system granted me disability retirement, which means that they consider me totally permanently disabled, and unable to engage in any gainful employment. That is a tough one to swallow!

This is not how I intended my teaching career to end, and certainly not this soon. It is a relief to know that I do not have to figure out how to continue teaching given my limitations, but I am very sad that I will no longer be teaching....

surgery update

feeds@yuku.com (Don) — Wed, 08 Jul 2009 07:43:57 GMT

Hi everyone,
I know i dont post much but you all have been very helpfull over the years and i want to let you all know the good news.
Heidi had surgery on the 2nd for tethered cord or OTC or whatever.
surgery went well Dr E wouldn't say if the filum was tight or not but said when he cut it the filum snapped, it was measured at 10mm.
The day after surgery the headaches shes been having were virtually gone, the bladder problems have been for all practical purposes...

Slanted Desk Top? (Workplace and/or Home Modification? OT?)

feeds@yuku.com (Eliza) — Sat, 04 Jul 2009 09:00:31 GMT

For those who don't want to read the tl;dr version: the short version is: anyone know a desk-modification item that will give me a slanty-topped desk? That I can afford, preferably?

For those who are masochists and enjoy wading through the Eliza-can't-write-concisely-and-needs-an-editor-at-life pea soup version:

So, in trying to think of things that would make my job easier, one thing that occurred to me is that having some sort of majorly angled desk top, for...

Happy 4th of July!

feeds@yuku.com (Lisa Stringer) — Thu, 02 Jul 2009 11:04:22 GMT

Just wanted to wish everyone a happy and safe holiday.

SSDI question

feeds@yuku.com (tiredmama) — Wed, 01 Jul 2009 10:03:52 GMT

I just got a call from social security this morning. She wanted to ask me about what my average day is like. I told her and asked if they were sending me to any doctors and she said no because all my info is current and their doctors couldn't do as well as my own. She also said she will be requesting my records from Cleveland Clinic when I see them. I asked about how long before a decision and she said about 90 days total. So my question is does anyone know if that is a good thing or a...