Syrinx

[Greatbleddyman]

I have had calf fasciculations for 3 years and other little symptoms, sensations and tics which I thought were psychosomatic to be honest.

I had a meningoceal repair at birth, I'm nearly 38.  THere is no evidence of Chiari malformation.

I acquired a minor foot drop a few weeks ago. In order to diagnose the foot drop I had an MRI which showed a syrinx in my lower cervical cord.

The neurosurgeon said that this would have been the cause of all my symptoms.  He said that as my syrinx was almost certainly congenital in his experience it was least likely to significantly deteriorate.

I feel like I have a time-bomb in me and worry every sensation is deterioration.  Everywhere I look there are horror stories.  Does anyone know what the chances of my having a syrinx for life with minimal symptoms are?

I had been doing a heavy weights program to rehab from lumbar disc surgery up to this.  The neurosurgeon surprisingly indicated it should be ok to continue which to be honest frightened me.

Any good news (and I know there are no certainties in life) would be appreciated.

[Franklin25]

Fasiculations in my calves, along with some muscle loss in my upper thighs, were among my first symptoms almost 20 years ago.  The fasiculations, which now also include muscle jerks/spasms, still occur.  The muscle loss has very gradually moved to my upper body recently, mostly in the neck and trapezius area, but there has been no loss of strength.  My tiny syrinx runs from T2-T9 and I've never had a neuro tell me to stop lifting weights or any type of physical activity.  I had headaches for many years but they subsided in the past couple of years.  My primary concern is how much muscle I will lose as I progress through later adulthood.  I'm currently 52 but remain very active.  Has there been any progression with your fasiculations and foot drop.

[selmaS]

  Hi I know so many look to how well known a Dr might be, but if they are not well know for the condition you have then it may not be the best choice for this issue.

It is like having a foreign sports car with a bad transmission and taking it to a well know transmission shop...when you need a foreign car transmission shop.

Some muscle cramps can be due to low levels of certain minerals or vitamins....have  a Dr look at those...and not knowing how Syrigomyelia affects people since I do not have it I do not know if the symptoms can cycle like they do when you have Chiari.....


  But I do know what you mean about grieving your future....I think everyone with a chronic condition does...know you are not alone.

[Greatbleddyman]

Thanks for the responses.  Don't know what to say about the weights etc.  This is a neurosurgeon of some renown and he was adamant but my layperson's understanding can't wrap my head around it.

His initial line was.....there is no bad news here. At present any symptoms I might have are irritations if anything - the chronic calf cramps at night being the worst.

The foot drop seems to be improving which seems odd to me in something degenerative or from experience can people advise if symptoms fluctuate of sytematically get worse?

I feel like I am grieving for my future.  I have two young boys and don't want to be a drag on anyone.

[selmaS]

  Sorry not sure how I posted mid sentence..lol...

As I was saying....for the rationale the fact a syrinx formed, is typically there is not enuff room for CSF to pass, so it pushes into the spinal cord and create the pocket of fluid known as a syrinx.....

Regardless what is causing the CSF to be obstructed  the cerebral tonsils in those with Chiari or a bulging disk or inflamed tissues due to an injury.....but something is blocking flow and causing the syrinx to form...and it can also be  scar tissue from prior surgeries....

[selmaS]

  Hi and welcome to the Chiari forum.

I know there are differences in symptoms for those that have Chiari along with  Syringomyelia and  those that have Syringomyelia alone......

Both these conditions can be congenital or acquired.......and those with congenital can go most their lives and not be aware of the symptoms...as we are used to them and consider them "normal" or consider them due to something we just did ...or a cold or flu we are getting over and not see they are connected to something else.....

I agree you should seek more info and  refrain from lifting weights until you get an ok from a  true Chiari specialist as they treat Syringomyelia as well.....

As for the rationale th

[Greatbleddyman]

Thanks for the reply - think the Chiari malformation is the difference.  The rationale I believe is that the spinal fluid had room to slosh around in my back when under pressure.

[Lottida]

Wow that's interesting that your doc was ok with weightlifting.  My husband has a syrinx & was instructed to avoid weightlifting due to the strain on the brain.  Now he did have a Chiari decompressed & maybe that's the difference.  I just thought that it wouldn't be safe since weightlifting causes strain which could occlude CSF flow on & off............CSF flow occlusion would make the syrinx worse with time (but I'm no doctor).  I guess every case is different.  

I do want to say that my husband lives a good life & has had his syrinx since 1997.  He did have to make changes in his life like quitting body building & does live with chronic neck/back pain everyday.   He has learned to deal with the pain with the help of medications, but pretty much can do what any other man can do except rollercoasters, bungy jumping ect.....  Not really sure that those are much of a sacrifice tho....lol!!!  I know there can be some horror stories with syrinx, but I think if it is closely monitored that permanent damage to spine may be avoided.  Good luck with you 2nd opinion & keep us posted!! :-)