"Well, I have a new job offer, but I can't take it. It's frustrating because it's a Job Developer position. The reason I can't take it is I don't think I'm ready to work full-time again. If I ever will be ready, I…"
It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
Susan Konick's Page
Latest Activity
Susan Konick left a comment for Herb Freeland"Sorry I hit send before I finished my note to you. Even though I live in Florida I am using doctors at university of Pittsburgh. They are wonderful. Please let me know how you are progressing.
Regards,
Susan"
Susan Konick left a comment for Herb Freeland"Hi Herb,
Sorry for the delay in responding. How are you doing? Have you been able to work ? I am still in the wait and watch stage of my schwannoma and my next MRI is in July . No really having too many symptoms but some lip numbing and a general…"
Herb Freeland left a comment for Susan Konick"Hi Susan, thanks for being here. I, too, have a Trigeminal Schwannoma. Before it was discovered on 5/31/12, I had sore shaky hands, some slight balance problems, and hypersensitivity to bright light and loud noise, with a pretty constant ringing in…"
Shelby Melton RNS left a comment for Susan Konick"Hi Susan. I apologize for the delay in responding. Have begun a new job and it is stressful to say the least. I am also on the night shift which adds to the stress level. I am glad to have found somewhere that I can have someone on my side that I…"
Helen Son left a comment for Susan Konick"Hi Susan, thanks for sharing! I'd love to correspond with you about your schwannoma. I've met with several doctors who pointed me toward neurosurgeons who specialized in skull base surgery and radiation surgery. One neurosurgeon told me to…"
Susan Konick left a comment for rob Welsch"Hi Rob,
I too have a trigeminal schwannoma. Not too many of us! I was diagnosed 6 months ago and am in a wait and watch status. How about you? I've done tons of research. Please keep in touch with me. Are you having any symptoms? We need a…"
Susan Konick left a comment for Helen Son"Helen,
So glad you joined. I have the same diagnosis as you. There aren't too many of us. I have done tons of research and have seen many doctors. Would be happy to share info with you and hear about your experiences.
Please respond.
Susan"
Susan Konick left a comment for Crystal Broadway"Hi crystal,
Do you have a trigeminal schwannoma? I was diagnosed 6 months ago and have done tons of research. Please write if you have questions.
Susan"
Susan Konick left a comment for Monica Nickel"Monica,
I too have a left trigeminal schwannoma. We are a rare group and so hard to find someone in my position. Please write to me with details. I live in Florida and was diagnosed 6 months ago. I have a lot of info and have done loads of research.…"
Susan Konick left a comment for Shelby Melton RNS"Hi Shelby,
I too live in Florida and was diagnosed 6 months ago with a trigeminal schwannoma. Have been to many doctors and finally found one I love in Pittsburgh. After being told I had to have immediate craniotomy by dr at Cleveland clinic (in…"
Susan Konick replied to Diana Vu's discussion TRIGEMINAL SCHWANNOMA: anyone out there with the same?"Matthew,
I too was diagnosed with trigeminal schwannoma about 6 months ago, also, quiete by accident. I live in south Florida and was sent to doctor after doctor and found that no one really was familiar with this tumor. I did my own research and…"
Susan Konick replied to Diana Vu's discussion TRIGEMINAL SCHWANNOMA: anyone out there with the same?"
"
Kat Love left a comment for Susan Konick"Hi Susan. I live in Key West. I'm living with my tumor until the government gets off their butt and helps me so I can have it removed I have a large active frontal meninganoma. At this point, I don't know if it is cancerous or not…"
Profile Information
- Who are you?
- Survivor
- What type of tumor do/did you have?
- I have a 5 cm trigeminal schwannoma
- What kind of info do you want from this site?
- support from people who understand what I am dealing with
- What city & state or city & country are you located in?
- Florida
- How did you find itsjustbenign.org? Please be as specific as possible.
- yahoo search
Comment Wall (10 comments)
- At 6:34pm on March 6, 2013, Herb Freeland said…
Well, I have a new job offer, but I can't take it. It's frustrating because it's a Job Developer position. The reason I can't take it is I don't think I'm ready to work full-time again. If I ever will be ready, I don't know. It has been recommended for me to have neuro-psychological testing done to determine my work readiness clinically. The best news is that they are willing to wait to hire me until I am ready. Even though I am almost eight months post-op, I'm still way too light sensitive and am way too tired all the time. SSDI is set to make a decision on my second appeal as soon as the neuro-psych exam is completed on March 19th. Hope all is well with you!
