I was diagnosed several years ago after a routine visit to my nuerologist for headaches. He told me not to worry because it wasn't significant. Two years and a lot of weird headaches later my chiari progressed from 10mm to 19mm this Spring. Ive seen two different NS. The last one sent me for MRI that lasted 2hrs. My only symptom is headaches. And they are episodic. No more than 30sec to maybe 10 min if I don't take something and lay down. The last surgeon told me that is was up to me to do the surgery...leaving me with a lot of questions. I have toiled with this decision for months and just recently scheduled the surgery. But now I am wondering , if this is best seeing that the only problem I'm having is headaches. I'm wondering about recovery, bills, longterm effects with/without surgery.
Has anyone had the surgery with headaches being the only symptom? Is two weeks recovery realistic? Has anybody opted out of surgery and symptoms gotten worse or the same? Any words or insight would help a great deal. I'm really afraid and torn.
I had surgery 3 weeks ago, headaches were my only symptom exactly as you described! I like you was so worried about having the surgery as my DR explained it’s not always 100% affective. And obviously it was going to be tricky with work and childcare etc. however, the headaches got worse and worse until my life was just miserable and I realised I had to give it a go if not for my own sake for my family.
I had my surgery on 28/10, recovery has been much slower than I expected. I spent 4 days in hospital and then two full weeks at home not being able to do anything much at all other than sleep! My vision has been blurred and I get headaches if I watch too much tv or spend too long on my phone or computer. My muscles are sore and have a v bad back. (Sorry don’t want to scare you) on the plus side…my chiari headaches seem to be almost if not completely gone! Yippee! I sometimes get the sensation of one but the pain never comes which is such a relief. Obviously everyone recovers differently so I can’t say it will be the same for you but you will almost defiantly need more than two weeks recovery time. I am just starting to take over care of my one year old but still can’t lift her yet and get dizzy and tired very quickly. I have been signed off work for 8 weeks.
I figure if a few weeks pain and discomfort can give me my life back (I’m only 26 I’ve got lots left I want to do yet!) then it’s going to be totally worth it.
Make sure you have plenty of people around to help you afterwards and you will be fine!
Every case is different, so I'm not suggesting one way or the other. I personally wish I never had any of my three surgeries, as each left me more incapacitated. I had a host of symptoms, and now have even more. I'm bedridden now, while others experience great improvement. One thing you said jumped out at me: you're really afraid and torn. Given that, I would wait. If surgery is the right way to go for you, you will come to a peace about it. I personally would wait for the peace.
I have a question Blue… Did the NSs do a neurological exam? Was it normal? Your syrinx appeared and is growing for a reason, but I think it’s important for you to feel comfortable (if not confident :))with your choice. I had a headache as my only symptom for years, it was pretty miserable the pain was intractable and moderate to severe. Then, one day during PT, I got really dizzy followed by all the usual Chiari suspects.
I hate to generalize cause everybody is different, but a 2 week recovery is just not realistic- that would definitely be the exception. I would plan in a 2-4 month period to be off of work. Is your prospective surgeon a Chiari specialist?
Thanks Maggie. I never looked at it that way!! And your right. I should be at peace…Im not.
Jenn and Mandy. Yes he is a pediatric neurosurgeon specializing in chiari. I figured since he is with Semmes and Murphy he is reputable. Ive met him twice…he order all the test. No syrinx, CSF is not blocked, flowing fine. Just a significant amount of herniation. I thought I made an informed decision, I guess I need to learn more. I have a conference with his nurse on Friday to discuss this. If not for this site and everyone who has responded I would be blind!
Thanks Laura.
I needed to know that!! Im 34 and a single parent my son is 11 but he still needs me. I’m a teacher as well…this will impact everything. Im so grateful for this site!!
I was diagnosed last December after having only headaches and very occasional swallowing problems. It remained as such until September when all of a sudden my symptoms increased as well as others (such as exhaustion and memory issues) showing up. Like you, I didn't want to jump into surgery so I put it off. Now I have scheduled it for January because it really is impacting my life. My herniation was about 10mm back in December. I'm sure it has increased, but will know more in January. Good luck to you!
Both of the NS I consulted with prior to my surgery told me that headaches were the symptom most likely to go away with surgery. In my case headaches weren't even close to being my worst issue so I was really on the fence but I had surgery and my headaches as well as my more pressing symptoms greatly improved!
