I'm at a point now I don't know what to believe or how to get through each day. Because each day is different, one day I feel fine and have absolutely no symptoms and others theirs times when my head and neck hurt so bad I feel like I can't lift my head, and lately trying to eat anything has been an EXTREMELY DIFFICULT task to accomplish.
I guess I'm just wondering if others here have the same or similar issues and I'm sure their are, but I guess I'm wondering if these types of symptoms improved if any of you had the decompression surgery. Because I'm to the point to where I never know if the next bite of food I take is going to make me choke to death, and it's made me so apprehensive about eating anything substansial.
I found a Neurosurgeon here in Ohio that seems to have at least some knoweldge of Chiari and how to treat it, and he believes that in the next couple of weeks that I will need to have the decompression surgery. I guess I'm freaking myself out more than I need to, but I guess I just want to get some ideas on how the surgery has worked for others. Because he told me right of the bat that the surgery the first time sometimes isn't 100% effective and he might have to do more than one surgery. If anyone here has had similiar situations please if your willing to, I would interested in hearing your stories and experiences.
I have not had surgery but I have good days and bad. More bad than good. I don’t have swallowing issues. I know in the book contents under pressure that was a symptom mentioned.
I have recently been diagnosed as well, ( even tho apparently I have had it all my life, go figure!) I go back to my neuro next thursday. My thoughts, if theres a chance the surgery will improve your quality of life, DO IT!! If it takes 2 or 3 to get your life back, DO IT!! Don't let fear take over and make your decisions for you, you have to eat, LOL its kinda important when it pertains to living, lol. I know, its easy for me to say, and when/if the neuro tells me I need the surgery I am gonna be freaking too, lol, but I know I would do it in a heartbeat, to give me a chance at a better quality of life.
I had decompression 3 yrs ago..felt/seen some good results...still have some issues that lingered....Overall , I would do it again..
Recovery was long for me, I thought..but now that I look back...it really wasn't all THAT bad..don't get me wrong....the 1st few weeks were very painful for me.
My NS told me back then that a patients who have surgery sooner than later, once Sx's occur...have a much better success rate..
It did give me a lot of peace of mind when the NS told me that the operation itself is not complicated and from a NS standpoint it is pretty straightforward with minimal complications...I had no complications....I don't think I would have believe him so much as far as the easiness of the operation itself..if I had not watch a decompression done live...YOUTUBE..I think..and if I didn't watch the whole thing , I would have missed this...at the VERY END..the NS said basically the same thing my NS did...A Posterior Fossa Decompression , C1 Laminectomy and Duraplasty is not a difficult surgery to do for a NS...that gave me a lot of peace.
Above is the procedure I listed above is what I had done..some NS's do not open the dura(covering of the brain)..my NS does..b/c he feels as though by doing so..makes more room ..also C1 laminectomy was done for the same reason.
How long have you had Sx's??? This swallowing problem is not good..you have told the NS about that, right???
Please keep us updated and know we are here for you.
I was born with the spina bifida, Myelomeningocele. Had the opening of the spine at birth which caused problems with the growth of my spine and which in turn has caused me problems with my feet and legs, having to have multiple foot surgeries all throughout my life, also along with the spina bifida I developed hydrocephalus, which is commonly known as "water on the brain. So I had to have a shunt placed also at birth to help with that as well.
I've gone the past 24 years not knowing that spina bifida could have more progression as you entered adulthood. It was only back in May when I started having some shooting pains in the side of my head that were very painful that I went to see a neurologist, who in turn did a CT scan after I argued with him about it, to check my shunt, I received the results a few weeks later and everything with the shunt was fine, so he said that I was in fact had to be fine as well. But soon after I saw the neurologist, more symptoms started to arise in my every day life.
So knowing that I wasn't going to get the answers I wanted from a neurologist, I just went looking for a neurosurgeon who had a background in Chiari and I was lucky to find one that isn't far from where I live. I went and saw him, and I described ALL my symptoms, which by the time I saw him had increased quite a bit, and before he even examined me or looked at any test results or anything he pin pointed that it was the Chiari causing my symptoms. But I'm still awaiting to go for further testing to check on how advance the Chiari is, but like you said, he told me that the symptoms I described to him make him very confident that I'll have to have the surgery.
