I got m CINE MRI result today and was told there was no difference since the last one in 2010. So the big question then is why the hell am I suddenly having all these horrible symptoms?? I know, I know. This is the nature of Chiari. It just aggravates me. My Neurosurgeon wants me to see the Neurologist one more time to see if he has anything up his sleeve yet to help with the headaches. I told him I saw him before and he gave me Imitrex which did nothing for me. He said we should try one more time to see if he can help. I asked how helping my headaches will help with my not being able to walk. He then asks me if I have lower back pain. I told him I've had lower back problems for 12 years since I herniated a disc. But the walking problem started when the headache did this time around. Ok, one thing at a time, he says. Let's cross every t and dot every i before we talk about doing surgery. I got off the phone and wanted to scream but all I did was cry my eyes out. I really do like my doctor, and I do trust him with my care. But sometimes I feel like he isn't taking the time to really listen to all of my problems and take them all into consideration when looking at the big picture. There's more going on here than just headaches doc. Dude, I can hardly walk!! That's a HUGE problem. Much more than a damn headache right now. I've been dealing with the freakin' headaches for so long I can handle them. I feel like I have control over them for the most part. It's the walking and muscle pain and weakness, the fatigue, the tremors, the dizziness, the memory problems, the pins and needles, the pressure in my head. Those are the issues I need him to pay attention to. Those are more important to me than the headaches right now. I can relieve the headache pain for the most part right now. I have no way to relieve any of the other symptoms. HELP!!
I need to call him and regroup. Thanks for letting me vent.
Hey Jenny, So sorry to here about all the problems your having. It seems like if the doctors are not the one who thinks of ideas or solutions they just go off and say some of the stupidest things. Its almost like we don't know what the hell were talking about with our own body. There were times i could barely get up, & when i could i felt like a knew born just learning how to walk. Several months ago my wife & i went to my uncles house 4 a get together, later that night i went from a ok day to 1 of the worst. My legs wouldn't hold me at up all the only way i was able to leave there house was by having my wife & Uncle carry me to the car. The next day i had to go to the ER.. A few days later i was diagnosed as being a Diabetic type 1. The only 1 out of my entire family, lucky lucky me!!!! So you might want to check into that.. I still have my days when its hard to get up and i can only walk so far b4 my legs start to hurt / get weak, but it has helped. I don't walk like a knew born any more!!! I hope your days get better for you.. Good luck..
That's what we are here for! I didn't know this the first time I had a visit with my Neurosurgeon, like you I need to go back because symptoms are worsening. Up in resources above it gives information about things to ask, etc. I went in thinking he was basically a God I didn't come prepared. The important thing to is just because the herniation hasn't changed doesn't mean that your pain won't. They can't even see my herniation, I have "mild Chiari" but there is nothing mild about it. I felt the same way about my Neurosurgeon, I felt that he cared and listened but he truly believed in the do no harm and two months ago I would have said surgery was not the best thing, now I'm not so sure. I think also for you, if you have exhausted all other options it will geez how do I put this. You know how when you are in so much pain that you would do anything to make it go away, but when it subsides you're more rational? Does that make any sense? When I'm at my worst, I'm thinking they made pot legal, why not? But when I'm rational I know that is not something I would do. So, with your surgery I think that you will feel best about it if you feel it is the right answer for you when you're not in pain? This is just my humble opinion, please don't take offense, I'm kind of thinking that is what your Doctor is also trying to do. That way while you're recovering you don't think man I wish I had done this or this. Believe me I know how miserable you are. I know you just want to be "Normal", have just one day. Every week it's something new to add to the list of ridiculous things you have to deal with. I'm behind you 100% you know what is best for you, nobody can tell you how you feel. Just trust your instincts and come prepared. Please let me know if there is anything else you need and if need be vent again. We all do, I just wish I could have consistency, I hate this roller coaster feeling. Good luck with your next visit and unfortunately sometimes we have to jump through their hoops to get what we need.
Thank you. You said exactly what I needed to hear. I am in that desperate place of wanting to just do anything to be normal again. Thank you for helping me realize that and put things back into perspective again. I need to take the conservative approach to this. I certainly don't want to rush into a surgery that may not be needed. I have alot of patience. I just needed to recharge that. Thank you.
