CM Type 1 & Syringomyelia-- surgery?

[sunnyset]

I experienced pressure headaches that was associated with straining, laughing, exercising a couple of years before getting my first MRI in 2009. From the MRIs (brain & cervical spine), I was diagnosed with Chiari Malformation Type 1 and syringomyelia. I recently (last week) requested follow up MRIs to see if any changes had occurred-- to see if my condition had worsened. Well, it turns out that my syrinx has basically doubled in size. My pressure headaches come and go and I can usually sleep them off. Other than headaches, I have not had any symptoms associated with syringomyelia-- muscle weakness, numbness, blurry vision, etc. My NS seemed a bit surprised that my health was so great considering how much the condition has progressed.

I asked him if decompression surgery was necessary since I am not experiencing any side effects, etc. He said that the only way to make the syrinx smaller is to have decompression surgery, and that it's probably just a matter of time before I start having symptoms. He said that my body has been able to withstand the pressure of the syrinx... I'm not sure I quite understand.

Anyway, I definitely want to nip any problems before they arise.. and I guess I'm curious what your thoughts are. I know that the decision is ultimately mine, but as I'm reading some of the discussions here, it seems that a lot of you elect to get surgery after you've already experienced some life changing symptoms. In hindsight, would you have gotten surgery BEFORE any problems?

What are your experiences with decompression surgery? Were you able to go back to work? How long was your recovery? If there's anyone out there who had a similar background (CM Type 1, Syringomyelia without symptoms) and got surgery, what was your experience like? Recovery? I'm curious because I am wanting to start a family in the next 2 years.. and wonder if I should get the surgery before or after I become pregnant (leaning toward before because I don't want to have a baby if I can't care for him/her!)

Thoughts? Thanks for reading. Sorry it was such a long post.

[Jenn444]

First of all, I did forget to say earlier that I absolutely agree with Selma that you should not let anyone do the surgery who is not Chiari specialist. It is very important that the right amount of bone be removed and that the duraplasty is done well to prevent further herniation and leaks.

I know, it is certainly counterintuitive that I didn't have more symptoms and that the damage only became apparent after surgery. First of all, as your doctor has told you, we are very unusual NOT to be in pain with a growing syrinx and a Chiari. My NS said my MRI's were some of the worst he has seen. This was part of the reason he was so concerned. He felt that the nerves in the cord had adapted slowly to the slow growing syrinx and though compressed were for some unknown reason not sending the usual pain signals. Hs concern was that I was going to go from nothing to sudden rapidly expanding weakness and bladder trouble, gait issues, etc. When the syrinx collapsed after surgery, I did start to have nerve pain. All of my docs agree that my pain now reflects what was there all along- nerves that were permanently damaged due to years of compression from the syrinx. Once the pressure was released, the nerves had all this space to suddenly deal with and are now misfiring screwed up signals to the brain in an effort to try and stabilize. Apparently this is a not uncommon occurrence after people have surgery for advanced spinal stenosis. Once the pressure is released, the nerves actually are more active and the damage more apparent even though the progression has been stopped. Of course, this is the most critical point. The progression of my condition has been brought to a complete halt and that is what you hope for with your surgery. Even though I have nerve pain, I hopefully will never have to worry about permanent muscle weakness, problems walking, potential paralysis, bladder control issues, etc. that can be caused by a syrinx that continues to grow and doesn 't collapse after decompression.

My nerve pain is deep burning, tingling, and numbness in my feet and sometimes hands and  face. It sounds horrible but it comes and goes and  i am getting used to it and am determined to stay off all meds as long as I
can. I actually have a day every now and then when I barely have any pain. Other days, especially when the weather is bad, it is very noticeable and frustrating. But, it beats weakness and paralysis so I try to count my blessings.

Now that I have probably scared you to death Sunnyset, let me strongly empathize that this is MY story. Your syrinx may have only been around for a few years and maybe hasn't caused anywhere near the damage mine did. You may have surgery and be good as new afterwards so please don't assume you will follow my path!  Also, my NS and neurologist keep telling me that nerve damage continues to improve for a very long time and says that I will continue to have improvement even  though I am one year post op so I am hopeful things will only get better. I live a pretty regular life these days and try not to dwell on any of this or be consumed by it.

But, you can see why I would really encourage you to get it taken care of while the syrinx is smaller and before more time passes. It also really helps if you are in good physical shape pre surgery so I would focus on eating well and getting lots of SAFE exercise and shedding any excess pounds so your body handles the beating from surgery better!!  It will make your recovery much easier.

Please feel free to message me if you have other questions and good luck with your Chiari specialist!

Jen