I haven't been on for quite a while. I was doing really well for probably about 6 months. Then, in June my husband was severely injured (I could have lost him) and I have been spending my summer taking care of him, so I have been pushing all symptoms to the back and kind of ignoring them, Now, over the past 2 weeks I have been having nausea and vomiting every morning accompanied by the wonderful headache. I have also been having the tingling and numbness in my arms and left leg. My question is: Is it common to have the symptoms "disappear" and "reappear" randomly? I thought I was doing so well. Perhaps it was the stress of my husbands injury that brought them back again with such force? I don't have doctor to see, because the last one told me that there was nothing wrong with me and my chiari wasn't large enough to worry about, so basically I am dealing with this on my own with the support of my wonderful family, but none from the medical society.
I feel like l am rambling and not making much sense. If you understand what I am talking about and can help, that would be great. If you can't understand what I am saying, I'm not surprised and would not be offended if I didn't get any response :)
Oh, I’m so sorry your feeling so awful. I’m sorry about your husband too. You have been having a really trying time:( it’s my opinion that stress absolutely makes my symptoms worse- no doubt. It becomes a vicious cycle: get stressed, headache comes on, panick because I have a headache, headache gets worse, panick more, etc…of course I always think its a good idea to be checked when new symptoms come on or change for the worse. Can you find a different doctor? One who won’t discount Chiari and the symptoms that come with it? It may be time for an updated MRI too. This is probably a dumb thing to say but I thought of it… If your headache and nausea are worse in the am have you thought about how your head and neck are positioned while you sleep. Do you sleep on your stomache with your head craned up or to the side?
I’m glad you posted, what you said makes total sence. Is your husband getting better or are you now in a permanent caretaking position with him? Keep hanging in there.
That was the same as my husband! He would sometimes go months without any symptoms at all, and then they would just appear oneday. Then over the years the sympomts appeared closer together, until eventually, they never went away. I did start to notice an association between stress and being symptomatic! I know we cannot aleviate all stress from our lives, and some things (like your situation), are out of our control! I do agree that your sleep position can also trigger your symtpoms.
You have to advocate for yourself!! Don't let anybody "downplay" your symptoms or how you feel!! DO NOT TAKE NO FOR AN ANSWER!! My husband just had his decompression surgery 14 days ago. We have been searching for the answers to his problems since 2005. Finally found the right place! His doc told him that he doesn't measure the "need for treatment" by the size of the herniation, but by the severity and consistency of the symptoms! Keep searching until you find the right doc for you!
In the meantime, I will keep you in my thoughts and prayers! And remember, if you do not take care of yourself, then you are no good to anyone else! <3
First, my husband is healing well, thank you, and is finally walking again. (he was injured in a hiking accident) and Jenn, I sleep on my side, so my head is usually not craned, but then who knows how I sleep during the night? I would also love to find a new doctor. I know Seattle has a good one but I have heard they don't take patients with <7mm herniation and mine is "only" 4. Again, thank you for responding
My Chiari symptoms have always came and gone. It's never been steady for me, except at a low point right before my decompression surgery when I was pretty much housebound/bedridden everyday. Even now, five years post-surgery, I have "good days" and "bad days". If there's a period where the good days outweigh the bad, I consider myself to be doing well.
Don't give up on getting treatment because your doctor doesn't consider your herniation to be big enough! Find enough doctor. Like Mimi said, you have to advocate for myself. I was young when I was diagnosed, so my parents were really the ones who advocated for me, but now that I'm an adult I am learning I have to be my own biggest advocate.
I also agree that you should consider getting another MRI. The size of the Chiari can vary based on the angle & type of MRI. I also think that a lot of doctors are becoming more progressive in regards to Chiari, ie. realizing that a lot of the research indicates that the size doesn't matter when it comes to whether or not a patient is symptomatic. Definitely look for another doctor!
I actually have the same symptoms and just saw Dr. Oro today for the 1st time. They found extruded vertebrae at c6-c7 with canal narrowing (cord compression) and disc rupture at L5-S1.
Have you have a c-spine or t-spine MRI?
Oro seems to think the lower body symptoms are from the vertebrae & cord issues. He won’t consider decompression until the cervical area is fixed anyway.
I have sporadic times that are OK and out of nowhere I may be bad for months. The suggestion is to fix the neck and if symptoms persist to look at other options for relief.
I also had a lifting restriction placed a few months ago and this seems to have relieved the severity of the headaches. I hope this helps and I hope you feel better soon!
