A painful subject.
I have received many angry notes, posts and tweets about my comments on the Katie Couric show last week about my brain surgery and the condition for which I was treated: Chiari Malformation. I had surgery seven years ago, after a decade of misdiagnosis and severe pain. The first two years after surgery were difficult and discouraging (to say the least) but today, I consider myself cured. My doctor also considers me cured. He said if he took my MRIs to a conference, they would say there was no evidence of Chiari. Of course, my surgery left permanent changes, but I have learned how to manage them. I know many people who never had Chiari also suffer occasional headaches and neck tension.
Many people who suffer from Chiari are not as lucky as I am. They have had multiple surgeries and still suffer terrible pain and other symptoms every day. I truly have compassion for them, but it is not my experience.
I do not believe that I have to say that I am not cured when my doctor and I both believe I am. I do not believe I have to pretend to suffer when I do not. I feel better than I have felt in decades. I do not want to make my brain condition the lead story of my life.
I wish all of you with this serious condition the best of luck. I have talked to many people who share the condition, and in fact, have a 'cousin-in-law' who had Chiari. She had the surgery and is also doing extremely well.
I do wish more people who have had successful experiences would speak up. It might be encouraging and give hope.
Those of you who are angry and disappointed that I did not confirm YOUR experience, but only my own, I ask that you consider that I can only speak my truth, and the truth is: I am cured.
My mom has her book and I read some comments in that about how she didn't want to be the face of a medical condition. I'm glad she's cured and doesn't have symptoms but it would be nice to have a spokesperson that could help with funding research. I think she could raise awareness without having to lie and claim she's having issues she's not.
I consider my surgery a success and have fewer symptoms that most post-op people on this board but I still feel passionate about learning everything we can about this condition and getting new treatment options. When I tell people about Chiari I emphasize that I'm lucky that I feel so well and that not everyone has great success with surgery. I also acknowledge that down the road my issues may become worse as this isn't a cure but a treatment.
Wow.....I am so very surprised Ms. Cash and her physician has labeled her CM "Cured."
I am truly glad she feels better than she has in years and considers her surgery a success.
Putting my personal situation aside and just going with clinical research and medical scientific Chiari Expert knowledge and documented commentary.
I have to disagree that surgery is a cure for Chiari Malformations or that there is a cure for Chiari Malformations.
Surgery is a treatment only.
If there was a cure why wouldn't it be shouted from the rafters and every NS have the ability to cure us all?
I hope and pray everyone has such successful outcomes, but I think Ms. Cash's comments has done more harm than
good to the Chiari community of patients. I can see where she could have given some hope for a cure that at this time
doesn't exist.
Tracy Z.
I have not ever considered whether I am cured or not - until now. I do know I feel 1,000 times better than I did before I had surgery (2001) and I haven’t seen a doctor for my Chiari since I was released from my neurosurgeon a year after my surgery! I guess in my mind that is a cure for me. I guess like all diseases, illnesses and injuries - what works for some doesn’t work for others. I hope all who suffer find the answers they are looking for!!!
Speaking about post surgery symptoms, can some of you tell me what you experience? I have the ocassional headache but I do deal with a lot of neck pain & tension especially if I exercise or walk.
Barbara
I am 2 1/2 years post op and my surgery failed.
Headaches, nerve pain, scar tissue so bad that they cannot go in and release any scarring,possibly causing more trauma.
Weakness in my legs and left arm.
Very discouraged…
Anyone else having this much troubke, post op?
I wholeheartedly agree with you, Tracy. From strictly a clinical point of view this is not something for which a cure exists. This is not a disease or disorder like a cancer or mental illness, but a MALFORMATION of bone structure for which surgery is meant to rectify. I do not consider myself 'cured' even though my surgery was, for the most part, successful. I will always have problems associated with my CM. The only way to cure CM would be something that would have to be done in utero or through genetic manipulation (but let's not open that can of worms right now).
