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09/18/2010 10:51 PM

A 'possible' help for Syringomyelia (non surgery?)

missamelie
 
Posts: 281
Member

Hello...My name is Amy & I suffer from a spinal cord cyst due to Syringomyelia. I had surgery in 2006 to remove what they could of the cyst and drain also what they could of the cerbral spinal fluid. The surgeon inserted a 'shunt' inside of my spinal cord to help the cs fluid from forming again. This surgery did save my life and i was/am able to walk afterwards (with some numbness/loss of sensation in lower left leg). On the con side I now live with daily chronic pain. I do not know if it's from the shunt, scar tissue, the removal of three of my vertbrae, muscles, ligaments, etc.....but recently I found some infomation about traditional herbs that 'could' help break out syringomylia cysts. (i say could because I have not done such studies yet, but this is really truly worthly (im my humble opinion) to look into. (Note: I am not a doctor or any such, but this is merely me doing as much research as i can as to help myself & hopefully others in the future. there is a website (I will copy to bottom of this email) that states it DOES get rid of the cyst. I have NO idea if this works, but I do know from personal experience that taking herbs has helped me in other areas of my life. It may be good to talk to an acupuncturist and/or doctor of Eastern medicine about it, but I sure think it would be something to look into as the surgery has changed my life forever. Here is the website & let me know if you have any questions or answers. I do know some info about some herbs so maybe I can help. Blessings all.... amy Smile

http://hnmrc.net/pd173447506.html?defaultVariants={EOL}& categoryId=undefined

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10/28/2010 07:07 AM
kimberstar386
 
Posts: 11
New Member

Hi Amy. I am newly diagnosed with syringomyelia. If you could post the site for those herb's again that would be great. I clicked on it but maybe the site it down. Not sure. Hope you are having a great day. Kim

10/28/2010 02:51 PM
missamelie
 
Posts: 281
Member

Hi Kim. What level is your syrinx at?? mine was/is t11, t12 area. what have the doctor's/neurosurgeons recommended thus far? somtimes the 'wait and see approach' is best unless your symptoms are really getting horrible and having loss of muscle function. i had the surgery because i started to lose feeling/have numbness in lower left due to my syrinx/cyst/mass (so many things it has been called). It is definitely something to really think hard about regarding surgery. if you would like to talk more offline feel free to send me private message.

i think this herbal decocation is to help control symptoms, but not necessarily shrink the syrnix (but i may be totally wrong), but here is link and you can check each herb & depending on where you live perhaps find a really really good acupuncturist that specializes in herbs can help.

i am sending you healing energies & hoping you are not in too much pain. Blessings :

here is link...i hope this one works.

http://hnmrc.net/pd173447506.html?defaultVariants={EOL}& categoryId=undefined


10/28/2010 06:57 PM
kimberstar386
 
Posts: 11
New Member

Hi again. I'm not sure what level my cyst is at. We don't know know many details just that it is there. I'm really nervous about having surgery though if need be.I never hear anything good from back surgery patients. Thank you for the blessings, and right back at ya.

10/29/2010 09:43 AM
missamelie
 
Posts: 281
Member

Hi Kim. Yes, please please do as much research as possible & in my experience i think it is of utmost importance to FIND A NEUROSURGEON THAT SPECIALIZES IN SYRINX/SYRINGOMYELIA. this can be challenging bc sm is rare, but they are out there. This was something i did not do at the time when I first learned of having SM & should have. I do not know if the outcome would have been better, worse or the same, but in retrospect I should have researched more, but I was already having numbness and loss of feeling in left leg (although ironically enough I had zero back pain initially?), but i am sure it was soon to follow. my surgery consisted of a tri-level (t11,t12 and l1) laminectomy, insertion of permanent shunt, etc (some of this I did not know prior to surgery)....the cyst/syrinx did shrink so this will slow the loss of feeling in my left leg which I am grateful for of course, unfortunately now i have horrific lower back pain that is very, very challenging for me to deal with. Everyone is different and our bodies change and adjust differently so if i had to share the most important thing it would be to find a very experienced neurosurgeon specializing in SM...if you can get 2nd and 3rd opinions are always good also. i wasn't in position to do that at time, but i am grateful to be able to walk since the syrinx was putting pressure on my leg nerves. Blessings to you & i know it's easier said than done, but you will get thru this...take one day at a time & know you are not alone. Sending you all the healing energies...keep us posted. bye for now, amy Smile

06/18/2011 03:59 PM
Cinsublime
Posts: 3
New Member

I have a spinal shunt at C7 ..have you had any malfunctions? Pain?

06/19/2011 09:10 PM
missamelie
 
Posts: 281
Member

Hi Smile

I've had mine for going on five years and so far, so good (regarding infection or not moving), but pain is a totally different story. I love with chronic pain...now , whether this is due to the shunt, opening of cord, laminectomy or scar tissue (combo of all) i am unsure. How about you???

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