Syringomyelia, terminal?

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

Syringomyelia, terminal?

Postby Eden** » Thu Sep 27, 2012 7:55 pm

Hello everyone! Its been a long time since I posted on here. I see that my pictures of my inserted shunt arpretty popular, kind of weird to think that over 2000 people have seen my back guts. Lol.
Anyway, I recently read an article on worldandI about a man with syringomyelia that had pretty severe symptoms. In the artcle the writer went on to say that syringomyelia was considered a terminal illness?? Has anyone ever heard that before at any conventions or anything?

Here is a paragraph from the article in question.

” Syringomyelia is considered a terminal disease that causes a person to literally waste away. Ultimately, it is the complications that people eventually die from. Arms and legs become atrophied due to immobility; organs begin to fail because the body’s dramatic deformity causes them to over work. Stroke and aneurysm is a common occurrence for people in the later stages of syringomyelia.”

Any info would be helpful on this. Thank you!
Jill 27 yrs old, married to the love of my life. Mother of the most beautiful girl in the world.Diagnosed with congenital SM, syrinx from C-4 to T-12. Shunt placement 9-8-09. T-7-8-9-10 laminectomy, Syrinx shrinking.
Eden**
 
Posts: 42
Joined: Thu Jun 25, 2009 4:47 pm

Re: Syringomyelia, terminal?

Postby gunflint » Fri Sep 28, 2012 6:36 am

Sounds like C/M type 2, 3, or 4.
gunflint
 
Posts: 266
Joined: Tue Jun 14, 2011 8:10 am
Location: Duluth Mn

Re: Syringomyelia, terminal?

Postby Catrine » Fri Sep 28, 2012 6:56 am

Hello Eden,

I'm not a doctor so not in any way qualified to say whether SM is a terminal illness. And from what I've seen on the forum, the topic tends to get people quite animated on both sides of the argument.

I can only say what's happened to me. My syrinx is so extensive that I've become a quadaplegic. And with that comes the complications that result from being a "quad". Before my syrinx was drained, I was beginning to have problems swallowing and losing words when speaking. That was the effect of the syrinx CSF build-up in the brain stem. Had the drainage not happened, I could definately see myself heading the same direction as the person in the article.

I think to make a sweeping statement that SM is terminal would be incorrect. I think it depends on the size of the syrinx, the length of time it has existed, its progression (or non-progresssion), success of treatment, etc. Some syrinxes stabilize and never get any worse. And for the vast majority of people on this forum, the syrinx they have, while causing them many debilitating problems, won't ever get to a point that it would be life threatening. And they should not worry.

But for a very small porportion of us, the prospect of SM complications being terminal is a possibility. I know my blood pressure is much too high (160's-180's) and I attribute some of that to my SM. And if my syrinx refills the possibility of complications will rise once again.

According to my surgeon, no real studies have been done on the incidence of death from SM. And as you rightly point out, the cause of death tends to be attributed to the complication rather than the SM itself. So I'm not sure we will ever really have a definitive answer until more accurate reporting/assessment is done.

Of course, all of this tends to worry people. Like I said, sweeping statements probably aren't helpful as they won't apply to the vast majority of people, but it would not be right to completely deny the terminal possibility.

Not sure if that helps.
C
Catrine
 

Re: Syringomyelia, terminal?

Postby reedy » Sun Sep 30, 2012 1:25 pm

I looked up the article
http://www.worldandi.com/subscribers/fe ... ?num=25249
, and it is a very good overview, quoting top specialists.....except that paragraph, which like the rest of you, I find surprisingly absolute about terminal outcomes. Perhaps someone should contact the journalist or editor to find out how well-researched that statement really is?

I also found it interesting that the focal person in the story is a chiropracter with SM. If you haven't picked it up from my responses on discussions of chiropracty, I'm not a fan of the field. But he might present some useful counter perspectives. Any of you in Lincoln Nebraska who can contact him?
User avatar
reedy
 
Posts: 334
Joined: Fri Nov 02, 2007 11:37 am
Location: London, UK

Re: Syringomyelia, terminal?

Postby razzle » Mon Oct 01, 2012 8:22 am

this was taken from a article about the ffamous Golfer Bobby Jones

"Like ALS, it leaves the brain unaffected, so the victim is always aware of his diminishing capacities. Unlike ALS, syringomyelia is not fatal, but the patient usually dies of the disease's side effects.
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
User avatar
razzle
 
Posts: 1876
Joined: Thu Apr 30, 2009 4:55 am

Re: Syringomyelia, terminal?

Postby toport20 » Thu Oct 04, 2012 9:49 pm

Catrine,

I know this is off the subject, but I saw you are having problems with your blood pressure. I was having problems too early in the dx of chiari/syringomyelia. I started taking CoQ10 and my blood pressure is perfect. I don't understand, it shouldn't be, I don't exercise and am exhausted ALL the time. It's kinda expensive, but is cheaper than the blood pressure meds I was on. Just a thought, hope ya feel better!
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio

Re: Syringomyelia, terminal?

Postby Catrine » Fri Oct 05, 2012 5:20 am

Thanks Toport,

I'll look into that.

Thx
C
Catrine
 

Re: Syringomyelia, terminal?

Postby Eden** » Fri Oct 05, 2012 8:19 pm

Thank you to everyone for replying on this.
I do like the article as well, I just really questioned that one paragraph. It made me wonder if I had missed something.
Jill 27 yrs old, married to the love of my life. Mother of the most beautiful girl in the world.Diagnosed with congenital SM, syrinx from C-4 to T-12. Shunt placement 9-8-09. T-7-8-9-10 laminectomy, Syrinx shrinking.
Eden**
 
Posts: 42
Joined: Thu Jun 25, 2009 4:47 pm

Re: Syringomyelia, terminal?

