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

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

Postby DEN » Wed Aug 08, 2012 1:17 pm

Hi all,

I am looking to connect with SM only people. Not that I wish to split the group or anything, just wish to hear their issues/stories, assessments.treatments, etc.

Thanks,
DEN
Supporter of a loved one with SM.
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Re: Looking to connect with SM (non-CM) people.

Postby reedy » Thu Aug 09, 2012 9:35 am

Hi, Good to meet you DEN. There are plenty of us SM-only folks on the board. It is sometimes a challenge to find the SM-only threads. Why look for them? Well, it seems like a lot of the primary problems come from CM if you've got it, then SM after that. If you've got CM, then surgical treatment starts with solving the CM, as the associated SM can resolve from there. But if you've got SM only, then the problems and solutions are somewhat different.

Ooops, sorry, you knew all that already! To find the SM-only folks, go through the pages of posts, and also look at people's signatures, as sometimes it says it in there.

The forum does seem a bit quiet these days - there used to be a lot more activity. But it still is a good place to share problems and meet people.
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Re: Looking to connect with SM (non-CM) people.

Postby gunflint » Thu Aug 09, 2012 1:54 pm

What about us type 0's? Just messin around. Most forums that I'm on seem quiet these days. With the notable exception of forums with a political slant. Probably has to due with being summer.

When I was first diagnosed it was as a non-CM then it changed to a type 0. There are certainly some different issues with each particular type of SM but I think that overall the answers to questions here are some of the best you can find for the price. From the moment I got the "we found something on your MRI" call until I visited with my GP I knew more about CM/SM than he did, and still do. I can make the same argument for the first NS I saw regarding SM. Most of that information was found here.
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Re: Looking to connect with SM (non-CM) people.

Postby DEN » Thu Aug 09, 2012 7:12 pm

Thanks for the replies thus far.

It is hard only having SM. I am glad that the information from CM does help, just seems like everyone has CM and SM!

I'm in the process of trying to figure out the cause of the SM, and have been consulting the experts. Nice knowing that there are others going through this trying time too.

Be well.
Supporter of a loved one with SM.
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Re: Looking to connect with SM (non-CM) people.

Postby syrinx48 » Fri Aug 10, 2012 3:02 am

Hi Den,

I have SM from C4 to conus of my spine. It started smaller, but it has been growing larger. First in width in the thoracic spine, but now also in length. Its ideopathic, so no one knows the cause. I am having this from 2005, and probably longer. I was also looking for the cause and couldn't stand the thought that the NS couldn't find it. Once he said to me, and not so long ago, stop looking for answers, but begin to learn to live with it. It has now become a part of your live. Even though he said that, I too find it difficult to accept. Even if the cause will be found, the nerve damage is there, and perhaps it will be a bit better by then, the damage is already done and the pain also. Try to find good painmgnt doctor or perhaps your own GP, and read here on the board what people are having on pain medication. It is for all very individual, some are taken nothing and others are in such a pain, they need more painmedication. You can also alliviate your pain in other ways like acupuncture, swimming, massages, etc. Read and learn from the others.

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

Postby vframe » Fri Aug 10, 2012 1:33 pm

hello den
i too have sm only, my syrinx is very long and not very wide and my NS thinks my pain is not from my syrinx but i am slowly learning him to change his mind. i too belong to the oddities, no cause for mine either. i started had back pain several years ago and starting in about october 2010 began having other types of mid back pain, typical cloak pain across shoulders etc. then started having numbness in my arms which led to my first mri which showd " a cyst " in my spine and my then PCP freaked and sent me to a NS in Shreveport who basically told me he would not send my to pain control as i was too yound to get "hooked on pain pills" and it was no big deal, just take an aspirin and learn to live with it. i wasn't satisfied so i went to another NS who said my syrinx was inoperable and recommened going to a pain specialist, which i did and ended up in having a neurotomy which didn't work and pain worsening. now i have developed some bulging discs and don't know how that happened either. anyway i go to see my NS tuesday to see what discuss surgery options from my discogram.
i still don't know and have been told i may never know how i got my syrinx. i too would like to find out but the important thing is being proactive in your pain control and being in control of your future. a fellow group member kinda told me that lol :oops:
i thnk what scares me the most about all of this is how incapacitated i have become in such a short time. i too feel like i am in my 80's at times, i can't do any of the things i did even 2 months ago and i read somewhere online that most persons with SM have a short life span expectancy. has anyone else heard of that?
well, den, anyway if you want to connect or commiserate just give me a holler.
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Re: Looking to connect with SM (non-CM) people.

