In Between treatment for Chiari 1 and Lupus

I created this video using my Logitech QuickCam software

Category:

Science & Technology

Tags:

• Chiari
• Malformation/Lupus
• medicine

[chiaringa]

Stevilee, have you had surgery for the chiari yet?

[Stevilee1970]

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.

[timothypb]

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

[Stevilee1970]

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

[yinhap]

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.

[Stevilee1970]

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?

[felixr29]

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

[liseangel62]

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

[713Tawni]

I am w/ U sister! 

[kirafaye]

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.

[dslove63]

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!!! :-)

[care4autoimmunity]

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.

[razzleable]

what do you mean treatments????? There is only one treatment for chiari , surgery .

[chiaringa]

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

[badcord1]

i have chiari, can u tell me the diet? willing 2 try anything

[nettels73]

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

[Lupusology]

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.