Scared and confused

[Jmontre]

I'm 20 years old and I've been suffering from tremors in my hands since I was at least 12. I've lost some feeling of hot and cold in my hands, more so in my left hand. Also my neurologist did a pin prick test on my hands and I don't feel much in my left finger tips and forearm. Since my symptoms aren't very severe, I expected the neurosurgeon to say I would be fine with just monitoring and no surgery would be needed. That was not the case and the neurosurgeon suggested surgery to correct it and cure my syringomeylia (sp?). I was not prepared for this and I'm scared. I didn't think it was that serious. I've been a rugby player for 4 years now and I've almost always been involved in a sport. Will this slow me down? Will I never be able to play again? I'm going to get a second opinion from a neurosurgeon in my hometown and if he also recommends the surgery, I will probably have it done during my winter break. I am in my senior year of undergrad and I really hope it doesn't affect my studies.

[selmaS]

  Hi,,,many are born with a syrinx and depending on the size they do not do nething with them....so many do not inform us of many things including Chiari, tethered cord...so I understand ur frustration.

And the fact that the syrinx may have been too small to do nething when u were younger, they should have informed u and monitored it to see if it was growing....

That is all spilled milk at this time, take what u know now and go forward....

Many times as Frankie mentioned nerves impinged from a syrinx can   awake and release the symptoms....

[desertstorm2009]

My daughter was finally diagnosed at age 17. She suffered and got worse for years. Then she found Dr Oro, had the decompression surgery nine years ago. Her recovery was amazing. She has been well since. She runs, bikes etc... None of us asked for this, but we weren't given a choice. Acceptance takes time. At least we have treatment options right? Good luck dear you will be fine. You are young and strong. You'll be on the other side of this before you know it :-) Lisa

[frankie_rush]

The things with nerves is they can regenerate, it dows take time.  The Doctor you are seeing let him know everything and discuss your sports.  Yes that is how this does with all of a sudden.  Mine did that also, poof it started and didn't know what.  Mine was swallowing and vision blurring and balance issues.  I didn't have any headaches.  After surgery, everything is fine, I do have some isses with tingling but nothig serious just nerves healing.  Yes there is some that have had it and it didn't work, but you also have the ones it did work.  I am one it did work and I am glad I had the surgery.

[Jmontre]

Also another thing I'm confused about is that I had an MRI when I was 12 and the syrinx was there but the doctor didn't inform me. That was the first time I went to see the doctor about my tremors. I wasn't informed then and I just learned to deal with my tremors and continued life as normal including playing rugby. Even with having my syrinx for that long I've never had any serious problems. I guess I'm just confused because nothing has happened so far and now all of sudden I have to stop many things in my life that I enjoy.

[Jmontre]

I really hope it doesn't affect my studies because I am a chemistry major. I want to research for the rest of my life. The tremors in my hands already affect it enough. I've read some stories of some people's condition worsening after surgery and that's what worries me the most.

[Jmontre]

Thank you. Rugby is a passion of mine and I'd definitely want to play again. This year I am not playing and it really hurts me not to be out there with my girls.  

[Jmontre]

I guess I didn't explain that part. My syrinx came from CM1. The specialist that I'm going to see did his PhD thesis on Chiari malformation.

[dare2dream11]

Hi was in the same position as you. I was a collegiate athlete faced with the same situation, well a similar one. I was 21 when I had my surgery to correct my Chiari 2 and syringo. I can assure that waiting will only make things worse. I did not receive a diagnosis until I could not walk. My symptoms began the same way tremors, minor differences in sensation and they continued to progress from there.

After surgery life began to return to normal. It did take some time, but I can run again, mountain bike, surf and do everything I loved to do. Prior to surgery I did play rugby but have not gotten the courage to do so again, but imagine that as long as your surgeon says it is okay you will be back on the field if you want to.

I wish you the best!

[frankie_rush]

Hello neighbor, I am from New Tazewell about 45 miles north of Knoxville.  I would geet one from a Chiari specialist. Yes I know it can be scary, when I found out I was scared to death.  After reading here and talking to my doctors I calmed down a whole lot.  Far as this affecting your studies it shouldn't , you may have to change some things around.  But far as rugby, I would stop that.  I had a large syrnix C2-C7.  It does take time for the nerves to heal.  So any thing that cause a big jar on the neck or specially where your syrnix is at don'ty be doing.  I do understand about being active, I was in the Army and the Marines for 16 1/2 years.  Tried to ride any roller coaster I could, jumped from planes, any carnavil ride except the ones that went around real fast.  So when this was found out, it all stopped.  But there is still things I can do but different ways.  The best thing to do is talk it all over with your Dr.  Being scared is normal.

[selmaS]

  Hi and welcome to the Chiari forum.

May I start by asking how u got ur syringomyelia?...A syrinx forms either from an injury or an obstruction to CSF flow.....did ur Drs say how urs formed?

A syrinx left untreated can lead to perm nerve damage....and depending on how long the nerves have been impinged u may have some damage already and u will not want it to get worse.

Many of us with Chiari which can cause a CSF obstruction and lead to the formation of a syrinx have surgery to prevent a syrinx from forming if we do not already have one...and those that do have surgery to slow progression and restore CSF flow in hopes the syrinx shrinks.

My suggestion would be to see a Chiari specialist to see what they suggest as they also treat syringomyelia.

Keep us posted  on what the next Dr advises.