My ns said that he feels like he could improve my symptoms up to about 70%…if the surgery works. He said there’s a 30% chance that the surgery won’t do a damn thing. I have frequent drop attacks (few times a day to only 3 times a week). I occasionally faint all the way. I have the burning and pain in the back of my skull. Numbness in hands and feet, face and head. I’m horribly uncoordinated. But I’ve never looked at it as something that has been a disability. I’ve kind of just thought I was nuts and being dramatic. So I learned how to spot an episode of fainting hours before it happens. I can tell if I’m going to have day full of drop attacks and I have learned to work around them. Sometimes I have to hole up in the dark to get rid of that head pain. But it’s become my normal. It’s what I was used to. Now that I’ve finally been diagnosed I see how many concessions I’ve made to it. How much different my life is than the others around me. They don’t have to plan a family outings and only go to places that have a discreet way to get out in case mommy passed the fawk and daddy has to carry her to the car.
Minus my family my passion in life is running. I can still run. I just can’t run on my bad days. But on my good days I love nothing more than a good run. I’m scared that I might lose that if I have the surgery and it doesn’t help.
I didn’t want to feel better until I realized how shitty I really feel. And I’d I’m not feeling crappy and run down I’m paranoid about when it’s goin hit again.
I can’t decide if I just deal with it as is and suck it up like I have been for the past however long…or do I take the chance?
Sorry if this is rambling. It’s the first time I’ve let this out.
I just had my surgery 3 weeks ago, and I dont think my symptoms were as severe as yours and to me the risks of the surgery and the risk that it might not help was well worth it. I was so tired of missing out on things or just being irritable my with family and friends because I didnt feel good. So, you have to ask yourself if you feel like your quality of life is worth it to you.
If your doctor has alot of experience with Chiari 70% is amazing!. I would be wary of anyone giving you a number though. I don't know if others have this experience or not. My first ns told me the pressure and headaches would get better but made no promises. My new surgeon for my revision hasn't promised anything because I've been dealing with it for so long. The longer your CSF is blocked the more damage it does. The surgery is not a cure it's a treatment. It's to prevent your serious symptoms from getting worse. It sounds like you have pretty dramatic symptoms. I fall alot and I fall alot infront of my kids and I always feel bad for them having to see me like that and helping to pick mom off the ground. I had the fainting attacks for about a year and a half and it was awful. My heart really goes out to you. The intensity of the headaches usually gets better with the decompression because pressure is literaly released by freeing up your CSF flow. We all have to make the individuale decission for ourselves. It's alot to put yourself through.It's alot to put the family through and everyone has different outcomes. As far as running is concerned I would think that just anatomy wise that post surgery would be better for running. The jaring of your body during running must effect the cerabellum. If it is patched up and decompressed it seems like it would protect it more. What has your doctor said about running?
That’s where I am right now. I’m tired of missing out on things. I didn’t realize how much it has impacted my life until I really sat down and looked at the past 6 years and all that I’ve had to miss out on. It had all become so normal to me that I wasn’t seeing just how not normal it really was/is.
Thanks for your story and good luck in your recovery!
jencooper0217 said:
I just had my surgery 3 weeks ago, and I dont think my symptoms were as severe as yours and to me the risks of the surgery and the risk that it might not help was well worth it. I was so tired of missing out on things or just being irritable my with family and friends because I didnt feel good. So, you have to ask yourself if you feel like your quality of life is worth it to you.
I was told I have an 80% chance of symptom relief by my ns. I just had surgery last tuesday. I feel like I was inthe same boat as you but I didn’t have fainting spells, if I fainted at all I’d have surgery in a heartbeat. I was physically OK before surgery. I had a lot of fatigue, migraines, nausea, dizziness, tunnel vision, tingling and numbness. Right now I’m a mess from the surgery, in a lot of pain, constant headache and dizzy but I haven’t had any tingling or numbness in the past week! I know surgery was the right choice because my herniation went from 14mm to 23mm in 7 months and after surgery my ns said everything was really tight in my skull he had to remove spinal fluid and that I was one of the worst chiari cases he’s seen.
I am totally new to all this so to me 70% seemed a bit low. He said in his medical heart he thinks that I’d see a 70% improvement in symptoms if the surgery works.
I totally know what you mean about falling on the floor in front of your kids. My poor son is so used to it that he lays next to me and tells me sweet dreams.
Thanks for the info. It’s good to know that other people know how you feel. I began thinking I was making this all up. That’s why I’ve toughed it out for so long. I didn’t want my dr’s to think I was nuts.
