Progression Question

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Progression Question

Postby gunflint » Thu Nov 08, 2012 4:07 pm

This may be a difficult question to answer as I'm sure there are no cut and dried answers but here goes. I'm interested in learning about the progression of symptoms. For those that are paraplegic or quadriplegic how much time elapsed from the time you noticed new problems until you progressed in to your current condition? Or those that are losing or have lost bowel or bladder control. Was it something that you lost over time or did you just wake up one day with no control? Or those with a lot of pain issues. Did your pain increase all at once or did you get some warning that you were developing more severe pain issue? Thanks.
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Re: Progression Question

Postby Catrine » Fri Nov 09, 2012 8:50 am

I'm sure there is no cut and dry answer but here's my experience:

Wnen I first had symptoms, it was clawing of the hands. I thought it was due to overuse of my cane. It wasn't until I started getting tingling in my face and blurred vision that I got worried (and that really happened after a cold and related coughing, which I think progressed the symptoms). That's when I had my Chairi decompression. So say total time was about 5-6 years. Of course, I subsequently learned that SM had been diagnosed in my teens so really we're talking about a timeline over 1-2 decades.

For my more recent symptoms, they really started back in 2004-5 (a return of clawed hands). As I stated on previous posts, because the NS that treated me never explained that there is a possibility of the syrinx refilling, coupled with not finding out about my teen diagnosis until I requested my children's hospital records) I feel I could have been more agressive in treating the syrinx at an earlier stage. Real weakness began to present in 2008-2009, with new symptoms of the "cape-like" pain on and off at first and night sweats. These became more progressive over time. As did arm weakness.

Blowel and bladder I can't comment on as my spina bifida never meant these were normal to begin with.

So with me it was a slow progession, but things like coughing sneezing, I think, made things proress more quickly.

That's what happened with me.
C
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Re: Progression Question

Postby alpowers01 » Fri Nov 09, 2012 2:04 pm

You are right. There appears to be no uniform, or predictable, timeline for progression of symptoms. Each case is unique.

This said, my symptoms commenced with an occipital headache that developed, as a teenager, whenever laughing. This could be relieved by holding breath and compressing my diaphragm. In my 20's, this disappeared completely and has not recurred. In my late 30's, I developed a shawl-patterned numbing and burning sensation. At this time, my syrinx was verified surgically. I remained very stable until my late 50's when I noticed a numbing of my toes and feet. This numbing has now progressed to mid-thigh (I'm 73) and the torso neuropathy has become more uncomfortable. More recently, I've noticed a tingling around my mouth and a "hot pepper-like" burning sensation on my palate and tongue. My fingertipss have started to develop a parchment-like texture, as well. I have not had bladder or bowel issues that I'd associate with the Chiari or syrinx... yet. I'm contemplating decompression surgery at this time. My concern... at my age. is it worth it? Will it leave me worse off? Will it prevent or retard progression of symptoms?

I believe it's helpful to know what others experience, but there is no question that while we all follow similar paths, the timelines are all over the place.

With sincere, best wishes,

Al
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Re: Progression Question

Postby gunflint » Sat Nov 10, 2012 12:30 pm

This is great stuff you guys, thanks. What I'm trying to achieve here is more awareness for myself and if others are interested, them too. While my symptoms are fairly minor compared to many others here I believe that it's important to keep a keen eye on progression. I think it could become an important factor when determining to continue your current program or deciding to go on to the next step concerning treatment. Al's post is the perfect example. I know that over the last few months i realized that I was sweating much more profusely from my left side than my right. Is this a new symptom? I have no idea as it's not something that you notice right away. With all the changes that are coming our way and as health care options decrease for us older folks I think that more now than ever we need to be on top of any changes in our progression.
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Re: Progression Question

Postby kiminfla » Mon Nov 12, 2012 8:48 pm

I may have missed it in your posts, so if I did I apologize...are you keeping a pain log or journal? I found this very helpful in the first couple years following my surgery. My memory of what I've been through...what symptoms began when, etc. has proven to be inaccurate. For example, when I first met my NS, before surgery, he had me do a "pain drawing" where I colored a picture of a body with different colors in different areas, which represented different symptoms. For example, red for burning pain, (arms, chest, legs), black for stabbing pain, etc. I did a new drawing on subsequent visits.

When I reported not feeling much better at one of my follow-up appts, he brought out my original drawing and compared it to the one from that day. Amazingly, I had experienced some improvements that I wasn't really aware of. It was a very insightful experience and changed the focus of my thinking.

It may prove to be insightful for you as well and can serve as a way to monitor your progession.

Just an idea... Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Re: Progression Question

Postby gunflint » Tue Nov 13, 2012 8:28 am

That sounds like a good idea. I'm still trying to forget about it as much as possible but that may not be the right approach.
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Re: Progression Question

Postby Janice » Wed Nov 21, 2012 1:45 pm

My spinal pain has always been the biggest problem for me. It's extremely difficult to manage and hasn't been below a 6/10 in about 4 yrs. I've come to look forward to the times when it is a 6 because at least I'm comfortable at this level.

As for the progression of symptoms, initially it was fast & furious. At some point, it slowed to every 3 to 4 months. Over the entire 6 yrs, it has now slowed to every 6 months to a year. I'm a paraplegic, I went from using a walker to being a full-time wheelchair user in 7 months.

I have many neurological anomalies. I have constant, full body (including head & buttocks) tremors that prevent me from walking, driving, etc. I have chronic spasms in most of my limbs, throughout the day. Several yrs ago I developed speech difficulty from a paralyzed tongue. I initially thought I'd suffered a stroke. Most recently, I'm struggling w/left-sided facial & arm paralysis. A few yrs ago, I had lack of feeling in my lower body w/some areas of decreased feeling in my upper body. I get tingling, numbness & pins/needles sensations in my spine.

The one thing I noticed right away w/SM is that, there's no rhyme or reason, it does what it wants, when it wants. I've not been given warning for anything from my first day w/symptoms. I stepped out of my car to a severe right leg tremor, my first symptom. I was hospitalized, had 10 days of rehab & the deterioration has steadily continued. I never returned to work after that 1 day I stepped out of my car, my whole life changed drastically by the time I was released from rehab, I'm a whole different person.

Hope this helps, if not, I can answer any questions for you.

Take care,

P.S. My bladder/bowel issues are very sporadic.
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: Progression Question

Postby Janice » Wed Nov 21, 2012 1:55 pm

I forgot to mention the temperature regulation issues. I spend 95% of my time w/a portable A/C & a fan blowing directly on me. My skin will be freezing but I'm burning up hot & sweating all over. I never sweated before, and I was always the one to have gloves & a coat in 60 degree temps. I can't keep my body cool enough. I had my doc check to see if I was going through the change, even tho I was only 43 at the time, now 49 & probably am going thru some changes but it would be difficult to tell the difference since I've been this way for so long. There was no warning w/this symptom either.

Take care,
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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Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California


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