Looking to connect with SM (non-CM) people.

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Re: Looking to connect with SM (non-CM) people.

Postby gncrzy3 » Fri Aug 17, 2012 6:35 pm

I got that I was a hypochondriac for years. Now that
Most all the discs in my back are bulging and I also
Have severe djd ontop if the SM they aren't saying it anymore..
They are in awe I my mri's and say I am way to
Young to have my spine look that bad
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Re: Looking to connect with SM (non-CM) people.

Postby phyrehawke » Sat Aug 18, 2012 3:44 pm

Thank you Graybo for posting that article. I noted it was published in 1980? Have you read it?

I am one of those people with both SM and borderline chiari. I had a special CSF flow study done in 2006 to determine whether the chiari was affecting my CSF flow at all or not, and it was not. My NS was sure it did not cause my syrinx, but an old injury had. Around 1985 I had a really nasty horseback riding accident, in which I hit the ground head first and woke up totally numb and unable to move for a little while. I hit the ground ahead of the horse and there was some talk of whether or not he also ran over me. I was out cold so who knows, but I think he missed me. I'm told the temporary paralyzation was due to cord compression and it probably getting pinched/nicked between the vertebra even though they weren't broken, when my head hit the ground. I noticed two things immediately after that accident. One was that my pain perception changed, and the other was that my sleep pattern changed. I was always a very early riser and suddenly I had trouble getting to sleep too. I was in my teens and nobody was going to be giving me anything stronger than tylenol and that was useless. I had HS to get through, and it was hard to focus on class when the pain was louder than the teacher. We had a family friend who had practiced meditation for probably 60 years at that point and he told me it could be used for pain control, so we came up with the idea to take the time I wasn't going to sleep to practice that, (a nice way to relax before I went to sleep too) and it definitely helped and was my main pain control for 10 years. I still use different forms of it, and yoga too.

I had an MRI in '93 after I started dropping everything and it got to the point I had wires obviously crossed regarding dropped items. I could see the glass shattered but it felt like I was still holding it. Very puzzling! And it turned out to not be just spinal cord not relaying messages incorrectly but one in my shoulder encapsulated as well. So the SM turned up on that MRI as an incidental thing, since the docs knew nothing about it and could do nothing for it, but we could work on this other problem and it helped. In 2005 I had another accident that clearly made my syrinx symptoms worse for awhile, but the syrinx itself is stable on the MRI's I've had since then. It's a bit of a tightrope act making good choices to get it to stay that way. And I came to the SM community in 2006 I think? I have also had a few friends here in SD who have either ACM, SM or both. (And hey you with the confusional element marbles...Ideally...you could PM me)

I'm going to have to get to the life expectancy thing and what's going on with those little piggies in another post...Hubby will be insisting I eat something in a moment.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: Looking to connect with SM (non-CM) people.

Postby phyrehawke » Sun Aug 19, 2012 11:49 am

The life expectancy discussion standard disclaimer is: You are more likely to die in a car accident on the way to the grocery store than die of an SM related illness. It does happen, but rarely, and I'm starting to think a lot of the ones that do still happen are largely preventable with some outside the box thinking.

I did my homework on the life expectancy issue several years ago, and we had a discussion about it on several of the groups, and several of the members and I made an effort to get the statistics updated on various websites, but we found a few problems with that. 1 problem is that many of the websites are simply not maintained. You can check the date they were last updated.
Another problem is how the statistics are tallied. When somebody dies of an SM related illness, it's not usually SM that goes on the death certificate, but more usually something like pneumonia. If the pneumonia was caused by the SM you can request that be noted, and if I remember correctly Boot's family did that. Suicides are also not noted as being due to SM.
Another issue is the years they are taking into account, and the recent advancement of technology. Prior to 1980, an MRI was not used to diagnosed SM, so if you were diagnosed it was a very symptomatic syrinx. My grandmother gave me an interesting perspective on this because it turned out I had a couple of family members diagnosed with this after accidents back in the 50's and 60's and things were very different for them...in a very sad way I am sorry to say.

