Rosebud

[dbobsnodgrass]

dear Everyone, Ohhhhhhhhhhhhhhhhh, it's a tumor at the brainstem. I am having great difficulty. Radiation therapy 4 days a week for 6 months; then they will decide to operate. My TN-1, and the other stuff, I am getting beat-up on, or upon; if I can be dull and boring and typo correct...this isn't good, though it is okay...my trigeminal has a reason; unlike so many others whom were cast aside by doctors, dentists, chiropractic, PCP's, specialists, et at; I am crying my eyes out. MY FACE STILL HURTS. MY FACE STILL HURTS. I will begin the therapy on Wednesday and I can't rain on my keyboard any longer...It is 86F in Manchester, NH right now and my skin has been peeling for many weeks, What's up with that? I love you all. I am most grateful, bob

[mll]

I'm soo sorry. I also have a tumor on my brain stem-acoustic neuroma. I had gamma knife in March of 2003. Are you having FSR? I would be happy to answer any questions I can. Good luck with everything.

mll

[jennieo]

Bob, I am so sorry. Know that I am praying all goes well with you. Take good care of yourself. You are a strong person to deal with the skin shedding , keep your chin up and know where to look for the strength. We will listen to anything you feel like giving to us. Take good care. Jen

[baywatcher]

Oh bob, whatever can we do for you. Small comfort, perhaps, to know that there's a reason for your TN. And that down the road there's some resolution to the problems. I don't know how long your skin can keep peeling. Has anyone explained whether there is still residual Tegretol hiding somewhere in your body? I know nothing about the physiology of the stuff, I do know that when I had an intense reaction to tetracycline it lasted what seemed like forever after I stopped taking the tet. That was because it goes into your bones and until it had all leached out (leached? whatever?) it kept causing the response. In that case I was actually submerging frequently into a lake (Squam) that was still covered with crunchy spring ice just to relieve the stress of the pain and itch for a few minutes. Have they given you anything to do that relieves the sensitivity of the skin? I don't actually advise ice water dips, it was horrid, but you probably don't want to be in the sun or take hot showers either.

You know, they always suggest that the MRI is not to show the TN, but to eliminate other possibilities. Darn! Was this why they kept having you back for another one? Good doctors being careful and thorough.

Come on back and weep and wail on our (virtual) shoulders and we in turn will keep sending you the etheric vibrations of love and good support. Nancy

[allih]

Bob, I am so sorry that things are so difficult right now. I hope that your skin recovers soon. I am praying for you. I also hope and pray that the tumor is one that they can remove and then your pain will go away. It is not fair to be in so much pain.

Come here anytime, we understand and support you in your trial.

<<<Hug>>>
Alli

[EE03]

Bob,

I am so sorry to hear about the tumor. I hope the outlook is eventually good. I know it has been said before, but feel free to rant all you wish. We all have great shoulders here and we're a bunch of great listeners as well! You are staying in my thoughts and prayers and I hope and wish that they can do something to alleviate some of your discomfort and pain soon. Is anyone doing anything for your skin? I can't offer any advice, but are antihistamines appropriate? Anyway, I'm just thinking out loud here. Take care of yourself.

Ellena (((hugs)))

[Lindat]

Bob,
my prayers are with you. If you have a dog, pour your soul out to him, if you don't have one...go to the pound, find the ugliest one you can, and take him home...he will be there for you when you can't even let your family see your pain....right now you need a buddy ..unconditional love, for when you are at your lowest. When I am too low to let my family see...my dog Boone lets me empty my soul to him, cry and scream, wail away, and he loves me..and I swear he understands too...it helps to release my fear and pain, so I can face my husband and kids with a less depressed and scary Mommy. YOU WILL GET PAST THIS!! We are all here for you, anytime you need....

[southerngirl]

Bob we are here for you, cry your eyes out to us we understand your pain. I also am so sorry about this horrible tumor that has also crossed your path, know that you are in our prayers and try and keep us informed on how things are going for you. You will be though of daily remember that.
CAtherine

[facepain]

I am so sorry to hear this Bob - but your TN has a cause and hopefully a wonderful resolution.... I agree with all the other posters - do come here and post as often as you can... we understand the pain. HUGS to you!