I was decompressed about a year and a half ago. I've had good days, bad days, and everything in between.
I've noticed if I forget or postpone even just one of my pills, I will end up having a bad day. Also, the more stressed out I am, the more Chiari attacks I get.
I would look for another doctor. I went to three neurologists and one NS until I got placed with a NS that understood what I was going through. The size of the herniation doesn't mean squat - it's the impact that Chiari is having on your quality of life that matters. Perhaps Seattle isn't the answer if they measure it like that. I "only" had a 3mm herniation, and I was able to get decompressed and get my life back. I hope you have luck finding someone that will listen to you. Like everyone else is saying, DON'T GIVE UP!!! :)
Yes. Absolutely! My symptoms came and went periodically for years before my decompression. I’m one of the lucky ones (so far anyway) 5 months post op and have had zero symptoms since. (knock on wood) tomorrow I’ll probably have no feeling in my hands and pounding headaches everytime I move, for saying that. My advice to you is to go see a dr. Waking up with a headache and nausea isn’t a good thing. No one should live a life like that. I know. As we all do with this awful condition… Go see a new dr or NS. Keep going to different drs until you get one that gets how miserable you are. I am lucky to have a dr friend who knows a lot of drs in my area and he did all the calling for me. I would Ask every dr you have, even one unrelated to neurology for a referral. You will find someone, it might take some time, but you will. I’ll keep you in my thoughts and prayers, good luck!
I was decompressed and had duraplasty almost five years agos. I had a wonderful four years until last Fall. My symptoms have returned–so I can totally relate to you.
I was diagnosed beginning of this year with Borderline chiari. I had a few horrible months of pain and dr to dr. I did have two good months then it came back. I did notice in one episode I did have the worst pain ever after a laugh attack. Now im scared to laugh too hard, cough, sneeze and so on. I am cautious about lifting heavy things etc.
My new and wonderful neurosurgeon who believes me… Said he doesnt go by size of chiari, buy he goes by the symptoms. Im a 5mm. Apparently I was a 1-2mm beginning of year. My sumptoms have gotten worse. I have good n bad days. I only take advil with tylenol and when i feel pain kicking in i take my meds right away.
Reading your story was as if I was reading my own. I had an accident snow-riding yeas ago and my symptoms began almost immediately. My face was hit so hard it burst my eye socket, brow bone, cheekbone and cut nerve beside my nose into, thus pushing my head so far back, it messed up the disc in my neck, and I have a chiari, which I was not aware of till chiari syptoms began when I had the accident. I spent years suffering migranes, numb extremities, & pain. Now I have added symptoms, and hopefully Vanderbilt Hospital is going to be of help to me. Good luck to you.
pebbles said:
I actually have the same symptoms and just saw Dr. Oro today for the 1st time. They found extruded vertebrae at c6-c7 with canal narrowing (cord compression) and disc rupture at L5-S1. Have you have a c-spine or t-spine MRI? Oro seems to think the lower body symptoms are from the vertebrae & cord issues. He won't consider decompression until the cervical area is fixed anyway. I have sporadic times that are OK and out of nowhere I may be bad for months. The suggestion is to fix the neck and if symptoms persist to look at other options for relief. I also had a lifting restriction placed a few months ago and this seems to have relieved the severity of the headaches. I hope this helps and I hope you feel better soon!
Reading your story was as if I was reading my own. I had an accident snow-riding yeas ago and my symptoms began almost immediately. My face was hit so hard it burst my eye socket, brow bone, cheekbone and cut nerve beside my nose into, thus pushing my head so far back, it messed up the disc in my neck, and I have a chiari, which I was not aware of till chiari syptoms began when I had the accident. I spent years suffering migranes, numb extremities, & pain. Now I have added symptoms, and hopefully Vanderbilt Hospital is going to be of help to me. Good luck to you.
pebbles said:
I actually have the same symptoms and just saw Dr. Oro today for the 1st time. They found extruded vertebrae at c6-c7 with canal narrowing (cord compression) and disc rupture at L5-S1. Have you have a c-spine or t-spine MRI? Oro seems to think the lower body symptoms are from the vertebrae & cord issues. He won't consider decompression until the cervical area is fixed anyway. I have sporadic times that are OK and out of nowhere I may be bad for months. The suggestion is to fix the neck and if symptoms persist to look at other options for relief. I also had a lifting restriction placed a few months ago and this seems to have relieved the severity of the headaches. I hope this helps and I hope you feel better soon!