So I'm meeting with a neurosurgeon in a few weeks, and my neurologist tells me that surgery is more than likely my next option given that my CM is now at 2 cm... close to an inch. I'm told that's a big deal, but like most of us I still am very in the dark on this whole subject. My question to you is though, if you knew then what you know now, would you still have had the surgery? Compared to your quality of life before the knife and your quality of life now... would you still do it?
It was absolutely worth it. I feel better now that I have in years. My recovery was super smooth. I will be 6 months post op on Mar 20th. In fact, I am leaving with my daughters tomorrow to drive from Tx to Disneyland for the week.
Based on all the experiences I have read on here, I've come to believe that surgery is more successful when it is done before co-aliments or problems arise. I am lucky that CM only took one year of my life.
Many Blessings,
Diana
DizzyE,
It took dozens of MRI's and over a decade before a radiologist finally saw my 18mm Chiari and new what Chiari was! Of course I had the dozens of MRI's due to my symptoms. Even though I had a difficult recovery and 8 years laters still suffer from symptoms I think IT WAS DEFINITELY WORTH IT! You need to remember that surgery isn't a cure, but a treatment to help stop the symptoms from progressing! Keeping that in mind, I think I have become a stronger and more compassionate person becasue of Chiari...it changes you and you can either be positive and ride the ride or fall victim to it!
I wish you nothing but the best!
XOXO Monique
Thank you for your encouragement. I guess since this is all so new to me that I'm a bit scared. I'm not scared so much of the surgery or what happens to my own self so much... what scares me most is thinking about my wife and baby and all the what ifs for them. I thank God every day for giving me my beautiful wife and daughter to provide for and protect and the thought of them struggling while I'm recuperating breaks my heart. How has everyone's family coped thus far? Obviously its been hard - but how hard?
I was lucky enough to find out I had chiari early into my Horrible headache phase of life- But when I found out I indeed had Chiari and looked at the symptoms I realized that I was symptomatic a lot longer than I realized.
I had my surgery less than a month after diagnosis, My first 3 months post-surgery were BRUTAL! As I had a few complications but I am now back at work full time as a Meatcutter in a grocery store (It is rough but I am making it!) And I also Pastor a church here in New Orleans
I do still have headaches not nearly as bad as before! I would indeed do it again! The key Is DO NOT push yourself after surgery! Listen to your body and only do what you can!
Pastor Kenny...
You gave great advice ....It too, took me mths to feel somewhat human!!! I totally agreee..DO NOT PUSH YOURSELF....and listen to the ole bod!!!!!!!
WOW..you are already back to work !! You go, Pastor!!!!
Peace,
Lori
THANK YOU DIZZYE!!! For asking for this question. I just got back from my NS ans she told that with my symptoms that it's basically up to me to the surgery. In 1 ear I have my hubby saying have it done I see what you go though every day/week with this....in the other ear I hear you know what could go wrong. But these comments have helped alot!!! THANKS!
It was worth it for me...I still have ongoing issues, but for sure it was worth it! I went from having a headache every single day to no headache at all! For that relief I would have done anything...Good luck and keep us all posted!
Crystal
Thank you all for your input so far, its been encouraging and empowering. If you feel like sharing more, please feel free. Tell me about your symptoms post op so I can prepare for what to expect. I'm more than likely going ahead with the surgery, I can't imagine going through this thing much longer if I don't have to. You're all awesome. Thanks again.
Hi! i'm going through the same decision process as you right now. I went to Dr. Oro and am considering the surgery, only if i want to- based on my symptoms- no syrinx. What's the latest with you? Have you set a date?
Jen
The closer you can have your surgery to the onset of your major symptoms the better. The pressure in your brain on your brain stem and in your spine is doing damage. The decompression surgery takes some of the pressure away. Everyone has a different experience but most of believe it was worth it. Just check how many times your NS has done the surgery and check outcomes as far as complications and having to redo surgeries. Good Luck, We are all here for you.
I am three weeks post-op. I had CM with a 20cm syrinx. My doctor advised me not to put off having surgery as the syrinx would only getting bigger and symptoms would increase. The operation in itself was not as bad as I imagined, it is not a walk in the park either, but the pain is manageable. Three weeks on, I am going good. Post-op MRI's show that the syrinx is already shrinking. I walk 3km everyday for exercise. I still have stiffness in my neck, but everyday I get more movement. Luckily, I have enormous amounts of support from my friends and my wonderful husband. I am sure that you will make the right decision by having discussions with your NS, family and friends. I do not regret having the operation. I would rather have this six months of having the operation and recovery, rather than years of pain and worry. Good luck.
Hi....
Totally agree with ya!!!! If one waits, say years before they get a correct Dx and still waits to have surgery the outcome is not as good as someone who is Dx'd early.
Case in point : My niece is an MRI tech, 23 yrs old. Her hospital got a new MRI machine and she volunteered to give it a 'test drive'..low and behold a Chiari Malformation and a VERY large syrinx was found. She had decompression shortly there after. She was out of work , I think, about 6-8 weeks..and now is symptom free!!!!!
She recently had a follow up MRI and that large syrinx is COMPLETELY gone!!!!!She had gone to a NL for head aches and right side facial numbness and the NL said it was STRESS!!!!! Gotta love it....I have never heard of stress causing facial numbness..head aches, sure....but Meg's NL only ordered migraine meds and NO TESTING!!!!! SHAME ON HIM!!!!!
wendyanne said:
The closer you can have your surgery to the onset of your major symptoms the better. The pressure in your brain on your brain stem and in your spine is doing damage. The decompression surgery takes some of the pressure away. Everyone has a different experience but most of believe it was worth it. Just check how many times your NS has done the surgery and check outcomes as far as complications and having to redo surgeries. Good Luck, We are all here for you.
Thank you everyone for your input and advice. I am definitely going to have the surgery done. I have yet to meet with the neurosurgeon though and my symptoms seem to be getting worse. I recently visited my GP and had her get on the phone and write some letters to get things moving faster. So now I just play the waiting game for a little longer. But yes, I will have the surgery.
I do have to admit though that the time I've had off work so far has been priceless time spent with my wife and daughter. It might sound funny but I'll be really sad once I finally recover enough to go back to work. So I am definitely making the most of a seemingly bad situation. Even the worst migraine can't put the slightest damper on the happiness my girls give me.
DizzyE, I take Zomig for my migranes and it really helps. It knocks me out if I have a full blown headache for abou 4 or 5 hours. Sometimes I can take it when I feel a headache coming on and take a half or a whole one and it stops the headache and it doesn't make me pass out. I am post op though and never had headache meds before my decompression so I'm not sure how it would work. Good luck with everything.
wendyanne said:
DizzyE, I take Zomig for my migranes and it really helps. It knocks me out if I have a full blown headache for abou 4 or 5 hours. Sometimes I can take it when I feel a headache coming on and take a half or a whole one and it stops the headache and it doesn't make me pass out. I am post op though and never had headache meds before my decompression so I'm not sure how it would work. Good luck with everything.
DizzyE, you are in my prayers! I am 3 mos post op and quality of life is transformed! Im still not where I had hoped to be yet, but it is not anywhere near the nightmarish bed ridden life I was living pre-surgery. Our children are 17 and 13. It is nice to be able to be apart of the family activities again (outside the home) :) Idk about levels of migraine medication, the NL has had me on Topomax, it has a generic, and it has bn working for me. It is effective for seizures as well as migraines because it works by calming abnormal brain activity. I looked it up to be sure I worded that right, lol!
You are a blessing to your family as much as you feel they have been to you!