That being said, I do not believe that Ms Cash should be derided for her feelings of her condition, as some people are doing. I'm happy she feels better, we need to hear more success stories like hers, especially in the news media. She may have not used the best word choices, perhaps 'treated successfully' instead of 'cured' would have been better, but some of the negative feedback she's received has been with poor word choices as well.
TracyZ said:
Wow.....I am so very surprised Ms. Cash and her physician has labeled her CM "Cured."
I am truly glad she feels better than she has in years and considers her surgery a success.
Putting my personal situation aside and just going with clinical research and medical scientific Chiari Expert knowledge and documented commentary.
I have to disagree that surgery is a cure for Chiari Malformations or that there is a cure for Chiari Malformations.
Surgery is a treatment only.
If there was a cure why wouldn't it be shouted from the rafters and every NS have the ability to cure us all?
I hope and pray everyone has such successful outcomes, but I think Ms. Cash's comments has done more harm than
good to the Chiari community of patients. I can see where she could have given some hope for a cure that at this time
doesn't exist.
Tracy Z.
We shall see when she relapses as sooo many do, how she feels then. Very unfortunate considering there is no cure. Leaves the rest of us looking like lazy complainers.
Thank you so much and I agree with you. I had surgery almost a year ago and I feel wonderful. Surgery was not an easy decision because at the time I couldn't find anyone who had positive outcomes. So I try to respond to anyone who asks in a positive manner and give them hope for a good outcome.
Rosanne Cash had the opportunity to stand up for the rest of us and help being awareness. I suppose I can understand if she doesn’t want to be the face of a disease. I don’t want this disease to be my life but it is. There’s the whole stand up to cancer campaign. Well, who’s going to stand up to chiari for us? We need people in the media, people on the spotlight to help raise awareness. We chiarians have to stick together, and I feel like Rosanne Cash failed us.
I thought that this was a supportive group. Who are we to ask someone to change their experience or how they describe it. I am happy for Ms. Cash. I wish my experience was just like hers was. It wasn’t. But I wouldn’t want her to have to change her wording or anything about how she describes her experience. That is exactly what it is. Her experience. Not mine, maybe not yours either. We should all celebrate that she is pain free and pray that we all get there as well. I guess I am a bit shocked at the criticizism that she is getting when she didn’t seem like she was taking away anything from us. She wasn’t claiming that we are lying about our symptoms, just that she is now symptom free. Sounds cured to me.
I would like to get back to supporting each other through the difficult journey we each have while we learn to deal with our symptoms. I hope that we all have a good day today and an even better week. Take care!
Glad you are doing well!
Certainly the upset is not concerning her current health but more about the innacurate portrayal that the general audience received. I’m sure we are all happy she is symptom free. Wish we all could be so fortunate. Myself, I would not wish her to be a spokesperson, but the depiction leaves the public to believe that we can all be “cured”. Just unfair considering most of us aren’t believed in the first place. Half of our struggle is getting others to understand what we go through…
I am one year and 3 months post op and so far I think my surgery was a success. I rarely have headaches and when I do they are usually sinus or because I've had to skip a meal or something. I do have some muscle pain and occasional spasms in the neck muscles. I try to make it a point to relax my neck and shoulders throughout the day as I know these are triggers for the pain. I usually feel better when I exercise but I started very slowly and always pay attention to how I feel after certain activities and try to avoid things that cause pain. If things are really bad I take an epsom salt bath and a muscle relaxer. Also using arnica gel helps! I'm not sure how far post-op you are but so far I've had improvements as time has passed.
Barbie said:
Speaking about post surgery symptoms, can some of you tell me what you experience? I have the ocassional headache but I do deal with a lot of neck pain & tension especially if I exercise or walk.
Barbara
I don't think anyone meant to speak badly of Roseanne Cash. I agree she shouldn't say she feels badly when she doesn't and that she isn't obligated to be a spokesperson. I think the point most of us were making is that she could advocate for better treatment and research even if she does consider herself cured. I know many cancer survivors who run races or do charity walks for research despite the fact that they are cured.