When they tally the stats on life expectancy for SM they rarely say how many decades they are counting, and never how severe the cases are. Because prior to roughly 1980, the cases were only severe and that steers the stats in a very bad direction. If you are going to be a little scared by it, then take the biggest risks and start avoiding them. Don't be eating and drinking food tipped back in your recliner in front of the TV set if you have issues choking on food, swallowing issues, or breathing problems. If you've got asthma and the SM seems to make it worse in a hurry when you catch a cold, stay on top of it and don't let it turn into pneumonia. Taking some zinc once in awhile can help prevent respiratory infections and can help with nerve pain too.
The little piggies? Farmers found years ago that young pigs are prone to something like SIDS, and adding a medium chain fatty acid to their diet helps the breathing part of their brain function better and can significantly improve their life expectancy, and their profits. Coconut oil is the one most frequently used. I think Palm oil might be another one? When I had a major crisis in April the coconut oil helped pull me through it. The little pigs in Graybo's article were probably not breathing well due to having SM (and at such a young age there is a strong arguement for that being genetic, like in dogs) and I'm not sure if the coconut oil trick was in use by farmer's back in the 80's, but it might have helped prevent the pneumonia from developing in the first place by helping the piglets breathe more deeply as they were sleeping. Deep breathing helps the air circulate so fluid doesn't collect in the lungs.
The last issue is managing glutamate blocking meds so that you aren't taking so many that they suppress core reflexes like coughing, sneezing...ones they never check. The doc's just aren't taught to think about them that way. I think that's a dangerous issue that gets missed sometimes, in an effort to control severe pain.
So anyway, I haven't been up on this soapbox in awhile...you have my 2 cents worth on this subject for the next year or so, lol.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: Looking to connect with SM (non-CM) people.

Postby JeffinMI77 » Sun Aug 19, 2012 4:16 pm

There's alot of good info in this tread. I have only been diagnosed with sM and I think most of my problems come from the bulging disc down most of my spine. I am only 34 and i'm playing the waiting game with SSD/SSI. I was diagnosed less than a year ago, but my symptoms have been present for longer. I have noticed a rapid decline. I cannot stand or maintain any position for longer than a few minutes or i'm miserable...Tell me a job where I have that kind of freedom. Not to mention a boss that's going to let me nap! I can only think of one profession where I could be on my back and it's not legal! LOL. I need more treatment and testing but since I don't have any kinda of health coverage my dr and I are at a standstill. I hate to admit that i'm going to have to reach out to friends and family for help. My Dr. and Rx's alone are 200 a month.

Life expectancy...I read an average of 47 somewhere and lost it. I was diagnosed with in a few days of my 34th b day. I kept saying that's only 13 yrs away. With little knowledge from the Pros and all the self educating i'm not sure what to believe. I just take it day by day and try to make the best of it. I was a Patient Care Technician and what helped me make the desicion to stop working was have more time to live as normal as possible. If I continued to lift patients and push them in wheelchairs, i would put myself into a wheelchair.

I found a sub ASAP group on Facebook for men and it's been helpful. It's nice to have a place to talk to other men. We have different ways of handling things and maybe questions for each other that we can't or won't ask on the general forum.

Jeff
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
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Re: Looking to connect with SM (non-CM) people.

Postby razzle » Tue Aug 21, 2012 3:58 am

that life ex 47 is way wrong now and has been changed . cant find the link. I am 62 and still going ... so dont let that upset you
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Looking to connect with SM (non-CM) people.

Postby DEN » Tue Aug 21, 2012 11:28 am

Great stuff everyone!

Lots of good information. Been looking up Idiopathic SM genes research and there are a few papers with some possibilities. Have not sat down to really examine the finding, but will let everyone know if anything good arises.
Supporter of a loved one with SM.
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Re: Looking to connect with SM (non-CM) people.

Postby reedy » Fri Aug 24, 2012 2:38 pm

That looks like quite an interesting read.
Comparative evolutionary studies are my line of work, so I will read this with professional and personal interest. I read a number of the chapters linked on the side of the website and there are many ideas that made sense. However, I'd be happier if there were also references to scientific studies. A number of the statements are quite speculative - nothing wrong with speculation, but its only a first step in untangling cause and effect. The author is a chiropractor. I'd like to see how his ideas link with an evidence base, in the peer reviewed literature.
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Re: Looking to connect with SM (non-CM) people.

Postby gunflint » Sat Aug 25, 2012 8:11 am

Some of us do have symptoms all the time.
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Re: Looking to connect with SM (non-CM) people.

Postby Catrine » Sat Aug 25, 2012 11:03 am

Hi DEN -

First, I'm sorry you've got a loved one who has SM. The posts on these boards are helpful and you can choose to listen to/do whatever you/your loved one think helps. There is no "one right solution" as you've heard numerous times because everyone's syrinx differs and the reasons for them (known and unknown) also tend to differ.

