Syrinx

[stephanie48]

I have just recently been diagnosed with a syrinx between my C4-C5. I am experiencing chronic pain in my upper back and neck, weakness and aching  in arms, headaches that start out as tension and turn into migraines, weakness and aching in legs and sometimes the pain shifts from my upper back to my lower back.  Is there anyone out there that can tell me what pain remedies or alternative therapies that will help with this?  I work in the full-time and I find that some days that I am in so much pain that I can't make it to work.  Will i still be able to work in the long term?

[selmaS]

No worries u r welcome : )

Thanks u have a great day too : )

"selma"

[stephanie48]

Thank you so much SelmaS for all of your information.  And yes I did get your other comment on my other post. The more that I can learn about this condition, the better.  It's also so nice to have contact with people that have these sorts of conditions because if you don't have it and you don't experience the symptoms I find that people just don't understand what a person goes through who does have it.

Anyways, I had better get my butt ready for work - have a great day :)

[selmaS]

Hi I see u joined the chiari  forum and I did post a comment there....

"selma"

[selmaS]

Hi, I do not have a syrinx, but have chiari malformation which is a related condition...I did have surgery last May....so I am just over 1 yr post op.

I still have some issues/symptoms as with many with these issues...u can slow the progression, but there is no cure...just treatment to help lessen some of the symptoms.


I went to The Chiari Institute in NY, they also treat syringomyelia (syrinx).

"selma"

[stephanie48]

Hi Selma

I finally got fed up with my family Dr. and called the Neurosurgeons office for a copy of his findings.  I have a syrinx from c5-t1 (his terms were lower cervical, upper thoracic syrinx) and a disc bulge between c4-c5 but not a bulge of significance.  He said that there was no chiari malformation or evidence of stenosis. He also states that this should not be treated surgically but after researching this, it seems that surgery is the only solution.  Any advice anyone could give me would be great.  Also does anyone know if there is a specialist in this field in British Columbia????

[stephanie48]

I have been told by the neurosurgeon that it is not big enough to do surgery. I am on a 9 month waiting list for another MRI where they will do the IV with some sort of dye so they can see the flow of my spinal cord. He said that I was most likely born with this condition and it has only started flaring up in the last 4 years.  I used to go weeks at a time with with no symptons and then get a flair up that would last for 2 - 3 weeks but am now getting symptons on a daily basis.  I had to take 2 days off of work last week because the pain gets so bad and it is triggering migraines.  It all depends how bad the pain gets.  Most of the time I just work with the pain but it is taking it's toll.  Thank you both of you for getting back to me :)

[walling28612]

have you had  your syrinx operated on, who long where you out of work and did it stop all the pain

[selmaS]

Hi....do u know if ur syringomyelia is congenital or acquired?

Do u know if u have chiari malformation as well?

many times for a syrinx they can be too small for a shunt or a stent, so PM is the only way to treat....if  it is large enuff to  imping nerves then they may attempt surgery.

U deff want to find a dr that deals with this and chiari on a daily basis to get the best care.
Chiari and syringomyelia (syrinx) are related conditions so we do have members in teh chiari forum that u can share ur concerns with.

http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

"selma"