Herb Freeland
- At 3:38pm on January 19, 2013, Herb Freeland said…
- Hi Susan, thanks for being here. I, too, have a Trigeminal Schwannoma. Before it was discovered on 5/31/12, I had sore shaky hands, some slight balance problems, and hypersensitivity to bright light and loud noise, with a pretty constant ringing in my ears. I lived with these symptoms for 10 years or so. The doctor at the MRI center showed me the picture of the tumor lodged between my brainstem and my brain. He said it could cause a fatal stroke or heart attack if I didn't have surgery immediately. Fortunately, my wife works for a local hospital which had the type of equipment needed and a skiiled neurosurgeon to operate a few days later. He was able to remove 85% of the tumor, the other 15% to be treated with 1-3 radiation treatments when the doctor thinks I've healed sufficiently. I've been offered a job to start in the next few weeks, and will be meeting with the doctor to tell me if he thinks I can tolerate full time work again. Most of the soreness is gone from my hands, so I can write again. But, the right side of my face is still numb, and my right eye has a burning sensation most of the time, causing me to have to wear sunglasses all the time. I am a social worker and don't know whether I have the patience for the job anymore. Any kind of stress seems to make my symptoms worse, and starting a new job is one of the most stressful events in life. Still, I feel like I'm going to have to try working as I will be turning 60 in 2 weeks, and this may be my last chance at ever working full time again. My new employer does not know I have this, which brings on stress all by itself. I found that by disclosing my disability that I was disqualifying myself and not getting job offers. I had applied for SSDI benefits, but my going back to work will almost certainly putmy application on hold if it doesn't disqualify me. After reading about the difficulty others have even getting the right medical care, I consider myself fortunate. Let's stay in touch.
Herb Freeland
- At 7:38am on December 12, 2012, Shelby Melton RNS said…
- Hi Susan. I apologize for the delay in responding. Have begun a new job and it is stressful to say the least. I am also on the night shift which adds to the stress level. I am glad to have found somewhere that I can have someone on my side that I feel can relate to me in a way. I have already undergone my surgery in 2010 but I am left quite a different person. My memory is affected as well as my emotions. I have found that I am pretty hostile feeling a lot. The tumor was in the right temporal lobe so it makes sense scientifically but is hard to deal with personally. I used to be a social person and I am not anymore. I stay depressed and moody even though I take an antidepressant. I am an RN who feels like my abilities are not what they once were. Just a small bit of the roller coaster I feel like I am on. Very nice to hear from you.
- At 10:46pm on December 3, 2012, Helen Son said…
Hi Susan, thanks for sharing! I'd love to correspond with you about your schwannoma. I've met with several doctors who pointed me toward neurosurgeons who specialized in skull base surgery and radiation surgery. One neurosurgeon told me to get it removed, and the other suggested radiation therapy, so I'm stuck. I see pros and cons to both treatments, so I just need to decide what to do. I don't want to wait around and see what happens to my tumor, though. What symptoms do you have, and what did doctors say about your prognosis?
- At 3:42pm on August 6, 2012, Kat Love said…
Hi Susan. I live in Key West. I'm living with my tumor until the government gets off their butt and helps me so I can have it removed I have a large active frontal meninganoma. At this point, I don't know if it is cancerous or not but my mental and physical has slowly been going down hill.
Sure hope you're doing better than me and have adequate health care.
- At 12:45pm on July 5, 2012,
Beth Rosenthal said… Hello Susan and Welcome! Thank you for paying the annual dues.
I started IJB 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. There was no support for me then, no internet, little family.
Besides connecting with survivors, we can exchange medical information here, get support from survivors like us and connect both on and offline!
There are Q&A’s with a respected neurosurgeon, nutritionist and pain specialist under the Resources tab. Please feel free to submit a question to the Doctors and they will answer!
Also there are many different groups such as religious discussions, migraines, seizures, depression and anxiety. Please feel free to start one of your own as well!
Please also check out our fanpage on FaceBook athttps://www.facebook.com/ItsJustBenign & follow us on twitter @itsjustbenign.
Feel free to contact me with any questions or concerns. Thanks again for joining and we look forward to hearing all about you!
Thank you,
Beth
- At 2:33pm on July 4, 2012,
Lesley Bates said… Hello Susan: You are my first friend on it's just benign....it will be good to have a friend who knows what it is like to survive a benign brain tumour.....
- At 11:20am on July 4, 2012, Judy True said…
I found it on facebook but would rather communicate by e-mail. Not good at facebook.
Judy
- At 11:19am on July 4, 2012, Judy True said…
I have an Accoustic Neuroma, treated with cyberknife at Stanford. Many side effects.
- At 11:17am on July 4, 2012, Judy True said…
Dear Susan,
Happy to hear from you. Will be happy to share with you.
Judy
© 2013 Created by Beth Rosenthal.
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