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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.
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
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
Hi Jen,
Thanks for your response. I think I have to take Selma's advice and really talk to an NS who specializes in Chiari. The NS that I've gone to does not seem to really know much about it; he doesn't make it seem very urgent for me to get surgery. I know he respects my decisions... and maybe he's letting me make the decision for myself. But this doesn't help if I want to think long-term.
Can I ask if/how you got permanent nerve damage after the surgery, if you didn't have any symptoms prior to surgery? I hope it's not a stupid question, but what kind of pain is associated with nerve damage?
Thanks for your response. I think I have to take Selma's advice and really talk to an NS who specializes in Chiari. The NS that I've gone to does not seem to really know much about it; he doesn't make it seem very urgent for me to get surgery. I know he respects my decisions... and maybe he's letting me make the decision for myself. But this doesn't help if I want to think long-term.
Can I ask if/how you got permanent nerve damage after the surgery, if you didn't have any symptoms prior to surgery? I hope it's not a stupid question, but what kind of pain is associated with nerve damage?
It sounds like me and Selma have a lot in common as far as surgery and work. I thought. Well I'll have the surgery and be back to work in 12 week's. Well it didn't turn out that way. I had 2 CSF leaks that needed to be repaired so I had 3 surgeries all together, but this is something all doctors will tell you the possibility is having after surgery. My problem was my body rejected the stitches in the inside of my head. It has been a long year of recovery. On the 27th will be my 1st year anniversary of my surgeries, but in the long run it was worth it. I still have pain, but nothing like before surgery. My doctor has told me not to return to work, due to the job I did. It consist of a lot of lifting. Sugery is a hard decision for any one and decompression surgery was my first I ever had, but as I said. My life is at least now better than before surgery. Good luck in your decision.
COMMUNITY LEADER
Hi..we have had several members go to the WI chiari center...they r a chiari center and this is what they specialize in.....but, not everyone will like the same drs, but u also need a dr that is well experienced with chiari...so, do compare specialist to specialist...not NS to specialist....there is a difference. The main thing is u r comfortable with the drs knowledge, treatment plan and personality...
Here is a link to our list of Drs that the members here have used- it is not a referral- u still need to research all the Drs to find the one that is right for u-
http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
.....I am not back to work, nor do I drive....I have other issues including tethered cord and Ehlers-danlos...my major symptoms with chiari have subsided post op, but I have join pain, vision issues, IBS, and a bulging disk in an area of stinosis which is creating another CSF obstruction....this is y I do not drive or work as it can cause me to have drop attacks just like the chiari could and did.....so I have a bit more going on...but I am sooooooo much better post op than I was b4.
B4 surgery I was having vertigo, stiff neck, severe back pain to the point I could barely walk at the end of the day....I had drop attacks, and one I had injuries that resulted in surgery to repair and that was the final straw that got my DX! But it was yrs....I was in grade school when this all started....
We have a list in the Health Pages of questions to ask the NS.....here is the link-http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186
"selma"
Hi selmaS! I live near near Milwaukee so it's possible that I could go to the WI Chiari Institute. I did not find a lot of posts on anyone's experiences with this institute. Are they really specialists??
I have so far inquired about whether my insurance covers any meetings/testings that I might have with them, and I have yet to send them a copy of my MRI images. I'm really thinking about it though.
In regards to the pregnancy question, my NS did not seem to have a lot of advice. It's true that he is prob not a specialist, as he suggested that I use the power of social networking to find other people's experiences.
I generally am one to ask as many questions as possible, because I like to feel like I am in control (the more I know the better), but are there are any questions that I should not forget to ask before saying yes to surgery?
Any advice/thoughts appreciated.
Oh and selmaS, I think I read in other discussions that you are 2 yrs postop and not back to work yet? What was your condition like prior to op? And although you are not back to work, has your pain gone away?
I have so far inquired about whether my insurance covers any meetings/testings that I might have with them, and I have yet to send them a copy of my MRI images. I'm really thinking about it though.
In regards to the pregnancy question, my NS did not seem to have a lot of advice. It's true that he is prob not a specialist, as he suggested that I use the power of social networking to find other people's experiences.
I generally am one to ask as many questions as possible, because I like to feel like I am in control (the more I know the better), but are there are any questions that I should not forget to ask before saying yes to surgery?
Any advice/thoughts appreciated.
Oh and selmaS, I think I read in other discussions that you are 2 yrs postop and not back to work yet? What was your condition like prior to op? And although you are not back to work, has your pain gone away?
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