Hi Stevelli, your video is exceptionnal. Thanks a lot. I saw myself in you. Having all thoose symptoms, no-one can't even imagine the horror of the pain and the headaches and all what comes with it. I am in pain since 10 days now, being having injection in the back of my head, but having to go back to the hospital because it doesn't work out. Been in lots of pain and feeling lonely too. Just thinking if I could ever live with it for the rest of my life. Your couragous, thanks a lot xoxox
There are people who are trying to help. And just a note: some health professionals suffer from these diseases too- or have family who do. It's just as hard for them to deal with this too. But I agree that more needs to be done- MUCH MORE.
It's unfortunate that we still don't know much about how to deal with these. But let's change that.
There are people who are passionate about helping people like you. Join us.
Hon, b strong, keep ur Luv 4 God, because no one knows Gods plan, & why some r 2 suffer, while others do not, maybe this is ur path through all this, 2 help others, so they do not feel alone & the only one 2 suffer, as u do. YES some people r very ignorant & uncaring, but there r also people that do care & do love u, VERY MUCH, so please b strong, don't give up & continue 2 post 4 us, so that we can b strong together. Don't be 2 upset how u look when u r ill, ur heart is what really counts. xx
Right on, I understand the close minded people. You are correct they do not have a clue.
My wife is on massive doses of oxycontin (11 others) everyday, she has liquid morphine for the bad weeks. She will not survive.
But, I wanted to mention my daughter was implanted last April with a Medtronic intrathecal medication pump to deliver opioids directly into here spine. It is working great, giving her a lot of comfort.
I could not agree with you more. You are wonderful, keep up the videos.
I to got the medtronic pump and it was my savior for chiari/sm EDS and all the other issues - however its now affecting my sleep apnea so we are checking out other medication for the pump.
Unfortunately, due to a Car accident I had in '94, Surgery is extremely difficult. I've been told now by 2 Nurosurgeons that surgery is out of the question, because of a crushed vertibrae too close to the malformation.
This may sound like an eye-roller, but are you interested in a dietary approach to reducing your pain and malaise? After my chiari surgery, I developed "fibromyalgia" and headaches so intense I was rendered blind at times. I finally identified food issues that brought them on. My hope is that you may be able to reduce the intensity of your suffering. . . Before I went in for surgery, my surgeon got a second opinion from six other specialists in the region. . .
These food additives are notorious for causing pain and dizziness. Read food labels and eliminate them: all artificial sweeteners; aspartame, nutrasweet, splenda, equal. . .;MSG,(monosodium glutamate,); sodium nitrate/nitrite, sulphates/sulphites. The following foods can cause inflammation: gluten, (from wheat,) soy and milk products. These foods and additives don't cause, rather, they can aggravate the chiari condition which is already hindered with inflammation and impaired circulation.rsvp
Hello to a fellow Chiarian. I have type I and I have Tethered Cord. I like you have lost all. I am male 45 Electronics Eng. I have had a decompression and spinal cord surgery. All in the last 3 yrs. Lost wife, 2houses, boat and job. I now have a Fiancee with Chiari I and Collied cycst in her brain. You are not alone at all. Yes it is painful, lonley, it sucks.Go to the Chiari Institute in New York DR B. There are great Dr's for Chiari u must find them. DON'T give up. Your life is a gift.
I admire you after our "talk" and have a place for you in my heart not only to remind me to be more considerate and open minded but because you left an impression on me and I wish you health and happiness.
Get better beautiful!
____________________________
yes people, I am that person she is talking about -the close minded asshole that commented in the first video and yes, I apologized
I just ran across your video and I hope you find the right help. I've had six surgeries since 2001 with chiari. And your right about the medical community and people just not getting it. I did find a good neuro in my area, but this was after going through hell with many other doctors. My wish is that we all find some understanding and caring.
I'm inquiring about symptoms of Chiari, I've had headaches with pain in the neck. I've had brain fog with abdominal pain also. I know you are not a doctor, but I need clues to a direction to go. Thanks
All you can do is go to doctors and not give up. There are so many different symptoms to Chiari 1 malformation, so all I can suggest is get an MRI done of your head and neck. I hope that is somewhat helpful, 'cuz I am still fighting the good fight.
Doctors have called me a lier and I cried a lot. Just because they couldn't see my pain. Come to find out, I have Chiari. For years I suffered with a diagnosis of Chronic Pain and degenerative disc disease. The majority of my pain was from Chiari. I admire your strength! I KNOW first hand what you are going through and it is important that we keep spreading the knowledge. Keep it up! Hang in there, you HAVE Chiari and Lupus, but YOU ARE NOT Chiari and YOU ARE NOT Lupus!
I hope you get well because I think you will make a wonderul actress because you are so expressionate and you have a fantastic voice!! Totally! Film actress?
