It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
Mary Bedford's Groups
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Seizures
21 members
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Depression and anxiety G…
40 members
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Cognitive Issues
20 members
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Religious Discussions
23 members
Mary Bedford's Page
Latest Activity
Mary Bedford posted a status"Dr. Lunsford says he can do the gamma knife on my cavernous hemangioma, now to decide what to do."
Mary Bedford posted a status"going to UPMC on Thursday, to see Dr. Lunsford, to discuss feasibility of Gamma knife on my cavernoma, mine is in bad location."
"Hi Mary, Thanks so much for reaching out to me. I am not good at this, I know people are use to being on their computers and such, but I prefer real life. or should I say I did. My surgery was April 12 and I am still dealing with…"
Linda Kovacevich commented on Mary Bedford's status"So sorry Mary, sorry to hear about your seizure. Hope that you manage to get more rest and that your job is not to stressful for you. Will be thinking of you..good luck..."
Mary Bedford posted a status"The new cerebrovascular neuro. is great,He actually answered my questions, explained things, ect. didn't think they made those anymore...."
Mary Bedford replied to Lisa Vecchitto's discussion Tumor Removal Symptoms"No, that is a paranoid fear of being in public places, you do not have that! I was told prior to my surgery that just like a migraine sufferer has these sensitivities, I would also, prob. lasting quite some time. and is so true. the light…"
Mary Bedford replied to Lisa Vecchitto's discussion Tumor Removal Symptoms"Lisa, sorry I didn't see this when replied above. If you do not feel ready to go back to work, and they won't listen to you, then take some personal time and /or get new paperwork for leave, either medical or personal, whichever you…"
Mary Bedford replied to Lisa Vecchitto's discussion Tumor Removal Symptoms"I had that . plus in parietal area, where mine actually was more pronounced. they told me before surgery would happen, and was part of healing process. I'm assuming from the incision of scalp, fascia, muscle and also bone flap. My…"
John commented on Mary Bedford's status"I hope today and the next few days will be better for you Mary."
Mary Bedford posted a status"Seizure(complex partial) at work yesterday, and aura today. Probably doing too much, too soon. sigh....."
Mary Bedford replied to Carla Soileau's discussion Intensified headaches during sleep"I too have headaches, but not a severe or often as you describe. My side is rt., the temporal lobe receiving mass effect from my tumor in rt. cavernous sinus, middle fossa, sella turcica area. Was it a NS or neurologist that you saw? I would maybe…"
Ann Manzi left a comment for Mary Bedford"Mary, Thanks for the kind words. I took the blog off the site as I thought it might not be worthy......funny, I always try to be there for others and then I have a day when I feel so alone with this. Again, your kindness is appreciated. ann "
Mary Bedford replied to Beth Rosenthal's discussion Don't know what to do with my my guilt & heartbreak"Will keep your mom and you in my thoughts and prayers, Beth. You are a wonderful daughter, and an inspiration to all of us here. Please keep us posted.
Mary"
Mary Bedford commented on Jennifer Kincaid's blog post Surgery was a success!"Jennifer,
How is Jackson doing? And how are you? please update us when you can. Best wishes and prayers for a continued, good recovery.
Mary"
Mary Bedford left a comment for Karen"Welcome, Karen. This is a great group, who will answer questions and provide support. I think you will like it here. Have you had surgery? Please let us know how we may be of service."
Profile Information
- Who are you?
- Survivor
- What type of tumor do/did you have?
- Hemangioma in rt. Cavernous sinus; craniotomy with partial resection in Oct. 2011.
- What kind of info do you want from this site?
- medical insight and emotional support. info. on healing process.
also info. on gamma knife and RT.
- What city & state or city & country are you located in?
- Ohio
- How did you find itsjustbenign.org? Please be as specific as possible.
- just did a google search
Mary Bedford's Blog
Frustrated and trying to not give up.
First of all, I am thankful for the existence of this group. Reading others similar experiences has been so healing and encouraging, just to know others are going thru something similar and on their own journey of living with tumor, effects of craniotomy, finding their new normal and adjusting to all this implies with no frame of reference for their life getting turned upside down.
I had another very frustrating visit with my NS on monday and am trying to decide if the best thing is…
ContinuePosted on May 15, 2012 at 1:53pm — 3 Comments
Comment Wall (4 comments)
- At 9:13am on September 21, 2012,
Karen said…
Hi Mary, Thanks so much for reaching out to me. I am not good at this, I know people are use to being on their computers and such, but I prefer real life. or should I say I did. My surgery was April 12 and I am still dealing with everything from the now blindness in my right eye, to lock jaw, to chronic migraines. I am going to try to navigate this website so I can truly have someone to connect with that knows how I feel as well as what I feel.
- At 9:44am on August 15, 2012, Ann Manzi said…
Mary, Thanks for the kind words. I took the blog off the site as I thought it might not be worthy......funny, I always try to be there for others and then I have a day when I feel so alone with this. Again, your kindness is appreciated. ann
- At 2:19pm on July 11, 2012, Maryann Parker said…
Hi Mary
Thank you for the friend request. I am so sorry about your remaining cavernoma, I"m sure that's upsetting knowing it's there. So you have good days and bad days too....some days I am so on I think Oh my health is great and other days I question why I even woke up, I wish I hadn't opened my mouth because of the verbal mistakes I make let alone the clumsiness and balance problems. I just joined this group last week and I'm not quite sure how it works, if this is a posted message or private. I am reading and trying to learn it. I am glad I found it because I feel no one understands my situation and they always say Thank God it's Just Benign!!! One more thing, I read you mentioned you may go to UPMC in Pittsburgh, that is where I go and live. I would love to tell you about my experience some time.
- At 12:33am on February 18, 2012,
Beth Rosenthal said… Hello Mary and welcome. I started this site because I had such difficulty finding benign brain tumor survivors, like myself. I'm a long term survivor (but have many side-effects): diagnosed in 1985 at age 11. Besides connecting with survivors, we can exchange medical info, get support, etc. There is a Q & A with a neurosurgeon and a nutritionist under the Resources tab. Also there are many different groups such as religious discussions, migraines, seizures, depression and anxiety, etc. Thanks again for joining. Feel free to contact me with any questions or concern.
© 2013 Created by Beth Rosenthal.
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