I am 7 months out and had suffered for 27yrs.and was getting worse.I have had some good changes even though my chiari was concidered borderline,my life was still a nightmare,as time went on I was starting to have trouble with weakness and had trouble walking,my balance was bad,no gag reflex,severe fatigue,speach sluring,headaches with pressure,and failed the tilt table test.It is a personal decision,but as for me it was the right one,life is so much better than it was.I can’t believe anyone would make this choice without lots of knowledge about the condition,it’s a must to do research on the NS’s experience in the field too.I know sometimes there is not a decision to be made when it is life threatening,sometimes no matter what is done there can be damage that cannot be reversed,life at times is not fair.I have heard of lots of successful decompressions,the surgeon I had is probably one of the best,if not the best in this field,he was one of the first to do it, would be worth traveling to get to someone like him,some if not most reg NSs just don’t know what they are doing when it comes to chiari.It took me 27yrs. to get help because of that fact,my surgeon was Dr.Micheal Rosner in Hendersonville,N.C.evn if you still have problems after surgery he might can help,he has been known to redo surgeries done by other NSs to fix their mistakes as well as he can.
I would like to quote a friend of mine from this group. " you have to weigh your quality of life versus the risks of surgery, it is a very personal decision". I believe you are coming from a sincere place, but if you talk to some people here who were told by their doctors to wait as long as they want, or they will know when its time for surgery, they can tell you that they suffered serious permanent problems. I myself am not sure about the surgery, but I worry about that every day. My medication has been increased so much to manage my symptoms that I worry that I may not fully know how fast they are getting worse. My quality of life is not good. I appreciate your sharing your experience as well as others sharing their good experience. Again, you have to weigh the good & bad. My interactions with people on this site lead me to believe that overwhelmingly, most people DO NOT want to think they are worse off than they really are and DO NOT want surgery, quite like myself. Sometimes I feel like I am trapped in a no win situation but I remind myself that there is a treatment as there are people out there suffering from ailments where there is not one. I am very sorry for the way things turned out for you, and hope you can get better. best wishes
I think maybe I came off as.... bitter? I really am not and didn't mean that. My point was that I really just want some people to as you said weight the benefits and risks. I don't know anyone's stories here so I don't know if anyone HERE is as I described- I just happened to have something to say and was on this site lol. And probably having a bad day. I just meant that there are some people grasping at anything and any reason and those people are obvious. I do agree that MOST people DON"T want to have a "bad" case of Chiari. But I DO feel there are some that see these horrible cases and because of attention, getting on disability or whatever, try to make their not so bad case seem worse, and I just wanted to to warn THOSE people they may just be trading their not so bad symptoms in for a set of really bad issues.
If I seem bitter or upset I usually am not. Some days though, yes I am. I can't and won't lie. Yes I DO get pissed off that I am in constant pain now and it's a constant reminded or the things I will no longer be able to do. The fact that I am only 32 and with just the regular aging I will face with this on top of the Chiari just is annoying at times. I am learning this is my new normal, and though it's been three years already I still a not used to it. I get up and go to work everyday, I do as much as possible with my kids, I just recently got divorced and am a single mom trying to support my kids and myself after having been a stay at home mom for 12 yrs. I guess yes I do get upset some days when my house is a mess and I can't clean it because I am exhausted and in pain - AGAIN. SO my issue isn't with the majority- just those that maybe to me take Chiari lightly and again, to ME seem to WANT to have it worse than they do- I just want those people to realize having it bad is not something they should be wishing for because it really truly is a pain in the neck lol.
I would like to quote a friend of mine from this group. " you have to weigh your quality of life versus the risks of surgery, it is a very personal decision". I believe you are coming from a sincere place, but if you talk to some people here who were told by their doctors to wait as long as they want, or they will know when its time for surgery, they can tell you that they suffered serious permanent problems. I myself am not sure about the surgery, but I worry about that every day. My medication has been increased so much to manage my symptoms that I worry that I may not fully know how fast they are getting worse. My quality of life is not good. I appreciate your sharing your experience as well as others sharing their good experience. Again, you have to weigh the good & bad. My interactions with people on this site lead me to believe that overwhelmingly, most people DO NOT want to think they are worse off than they really are and DO NOT want surgery, quite like myself. Sometimes I feel like I am trapped in a no win situation but I remind myself that there is a treatment as there are people out there suffering from ailments where there is not one. I am very sorry for the way things turned out for you, and hope you can get better. best wishes
I completely understand where you are coming from. I have even had ppl when I tell them about Chiari say "Oh I bet that's whats wrong with me" OK if it is b/c I can't say its' not, then I can guarantee they would be pushy and outright rude with their doctors for not helping them but just drugging them up like my first one was. Those are the ppl you just want to choke, I understand. I have no tolerance for ppl in general.
