Numb Chin Syndrom

FJH,



I am sorry for the upsetting news. I am sorry but I dont know the most likely cause of a numb chin. Could you share that with us and perhaps we dould better understand. I do recall someone else on hete posting about this problem quite awhile ago, but do mot recall anything else about it.

Yeah, I never heard of "numb chin syndrome" either so have no idea what horror the prognosis may bring.

I'm not Stage IV, but I can google, and perhaps this is what the poster is so frightened of:

http://www.turner-white.com/pdf/hp_jan00_chin.pdf

Mary 

I lurk here often and I have learned an enormous amount. I thank you for that. Because you have never " heard" of numb chin syndrome you all thought you had the right to be incredible cruel and hurtful. I think you should be ashamed of yourselves!

It is the attitude and tone a number of posters take to what they perceive as an EBC poster invading the stage four board. And I think you are just making excuses now. I just think it doesn't hurt to remember how frightened we were when we thought we may have mets. And I know you will say they have plenty of other places to post! And I am sorry that this is the way I have introduced myself because overall I love visiting here but I felt I had lurked enough! And if it is cultural and being Australian i just don't "get" American thinking then I apologise. Tracey

FJH, numb chin syndrome can indeed be a sign of mets as you have already discovered from googling. I would really encourage you to see your oncologist as the only way you will know the cause is to have further tests and this will either confirm or set your mind at rest. There are other causes related to dental problems. I know of a couple of women who are doing really well despite the gloomy prognosis you often find on Dr Google. will keep my fingers crossed that your fears are not confirmed. Tracey

AussieTracey wrote:  "Because you have never " heard" of numb chin syndrome you all thought you had the right to be incredible cruel and hurtful. I think you should be ashamed of yourselves!"   "It is the attitude and tone a number of posters take to what they perceive as an EBC poster invading the stage four board. And I think you are just making excuses now"

I'm stunned.   Please point out the "incredibly cruel and hurtful" posts because I sure don't see them.

I have a feeling this is one of those situations that we couldn't win with women like you out there.  We either ignore her,  and then we are the incredibly mean and hurtful metsters who won't answer a worried woman, or we say we had never heard of it (as we did) and we are the incredibly mean and hurtful women who won't give answers to a worried woman.  

We can't win when people are out to get us.

I know I had never heard of this numb chin thing and didn't have it, and since she didn't bother to put any information about it in her post there wasn't much to say. She was vague, saying that it was horrfying but no details about it or why it was horrifying,  and then wanted advice.  Since none of us had experienced it, what advice are we to give?  Are we supposed to google her symptoms for her?  We don't do that here, we discuss our own experience and symptoms.  If you google something and add cancer to it, you are going to find it as a symptom of cancer.  It all comes up, everything is a cancer symptom.    Numb chins, numb toes, numb skulls.

Don't you think if a bunch of metsters come in and say they had never heard of something, maybe the OP would take it as COMFORTING?  Maybe that's what we were thinking?  It is what I was thinking when I added my note.  "Well, maybe if enough people say they never heard of it she'll worry less." 

They grow those horses really high in Australia, don't they? 

I only speak for me, but if I wanted to tell that woman not to post in this section, I would have told her not to post in this section.

It always amazes me when somebody who has contributed absolutely nothing to the well-being of others on this board - who has never come out of lurkdom to wish somebody well, or give advice, or express sympathy, decides to do use their first posts to chastize women who have spent a great amount of time sharing with and helping others through their disease.  It's really quite stunning, the hubris of doing something like that.

Welcome to the board. 

Barb, I can't even imagine who she was talking to. Reading up to her post, I see that you have almost 2,000 supportive posts.  Justjudie has over 2,000 suppotive posts.  Chickadee has over 2,000 supportive posts. Caren has 2500 posts, Mary has 1500+.   I'm up to 4,000 posts.  All of us have given time, energy, days that are meant to support and help, share experiences and knowledge.  If this person had taken the time go go read all our posts, she would have a clear picture of us, rather than going on some mythical "tone" in her head.

Somebody who has never had the courtesy to wish us well has no business telling us what we are doing wrong.  There are givers and takers in this world and online too.  All of us have shared our personal experiences, some of them hard.  We've sent cards, sent well-wishes, watched in sadness and somebody declined, mourned when they were lost, sent words to comfort families, rejoiced with good news and offered hope with bad.  We are givers.  A taker is a lurker who hides and takes information without ever giving support. When one then comes out of the woodwork to tell us how we are doing it wrong, they are worse than a taker.  I think they may be a troll.

