"I will be thinking about you remembering your surgery date. Actually I don't have PTSD I have PTSS which is post traumatic stress syndrome versus disorder. I suffered as well as we all do mentally and physically from that damn Braun tumor. As…"
It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
Misti McCarley's Discussions
Found out surgery will be for different diagnosis than originally planned !
3 Replies
Went in for pre-op today and when I opened up the paperwork my hometown neurosurgeon who I adore had down that he was performing a bilateral craniotomy for resection of falcine meningioma. I went to…Continue
Tags: falcine, falx, Misdiagnosis
Started this discussion. Last reply by jane smith Apr 6.
Misti McCarley's Page
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Misti McCarley replied to jane smith's discussion Admitted to hospital"I appreciate you asking I was in ICU for one day and a regular bed for two. Then I stayed with some friends from church for 5 days who cooked my meals I pretty much was just laying around having nightmares and taking pain pills and being grateful I…"
Misti McCarley replied to Robin Tashjian's discussion How to Put it Out of Your Mind"I'm glad you were able to get it it was taken off the shelf by the company because people had been taking it since the 60s with no bad effects comparable to recent drugs where FDA requires 10 year studies. The company said we are not putting…"
Misti McCarley commented on Beth Rosenthal's group Depression and anxiety Group"Found this website about Benign Meningiomas and Post Traumatic Stress if you want to read about…"
Misti McCarley commented on Beth Rosenthal's group Depression and anxiety Group"Suffering from Post Traumatic Stress from what having tumor did to my life, my children, my family , my home, ruined friendships, lost employment. When I came home from surgery after staying with friends I luckily had someone with me or I probably…"
Misti McCarley replied to Linda Wilson's discussion Stigma's of Depression and Anxiety in the group Depression and anxiety Group"I have been diagnosed with bipolar since age 13 and am now age 37. Ii got to the point where none of my meds that my psychiatrist would try helped for long and he told me that there was nothing else pharmacologically she could do for me…"
Misti McCarley joined Beth Rosenthal's group
Depression and anxiety Group
Suffering from depression, anxiety? Let's get it out. Let's open up and support eachother.
Misti McCarley replied to jane smith's discussion Admitted to hospital"I would demand the surgery due to your diminished quality of life and pain. Since my bifrontal craniotomy on the 2nd of this month I have surgery pain and plates and screws in my head but I will take that with cake and pie over the suffering with…"
Misti McCarley replied to Robin Tashjian's discussion How to Put it Out of Your Mind"Oh well it was not migraine pains at all you see nothing worked the "best" told me the tumor was on top of my brain along the falx. I went to my headache dr several times before I knew of tumor he finally sent me for MRI and and then when…"
Misti McCarley replied to Robin Tashjian's discussion How to Put it Out of Your Mind"I was diagnosed with a benign meningioma and over a short period of time that benign meningioma ruined my life as I had known it and now that unjust recently had a craniotomy to have it removed I realize that it had obviously been there for a while…"
jane smith replied to Misti McCarley's discussion Found out surgery will be for different diagnosis than originally planned !"Hi Misti,
Bet your glad that over with surgery now recovery time. Have they got you on any pain relief? Recovery time is different
for each of us and that would of bein great for you to get your daughter next week but you will need some rest…"
Misti McCarley replied to Julie's discussion My Daughter"Hi I hate to be the one to say this but the child is really in a dangerous situation with her not having her mental capabilities and bring angry. I had that problem. My child is 7 I had to let someone care for her it has been a month now. I just had…"
Misti McCarley replied to Misti McCarley's discussion Found out surgery will be for different diagnosis than originally planned !"Out if surgery big huge cut across my head staples and some metal plates. Some pain not as bad as yesterday, feel weird without a tumor in my head. I was told its gonna take a while to get back to functioning I thought I would have surgery and get…"
jane smith replied to Misti McCarley's discussion Found out surgery will be for different diagnosis than originally planned !"Hi Misti,
Im really sorry about all the stress and pain you are going through and just wish that the medical system would deal with
the things they have to do in a better fashion its so frustrating!!!! Of course it makes your headaches worse…"
Misti McCarley posted a discussionFound out surgery will be for different diagnosis than originally planned !
Went in for pre-op today and when I opened up the paperwork my hometown neurosurgeon who I adore had down that he was performing a bilateral craniotomy for resection of falcine meningioma. I went to a big time research hospital initially for my brain tumor because I was already there for my spinal cord tumor. I was told at home my spinal cord had not retethered and that my tumor was too large to remove as it would cause irreparable damage to my spinal cord. I would have to live this way. The…See More
Misti McCarley replied to jane smith's discussion Headaches pressure"I was wondering if the codeine in your meds is making you so nauseous. Have u mentioned this maybe you could get some phenerghen to help with that as well??"
Profile Information
- Who are you?
- Survivor
- What type of tumor do/did you have?
- Falx Meningioma/Spinal Cord Lipoma in lumbar spine and tethered--retethered cord
- What kind of info do you want from this site?
- Support/help for dealing with intense chronic pain and lack of healthcare
- What city & state or city & country are you located in?
- NC
- How did you find itsjustbenign.org? Please be as specific as possible.
- Researching my condition
Comment Wall (3 comments)
- At 2:15pm on March 21, 2013, Karolin said…
Hi Misti, I just tried calling you back but not sure if I dialed the right number. Meaning every time I call you I get an immediate busy signal. Can you call me again at 770-888-4340. I am located in GA EST. Would love to catch-up.
- At 2:05pm on February 10, 2013,
Ann Manzi said… Misti, Hi and sorry to say welcome to a site you probably never knew existed. I too have a meningeoma with a different location. I hope you are able to find the info to get health insurance. As we all know, the price of the surgery, specialists, meds, and all those tests are beyond our means. A shame that it is hard to get help, but keep trying and and seek help from your dr. and hospital. You definitely need an advocate to fight for what you deserve. Do take care and I wish you luck. ann manzi
- At 2:08pm on February 8, 2013,
Beth Rosenthal said… Hello Misti 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! 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.
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