Jenny
Sarah Pugmire Baron said:
Jenny,
That's what we are here for! I didn't know this the first time I had a visit with my Neurosurgeon, like you I need to go back because symptoms are worsening. Up in resources above it gives information about things to ask, etc. I went in thinking he was basically a God I didn't come prepared. The important thing to is just because the herniation hasn't changed doesn't mean that your pain won't. They can't even see my herniation, I have "mild Chiari" but there is nothing mild about it. I felt the same way about my Neurosurgeon, I felt that he cared and listened but he truly believed in the do no harm and two months ago I would have said surgery was not the best thing, now I'm not so sure. I think also for you, if you have exhausted all other options it will geez how do I put this. You know how when you are in so much pain that you would do anything to make it go away, but when it subsides you're more rational? Does that make any sense? When I'm at my worst, I'm thinking they made pot legal, why not? But when I'm rational I know that is not something I would do. So, with your surgery I think that you will feel best about it if you feel it is the right answer for you when you're not in pain? This is just my humble opinion, please don't take offense, I'm kind of thinking that is what your Doctor is also trying to do. That way while you're recovering you don't think man I wish I had done this or this. Believe me I know how miserable you are. I know you just want to be "Normal", have just one day. Every week it's something new to add to the list of ridiculous things you have to deal with. I'm behind you 100% you know what is best for you, nobody can tell you how you feel. Just trust your instincts and come prepared. Please let me know if there is anything else you need and if need be vent again. We all do, I just wish I could have consistency, I hate this roller coaster feeling. Good luck with your next visit and unfortunately sometimes we have to jump through their hoops to get what we need.
Jenny, I’m glad you got the gist of my ramblings! I’m also trying to cross all I’s and dot all T’s yup that is what I told my husband. It’s so sad how far we fall. I really should retread before I post! It’s just downright embarrassing. Let me know when you can how you are doing? I do really care but my brain us not helping in the memory department! I may not have a brain but I definitely have a heart!
Have you hears of Maxalt? This was a miricle drug for me. only for the migrains tho. for pain I take norco and unfortunatly I cant go anywere without it. If I have an attack without it Im in trouble. Im sorry your dealing with all this. Iv always said the docs will never understand the severity of our pain and neuro issues. Keep positive no matter what. Dont let thw disease take over. you take it over. on my worst days I have to repeat that because nothing will ever stop me from waking up and taking care of my kids. pain or no pain we have people that depend on us! I hope you get to the bottom of your issues. have you had surgery yet or are youcwaiting?
Maxalt sometimes works for me. It also works for a friend with migraines. I haven’t tried it since the headaches have intensified. I wanted to share just how frustrating Neurologist can be. I was trying Maxalt for the first time. Every time I stood up I passed out. The Neurologist advice? Try more!
I can completely understand your frustration! My own experience with NL's has not been good...Like you said, basically, it is more than the H/A's!! It is the entire ball of wax..the walking, the tingling ...ect...heck of a lot more than the H/A's.
My primary was so clueless that I ended up going around him directly to a Neurologist who diagnosed me with the MRI and then I did research and found a neurosurgeon that was highly recommended to do the surgery. Only did my primary come on board and support me after the decision was made and after surgery was completed. If I have learned anything over the years it is that even the best intentioned doctors do not know or understand what you are feeling. They are lucky to have 2 sentences in there medical journals about Chiari and we will know more as we are living it and do the research. I had so much trouble walking prior to surgery that I have a handicapped placard. I would have to plan my trips to the store around how well i could walk and how big the store is. If it was really bad it was a convenience store or not at all. If my leg was working well I would consider Safeway but rarely Walmart. After surgery I still do have some symptoms but most of the time my walking is good. My pain in my lower back has gone down considerably. My balance is still off some but much better than it was. I do have some trouble with loud noises and bright lights. Seems to be a little more than before surgery but overall I am happy with the decision I made. You may need to be your own advocate and do your research and go directly to a good surgeon. You are the only one that knows what you are going through. I know that sometimes we feel like we don't have the energy to fight...but you will find it.
There are many NS's that put no stock at all in the CINE MRI, calling it "useless". Prior to deciding on surgery, I searched medical databases (I'm a nurse, and a grad student) for studies that supported both sides of the CINE argument. Honestly, they were 50/50. Dr. Oro in CO blew mine off, saying it was "ok". Based on what I learned (and the fact that I could barely stand, see or form a sentence in addition to numbness, tingling, headaces and swallowing problems), I pressed on an found a NS that thought CINE's are useless, however, he did say mine showed a blockage. Just advocate for yourself...you are the only one that knows how you feel. You can get more info from my blog www.constrictedcranium.blogspot.com or my FB page, The Constricted Cranium. My NS is in Houston, TX I'll be glad to help in anyway I can. I'm 5 weeks post op and still have some symptoms, but overall I'm greatly improved..not one Chiari headache since the day of surgery!