Postby razzle » Fri Aug 10, 2012 2:41 pm

Den do you have SM? I have both cm/sm....
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 tennesseewalker » Sat Aug 11, 2012 4:29 pm

My CM was decompressed in 1996, so I no longer have CM, but the syrinx is still there and still gives me problems. For 24 years, I could not distinguish any pain or temperature in my right upper quadrant, and 6 years ago I started having severe burning, stinging, FREEZING pain in the same area. How can that be?!?! My NL doesn't know either. Just lucky, I guess.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Looking to connect with SM (non-CM) people.

Postby rhubarb » Mon Aug 13, 2012 4:36 pm

Hi DEN,

I have SM without CM in the thoracic area. I use to be much more active on the boards here as I wanted answers & yes my pain has been intense over these last 11-12 years! I have learned gradually to live with it & while I have used drugs & still do, I am always careful & have in fact cut down on the medication despite the pain still being there. I have done so as I have always until this happened lived drug free. I did finally have to leave work several years into the diagnosis, but new areas of interest have replaced old ones with time. I had not heard that those with only sm die earlier & it is not something I would waste my time with anyway since we never know how much time we have to live anyway & the car accident I was in which led to my idiopathic diagnosis only reinforced how arbitrary life is so that how long I have to live is not as important as how I choose to live as tomorrow I could drop dead with something completely unrelated. And no not everyone has CM with SM out there, there are those of us who only have SM. I do agree it would be nice to have a spot where people with just SM could talk as we really do not have any good option other than pain control for dealing with our issues. Where I live we actually tried to get a support group together for people with cm &/or sm, but there were only a few of us who regularly attended which was hard for me at the time. I did attend one of the conferences when it occurred in a state nearby mine, but after that was really no longer as involved as life moves on as do the role of various organizations in our lives. If you have specific questions you would like to ask me, I am perfectly happy to answer them when I can as I have lived with SM for more than 12 years!!!

take care,
rhubarb
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Re: Looking to connect with SM (non-CM) people.

Postby Graybo » Tue Aug 14, 2012 8:08 am

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Last edited by Graybo on Wed Jan 09, 2013 1:51 pm, edited 1 time in total.
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Re: Looking to connect with SM (non-CM) people.

Postby DEN » Wed Aug 15, 2012 4:42 pm

HI all,

Thanks again for the replies and great to hear from you and get your experiences.

To inform all of you, I do not have SM/CM. I have an affected family member with unknown etiology. There was an accident several years ago, which may be a cause, but or NS says she does not believe it to be. Therefore we are exploring all the other possibilities and routes, and have gone through an extensive array of tests (both neurological and other systems) to find clues. I am currently researching and looking up scientific articles to get a better perspective, as well as, educating myself about the nervous system and its interactions. Having a lumbar puncture next week, so maybe there will be some useful information there.

I will get more in depth later, at work right now. :)

Regards,
Den

edit: I am also planning on building a resource containing the information being collected and reviewed. I hope that it may serve as a reference for others, SM/CM friendly docs, hospitals, scientific research (I work for a University, so have endless resources), etc etc. Just trying to make sense of it all and help those affected along the way.
Supporter of a loved one with SM.
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Re: Looking to connect with SM (non-CM) people.

Postby gncrzy3 » Thu Aug 16, 2012 8:10 pm

I have 2 sm children no Chiari. I was diagnosed
At 27 with sm c4 to l1. Then at 34 when I was referred to
Dr Henderson I was diagnosed with atypical basilar invagination.
After that corrective surgery I was diagnosed with a Chiari 0 ( he says
It IS important) they couldn't see the Chiari because of the
Bi. Then at 34 they diagnosed a tethered cord. I threw a fit and
Made then do MRI on my kids because they were experiencing symptoms
Close to mine. 2 of the 3 have Sm only even though
They say it isn't genetic. My 13 year old at time was
Diagnosed with djd. Funny thing is I was diagnosed with djd at 16 ..
If I had sm at that point .. They didn't know what
They were looking at. If I can help with anything I would
Be happy too .. Just let me know
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Re: Looking to connect with SM (non-CM) people.

Postby Graybo » Fri Aug 17, 2012 2:40 am

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Last edited by Graybo on Wed Jan 09, 2013 1:52 pm, edited 1 time in total.
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Re: Looking to connect with SM (non-CM) people.

Postby gncrzy3 » Fri Aug 17, 2012 1:09 pm

Wow!! Well if both myself and 2 of my children have it,
Then obviously we have some genetic component. I wish
They would do genetic testing on us or some kind
Of research. I haven't met anyone else yet that has multiple sm
Family members with out Chiari with Sm
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Re: Looking to connect with SM (non-CM) people.

Postby Graybo » Fri Aug 17, 2012 1:16 pm

Drs that say 'it's all in your head' and the 'symptoms aren't from the syrinx' should watch those little dogs in pain.

Or are the spaniels just imagining their symptoms as well?
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