Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 Hi , You wrote : >I am not suffering as much as so many of > you. I guess I am one of the lucky ones. This is difficult for me. I > am not one to seek the help of others...I like to suffer in silence. > If it weren't for my wife, I'd be suffering through my " headaches " > without saying a word. Once you know you have chiari...don't mess around with your head in the clouds...do be very aware of the many folks who did suffer in silence and who may have benefitted from more timely treatment. I believe I could have had a better outcome had I known and been treated sooner. Also be aware that with some people, symptoms that were just annoying and dogging...can turn into a situation of rapidly deteriorating neurological function where timely treatment is important. I say this to encourage you to find a neurosurgeon you trust...even if you are not ready mentally for surgery. Visit the neurosurgeon and have an action plan if and when action is deemed prudent. It is a nasty situation to all the sudden have to wait 3 months for surgery when you are in need of it today. I don't say this to scare anyone...just to remind us that we have to live with the consequences of our decisions or lack thereof. Meribeth in MI chiari 1 surgery 9/99 Symptoms, Etc > Hello, everybody! > WOW!!! Sorry to lock caps for that but I have to say that I am > overwhelmed by the responses I received. When I looked at my e-mail > this morning I about fell out of my chair (caught myself so I didn't > crack my skull on the floor :-)) > > For those who asked, I am 33 years old and live north of Denver, > Colorado. I am waiting for my insurance company, United Healthcare, > to approve a referral to a neurologist. My wife found the Rocky > Mountain Neurological Alliance. Has anybody heard of them? If so, > what's the scoop on them. > > As I am still learning about Chiari, I am not sure what can be > attributed to this. I initially went to my regular doc because of an > intense, isolated pain which starts in the top of my head and extends > to behind my right eye. The doc suspected (still does) Trigeminal > Neuralgia so sent me in for an MRI to rule out anything more serious. > Guess what we found? There is no mention of how many mm have seeped > (I don't know the correct terminology yet). I am getting copies of my > MRI images today so I can peruse them at great length. > > Other symptoms which I am thinking could be related are tingling in > my hands and arms. I also get this odd pain between my shoulderblade > and spine which all of my doctors (for the last 10 years or so) have > told me is nothing but turning my head too fast. I also get a > pinching pain at the base of my skull when I tilt my head to look up. > > Other than that (if these are symptoms) I guess you could say that I > am asymptomatic, and have been since the beginning. Oh...the MRI also > turned up a sinus infection...something I have never had in my life > (including all through my childhood). It feels like things are > getting much worse at a rapid rate over the last month or so. > > When I read your stories of the things you are experiencing, I feel > as though I am a whiner. I am not suffering as much as so many of > you. I guess I am one of the lucky ones. This is difficult for me. I > am not one to seek the help of others...I like to suffer in silence. > If it weren't for my wife, I'd be suffering through my " headaches " > without saying a word. > > I'm done. I want to say " thank you " from the bottom of my heart to > each and every one of you. I have never received such a warm welcome > or so much concern anywhere in my life (outside my biological > family...and wife). I know that whatever I go through, I will have > the best group of people...the best extended family...to support. > Once I become an " older " member, I will return the favor by doing for > others what you all are doing for me. > > With all my love, gratitude, and prayers for your health, > > > > Help section: http://www.yahoogroups.com/help/ > > NOTE: NCC refers to posts with No Chiari Content > > To Unsubscribe Yourself: chiari-unsubscribeYahoogroups > > WACMA Home: www.pressenter.com/~wacma > > WACMA List: www.eGroups.com/group/chiari > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 I agree completely with you Meribeth... jenn - IL decompressed April '01 > [Original Message] > > To: ; <chiari > > Date: 11/1/01 9:45:54 AM > Subject: Re: Symptoms, Etc > > Hi , > > You wrote : > > >I am not suffering as much as so many of > > you. I guess I am one of the lucky ones. This is difficult for me. I > > am not one to seek the help of others...I like to suffer in silence. > > If it weren't for my wife, I'd be suffering through my " headaches " > > without saying a word. > > Once you know you have chiari...don't mess around with your head in the > clouds...do be very aware of the many folks who did suffer in silence and > who may have benefitted from more timely treatment. I believe I could have > had a better outcome had I known and been treated sooner. > > Also be aware that with some people, symptoms that were just annoying and > dogging...can turn into a situation of rapidly deteriorating neurological > function where timely treatment is important. I say this to encourage you > to find a neurosurgeon you trust...even if you are not ready mentally for > surgery. Visit the neurosurgeon and have an action plan if and when action > is deemed prudent. It is a nasty situation to all the sudden have to wait > 3 months for surgery when you are in need of it today. > > I don't say this to scare anyone...just to remind us that we have to live > with the consequences of our decisions or lack thereof. > > Meribeth in MI > chiari 1 > surgery 9/99 > > > > Symptoms, Etc > > > > Hello, everybody! > > WOW!!! Sorry to lock caps for that but I have to say that I am > > overwhelmed by the responses I received. When I looked at my e-mail > > this morning I about fell out of my chair (caught myself so I didn't > > crack my skull on the floor :-)) > > > > For those who asked, I am 33 years old and live north of Denver, > > Colorado. I am waiting for my insurance company, United Healthcare, > > to approve a referral to a neurologist. My wife found the Rocky > > Mountain Neurological Alliance. Has anybody heard of them? If so, > > what's the scoop on them. > > > > As I am still learning about Chiari, I am not sure what can be > > attributed to this. I initially went to my regular doc because of an > > intense, isolated pain which starts in the top of my head and extends > > to behind my right eye. The doc suspected (still does) Trigeminal > > Neuralgia so sent me in for an MRI to rule out anything more serious. > > Guess what we found? There is no mention of how many mm have seeped > > (I don't know the correct terminology yet). I am getting copies of my > > MRI images today so I can peruse them at great length. > > > > Other symptoms which I am thinking could be related are tingling in > > my hands and arms. I also get this odd pain between my shoulderblade > > and spine which all of my doctors (for the last 10 years or so) have > > told me is nothing but turning my head too fast. I also get a > > pinching pain at the base of my skull when I tilt my head to look up. > > > > Other than that (if these are symptoms) I guess you could say that I > > am asymptomatic, and have been since the beginning. Oh...the MRI also > > turned up a sinus infection...something I have never had in my life > > (including all through my childhood). It feels like things are > > getting much worse at a rapid rate over the last month or so. > > > > When I read your stories of the things you are experiencing, I feel > > as though I am a whiner. I am not suffering as much as so many of > > you. I guess I am one of the lucky ones. This is difficult for me. I > > am not one to seek the help of others...I like to suffer in silence. > > If it weren't for my wife, I'd be suffering through my " headaches " > > without saying a word. > > > > I'm done. I want to say " thank you " from the bottom of my heart to > > each and every one of you. I have never received such a warm welcome > > or so much concern anywhere in my life (outside my biological > > family...and wife). I know that whatever I go through, I will have > > the best group of people...the best extended family...to support. > > Once I become an " older " member, I will return the favor by doing for > > others what you all are doing for me. > > > > With all my love, gratitude, and prayers for your health, > > > > > > > > Help section: http://www.yahoogroups.com/help/ > > > > NOTE: NCC refers to posts with No Chiari Content > > > > To Unsubscribe Yourself: chiari-unsubscribeYahoogroups > > > > WACMA Home: www.pressenter.com/~wacma > > > > WACMA List: www.eGroups.com/group/chiari > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 I believe that most of us have someting in common. That is that we have suffered our pain in private and quietly. I know I haven't kept track of every pain and itch and certainly haven't reported but the worse, sometimes out of habit, not really counting what I felt as unusual I accepted I had a pain diease (wrongly) and only stopped to pay attention when something became unberable. For once I find I'm not alone that's a great feeeling. But also I'm gripping more than usual because now somebody else understands and has been there too and has some imput to my misery in other words if people ask you how you feel my answer is usually, fine thank you. most people don't want to know all my hurts nor would they know how to handle it or they think you have a mental problem. Her I find solice gripping when I waant too and I know I'm not alone. I do cry and stop and pray over each message of pain or hurt if nothing else in my present state I can be an intercesor which I consisder a high calling. Love and Hoggs, Debby in Texas --- " M. Newhof " wrote: > Hi , > > You wrote : > > >I am not suffering as much as so many of > > you. I guess I am one of the lucky ones. This is > difficult for me. I > > am not one to seek the help of others...I like to > suffer in silence. > > If it weren't for my wife, I'd be suffering > through my " headaches " > > without saying a word. > > Once you know you