So I was just wonder, for those of you who have known about your Chiari for an extended period of time, have you noticed the season's playing a role in the severity of your symptoms?
The reason I ask is b/c I was diagnosed in November and had a minimally invasive decompression in February. Now, I know that the surgery didn't work b/c I have developed new symptoms and some of my previous symptoms have worsened since. But at the same time, symptoms that I was still having great difficulty with in April and May, don't seem to be as bad since it warmed up. So I'm wondering if it is due to the surgery or if it has to do with the season and weather changes? When I think back, I don't think that I had as much trouble last summer or in previous summers, but my memory isn't that great so I can't say for sure. I'm just wondering if I need to prepare myself for fall and winter.
I dont know , Im new to this . Just found out like 3 months ago... but ive notice that at the begining of the month and at the middle of the month is worst for me - i dont know why... and when if rains i get worst also
so im thinking when it gets colder im going to get worst..were u bad, my herniation is not that bad but im gtting a lot a symptems especily like i cant remember alot of thing someone can tell me something and in 5 minute i forget of i have trouble saying what i want to say alot of time and my hand and feet tingle almost all the time and my ear ring all the time and my head hurt all the time , i take pain pill now but i know they wont give it to me the rest of my life i throw up some time when my head hurt bad. i go see a neuro surgeon in a couple weeks
Hi Donna, I haven't realized anything as far as the time of the months, except when I'm on my cycle, it all gets BAD. But the rain, especially storms like to kill me!
My herniation was 8 mm, but I have like 75% of the symptoms, including all of the ones you listed. My memory may as well be nonexistant. I also have alot of trouble finding what I am trying to say, words I have said all my life are lost in my thought process. And I can be in the middle of a sentence and completely forget what I was talking about. I also have the numbness and tingling in my hands, forearms and feet. And I have had trouble with my ears most of my life. And headaches since 2005. Stiffness in my neck. Dizziness, lightheadedness, balance problems, eye sight problems, ie. halos, spots, periphral blindness, so many to list.
I'm not on any pain control right now, but go see pain management on the 17th.
If I was to give you any advice, it is to not let a surgeon open you up unless he plans on do it all. If he tells you there is a minimally invasive surgery he can do, tell him NO, it's all or nothing! Because you will just have to go back and have it done all the way anyways. Why put yourself through it twice. I didn't know better when I went in or else it would not have happened. Please let us know what your NS says.
Donna Williams said:
I dont know , Im new to this . Just found out like 3 months ago... but ive notice that at the begining of the month and at the middle of the month is worst for me - i dont know why... and when if rains i get worst also
so im thinking when it gets colder im going to get worst..were u bad, my herniation is not that bad but im gtting a lot a symptems especily like i cant remember alot of thing someone can tell me something and in 5 minute i forget of i have trouble saying what i want to say alot of time and my hand and feet tingle almost all the time and my ear ring all the time and my head hurt all the time , i take pain pill now but i know they wont give it to me the rest of my life i throw up some time when my head hurt bad. i go see a neuro surgeon in a couple weeks
For years I've noticed when the seasons change, especially when the temperature and barometric pressure changes, my symptoms flare up for a few days. I was just diagnosed with Chiari two months ago. Previously I thought it was due to fibromyalgia... Now, I have no idea! :)
Thank you Katrina. I have the barometric change problem for sure. Major headache that takes days to get rid of and get to my "normal". I'm actually still waiting for them to confirm fibromyalgia myself. I have all the symptoms of it and 2 of my doctors have said it sounds like it, but neither have come out and diagnosed me with it yet. I think with me, they are trying to get all the tests done before they say for sure what is what.
Best of luck to you. Have you seen a neurosurgeon yet?
Jessica
7thhousedoula said:
For years I've noticed when the seasons change, especially when the temperature and barometric pressure changes, my symptoms flare up for a few days. I was just diagnosed with Chiari two months ago. Previously I thought it was due to fibromyalgia... Now, I have no idea! :)
The Spring is the worst because of the rain for me. The end of The Fall is a runner up because of the drop in temps and rain. My period has always been very heavy and painful so therefore my symptoms seem to get worse. I guess rain increases inflamation in your body so the inflamation from Chiari or other painful conditions like arthritis gets worse. You may have gotten some relief from your surgery. If you're not sure you could keep a diary with weather conditions, stress, food, activity pain level, symptoms, headache ect and it might help you figure it out. I did it years ago before I knew what was wrong with me and it helped. It could also give you some important information to use to get help from doctors. To show them what you go through on a daily basis. I hope you get some relief.