I haven’t asked about running yet. I keep thinking of more questions each time I hang up with my doctor. I read something about not lifting more than 15lbs after surgery. But couldn’t find if that was just during recovery time or a permanent thing. I’d be crushed if I couldn’t work out anymore. It’s what keeps me sane.
wendyanne said:
If your doctor has alot of experience with Chiari 70% is amazing!. I would be wary of anyone giving you a number though. I don't know if others have this experience or not. My first ns told me the pressure and headaches would get better but made no promises. My new surgeon for my revision hasn't promised anything because I've been dealing with it for so long. The longer your CSF is blocked the more damage it does. The surgery is not a cure it's a treatment. It's to prevent your serious symptoms from getting worse. It sounds like you have pretty dramatic symptoms. I fall alot and I fall alot infront of my kids and I always feel bad for them having to see me like that and helping to pick mom off the ground. I had the fainting attacks for about a year and a half and it was awful. My heart really goes out to you. The intensity of the headaches usually gets better with the decompression because pressure is literaly released by freeing up your CSF flow. We all have to make the individuale decission for ourselves. It's alot to put yourself through.It's alot to put the family through and everyone has different outcomes. As far as running is concerned I would think that just anatomy wise that post surgery would be better for running. The jaring of your body during running must effect the cerabellum. If it is patched up and decompressed it seems like it would protect it more. What has your doctor said about running?
So glad to hear that you’ve had a positive outcome already! That makes me feel a little better. My doctor said that he would take a skin graf and use it in place of a metal plate…? Maybe I misunderstood him.
Becki Bowling said:
Like Jen & Wendyanne said everyone is different & you have to make the decision that is best for yourself. What I will say is that I was tired of CM controlling my life. I had the surgery last Thursday. Right now I feel like I was run over by a Mack Truck. BUT everything I feel is the effects from the invasive surgery. I used to twitch EVERY day from the CM. Haven’t done it once since Thurs. The brain fog is completely gone. The only speech & memory problems I have are from the meds believe me I can tell the difference. The verdict isn’t in yet on the headaches because I just had a piece of my skull removed and a metal plate put in so needless to say my head hurts pretty darn bad. If I had to do it again. I would do it in a heartbeat.
From what I’m reading a majority of the people who’ve had the surgery seem to be happy or happier than before. It’s comforting to finally speak to people that are in the same boat. Like I said earlier I began questioning my sanity.
Cheers to a speedy recovery!
doodledee216 said:
I was told I have an 80% chance of symptom relief by my ns. I just had surgery last tuesday. I feel like I was inthe same boat as you but I didn't have fainting spells, if I fainted at all I'd have surgery in a heartbeat. I was physically OK before surgery. I had a lot of fatigue, migraines, nausea, dizziness, tunnel vision, tingling and numbness. Right now I'm a mess from the surgery, in a lot of pain, constant headache and dizzy but I haven't had any tingling or numbness in the past week! I know surgery was the right choice because my herniation went from 14mm to 23mm in 7 months and after surgery my ns said everything was really tight in my skull he had to remove spinal fluid and that I was one of the worst chiari cases he's seen.
You’re only limited in activity (lifting) right after surgery. From all the research I’ve done on chiari and all the doctors and specialists I’ve seen I had come to the conclusion that the longer you suffer your chiari symptoms the longer you will take to heal after surgery. I think the body needs to adjust or somethig, but I must have read and heard tonss of after surgery stories. Not just online but actual patients from different doctors that I know personally (I have family/friends in the medical field so I was lucky enough to have lots of different doctors give me input free of charge without even seeing me!) I decided that I’ve only had symptoms for a year or so and if I can get surgery now it might be less time before I’m “normal” again. One NS flat out told me he wouldn’t operate until I was at risk of being paralyzed - they don’t want to help unless there are physical symptoms! I was lucky enough that my herniation is so big it backed up my symptoms and gave proof to why I feel so awful all the time. Hopefully now that I have had surgery I will start to see improvement after I recover from the trauma of havig a major surgery!
I lived with this head for years and I do have to say I did take the chance of surgery and I am glad that I did. I still have my bad days, moments ,nausea and it still iretates me but they are far better now than before I wish you all the luck in the world
Thanks so much for everyone’s input. I really appreciate it. I’ve been living with this for the past 6 years and didn’t know it had a name, let alone a treatment. So the idea of surgery is brand new to me and really scary. I want to get a grip on what I should realistically expect.
Thanks again!
Your odds are one I’d switch with in a heart beat! That’s a huge piece of good size pie that you will have a good outcome. I was given an 80% chance that I’d be the same or worse after surgery, and my constant migraines would remain untouched. So for what it’s worth, I think the odds sound encouraging and like you could have a good chance to be the active mom and person you crave being! Good luck!