So like I tell my friends and family, I'm praying for the best, fearing the worst and I have to wait and see what happens next. This is all new to me, even though it was something I was born with, I never new I had it til just very recently. So I'm so happy I found this website, it's helped me out a lot already. I hope all is well with you and I hope to talk to you soon.
I am so happy that you found a NS(neurosurgeon ) who is well informed in Chiari..sure sounds like he's a keeper!!!!
I sound like a broken record on this site ...but here I go AGAIN....Now, this is only my own experiences with Neurologists..(NL)...CLUELESS about Chiari....
Megan, the times and money I wasted on NL's ticks me off but I need to take responsibility as well...looking back these days,mths ect...I do remember my Primary telling me to "see Sampath" who is a well known NS in RI....I was in denial after all those NL's told me Chiari was nothing....and I also had Lyme Disease at the same time..Sx's can mimic Chiari...after 3 mths of Tx for Lyme..actually, i think I did go to the NS b4 I was done with the Tx for Lyme.....and he validated me and we went from there.
Hope you are having a good friday..the roofers will be here any sec and I gotta get out of here..cannot stand all the banging and mess!!!LOL
Megan, I too have problems eating. I feel like my food gets stuck in my throat a lot. I cut my food up tiny so I don’t choke. Also after I eat I feel like I just ate at a buffett no matter what I eat! I feel so full I can’t catch my breath. This just started the past few months. I have had symptoms most my life, but the past few months is when they all have escaladed. I am having surgery Oct. 21. At first I was excited that I finally have a DX and I was going to get fixed and maybe live a normal life again. Now that the surgery date is coming closer I am scared to death! But I know it’s something I have to do, and I put trust in my Dr. I see you live in Ohio, I do too. Where is your Dr. located? Mines in Cols. He specialises in Chiari. He told me also that he’s pretty sure I would get relief from my symptoms with surgery, but sometimes you do have to have more than one. So I think you have a good NS, that knows what he’s talking about. If you are having symptoms so bad that you can’t eat, you need the surgery! If not you are going to get sick from not having nourishment. If you really can’t eat, and are that afraid, get you some Ensure shakes or other nutrisous drinks! Hope you get the answers you need! And hope you feel better! Take care!
I've started cutting my food up really small as well, and sometimes I'm absolutely fine others the food still does get stuck in the back of my throat, which tends to cut off my air, and it hurts and it's a very scary situation. Their are some days when I don't eat all day, and I only maybe 1 meal a day, not because I'm that scared to eat, but because I just have no appetite on a lot of days. I always do my best to eat something small, even if I don't end up eating a hole meal for every meal of the day. So I'm not really at the point to where I can't eat anything, I guess its very scary for me not to able to swallow food. But hopefully when I see my NS at the end of this month, after I get the tests done he wants, hopefully I'll have some answers and he'll have solutions I can take to change what's going on.
Hope your doing well, Megan kay1990 said:
Megan, I too have problems eating. I feel like my food gets stuck in my throat a lot. I cut my food up tiny so I don't choke. Also after I eat I feel like I just ate at a buffett no matter what I eat! I feel so full I can't catch my breath. This just started the past few months. I have had symptoms most my life, but the past few months is when they all have escaladed. I am having surgery Oct. 21. At first I was excited that I finally have a DX and I was going to get fixed and maybe live a normal life again. Now that the surgery date is coming closer I am scared to death! But I know it's something I have to do, and I put trust in my Dr. I see you live in Ohio, I do too. Where is your Dr. located? Mines in Cols. He specialises in Chiari. He told me also that he's pretty sure I would get relief from my symptoms with surgery, but sometimes you do have to have more than one. So I think you have a good NS, that knows what he's talking about. If you are having symptoms so bad that you can't eat, you need the surgery! If not you are going to get sick from not having nourishment. If you really can't eat, and are that afraid, get you some Ensure shakes or other nutrisous drinks! Hope you get the answers you need! And hope you feel better! Take care!