I have Chiari as well. It's effected my mind as well. I've speant the past year trying to pretend everything is fine, but I've been in so much pain and now my husband and sister and parents seem cross and angry with me. Maybe because I've turned into such a mean and scary invalid. It's hard to go on. I haven't got treatment besides meds.
I am so sorry to hear that. I know how you feel. But please keep your chin up and it helps to go see a therapist. I see on constantly. Depression is one of the symptoms of Chiari 1 Malformation. So hopefully you find the right specialist who knows what they are doing. I'm still trying to find mine.
Well you are very welcome. If you havent noticed I would like to get to know you better. I hope that you dont mind me doing that, If you dont I understand. But in this video you said that you have no husband? what happened? did you lose him from a illness? or something, You are beautiful, i can see why he would leave you for anything else? Again I hope that you dont mind me asking questions. I guess i dont want to lose my husband either if it was because you are sick. I have a illness too.
Why wouls I be mad at such a caring comment? I have considered the surgery, I have actually begged for it, but unfortunately I was in a severe car accident years ago that has crushed one of my discs near the malformation, so they refuse to do it. It is too dangerous they have said, apparently 1 fraction of a millimeter couold cause complete paralisis or death.All they can do is try and keep me as comfortable as possible, and try new treatments for pain as they come out. Thank you for caring.
I was just looking at other videos when i stumbled apon this one about the Surgery you can get for Chiari 1 malformation.Have you ever concitered it?or looked into getting it?For someone that is in so much pain,and suffering that you are having;if i were you I would really be wanting it if it would help some,all the people that I have seen about that Surgery say it works great.I guess i just think someone so beautiful and young shouldnt be in such pain.the video is called "Surgery" dont be mad.
Hi Stevelli, your video is exceptionnal. Thanks a lot. I saw myself in you. Having all thoose symptoms, no-one can't even imagine the horror of the pain and the headaches and all what comes with it. I am in pain since 10 days now, being having injection in the back of my head, but having to go back to the hospital because it doesn't work out. Been in lots of pain and feeling lonely too. Just thinking if I could ever live with it for the rest of my life. Your couragous, thanks a lot xoxox
liseangel62 3 months ago
I am w/ U sister!
713Tawni 1 year ago
I know how you feel. I have yet to be diagnosed but feel like I am going crazy with all of these symptoms. hang in there girl!!! :-)
dslove63 2 years ago 2
There are people who are trying to help. And just a note: some health professionals suffer from these diseases too- or have family who do. It's just as hard for them to deal with this too. But I agree that more needs to be done- MUCH MORE.
It's unfortunate that we still don't know much about how to deal with these. But let's change that.
There are people who are passionate about helping people like you. Join us.
care4autoimmunity 2 years ago
what do you mean treatments????? There is only one treatment for chiari , surgery .
razzleable 2 years ago
Hon, b strong, keep ur Luv 4 God, because no one knows Gods plan, & why some r 2 suffer, while others do not, maybe this is ur path through all this, 2 help others, so they do not feel alone & the only one 2 suffer, as u do. YES some people r very ignorant & uncaring, but there r also people that do care & do love u, VERY MUCH, so please b strong, don't give up & continue 2 post 4 us, so that we can b strong together. Don't be 2 upset how u look when u r ill, ur heart is what really counts. xx
nettels73 2 years ago 2
Right on, I understand the close minded people. You are correct they do not have a clue.
My wife is on massive doses of oxycontin (11 others) everyday, she has liquid morphine for the bad weeks. She will not survive.
But, I wanted to mention my daughter was implanted last April with a Medtronic intrathecal medication pump to deliver opioids directly into here spine. It is working great, giving her a lot of comfort.
I could not agree with you more. You are wonderful, keep up the videos.
Lupusology 3 years ago 2
I to got the medtronic pump and it was my savior for chiari/sm EDS and all the other issues - however its now affecting my sleep apnea so we are checking out other medication for the pump.
kirafaye 2 years ago
Stevilee, have you had surgery for the chiari yet?
chiaringa 3 years ago 3
Unfortunately, due to a Car accident I had in '94, Surgery is extremely difficult. I've been told now by 2 Nurosurgeons that surgery is out of the question, because of a crushed vertibrae too close to the malformation.
So still searching and still hoping.
