I've been recently diagnosed with a Type 1 Chiari Malformation. My brain is lower down at the back of my head and pressure is caused by the skull and top of the spine, is it correct to call this type 1?
Anyway I had an appointment at the Neurosurgeons last Saturday to discuss how to progress, not many options were available it was basically surgery or nothing.
The pain I receive when I strain myself is constant, so every time I bend down or lift something heavy I get pain in the back of my head. This is accompanied by headaches at the front of my head which cause me to stay in bed, I was also told that surgery will not affect those headaches.
The surgery would involve removing some of the skull and top of the spine to give more room to the brain.
So basically I'd like some feedback from anyone who has had this type of surgery or know people who've had this surgery. I understand that the surgery and chiari differ from person to person so it's hard to judge my situation based on someone else's experience.
However I'd like to ask a few questions:
- Did you find the surgery life changing? This is probably the thing that is most important to everyone but we were told some of the risks from the surgery and it's a big chance to take if it doesn't always help.
- How quickly did you recover from the surgery? I understand that this also varies but a general time scale from someone who's had the operation would be helpful.
- How soon did you see results?
- Were there any side effects from the surgery you received?
Thanks a lot for anyone who takes the time to read this. It's a big decision for me so I'm hoping to get as much input I can before I make the final choice.
Lots and lots of discussions here about surgery (and a separate Discussion topic all of it's own) so you may want to do some searching and reading, Malefic, while you wait for responses. FYI the search facility is at the top right of your screen.
My daughter had decompression surgery 6 years ago today! She had a severe case. Losing use of left side of body headaches daily. She was 5 at the time of surgery. Since the surgery she has minor headaches every 2 to 8 months. She experiences tingling and sleepy type feelings in her arms and legs at times. Forgetfulness occasionally. However with all that said. I would do it again. MRI done this year and still doing great. We had the brain matter burned off because it was dead. It was that bad. But like I said we would do it again.
July 29th (5 weeks ago) I had decompression surgery. I had about 1 inch of the skull carved, as well as the back spiney processes of Cervical disks 1 and 2. My Neuro was able to complete my surgery, pulling 9cm of my brainstem out of my spine. I have been recovering quickly and well, but I have my moments. I am told to expect the results at 6 months post op, will show us what changes will stay permanently and which ones won't. I had relief from the pain and pressures in my spine immediately.
1. YES, this is life changing. Not just the surgery but the disease.
2. Recovery from surgery. I had surgery on Thursday at 1pm, I was discharged from ICU Friday morning about 11 am. NOW, this is not everyone...... I just told doc that he needed to give my ICU bed to a sick person. I am very afraid of blood clots, and I could not walk at the hospital as freely as I wanted to. My husband is also an RN, so that was persuasive.
3. I saw relief of the headache immediately. Other symptoms that I had occur sometimes, but not as difficult or as severely as pre- op.
4. Right now, I am having major visual acuity problems. This was present before surgery, and is getting worse now. I do not know for certain that this is from the Chiari, or just my old eyes in need of help.
I hope that helps and eases some anxiety for you. This is a very huge hurdle in our lives, but you can get through this. If there is anything that I can answer directly for you, feel free to ask. Any thing at all that I can, I will share with you.
Surgery did not help me, the headaches came back. After surgery, I found a headache clinic near me. I received botox injections for several years. I stopped the injections due to a surgery for a mid-cranial aneurysm in 2010 and to this day, I am still headache free, without the botox. I don't know what stopped the pain, I'm just glad it is over. Every once in a while, I feel a headache coming on, only to have it go away.
My son had the surgery when he was 8 1/2 and is now 10. His only symptom was a headache at the top of his head, initially only from exertion and then when he shifted from a lying down position to sitting up. He has been headache free since the surgery. He was back in school 2 weeks after the surgery. Of course, children are more resilient than adults. Good luck!
The different classifications pertain to how the herniations happened and what parts of the body are involved. You are correct with Type 1.
I had the surgery May 2012. I was under restrictions for 8 weeks. My headaches have mostly resolved. Other issues have not. I had a very large syrinx and this aspect has caused some unresolvable damage and symptoms. Muscle spasms, weakness in my extremeties. I’m glad I had the surgery, even if things didn’t significantly change because it improved my chances of things not getting worse.
Good luck!
I don't mean to sound like a broken record, but please have a flow study done. Your headaches sound like mine and I ended up with a shunt, which made all the difference.
Surgery for sometime helps.. I was diagnosed with Chiari Type 1 in 2011. I had my surgery then. I was in ICU for 1 night. I was released in the hospital 4 days after. I went back to work 1 month after.I was pain free for 4 years which I thought would be forever. But now I could not describe to you the pain am going through every morning from my stomach to the parts of my body. I feel as if I have flu. The problem with ACM is not curable. It has no meds.. But still I suggest you undergo surgery..
Pam, this is very good information - I am chiarian as well also waiting for surgery...just think..how many people who do not join here because they are recovered...its great it make me feel positive and brave...to have it done
Mama B said:
Hi!
July 29th (5 weeks ago) I had decompression surgery. I had about 1 inch of the skull carved, as well as the back spiney processes of Cervical disks 1 and 2. My Neuro was able to complete my surgery, pulling 9cm of my brainstem out of my spine. I have been recovering quickly and well, but I have my moments. I am told to expect the results at 6 months post op, will show us what changes will stay permanently and which ones won't. I had relief from the pain and pressures in my spine immediately.
1. YES, this is life changing. Not just the surgery but the disease.
2. Recovery from surgery. I had surgery on Thursday at 1pm, I was discharged from ICU Friday morning about 11 am. NOW, this is not everyone...... I just told doc that he needed to give my ICU bed to a sick person. I am very afraid of blood clots, and I could not walk at the hospital as freely as I wanted to. My husband is also an RN, so that was persuasive.
3. I saw relief of the headache immediately. Other symptoms that I had occur sometimes, but not as difficult or as severely as pre- op.
4. Right now, I am having major visual acuity problems. This was present before surgery, and is getting worse now. I do not know for certain that this is from the Chiari, or just my old eyes in need of help.
I hope that helps and eases some anxiety for you. This is a very huge hurdle in our lives, but you can get through this. If there is anything that I can answer directly for you, feel free to ask. Any thing at all that I can, I will share with you.
Hi there, I am glad you put this questions...I am waiting for the surgery as well..you have got lots of good answer here..my neurosurgeon asked me to see some other 2 surgeon just to get another opinion..but there is always risk for the operation.., but if you think about it..our life is also at risk..if we cross the road there is a risk...if we fly there is a risk..if we drive a car ..there is a risk that is why we take life insurance or car insurance...imagine how many people who do not report it here or joining this forum because they fully recovered. So..I have read quite lots of information..perhaps majority of them said that they are glad that they have done the surgery..but you have to understand the fact that chiari is a condition is not a disease so there is no cure..the operation I understand to be done to prevent our condition to get worse so that we can have a better quality of life..so be brave..think and be positive.. I am sure your surgeon know best