"
"
It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
ann's Discussions
Painful Headaches since 1st MRI with Dye, post surgery on 3/13/13
2 Replies
I had my 2 CM. N. M. Meningioma removed surgically 10 months ago, (right frontal lobe) in May 2012 @ Cornell in NYC. I had a 2CM. Grade I, Non M. removed, no serious problems post surgery. I was…Continue
Started this discussion. Last reply by ann Apr 3.
Wean off of Dilantin, 100 mgs. post surgery 10 months ago
4 Replies
I am going for my 2nd MRI test, (2nd half), with contrast tomorrow. First part I had completed today (non contrast). I had my (WHO) Grade 1 , 2CM. NM Meningioma tumor removed last May, 2012, @…Continue
Started this discussion. Last reply by ann Mar 29.
Facial Pain after right jaw muscle being cut during surgery last May, 2012
7 Replies
I had a 2 CM. N.M. Meningioma removed @ Cornell in NYC last May, 2012. I continue to have right facial pain after my right facial muscle was cut during surgery. I recently asked the Surgeon &…Continue
Started this discussion. Last reply by Reni Mar 2.
ann's Page
Latest Activity
ann replied to ann's discussion Painful Headaches since 1st MRI with Dye, post surgery on 3/13/13"Any help/advice/input from Members re: "Headaches" since Brain MRI completed on 3/13/13? My primary Dr. said he has never heard of this, but I am still suffering headaches since the MRI? I do have a dime size Titanium…"
ann replied to ann's discussion Wean off of Dilantin, 100 mgs. post surgery 10 months ago"Hi Paul,
I am in the midst of weaning off of Dilantin, doing well so far under the care of my Primary Dr., it is VOO DOO juice & it made me extremely nervous. I had another EEG all normal again 2 weeks ago. I went…"
ann posted a discussionPainful Headaches since 1st MRI with Dye, post surgery on 3/13/13
I had my 2 CM. N. M. Meningioma removed surgically 10 months ago, (right frontal lobe) in May 2012 @ Cornell in NYC. I had a 2CM. Grade I, Non M. removed, no serious problems post surgery. I was doing ok after the surgery & had no serious side/after effects, no headaches, some head scar pain & jaw pain with my right jaw muscle being cut. I spent 5 days in the Hosp.& head scar healed ok. & I was getting on & moving forward with my life, w/o complaining till now.I had my…See More
Paul Gerrard replied to ann's discussion Wean off of Dilantin, 100 mgs. post surgery 10 months ago"Ann,
I was on Dilantin for about 6 weeks post surgery back up with two MRI's then a couple of CAT scans. Since part of my tumor was left behind because it was too close to the memory portion of my brain, the scans were necessary to make sure it…"
Pamela Bishoff replied to ann's discussion Wean off of Dilantin, 100 mgs. post surgery 10 months ago"I was also on Dilantin post surgery but only for a few months. The neruo then switched me to Topomax to prevent both seizures and migraines. I now have a new neuro who specializes in migraines and switched off of Topomax because I…"
ann posted a discussionWean off of Dilantin, 100 mgs. post surgery 10 months ago
I am going for my 2nd MRI test, (2nd half), with contrast tomorrow. First part I had completed today (non contrast). I had my (WHO) Grade 1 , 2CM. NM Meningioma tumor removed last May, 2012, @ Cornell in NYC, right temporal lobe, with my 1st MRI being completed tomorrow, post surgery. How often is this test required, post surgery. I am trying to wean off of Dilantin 100mgs, 1 pill a day taken for the past 10 months, no seizures, except for a weird turpentine smell at night "pre surgery",…See More
Reni replied to ann's discussion Facial Pain after right jaw muscle being cut during surgery last May, 2012"I had surgery on 1/29/13 to remove an egg size meningioma, the surgeon had to cut my jaw muscle. My jaw pain was awful and I too couldn't open my mouth very wide. I started physical therapy and she has helped me tremendously by doing…"
ann replied to ann's discussion Facial Pain after right jaw muscle being cut during surgery last May, 2012"
"
ann replied to ann's discussion Facial Pain after right jaw muscle being cut during surgery last May, 2012"Hi Jane,
I still have head pain 9 months later post surgery. From my forehead down to my right jaw 24/7, gets much worse when I eat & try to open my mouth & chew food. I'm irritable & very cranky with the pain since…"
jane smith replied to ann's discussion Facial Pain after right jaw muscle being cut during surgery last May, 2012"
Hi,
I also had my jaw bone cut and found that more painful than my head the pain
lasted a long time with my jaw i was only on steriods but this controlled some of the face pain."
Naomi Ishisaka replied to ann's discussion Facial Pain after right jaw muscle being cut during surgery last May, 2012"Hi - I also had my right jaw muscle cut during surgery in 2009 and while it doesn't hurt, per se, I still cannot open my jaw very much (about 1.25 inches) and there is a strange "crunchy" sound where my jaw and my skull meet. One of…"
ann replied to ann's discussion Facial Pain after right jaw muscle being cut during surgery last May, 2012"Thank you Beth. I do appreciate your reply & believe right now I need desperately to head asap to see a pain specalist. I live in Westchester County so maybe if your Pain Specailist can refer me to one close by, as my…"
Beth Rosenthal replied to ann's discussion Facial Pain after right jaw muscle being cut during surgery last May, 2012"I'm so sorry, Ann. I'm sure that's so difficult to live with. I have nerve pain from my radiation treatment. Trigeminal neuralgia stole 12 yrs. of my life being doped up an in agony all day, every day. I finally have an amazing pain…"
ann posted a discussionFacial Pain after right jaw muscle being cut during surgery last May, 2012
I had a 2 CM. N.M. Meningioma removed @ Cornell in NYC last May, 2012. I continue to have right facial pain after my right facial muscle was cut during surgery. I recently asked the Surgeon & P.A. this past week about the pain & he said "Sometimes the pain never leaves certain Patients? I would like to ask if anyone else on this board suffers from pain as I do after having their right jaw muscle cut & if they have any pain relief suggestions? The pain is not leaving & I have…See More
Profile Information
- Who are you?
- Survivor
- What type of tumor do/did you have?
- NM Meningioma
- What kind of info do you want from this site?
- Education
- What city & state or city & country are you located in?
- NYC NY USA
- How did you find itsjustbenign.org? Please be as specific as possible.
- surfing the web
Comment Wall (2 comments)
- At 7:58pm on October 28, 2012,
Ann Manzi said… Hi Ann. Sorry that have a meningeoma, me too. I never saw nm with the diagnosis. You will have to educate me. I know there are two types, the one that is removed entirely and what I have- like an onion skin that grows over the brain and into the brain. I was diagnosed last August after having a severe seizure. I had a craniotomy and then thirty days of radiation (fractionated sterotactic surgery). I have returned to work after six months but completely exhausted. I still have seizures on my right side and now on my left side and the face.... no answers from my specialists. Just waiting for November's mri and seeing my ns. I just had my anti seizure medicine changed, which takes 10 weeks to wean off and gradually introduce the new medicine. I have chatted enough, how about you. A great site of caring, compasssionate people to help you with your journey to acheive good health. Do take care. ann manzi
- At 11:03pm on October 27, 2012, Beth Rosenthal said…
Hello Ann and Welcome to It's Just Benign!
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 consider making an annual donation of just $10 for the year to help us with the website, social media and other administrative expenses once you see the value from the services provided on IJB. The fee is necessary for the website to continue and new members get a month free. Then you'll have access to only certain tabs. I hope IJB is a valuable resource for you.
Also, 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
© 2013 Created by Beth Rosenthal.
Powered by