have chiari...don't mess around > with your head in the > clouds...do be very aware of the many folks who did > suffer in silence and > who may have benefitted from more timely treatment. > I believe I could have > had a better outcome had I known and been treated > sooner. > > Also be aware that with some people, symptoms that > were just annoying and > dogging...can turn into a situation of rapidly > deteriorating neurological > function where timely treatment is important. I say > this to encourage you > to find a neurosurgeon you trust...even if you are > not ready mentally for > surgery. Visit the neurosurgeon and have an action > plan if and when action > is deemed prudent. It is a nasty situation to all > the sudden have to wait > 3 months for surgery when you are in need of it > today. > > I don't say this to scare anyone...just to remind us > that we have to live > with the consequences of our decisions or lack > thereof. > > Meribeth in MI > chiari 1 > surgery 9/99 > > > > Symptoms, Etc > > > > Hello, everybody! > > WOW!!! Sorry to lock caps for that but I have to > say that I am > > overwhelmed by the responses I received. When I > looked at my e-mail > > this morning I about fell out of my chair (caught > myself so I didn't > > crack my skull on the floor :-)) > > > > For those who asked, I am 33 years old and live > north of Denver, > > Colorado. I am waiting for my insurance company, > United Healthcare, > > to approve a referral to a neurologist. My wife > found the Rocky > > Mountain Neurological Alliance. Has anybody heard > of them? If so, > > what's the scoop on them. > > > > As I am still learning about Chiari, I am not sure > what can be > > attributed to this. I initially went to my regular > doc because of an > > intense, isolated pain which starts in the top of > my head and extends > > to behind my right eye. The doc suspected (still > does) Trigeminal > > Neuralgia so sent me in for an MRI to rule out > anything more serious. > > Guess what we found? There is no mention of how > many mm have seeped > > (I don't know the correct terminology yet). I am > getting copies of my > > MRI images today so I can peruse them at great > length. > > > > Other symptoms which I am thinking could be > related are tingling in > > my hands and arms. I also get this odd pain > between my shoulderblade > > and spine which all of my doctors (for the last 10 > years or so) have > > told me is nothing but turning my head too fast. I > also get a > > pinching pain at the base of my skull when I tilt > my head to look up. > > > > Other than that (if these are symptoms) I guess > you could say that I > > am asymptomatic, and have been since the > beginning. Oh...the MRI also > > turned up a sinus infection...something I have > never had in my life > > (including all through my childhood). It feels > like things are > > getting much worse at a rapid rate over the last > month or so. > > > > When I read your stories of the things you are > experiencing, I feel > > as though I am a whiner. I am not suffering as > much as so many of > > you. I guess I am one of the lucky ones. This is > difficult for me. I > > am not one to seek the help of others...I like to > suffer in silence. > > If it weren't for my wife, I'd be suffering > through my " headaches " > > without saying a word. > > > > I'm done. I want to say " thank you " from the > bottom of my heart to > > each and every one of you. I have never received > such a warm welcome > > or so much concern anywhere in my life (outside my > biological > > family...and wife). I know that whatever I go > through, I will have > > the best group of people...the best extended > family...to support. > > Once I become an " older " member, I will return the > favor by doing for > > others what you all are doing for me. > > > > With all my love, gratitude, and prayers for your > health, > > > > > > > > Help section: http://www.yahoogroups.com/help/ > > > > NOTE: NCC refers to posts with No Chiari Content > > > > To Unsubscribe Yourself: > chiari-unsubscribeYahoogroups > > > > WACMA Home: www.pressenter.com/~wacma > > > > WACMA List: www.eGroups.com/group/chiari > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 I have to also agree. Six months ago I found out I had acm and each day seems to be worse than the day before. I used to have good days and bad days, now it is mostly just bad days. I think I am one of the fortunate ones that seeked out help right away instead of suffering silently for years. This past week has been the worst. I feel so lousy, I think I am really dead and just don't know it yet. While I'm here, can someone tell me what they take for pain? A few months ago I had a root canal done and the dentist gave me vicodin. When I had a really bad head/neckache the other day, I took one of those pills and it helped alot. I called my PCP to see if she would give me a perscription for vicodin and she told me NO. Said it was a narcotic. So now I am kinda miffed at her. Anyway, please get in to see a specialist asap. Dianne Quote Link to comment Share on other sites More sharing options...
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