Hi, I’m 15 and I’ve been diagnosed with Chiari Malformation about 3/4 weeks ago, I know little about this condition but I have been offered to have an operation. I also know little about the other effects or potential dangers that come along with the operation. At the moment I’m trying to decide whether to have the operation or not, any personal experiences/helpful advice anyone could offer, I would be very greatful for
Thank you! It is having a major impact on my life and unfortunately pain killers have stopped working and won’t relieve any of the pain. I think I haven’t decided yet as I haven’t really been told what will happen after the operation as well as some of the things that could happen if the operation went wrong
Hi LN, I do not have Chiari, I’m just a helping hand here, however I do have genetic degenerative disease that targets the spine. I am affected from the top of my spine, which starts about mid smell to the top of my tailbone. I have seen my share of ortho and neuro surgeons and will tell you this, surgery does not always ale you better.
See as many Chiari aware neurosurgeon as you can. Knowledge is power. Learn all you can about your particular malformation so that you can ask the right questions and understand the answers.
Put your questions on a notebook and make a copy for them.
Talk to your parents, I realize that you want to decide for yourself, I would too, but let them in on this. Daycare have you some good advice. Every good Dr I have been to, including surgeons are very careful and slow to recommend surgery.
I send you my best wishes and hopes for a good outcome.
Wishing you wellSK
You have had good advice. Here is my experience, ANYTIME as surgeon offers surgery as and elective/possibility. be very leery. Anytime that happens to be BRAIN SURGERY - run and run fast. There are far to many Neurosurgeons that have moved to Chiari Surgery as a profit center. They are ethical enough to not push the surgery buy sly enough to give the impression its a good idea.
By no means am I saying that surgery is not the right choice for you, but I would suggest that if someone was to open up my head and remove part of my skull, I'd want to be darn certain. I would suggest at the very least you see another surgeon for another opinion. This surgery fails 30% of the time. In the main menu above there are some resources including a list of questions for a Dr. appointment by our founder. Ben Munoz had treatment for another brain issue, but is very familiar with the process. Its a great guide for dealing with your docs.
Hi, I was diagnosed Sept.2014, the symptoms have increased even since then. I had the CSF flow study done in Dec. that shows I have a greatly diminished flow and the NS spoke to me about the surgery. I have heard good/bad, great/horrible or no change from people that have had the surgery done & most times have the decompression surgery more than once :( . The most important thing to remember is that the surgery is NOT a cure, unfortunately there is no cure. I just had the nerve blocks done to see if that will help with the headaches. I'm trying everything before I have the surgery, it is a last resort for me. I wish you all the best!
Hi SK.
I was diagnosed with Chiari abt 4 yrs ago. Initially I saw my Neurologist. .but he referred me to a neurosurgeon. …who referred me to another neurosurgeon. .several MRIs later…I was told that my herniation was 19mm and that surgery could alleviate it. Ive always had the weird headache. .but there was no guarantee that the surgery would fix that either. The fact is there is no guarantee. Reluctantly I scheduled the surgery 2yrs ago…but didn’t go through with it because of recurring nightmares. Someone on this site told me that I would know when I’m ready and that having the surgery shouldn’t give me that much anxiety. So I didnt. Last year in Sept I went back for MRI my herniation was at 15 mm. Not all on its on but with the Grace of God!! Prayer works.
I said all this to say. …you are young, keep doing your research and follow your heart. There are no guarantees with this type of surgery…so it does take a lot of thought and planning. If its just headaches, then a lifestyle change may be necessary. .that what I did. But if its really affecting your daily life…continue doing your research. By all means get a second opinion! I wish you the best.
Blue
Hello,
I had a chiari decompression about 15 years ago. My headaches were so bad, and now they are gone. I had a wonderful military surgeon at Walter Reed. She was world renowned and fantastic. I wish you the best. I know everyone's situation is different, so you really need to find a great doctor and follow their advice. I would say that if you can manage the pain in your everyday life, then do that. But if the pain is too intense, I would think about surgery. I'm thinking about you. My heart goes out to you. I have kids around your age.
Thank you all for some wonderful advice, I’ve decided to go see another more experienced NS before I make a decision about the operation but as it stands I would like to have the operation as my quality of life is deteriorating. Honestly I don’t think I can cope with the constant pain everyday and the thought it could get worse is an awful thought. Thank you for all your advice I am extremely greatfull for.
LN, please forgive my typos, arthritis makes it difficult for me, especially on an iphone with those tiny keys, hopefully you got the drift of my post.
I wish you well, I wish you ALL well, I really do. Chronic pain is life changing!
BTW, If you are interested in ever seeing a pain management specialist, start asking these neuros' who they would sent their son to, that way if you ever are in need, you know where to go, only go to the very best!