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Thankful
- By dizzybee · New reply 5:00 am
- Journal · 3 replies
- Just wanted to say that despite all the troubles in my life and all the ills in the world, I am still thankful. Thankful, that my husband has a job and we can pay our bills and put food on the table ...
3 yrs. and counting
- By rspu48 · New reply November 23, 2009
- Journal · 9 replies
- My name is Robin and I am a 3 yr. survivor of a stage 4 glioblastoma multiforme. My last MRI was Jan. 09 which showed no recurrence of the tumor. I have spent 3 yrs. at home recovering not only from a ...
Sleepy all the Time now!
- By LizardmyOli · New reply November 21, 2009
- Journal · 8 replies
- Who knows what is up with me?? I just feel like I need to take naps all the time now, could be meds? Could be chemo? It is definitely not me feeling like this, I am usually bouncing off the walls or swinging ...
finally a small glimmer of hope!
- By dizzybee · New reply November 21, 2009
- Journal · 7 replies
- went to new neurologist monday -- he specializes in vascular issues. after talking w/me & hubster, and doing all the neuro tests, he went out to review my pictures. he came back with a very puzzled look ...
Day to day Living
- By LizardmyOli · New reply November 20, 2009
- Journal · 1 reply
- Got to roll with it I suppose? I woke up and took the kids to school, came home and sat in bed to watch the today show for a bit and make a list of "to do's" for the day, next thing I knew I woke up at ...
Ulnar nerve decompression
- By LizardmyOli · New reply November 18, 2009
- Journal · 8 replies
- Had the surgery last friday, in and out kind of thing. So far all is well and I can feelmy three fingers on my left hand now!!! If all stays as planned, March should be my last surgery to put my skull ...
42 year old brother with NF1 has a brainstem tumor
- By Mountain · New reply November 17, 2009
- Discussion in Newly diagnosed · 4 replies
- My brother has NF1 and MRI on 9-29-09 showed low grade tumor (probably - no one can know for sure) in brainstem. They say he needs a biopsy. What Neurosurgeon has the expertise to do a brainstem biopsy ...
my NIH experience
- By dizzybee · New reply November 17, 2009
- Journal · 40 replies
- THIS IS MY EXPERIENCE -- I HAVE TRIED TO LEAVE THE DOCTORS' INVOLVED NAMES OUT SO AS NOT TO CAUSE ISSUES -- AGAIN, THIS IS WHAT HAPPENED TO ME. Well, where to start--nurse took my vitals and some allergy ...
Cellphones!
- By LizardmyOli · Posted November 15, 2009
- Discussion in In the news · 0 replies
- I recieved an email from the braintrust group and they said that I should share this widely for those interested. I do not watch this show myself, but it is good that the topic is being addressed. http://www.doctoroz.com/videos/tuesday-d ...
Woke up today!!
- By LizardmyOli · New reply November 15, 2009
- Journal · 5 replies
- Felt like I was in someone elses house for a few minutes! It is crazy to wake up that way, to not know where you will wake up? Crazy siezures. I was hanging my lower body off the side of the bed, bulldog ...
Nice to know I'm missed
- By MMB · New reply November 5, 2009
- Journal · 21 replies
- Saw a post from Stacy that she hadn't heard from me and wanted to make sure I was okay. Just want to say thank you for your concern, I miss all of you too!!!! I do bounce in and out to try and keep a ...
September 22nd 2009
- By Chuckr37 · New reply November 4, 2009
- Journal · 4 replies
- My surgery has been pushed back from 8am to 10:30am, I can handle that. I will head down and have a CAT scan on the way to surgery and before theu start hacking and cutting they will do the biopsy and ...
Out Damn Spot!
- By dizzybee · New reply November 4, 2009
- Journal · 6 replies
- have been having trigeminal neuralgia (fancy word for pain from Hades) since around Sept. 23 -- been to ER twice one shot of dilaudel and next time a shot of morphine. Finally got an MRI -- i basically ...
New website!
- By LizardmyOli · New reply November 4, 2009
- Journal · 4 replies
- I found a website called Mednotes ( I posted the link on my favorites). I was a bit impressed by a quick response they gave me overnight. It lets you enter your meds, conditions, allergies, etc...., then ...
Back to reality
- By LizardmyOli · New reply November 1, 2009
- Journal · 1 reply
- It was about this time last year that my brain tumor symptoms really started hitting me full on with serious symptoms such as things that made me think I was riding the crazy train!! I was losing sleep ...
true life
- By theyrethere24 · New reply October 31, 2009
- Journal · 1 reply
- true life called today. i dont care if i get on it. just the facty people need to know what we go threw. good luck to anyone that got the good threw ...
Silent Screaming
- By LizardmyOli · New reply October 31, 2009
- Journal · 11 replies
- I have been scheduling and getting labwork done for my upcoming Ulnar Nerve decompression surgery and have had to deal with the reality of my insurance that I thought is very good and has good coverage ...
OK, some good news then!
- By LizardmyOli · New reply October 30, 2009
- Journal · 5 replies
- I saw my infectious disease doctor today and he said my counts and stuff he looks at are doing very well and he did not expect them to go up that fast! He said that i do not need to see him anymore unless ...
Continuing headaches
- By LizardmyOli · Posted October 29, 2009
- Discussion in Living with a brain tumor · 0 replies
- I am still having headaches every evening or ones that wake me up at night, I thought these would go away once I had the craniotomy, once the swelling went down and I still have them? I still have an ...
B12 deficit? Anyone familiar with this?
- By LizardmyOli · New reply October 27, 2009
- Discussion in Living with a brain tumor · 2 replies
- I never realized that I had this tested back in January, had a nurologist appt yesterday, switched some meds around and the nurologist gave me a lab slip for B12 testing and Iron levels ...
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