I won't go on too much in this thread as I have CM as well so I'm not exactly the person you want to connect with. Just wanted to say that I was first diagnosed with SM when I was 13 years old (and my assumption is that I'd had it for a while before that). I'm now in my early 40's. SM is a slow progressing condition - and sometimes it doesn't progress into anything major. Unfortunately, I am one of those who is seeing the real deteriorating effects now. My story is on another thread.

But I wanted to chime in on your search for info. My surgeon is in the final stages of co-publishing a monograph entitled "Syringomyelia: a Disorder of CSF Circulation". I think it will be out early next year but brings together views from across the globe. I believe it will be published in the US as well.

http://www.amazon.co.uk/Syringomyelia-D ... 128&sr=1-1

Can't vouch for its contents but just wanted you to be aware it was going to be out there.

Good luck
C
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Re: Looking to connect with SM (non-CM) people.

Postby reedy » Sat Aug 25, 2012 2:41 pm

This thread is getting interesting!

Graybo - I follow your discussions with interest. I consider myself a fairly hard-core sceptic, but with wide ranging interests, willing to turn the bright light of consideration on anything. You've brought intriguing, and sometimes optimistic perspectives to our shared concerns. Thanks! Keep it coming.

Catrine - THAT looks like it should be a useful read. Do you think we can get a review copy and co-author a patient's review? Ask Flint! Or we will just check it out from the library, or meet for reading sessions up at the Wellcome Libarary..... (not that my track record on academic reviews is very good at the moment - I tend to be completely behind on everything, having adopted an even more 'manyana' lifestyle than ever before)
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Re: Looking to connect with SM (non-CM) people.

Postby phyrehawke » Tue Aug 28, 2012 1:17 am

I used to see one of those atlas orthogonal (upper cervical) chiropractors...like in the video... for years, and he was very helpful in controlling symptoms until the 2005 accident. He did his best to help after that but my neck ligaments seemed too unstable (stretched out I suppose) to hold an adjustment for a long time. I would get one done and it could be heard literally popping right back out the first time I stepped off a curb or hit a speed bump in the car. :( Things have stopped shifting around so much in my neck so maybe one would hold again now.

I still have the range of motion he restored to my shoulders so whatever he fixed in the first adjustments held well...that was really kind of like a miracle for me! Neither one of us were expecting it to work so well.
If Janice or anybody in the San Diego area is interested in seeing one there are at least 2 here. Mine is in Carlsbad, and there is one with a neurology specialty in La Jolla I think. These are chiropractors that don't do the jerky adjustments, just taps.

(global site for these chiros) http://www.atlasorthogonality.com/Patie ... outAO.html

Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: Looking to connect with SM (non-CM) people.

Postby DEN » Tue Aug 28, 2012 1:48 pm

HI all,

Sorry been away because had a lumbar puncture done last Wednesday. Still waiting on the Chemistry tests, but found some good (yet confusing) news. CSF flow is normal. I was under the impression that the blockage caused most of the SM complications. There is no nerve damage or muscle damage according to other tests.

Time to research more.........
Supporter of a loved one with SM.
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Re: Looking to connect with SM (non-CM) people.

Postby syrinx48 » Wed Aug 29, 2012 4:17 am

Hi Den,

I just don't get it. You are a friend of someone with SM, but you are also taking test. Why? A lumbar punction is not without complications and you are looking for nerve damage. Do you also have SM?

Annemarie
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Re: Looking to connect with SM (non-CM) people.

Postby phyrehawke » Thu Aug 30, 2012 11:51 am

(Annemarie, maybe he just forgot to use a pronoun? I get my tenses mixed a lot but rarely leave my pronouns out or mix them, but sometimes people do that)
Was it you DEN that had the lumbar puncture, or your loved one? I hope there was no CSF leak or nasty headache afterwards?

I think I might be a bit lucky around here in that I've never had an LP (probably wouldn't allow it) but I got snared into help fixing one once...feel very sorry for people who have to have blood patches because they get a CFS leak after a LP. Those headaches look miserable. Has anybody on this SM-only thread had a LP and had that happen? The answers might help clarify a bit of this theory I've been working on.

To my understanding, the blockage doesn't have to be permanent in order for the syrinx to be permanent. Active blockages only cause a syrinx to progress rapidly, whether they be permanent due to a chiari malformation blocking flow, or a temporary blockage due to severe inflammation post injury. When the blockage resolves the syrinx remains, but it might not progress, or progress so rapidly, or best case scenario it collapses.
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Re: Looking to connect with SM (non-CM) people.

Postby Graybo » Thu Aug 30, 2012 12:03 pm

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Last edited by Graybo on Wed Jan 09, 2013 1:54 pm, edited 1 time in total.
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