Michelle said:
I think maybe I came off as.... bitter? I really am not and didn't mean that. My point was that I really just want some people to as you said weight the benefits and risks. I don't know anyone's stories here so I don't know if anyone HERE is as I described- I just happened to have something to say and was on this site lol. And probably having a bad day. I just meant that there are some people grasping at anything and any reason and those people are obvious. I do agree that MOST people DON"T want to have a "bad" case of Chiari. But I DO feel there are some that see these horrible cases and because of attention, getting on disability or whatever, try to make their not so bad case seem worse, and I just wanted to to warn THOSE people they may just be trading their not so bad symptoms in for a set of really bad issues.
If I seem bitter or upset I usually am not. Some days though, yes I am. I can't and won't lie. Yes I DO get pissed off that I am in constant pain now and it's a constant reminded or the things I will no longer be able to do. The fact that I am only 32 and with just the regular aging I will face with this on top of the Chiari just is annoying at times. I am learning this is my new normal, and though it's been three years already I still a not used to it. I get up and go to work everyday, I do as much as possible with my kids, I just recently got divorced and am a single mom trying to support my kids and myself after having been a stay at home mom for 12 yrs. I guess yes I do get upset some days when my house is a mess and I can't clean it because I am exhausted and in pain - AGAIN. SO my issue isn't with the majority- just those that maybe to me take Chiari lightly and again, to ME seem to WANT to have it worse than they do- I just want those people to realize having it bad is not something they should be wishing for because it really truly is a pain in the neck lol.
I would like to quote a friend of mine from this group. " you have to weigh your quality of life versus the risks of surgery, it is a very personal decision". I believe you are coming from a sincere place, but if you talk to some people here who were told by their doctors to wait as long as they want, or they will know when its time for surgery, they can tell you that they suffered serious permanent problems. I myself am not sure about the surgery, but I worry about that every day. My medication has been increased so much to manage my symptoms that I worry that I may not fully know how fast they are getting worse. My quality of life is not good. I appreciate your sharing your experience as well as others sharing their good experience. Again, you have to weigh the good & bad. My interactions with people on this site lead me to believe that overwhelmingly, most people DO NOT want to think they are worse off than they really are and DO NOT want surgery, quite like myself. Sometimes I feel like I am trapped in a no win situation but I remind myself that there is a treatment as there are people out there suffering from ailments where there is not one. I am very sorry for the way things turned out for you, and hope you can get better. best wishes
great words
This is a great topic. I am 42 years old and had my first decompression in Oct. 2011 (Dr. Schrot UC Davis, Sacramento) and my second decompression in Oct. 2012 (Dr. Oro Aurora, CO). My MRI in Dec. 2012 was clean, but then five weeks ago my symptoms started coming back and I had an MRI at the end of April and it showed a fluid collection at C1/C2.
What I will tell you from my experience is that, surgery helped me out a lot, but it has its drawbacks. I am a totally different person now. I used to have an abundance of energy and pain to go with it. Now, my pain is mostly moderate, but my energy is not near as high. I am just wired differently and I have had to learn to understand this new me. This is more good than bad. I no longer have the lows I used to have and I no longer over react to everything. I am more melancholy where as I used to be living on highs and lows all the time. The biggest positive has been that my pain has severely lessened since each surgery. I see myself as a success story and feel fortunate. I do wonder why I keep getting fluid "build ups" post surgery since I had none before surgery (I am suppsed to hear from Dr. Oro tomorrow and I have an appointment to see Dr. Ciricillo on Thursday).