Stevilee1970 3 years ago
This may sound like an eye-roller, but are you interested in a dietary approach to reducing your pain and malaise? After my chiari surgery, I developed "fibromyalgia" and headaches so intense I was rendered blind at times. I finally identified food issues that brought them on. My hope is that you may be able to reduce the intensity of your suffering. . . Before I went in for surgery, my surgeon got a second opinion from six other specialists in the region. . .
chiaringa 3 years ago 2
i have chiari, can u tell me the diet? willing 2 try anything
badcord1 2 years ago
These food additives are notorious for causing pain and dizziness. Read food labels and eliminate them: all artificial sweeteners; aspartame, nutrasweet, splenda, equal. . .;MSG,(monosodium glutamate,); sodium nitrate/nitrite, sulphates/sulphites. The following foods can cause inflammation: gluten, (from wheat,) soy and milk products. These foods and additives don't cause, rather, they can aggravate the chiari condition which is already hindered with inflammation and impaired circulation.rsvp
chiaringa 2 years ago
thank you for posting this
jma574 3 years ago 3
Hello to a fellow Chiarian. I have type I and I have Tethered Cord. I like you have lost all. I am male 45 Electronics Eng. I have had a decompression and spinal cord surgery. All in the last 3 yrs. Lost wife, 2houses, boat and job. I now have a Fiancee with Chiari I and Collied cycst in her brain. You are not alone at all. Yes it is painful, lonley, it sucks.Go to the Chiari Institute in New York DR B. There are great Dr's for Chiari u must find them. DON'T give up. Your life is a gift.
Beachbumglcb 3 years ago 3
Stephanie,
how are you? I honestly hope you are doing ok.
Thinking of you.
Stay strong sweetheart.
I admire you after our "talk" and have a place for you in my heart not only to remind me to be more considerate and open minded but because you left an impression on me and I wish you health and happiness.
Get better beautiful!
____________________________
yes people, I am that person she is talking about -the close minded asshole that commented in the first video and yes, I apologized
felixr29 3 years ago 4
That's awesome. Glad to hear it.
EveSerene 3 years ago 3
I just wanted to added, but forgot, is there anything I can do to help? I just wish I could help, I so sorry your going through such a terrible time.
562203 3 years ago 3
Hi stevilee,
I just ran across your video and I hope you find the right help. I've had six surgeries since 2001 with chiari. And your right about the medical community and people just not getting it. I did find a good neuro in my area, but this was after going through hell with many other doctors. My wish is that we all find some understanding and caring.
562203 3 years ago 2
I'm inquiring about symptoms of Chiari, I've had headaches with pain in the neck. I've had brain fog with abdominal pain also. I know you are not a doctor, but I need clues to a direction to go. Thanks
timothypb 3 years ago
All you can do is go to doctors and not give up. There are so many different symptoms to Chiari 1 malformation, so all I can suggest is get an MRI done of your head and neck. I hope that is somewhat helpful, 'cuz I am still fighting the good fight.
God bless you,
Stephanie
Stevilee1970 3 years ago
Doctors have called me a lier and I cried a lot. Just because they couldn't see my pain. Come to find out, I have Chiari. For years I suffered with a diagnosis of Chronic Pain and degenerative disc disease. The majority of my pain was from Chiari. I admire your strength! I KNOW first hand what you are going through and it is important that we keep spreading the knowledge. Keep it up! Hang in there, you HAVE Chiari and Lupus, but YOU ARE NOT Chiari and YOU ARE NOT Lupus!
sigmaspirit2003 3 years ago
I hope you get well because I think you will make a wonderul actress because you are so expressionate and you have a fantastic voice!! Totally! Film actress?
I have Chiari as well. It's effected my mind as well. I've speant the past year trying to pretend everything is fine, but I've been in so much pain and now my husband and sister and parents seem cross and angry with me. Maybe because I've turned into such a mean and scary invalid. It's hard to go on. I haven't got treatment besides meds.
yinhap 4 years ago 2
I am so sorry to hear that. I know how you feel. But please keep your chin up and it helps to go see a therapist. I see on constantly. Depression is one of the symptoms of Chiari 1 Malformation. So hopefully you find the right specialist who knows what they are doing. I'm still trying to find mine.
Keep in touch ok?
Stevilee1970 4 years ago
Well you are very welcome. If you havent noticed I would like to get to know you better. I hope that you dont mind me doing that, If you dont I understand. But in this video you said that you have no husband? what happened? did you lose him from a illness? or something, You are beautiful, i can see why he would leave you for anything else? Again I hope that you dont mind me asking questions. I guess i dont want to lose my husband either if it was because you are sick. I have a illness too.
mullercc44 4 years ago
Why wouls I be mad at such a caring comment? I have considered the surgery, I have actually begged for it, but unfortunately I was in a severe car accident years ago that has crushed one of my discs near the malformation, so they refuse to do it. It is too dangerous they have said, apparently 1 fraction of a millimeter couold cause complete paralisis or death.All they can do is try and keep me as comfortable as possible, and try new treatments for pain as they come out. Thank you for caring.
Stevilee1970 4 years ago
I was just looking at other videos when i stumbled apon this one about the Surgery you can get for Chiari 1 malformation.Have you ever concitered it?or looked into getting it?For someone that is in so much pain,and suffering that you are having;if i were you I would really be wanting it if it would help some,all the people that I have seen about that Surgery say it works great.I guess i just think someone so beautiful and young shouldnt be in such pain.the video is called "Surgery" dont be mad.
mullercc44 4 years ago