Postby Debbieducati » Wed Oct 24, 2012 6:51 pm

I would like to say that if it is, I am living proof. I was diag. in 2004 with SM (Unknown) from C2- C7, started with paralysis of my legs for 3 weeks. Took one year to find cyst. Severe migrains for 1 year and upper body pain, Light a tire around my weist. Then one year later a pyloric ulcer perferation. In the hospital for 5 days, off work for another 8 weeks. Then another year of vomiting daily (several times). then another year of tests to determing I have gastroparesis. Pain since, was on pain meds for two years, making the diag. track worse. Detoxed on my own, (because of insurence denile) (5'7"weighing 90lbs) I was denined and sent home like a peice of gargarge. Mind you I had a 25 year carear of a veterinary technician in the speciality field making good money. All gone. I have lost my gob, my insurance, I have only me to control my pain and fatige and neutrition. None of my intestines work normal. I'm in the bathroom 15 or more times a day. I have tried more then I can write. I have one doctor I am seeing and he is a gastrologists. Not sure where to go from here, but I beleive that SM can cause gastrointesninal problems. none of my GI works normal, I strugle every day to keep my energy up. Any advise would be great.
Love
Debducati.
Love to all
Debbieducati
PTSM C5, C6
Debbieducati
 
Posts: 137
Joined: Fri May 18, 2007 10:35 pm

Re: Syringomyelia, terminal?

Postby hegnauea » Thu Oct 25, 2012 8:50 am

Hey Debbie,

Here's a weird question. do you have loose joints that sublax, or other signs of Ehlers Danlos Syndrome? The reason I ask, many people with Ehlers Danlos or other connective tissue disorders have Gastro problems. Many of them see an improvement of symptoms when they stop eating Gluten - there is some connect between a Gluten sensitivity and connective tissue disorder. I am working on quitting right now because I started having sharp pains in my side this year.

Good luck..
Ab

Sm C5-C6, Cranio-cervical instability, other junk
hegnauea
 
Posts: 137
Joined: Thu Jan 24, 2008 2:24 pm
Location: Washington DC

Re: Syringomyelia, terminal?

Postby Debbieducati » Thu Oct 25, 2012 9:12 pm

I have been gluten tested three time. I know my family history does have. RA, DJD, Ostoarthritis, gout, and fibromialiga. I have been testes for all. But who is to say what with out genetic testing. With-out insurance not much I can do. I was tested last year for chrones and NO! I have done better this last year with-out doctors then I did before. Off the pain medication I can say the pain is and will never leave. You learn how to deal with it. My family is so important to me, I am able to over come most of it, well may be not but I try every day I wake up. I have 2 good days a week in between all of this stuff. I'm only 51 and I have a long way to go before I can do nothing I enjoy doing. I am on unemployment at this time and not sure if I should go for full disability yet. My mind tells me not too but my body does every day. With two major problems (what do I do)? I have had this discusion before on this site about what SM can due to you nerves/ Like your stomach. Any words would be helpful.
Love to all
Debbieducati
Love to all
Debbieducati
PTSM C5, C6
Debbieducati
 
Posts: 137
Joined: Fri May 18, 2007 10:35 pm

Re: Syringomyelia, terminal?

Postby chrisb » Fri Oct 26, 2012 11:32 am

I am one of the few that has a terminal diagnoses with SM. There isnt many of us. For me surgery isnt an option. They told me back in 09 that they had no idea how long i had it could be months or years. And now its 2012. My Syrinx is still growing but slowly. Mine starts between c4 and c5 in my neck and goes the entire lenght of my spinal cord. so surgery is not an option for me. They explained to me that as time goes on i will be in more pain as it grows. And they werent wrong about that! And that eventually I will become paralized. When that does happen I will die from complications of being on a respirator. I have decided along with my family to not think or talk about this. We just go about our daily lives as normally as possible. And honestly I am planning on living a very long time. :D My advice to you is not to let this get you down. We already live with this everyday of our lives. and some of us deal with alot of pain with it. The speicalists I have seen swear they ave never seen a syrinx so long or big. My symptoms are progressing just like they said they would. But they told me they have no idea how long i had left on this earth. It all depends on how fast the syrinx is growing. and so far im lucky that its growing slowly. But I am also very restricted in my activities. Im not alowed to walk more then a block a day. sit longer then 30 mins at a time. ( hard to do on long drives) no bending, pushing, or pulling of any type. and to not pick anything up that weighs more then a gallon of milk. They decided this route for me was best so tht hopefully the syrinx wont grow that fast. and yes I am considered totally disabled. But I dont qualify for disability.
But like I said DO NOT let this get you down. Or it will be the focus of your life, and not in a good way.
I did not read the article. Nor honestly do I want to. I hear it often enough from my own Drs to read an atricle about it. But This i do know for sure. no one knows how many have died from SM, because the cause of death is ALWAYS listed as the complication that killed the person. and not the SM itself. But ultimatly Sm was the main reason.
39yr old Army wife with 4 kids.
SM from c4-c5 thoughout entire spinalcord. Compressed C5 and L1. hydromyelia, Osteoporosis.
chrisb
 
Posts: 50
Joined: Sat Jun 05, 2010 12:01 am

Re: Syringomyelia, terminal?

Postby razzle » Fri Oct 26, 2012 12:06 pm

I know many people with a syrinx the entire lenght of there spine and are doing well... if the spinal flow is good there isnt any reason for surgery.... Keep up the great attitude , I think you will be dancing at your kids weddings.. hugs
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
User avatar
razzle
 
Posts: 1876
Joined: Thu Apr 30, 2009 4:55 am


Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 10 guests