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CM Type 1 & Syringomyelia-- surgery?
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.
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.
COMMUNITY LEADER
Hi and welcome to the Chiari/Syringomyelia forum.
It is true many wait to have surgery until symptoms r such that we feel we have no choice...BUT and I mean BUT...if I had my dx sooner I mean yrs ago, I may have had the surgery to help prevent all the yrs of pain I did have...who knows it is hindsight...and the other issue that helped me go forward with my surgery was this...the symptoms cycle, and many times we r unaware of just how many we actually were experiencing....plus, this is a neuro condition...we may not always FEEL it ...if our condition is so bad it is possible that we will not feel the pain if the nerve is pinched...and if left pinched too long it can result in perm damage.
The best thing u can do is see a couple of true chiari specialists to get opinions....as we r all diff our recovery rates will differ....some have gone back to work, others have not...it all depends on what else is going on, if they have nerve damage etc.....
Also, ask the Drs about pregnancy and chiari and syringomyelia...it adds to the pressure....and they do suggest u have a C-section.....
I had a natural birth with my DD this was yrs b4 my chiari Dx, and I had problems, was in the hospital for 5 days with a CSF leak...and had problems holding my DD as it hurt so bad and I had no idea why.....I did get thru it, but, I had no idea, and I did not have a syrinx.
Talk to true chiari specialists as to what is best for u, and how this is affecting ur over all health.
"selma"
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You and I have very similar situations. I had a 9 mm herniation, considerable constriction at the base of the brain, and a very large cervical syrinx that was discovered with my first MRI. Like you, I had almost no symptoms at all. However, my NS was very concerned about the growing syrinx and worried that I would become very symptomatic with irreversible damage if I didn't do something about it ASAP. I had surgery almost immediately. It was successful, the syrinx has collapsed, etc. but the syrinx caused permanent nerve damage that can not be fixed.
I absolutely would have had surgery sooner had I known I had the condition. If I had had the surgery when the syrinx was smaller I might not have to live with this nerve pain the rest of my life.
If you watch any of the webinars on Chiari, you will find that the NS's who teach them all say that a syrinx that is growing must be dealt with to prevent permanent cord damage. I would be very afraid of waiting through a pregnancy because not only could the pressure of the pregnancy itself cause the syrinx to grow but if you did develop pain and symptoms you would not want to have to wait until after your pregnancy to do anything about it.
If you are in good health otherwise and don't have any complicating factors like diabetes or heart disease or are overweight, you are likely to get through the surgery well and be tired but back on your feet in a couple of months. However, Your NS can give you a better idea of your timeline than we can because it really depends on your health history and other conditions.
Unfortunately, from everything i have been told and researched, having a syrinx that has shown any signs of growth makes surgery almost a given. No one gave me the option of not having surgery. They didn't even want me to wait more than a couple weeks. I now wish I had known about the darn syrinx years ago so I could have had a simpler surgery on a much smaller syrinx! Also, the younger you are when you have surgery, the faster you will heal and get back to your normal life.
Keep us posted on what the docs say! Good luck!
Jen