Treatment or support for syringomyelia?

I am 19 years old and I have syringomyelia. Apparently my case is mild (as of now) but I have been experiencing pain and tension in my lower neck/upper back area every day for the past year and a half. After about half an hour of being on my feet, my back starts to hurt mildly. Then the pain just gets gradually worse over time until it becomes unbearable and I have to either lay down or sit in a chair that gives me proper back support. I absolutely hate it. Doing normal things like spending the day at a museum, the beach, the mall, amusement parks, ect are no longer enjoyable for me. I am very frustrated that I have to deal with something like this at such a young age. I feel like I can no longer have a normal and happy life.

I am in constant fear that my symptoms are going to get worse as syringomyelia does typically worsen with time. Whenever I think about my future, all I do is wonder about what kind of physical condition I will be in.

I am wondering if anyone else on here has this condition. If so, are there any exercises or stretches that are improving your symptoms? Also, do you think losing weight in my chest area will improve my symptoms? I feel like if I had less weight to carry around on my chest, there will be less tension in my upper back.

Sorry this is so long. Thank you for reading.

[selmaS]

  Hi and welcome to the Spinal Cord C/D forum.

We do have a Chiari malformation forum, and many with Chiari also have syringomyelia, a syrinx...this is caused either by a trauma to the affected area or is a congenital condition like chiari that obstructs CSF flow and a syrinx forms.

Is ur syrinx in ur cervical spine, thoracic or lumbar? Were u checked for chiari as well?

  Usually a syrinx is too small to do much for, once they get to a certain size they may use a shunt or a stint to help drain the CSF to allow the syrinx(cyst) to collapse and that will stop the pressure it puts on the surrounding nerves.

U may want to pop over to the Chiari forum as well and read some of the threads there on syringomyelia-http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc

And I do have a article in my journal on shunts...if u r interested in that-
http://www.medhelp.org/user_journals/show/205805/Differnt-types-of-syrinxs-and-shunts--article-by-DrJJane-Jr--MD?personal_page_id=197028

  "selma"

[Irmgolinchen]

I also have a syrinx, they found it about 4 years ago when I was feeling like I have fluid in my head.  Make a long story short, NO DOCTOR would believe me when I told them how I felt.  Die only one is DR. Oro, in Denver.  I been feeling pretty lousy and try to cope with every day life at home, at work etc.  You are so young, I just know that there will be help for you.  I gave up on it!!!  I been having some severe nerve pain in my jaw, upper teeth feel like someone is putting electrical currents through my teeth.  I don't want to scare you, but you need to get help while you can.  I am 59 now and can barely take it anymore.  I take Norco, but not every day so I wound become dependent on it.  Hopefully my doctor will believe me and have another MRI done to see if the Syrinx got bigger.  I hope to see Dr. Oro.

[selmaS]

  Hi and welcome to the Chiari forum.

Dr Oro is CO is a fantastic Dr to see for syringomyelia and related issues, we have many in the Chiari forum that have been to him and had surgery for chiari.

  I know the journey with these conditions can be very frustrating as finding the right Dr that knows and is experienced with these conditions can be diff to locate, but once u do, what a diff it makes : )

Do keep us posted on what Dr O says.

[zoiesmom07]

Hi Julie,

I am 24 and I was just diagnosed on Monday as having a Syrinx, mine runs from C1-L1. I've been having a lot of pain, numbness, tingling, headache, a sensation inside of me that's like a cold sensation that stays. Its hard to explain! I am totally worrying about the physical part of it because I have 4 year old daughter and if I were to become paralyzed our house would not accommodate so were trying to decide about building a handicap friendly house. I know that's going off topic but I am terrified. Has anyone had a problem with friends and family leaving when you do become paralyzed? They have ruled out Chiari Malformation, trauma and a tethered cord. I went for a cervical and thoracic MRI with contrast yesterday to find out if there are any tumors. The doctor highly doubts that we will find any but he wanted to rule everything out before proceeding! He said there are some other causes but said we wouldn't get into those right now. Does anyone know what he's referring to? I am also trying to decide whether to blog because I haven't found many blogs and my family and friends keep asking all these questions, so I'm thinking that a blog will help not only my friends and family but if someone else recently diagnosed finds it then all of the what Ifs and questions I had when I was diagnosed may be able to help others. Also I'm from Bay Minette, AL which is close to Mobile and that's where my awesome Neurosurgeon is Dr. Shawn Clark. He's not wanting to do a shunt right now because of the risks and I am so young. He said when my symptoms progress he's going to do it. I hate waiting and not knowing from day to day of I'm going to be able to walk again!!!! It terrifies the crap out of me!!!

If you ever need to talk I am here, we can learn together!
Amber McDonald

[lisaob1]

hi hun,my daughter has a syrinx.T6-T11,9mm,she is amazing,and i worry like mad about her,keep posting your progress...i wish u all the best,i know how hard it is to live with it...god bless hun xx keep posting x

[pulse222]

My 4 yr old son was just diagnosed with this and I am so concerned and nervous. If you have any information about this disorder please share it with me.

[selmaS]

  Hi and welcome to the Spinal Cord C/D forum.

Dose ur 4 yr old son also have Chiari?...did the Dr say if his syrinx is congenital or acquired?

There are more with Syringomyelia in the Chiari forum-http://www.medhelp.org/forums/show/257?camp=msc

[kcarp71]

i too have been diagnosed with a syrinix approx 2 1/2 years ago after having an acdf of c4-c5/c5-c6.  i experience a whole lot of pain like you guys no matter what i do.  my family dr has recently referred me to mayo clinic and the doctors have reviewed my case and have accepted me.  will let you guys know what i find out.  i would not wish this pain on my worst enemy.  my heart goes out to all.

[selmaS]

  Thanks for sharing with us that u were accepted and that u r willing to share what u find out....a syrinx is a diff condition to treat....

and as u all know can be very  painful....Good Luck at  Mayo