To sum it up I think what is frustrating to us "nameless" patients is that she is in a unique position to raise awareness due to who she is and who her dad was and it's just a little disappointing that she choose not to. However it's her life, her decision and I don't harbor ill will or bad thoughts towards her. I am glad she is symptom free and is a success story!
Please go read some of the horrific comments made to Ms. Cash on her Facebook page and Twitter in the name of Chiari. They are ugly and appalling. I understand the frustration that she could have made the choice to help, but she didn’t. This private page is perfect to express our frustration as to why she made this choice. The public forum has blown up and is nasty and I am truly concerned about a negative lasting impression on people who had never heard of Chiari before are getting more than the misuse of the word cured ever could.
Another thing to remember is, if you’ve ever been involved in television you know, that what you say is not always everything or exact after the interview has hit the editing room. I did not see the Katie Couric show, but I am sure their actual interview lasted longer than 60 minutes minus commercials (so probably about 40 actual show minutes) and a lot of what was discussed was not actually aired.
I totally agree with You. I had my chiari decompression surgery in 2010 which it was somewhat successful. I still have some symptoms that really bother me but a lot of my symptoms are gone! I think people get upset about this because they have had problems with their Surgeries that may have not went well or they still have severe symptoms. some people I believe just take everything that its a personal attack on them. Which ROSEANN is sharing her story. Why can’t we all just be happy that she had success and feels good. She isn’t god and she can’t change any of our situations, you don’t have to take your frustration out on her because she happy with her success.
Jenger said:
I thought that this was a supportive group. Who are we to ask someone to change their experience or how they describe it. I am happy for Ms. Cash. I wish my experience was just like hers was. It wasn’t. But I wouldn’t want her to have to change her wording or anything about how she describes her experience. That is exactly what it is. Her experience. Not mine, maybe not yours either. We should all celebrate that she is pain free and pray that we all get there as well. I guess I am a bit shocked at the criticizism that she is getting when she didn’t seem like she was taking away anything from us. She wasn’t claiming that we are lying about our symptoms, just that she is now symptom free. Sounds cured to me.
I would like to get back to supporting each other through the difficult journey we each have while we learn to deal with our symptoms. I hope that we all have a good day today and an even better week. Take care!
Roseann I am so happy that you feel great! Stay strong and proud of what you said! Those are your own thoughts on YOUR experience with Chiari. I honestly believe people need to stop relying on other people to spread the word. If they are that passionate about Chiari and a CURE they should be out there spreading awareness.
I had my chiari decompression surgery in March of 2010. My experience was that the surgery helped a lot for me but I do have some symptoms that bother me. I used to have severe headaches and blackouts and the blackouts have stopped and the headaches have decreased a ton.
People get upset because they are unhappy with their own results with their experience so they want to take it out on someone else, which is just plain wrong. Take responsibility for yourself and stop relying on other people to do the dirty work. We all have to deal with this condition, but we are supposed to be there for each other not get upset if someone has a good experience and says they are CURED.
I wish you the best Roseann.
I have read all the comments and then I watched the program and exactly what Ms. Cash said. I can’t for the life of me figure out what all the hupla is all about! Katie brought up her “brain surgery” and asked how she was and did she wonder why her. She said she felt great, was glad she had ‘it’ fixed and why not her she had good insurance. She said nothing about being cured, Chiara wasn’t even mentioned. So, I don’t understand all the uproar. Why not be happy her surgery was successful and she is free from all the pain and other side effects?
My grand daughter had surgery a year ago and both her new neurosurgeon and neurologist have told us her surgery has been successful and the Chiara has been treated. I have asked if the tonsils can fall down again and have been told it is extremely rare once surgery has been performed and the space made available for everything to reside where they belong. So am I missing something???