The one thing I have learned from all of this is that you do not want an inexperienced surgeon operating on you. By inexperienced I mean inexperienced in doing Chiari surgeries. So many things can go wrong. The method of the surgeon is less important than their experience and their success rate. Ask your surgeon how many decompression surgeries he/she has done in total, how many in the last year, and do they do follow up MRI's and/or what does the follow up care look like. If you are told that after surgery, your post op is up to you (meaning, call us if you have a problem otherwise you are good to go), you might want to rethink having surgery with this person. If your surgeon has done 15 in the last year, that would be a starting point for me. Dr. Oro does about 100 a year with good results, but if you read blogs there are still patients of his who just don't have the type of success I have had. Surgery is something you need to really think about and think about it very seriously. Your success rate depends more on the surgeon's success rate than any other factor - in my opinion. The one thing I liked about Dr. Oro was that if he didn't think he could help you out, he would not recommend surgery. Some people don't like that answer, but unless it is a life or death situation, sometimes it is best to not have the surgery or wait.
Like I said, I feel like I am a success. With that said, I do miss my "high wired" days, but I sure don't miss my lows (which are way less severe now than presurgery).
Please feel free to contact me with any questions or thoughts as I could go on and on... Wishing you all the best!
Hi Hanli,
This is the only Specialist we have for South Africa... Dr. J.M. Steyn, Wilgers Hospital, Pretoria, South Africa. The Dr was recommended by Member Nicci83 from Mokopane, S. Africa. You can go to the Members tab and do a search for Nicci83 and send Nikki a message for more information about this Doctor. Good Luck. I know you love your sister very much,
Tracy Z.
Hanli said:
We live in South Africa an my sister was diagnosed a week or so ago with chiari. Her hernia is 8mm. She has most of the above mentioned symptoms and we can see her deteriorating almost daily. Where can we find a chiari specialist in SA?
I am also new to this site and not that my opinion matters a bit but the post did come off as bitter and almost uncompassionate to me but I am also aware that was not the intention of the post at all. Sometimes we as humans like to score our suffering on a scale of 1-10 as to who out does who. This has never made any sense to me. Pain is pain, I have no right to ever state that my pain is more or less than that of another. We are all different and what might level me to the next person wouldn't even make them blink and vice versa. I am not here because I want something to be wrong. Since my diagnosis a day does not go by that I do not sit somewhere and cry or scream in anger that this is happening. I have battled cancer three times spent 18 months recovering from a life altering accident that left me with almost every bone in my body broken and now this. I pray that I wake up from this nightmare. I do not want this. When I wake up in the morning I convince myself these symptoms are not as severe as I think they are and today will be better but by the end of the day the realization is there, I am progressing. The depression and anxiety has pushed me to a point of depression that my family is afraid to leave me alone. I have not stopped working and I see the stares and I hear the whispers. My surgery is scheduled for Thursday and I am more afraid of the chances that I come out worse than I went in than I have been of anything ever before. I am also afraid that if I do not take this chance I will progress to the extreme that I have read here on this site. I have empathy for each and every one of you whether you are just beginning this journey or if you have been battling it for years. All that I ask is that you trust the person who is experiencing the progression to know whether the surgery is right for them. Do not try to convince them otherwise. I can not for the life of me think of anyone who would willing laydown on that table and have their head cut open knowing the chances of meningitis, paralysis, or the multiple other complications that could arise from this extensive surgery. I can tell you though when I look into the eyes of my children and my husband as they suffer watching me slowly dying before their eyes whether it be physically, mentally, emotionally, or spiritually I will take this chance if for no other reason then to lift some of the weight from their shoulders. Share your stories, your successes, your moments of happiness, your moments of sadness, but never ever isolate one another. Never separate us to teams of those who really suffer and those that pretend to or haven't experienced "real" suffering. You can not look at a picture or a profile and know the story of a life you just cant.
**standing ovation**
I commend you for sharing your many struggles with us and for having the strength to look forward and hope for the best! Only you know what is right for your body, stand behind that and look to your family for the love and encouragement you need!