Thank you Wendy. I have been "trying" to keep track of all those things for my lawyer who is helping me to get my disability. I say trying b/c my memory is so bad that some days I just forget! But is it normal for some of my symptoms to be getting worse and for me to be developing new ones if the surgery did any good at all? I mean the only thing that I have felt improvement of is the 24/7 pressure. I still get it, but it's usually from weather changes, bending over, lifting my son, etc. All my other symptoms are still active, just here and there instead of all the time. But it's still like playing the lottery... I never know from one day to the next which symptoms I'll deal with that day. Like yesterday... I was fine all day. NO symptoms. I get up today and I have been dizzy and lightheaded to the point of barely being able to hold my head up. I just don't know what to expect now that my symptoms have taken full effect. I mean last year when fall hit is when I really started having the worst pain and all of my symptoms seem to go into overdrive and I was hospitalized and diagnosed in the begining of Nov. And I didn't seem to get any relief until late spring into summer. I just don't think I could take another fall/winter season like last years. I was seriously ready to do anything to stop it then. Also, my period has always been very heavy and painful, too. And up until the last 9 months or so it has always been 7 days, unless I was on birth control. But in the last 9 months, they have gotten lighter and shorter, to the point that my last one was only 2 days. Still haven't figured out what is going on with that.
wendyanne said:
Jessi Lin,
The Spring is the worst because of the rain for me. The end of The Fall is a runner up because of the drop in temps and rain. My period has always been very heavy and painful so therefore my symptoms seem to get worse. I guess rain increases inflamation in your body so the inflamation from Chiari or other painful conditions like arthritis gets worse. You may have gotten some relief from your surgery. If you're not sure you could keep a diary with weather conditions, stress, food, activity pain level, symptoms, headache ect and it might help you figure it out. I did it years ago before I knew what was wrong with me and it helped. It could also give you some important information to use to get help from doctors. To show them what you go through on a daily basis. I hope you get some relief.
One of the most exasperating things about Chiari is not knowing day to day how you are going to feel. So many things change the picture that it's a minefield. Each of us needs to figure out what works for us. We need to rejoice in the good days and take care of ourselves and forgive ourselves on the bad. One of the hardest things is not doing too much on the days when I feel good because I pay for doing too much. It's always a balancing act and makes planning things and having a regular life very difficult. Heat, pressure and rest helps me. Some people ice helps. It makes my nerves go crazy. I use a flax seed hot pack all the time to losen up my neck muscles and I use hand held massage tools to put counter pressure on sore muscles. I take meds and I have headache medicine. You should really find a doctor PCP or NS that will help you manage your symptoms. It may take going to see many many doctors to find the right one. It took me a year+ actively looking and seeing 10+ doctors to find the ones that help me now. You need to fight and advoctae for yourself so that you have help managing your pain, symptoms and condition. You deserve to feel better.Surgery isn't a cure it's a treatment to stop the progression and hopefully help some of the symptoms. It's late and I don't even know if I am making sense anymore.
Wendy Jessi Linn said:
Thank you Wendy. I have been "trying" to keep track of all those things for my lawyer who is helping me to get my disability. I say trying b/c my memory is so bad that some days I just forget! But is it normal for some of my symptoms to be getting worse and for me to be developing new ones if the surgery did any good at all? I mean the only thing that I have felt improvement of is the 24/7 pressure. I still get it, but it's usually from weather changes, bending over, lifting my son, etc. All my other symptoms are still active, just here and there instead of all the time. But it's still like playing the lottery... I never know from one day to the next which symptoms I'll deal with that day. Like yesterday... I was fine all day. NO symptoms. I get up today and I have been dizzy and lightheaded to the point of barely being able to hold my head up. I just don't know what to expect now that my symptoms have taken full effect. I mean last year when fall hit is when I really started having the worst pain and all of my symptoms seem to go into overdrive and I was hospitalized and diagnosed in the begining of Nov. And I didn't seem to get any relief until late spring into summer. I just don't think I could take another fall/winter season like last years. I was seriously ready to do anything to stop it then. Also, my period has always been very heavy and painful, too. And up until the last 9 months or so it has always been 7 days, unless I was on birth control. But in the last 9 months, they have gotten lighter and shorter, to the point that my last one was only 2 days. Still haven't figured out what is going on with that.
wendyanne said:
Jessi Lin,
The Spring is the worst because of the rain for me. The end of The Fall is a runner up because of the drop in temps and rain. My period has always been very heavy and painful so therefore my symptoms seem to get worse. I guess rain increases inflamation in your body so the inflamation from Chiari or other painful conditions like arthritis gets worse. You may have gotten some relief from your surgery. If you're not sure you could keep a diary with weather conditions, stress, food, activity pain level, symptoms, headache ect and it might help you figure it out. I did it years ago before I knew what was wrong with me and it helped. It could also give you some important information to use to get help from doctors. To show them what you go through on a daily basis. I hope you get some relief.