I fell for it too.  I forget that trolls even find women with terminal cancer. Sad.

Me too. I was only trying to find out what she had read on google. Seems strange anyone would take offense to our asking. But then it takes all kinds to make a world, as they say.

I'm certainly saddened and hurt to hear you think my thousands of posts of support here is somehow a negative to the community.  I thought the message I was sending was one of friendship, for many reasons, including starting the Five Questions posts, for sharing my stories about my alcoholic family, my difficulty with c-diff, my back-and-forth with my liver mets.    Sharing my ideas, supporting others, giving information and sometimes sharing very difficult personal struggles is what I have done since 2009.  Probably half my posts were in the early stage section, saying "you can do it!"   Same thing I've done on my blog with over 500 posts.  It's laughable to think I don't help early diagnosed woman - I've tried to give early diagnosed women hope that they can get through it, and I have shared my treatment every step of the way for 3 years.  I've answered literally thousands of emails, cheered people on and have been rewarded with a lot of support back.  

But, one line you read wrong and I get publicly attacked? You couldn't even PM me to ask for an explanation?  

And, ladies, she admitted in a private message it was me she was going after.  For saying this:  "Yeah, I never heard of "numb chin syndrome" either so have no idea what horror the prognosis may bring."

That is cruel?  I even used the same words the OP used.

I still don't see how it's cruel, and I haven't gotten an answer, except something about tone, which is in the ear of the beholder.

Not everybody likes everybody else.  But in a big community we cut each other slack.  Tracey came out of nowhere to slam me and now all kinds of people are writing her to support her?  Really?

I'm not sure I believe it and I hope it's not true. .

Maybe if you listen to it with a different tone, one less strident, you will change your mind.  You can listen to my voice on my blog and see what I sound like.  But, trolls usually just like stirring up trouble, not being fair.

Ann, you have my support 100% I have received lots of information and support from you and so many others. I hope you won't let this one person discourage you. I think I would use the "blocking" feature so you won't have to hear from her anymore.

i pray that this fear that fjh is having doesnt turn out to be mets. but  if it is , i pray she will come back for support.

Hi fjh, a few months ago I noticed numbness on the right side of my chin and lower lip. I didn't think too much about it then finally called. My nurse said,"oh no". Scared me to death then she said she would call me right back with a time for a brain scan which I had and it seemed it showed nothing and that I could have a small something in my jaw and we would just watch it. In a couple of weeks the whole thing went away. I gotta say I've been some nervous about it ever since but there is still no sign of it. I don't know what the "oh no" part was about and it hasn't come up again so I'm just trying to put this in my ever growing denial bag and forget it. Please let us know how you are.. Love and prayers, marsha

Dear ladies,

first of all I have to tell you I admire and applaud your courage and stamina. You girls are heroes! I read your stories and I just wish I could help you all get well, including my sister.
Yes, she has been diagnosed in 2008. In 2011, they found what they believed was mets to her bones. This August they told her she was fine and that the changes on her bones were due to Aredia (?!). A week ago, her chin and lower lip on the left side went numb. She also has increased LDH levels in her blood. The other night, she felt like she couldn't breath and thought it was just due to stress, but her friend made her go to doctors and they gave her oxygen so she was ok again. Dentist and facial surgeon found no problem in her jaw. Brain MR scan showed a cyst on the top of her scull which again they believe has nothing to do with the numbness and is harmless. We are now waiting for bone scan and we are dreading it. She is now seeing doctors every day and as ever, they're convinced it's nothing serious. Us two however, cannot close our eyes to a possibility of it being something deadly. They are giving her B12 injections every couple of days, hoping to sort the numbness. Today she started feeling itchy there (can't see any of you ladies had that). She has also increased the dosage of her supplements that she was taking anyway, including B vitamin complex, vitamin C, D, A, glucosamine sulphate and few others for general immunity. We have found online that the facial numbness as well as increased LDH can come as a result of B12 deficiency, amongst other things, and she has had low blood count for months but they did nothing about it for some reason and her supplements obviously didn't help much (they say only injections can sort B12 deficiency).
I will keep you posted for my sister, as she hardly speaks any English. This is a heartache. Breast cancer must be the hardest and most painful thing, in all possible ways, that can happen to a woman, such a gentle and sensitive creature. The fact that my sister lives in a kind of society where women - breast cancer patients do not get enough support in their community and life in general makes the whole thing even harder.
I really hope you all ladies get well very soon. You prove it for all of us, how strong women can be and how much burden is there on our back. So thank you, and please take care! Good luck!