Nicole Bowen said:
I am also new to this site and not that my opinion matters a bit but the post did come off as bitter and almost uncompassionate to me but I am also aware that was not the intention of the post at all. Sometimes we as humans like to score our suffering on a scale of 1-10 as to who out does who. This has never made any sense to me. Pain is pain, I have no right to ever state that my pain is more or less than that of another. We are all different and what might level me to the next person wouldn't even make them blink and vice versa. I am not here because I want something to be wrong. Since my diagnosis a day does not go by that I do not sit somewhere and cry or scream in anger that this is happening. I have battled cancer three times spent 18 months recovering from a life altering accident that left me with almost every bone in my body broken and now this. I pray that I wake up from this nightmare. I do not want this. When I wake up in the morning I convince myself these symptoms are not as severe as I think they are and today will be better but by the end of the day the realization is there, I am progressing. The depression and anxiety has pushed me to a point of depression that my family is afraid to leave me alone. I have not stopped working and I see the stares and I hear the whispers. My surgery is scheduled for Thursday and I am more afraid of the chances that I come out worse than I went in than I have been of anything ever before. I am also afraid that if I do not take this chance I will progress to the extreme that I have read here on this site. I have empathy for each and every one of you whether you are just beginning this journey or if you have been battling it for years. All that I ask is that you trust the person who is experiencing the progression to know whether the surgery is right for them. Do not try to convince them otherwise. I can not for the life of me think of anyone who would willing laydown on that table and have their head cut open knowing the chances of meningitis, paralysis, or the multiple other complications that could arise from this extensive surgery. I can tell you though when I look into the eyes of my children and my husband as they suffer watching me slowly dying before their eyes whether it be physically, mentally, emotionally, or spiritually I will take this chance if for no other reason then to lift some of the weight from their shoulders. Share your stories, your successes, your moments of happiness, your moments of sadness, but never ever isolate one another. Never separate us to teams of those who really suffer and those that pretend to or haven't experienced "real" suffering. You can not look at a picture or a profile and know the story of a life you just cant.
Nicole - very well said. 
Good luck with your surgery on thursday
Xx
I couldnt agree more, nicole. We are all here for support. We are all scared & brave at the same time. We must give support as well as get it. No room for judgement or one upping eachother. Best wishes, please let us know how you recover. Stay brave
Nicole Bowen said:
I am also new to this site and not that my opinion matters a bit but the post did come off as bitter and almost uncompassionate to me but I am also aware that was not the intention of the post at all. Sometimes we as humans like to score our suffering on a scale of 1-10 as to who out does who. This has never made any sense to me. Pain is pain, I have no right to ever state that my pain is more or less than that of another. We are all different and what might level me to the next person wouldn't even make them blink and vice versa. I am not here because I want something to be wrong. Since my diagnosis a day does not go by that I do not sit somewhere and cry or scream in anger that this is happening. I have battled cancer three times spent 18 months recovering from a life altering accident that left me with almost every bone in my body broken and now this. I pray that I wake up from this nightmare. I do not want this. When I wake up in the morning I convince myself these symptoms are not as severe as I think they are and today will be better but by the end of the day the realization is there, I am progressing. The depression and anxiety has pushed me to a point of depression that my family is afraid to leave me alone. I have not stopped working and I see the stares and I hear the whispers. My surgery is scheduled for Thursday and I am more afraid of the chances that I come out worse than I went in than I have been of anything ever before. I am also afraid that if I do not take this chance I will progress to the extreme that I have read here on this site. I have empathy for each and every one of you whether you are just beginning this journey or if you have been battling it for years. All that I ask is that you trust the person who is experiencing the progression to know whether the surgery is right for them. Do not try to convince them otherwise. I can not for the life of me think of anyone who would willing laydown on that table and have their head cut open knowing the chances of meningitis, paralysis, or the multiple other complications that could arise from this extensive surgery. I can tell you though when I look into the eyes of my children and my husband as they suffer watching me slowly dying before their eyes whether it be physically, mentally, emotionally, or spiritually I will take this chance if for no other reason then to lift some of the weight from their shoulders. Share your stories, your successes, your moments of happiness, your moments of sadness, but never ever isolate one another. Never separate us to teams of those who really suffer and those that pretend to or haven't experienced "real" suffering. You can not look at a picture or a profile and know the story of a life you just cant.