Wow Kay, I never really put that full feeling down to anything other than im weird, lol. I eat like a bird, yet im big as a house, and no matter how little I eat, I feel like my stomach is going to burst, sometimes its so uncomfortable to even move. My kid teases me about how little i eat, I will eat half a sandwich and say how stuffed I am and he will say something like, no wonder, you ate a whole HALF a sandwich, id be stuffed too...lol I have trouble swallowing, but mine is like my throat and jaw lock up, and i cant swallow, I have to wait till the "spasm" as I call it, subsides.
and like mse, I usually eat only once a day, mostly because im just not hungry and i find it difficult to eat when i dont feel hungry.
I see my Dr on thursday and really hope that we can come to some conclussion/treatment for me, Im so tired of this "life", I want my old one back :-(
Lilly, sorry you are having those awful symptoms too! My NS did say that the full feeling and shorness of breath after eating just a little bit is a symptom of Chiari. I guess the compression can cause all kinds of crazy things! When it’s pressing on the spinal cord and brain stem, there are a lot of nerves and things there that are affected. I got to the point I can’t bend down, pick something up, then walk across the room without being totally out of breath. I just thought it was because I smoke. But I knew that couldn’t be it, cause it just came on rapidly. Then when I ate anything, don’t care if it was a bite of something I couldn’t catch my breath. I would of never dreamed that it was a symptom of Chiari! When you see your NS, make a list of all your symptoms, because when you see him you will forget them all. Even if you don’t think it has anything to do with Chiari. I hope you the best of luck Thursday! I pray that your NS is up to date on Chiari, and if he’s not seek another one! Don’t let this take over your life! I’ve went for at least eight years with noticeable symptoms, been to I can’t count how many Neurologist, NS, ENT’S, all kinds of specialist and all they could say was I had migraineds, arthritis, yada yada yada! I sucked it up until the past three months when my symptoms totally interferred with my life. I can’t work, drive, or do much of anything. I just want my life back to normal! If there is a normal. lol!! Again, best of luck and keep us posted what you find out! Hugs and Prayers!!!
lillyof64 said:
W
Wow Kay, I never really put that full feeling down to anything other than im weird, lol. I eat like a bird, yet im big as a house, and no matter how little I eat, I feel like my stomach is going to burst, sometimes its so uncomfortable to even move. My kid teases me about how little i eat, I will eat half a sandwich and say how stuffed I am and he will say something like, no wonder, you ate a whole HALF a sandwich, id be stuffed too...lol I have trouble swallowing, but mine is like my throat and jaw lock up, and i cant swallow, I have to wait till the "spasm" as I call it, subsides.
and like mse, I usually eat only once a day, mostly because im just not hungry and i find it difficult to eat when i dont feel hungry.
I see my Dr on thursday and really hope that we can come to some conclussion/treatment for me, Im so tired of this "life", I want my old one back :-(
Kay, do you have any issues with body temp? I am always hot, I am like an oven, on broil. And the more I move the hotter i get, my face will turn red like a lobster, and sweat will drip off my face, literally ( it REALLY stings when it gets in your eye). My house is such a mess, ugh, but cleaning makes me so hot, i throw up, its like heat stroke. Not to mention the pain involved as well. I kid you not, in the winter, I can walk out the door with no coat on, and steam will appear, coming from my body, because i am so hot and the temp outside is so cold. The girls at work, all have to bring sweaters to work, because i always have the a/c on, they sit there and shiver, and im dieing from the heat, poor things. But I say you can always put on a sweater, i cannot take my clothes off here at work, LOL. I am curious, my dr has never been able to figure out what it is. My hormone levels are normal as is my thyroid. Maybe it is the Chiari? Has anyone reading this had that problem?
hugs and thanks, for all your kind and thoughtful words!!!