At some point this site must have had useful advise and forums where you can ask questions and share info but this site seems dead. There appear to be maybe 6-7 active members. But, I think 3 or 4 of the members are Beth's dupe accounts. So there is not much discussion happening. I joined back in 2014 but I got frustrated because even though I was a paid member I was not able to use the forums. I tried logging in recently but it appears my account has been deleted. The concept of this site is noble but there is little or no info here.
When I was diagnosed with a meningioma last year, I scoured the internet for information and resources. I came upon itsjustbenign.org and quickly realized it was a unique and invaluable resource. Since it is not common to already know a friend who also has a benign tumor, the chances of finding someone in my shoes without this website would have been quite slim. Here, I can finally connect with others who are in the same situation. A great place to lend and receive support, as well as share stories about treatment plans/options.
I would give it a 5 start rating easily, because people going through a benign brain tumor experience can find much needed help. Great for talking with one another and asking questions. I gave it a 1 star, because there are some serious problems with accountability of funds & Beth, the founder & moderator, has some serious maturity issues, is often complaining to members, and just downright bullyish. She might put a facade on tv or for interviews, but when push comes to shove, she doesn't take responsibility & ends up blaming other people, especially members. If you do donate to this organization, please find out exactly where your funds are going.
In 2006, when my 2 daughters were in the first and third grades, I suffered a seizure that led to the discovery of a "benign" meningioma that was so large it required immediate removal. Long story short, I woke up from surgery paralyzed from the left hip down, have no genital sensation, and am incontinent. To sweeten the pot, my husband decided it was all too much for him and split 2 weeks after I got home from the hospital. My girls, and I are scarred yet amazingly strong at the same time. They are teenagers now, and despite my physical deficits I have won full custody(after he put me thru a partisan custody evaluation). Poor as we are financially, my daughters and I have never been richer in spirit , love, and compassionate connection.
I was diagnosed with an inoperable benign brain tumor July 2010 shortly after the birth of my second child was born. It was a devastating time for me and my family. I spent 3 weeks in the hospital and every day after that doing radiation for a few months. I found this group and decided to join. I needed to research what I have and wanted to see what it was all about. I have gotten SO much more out of it. I have made numerous friends and it is really nice to have the support and prayers of people who are going through the same thing. This is the best support group I have found. I urge people who have or know someone who as a benign brain tumor to join!!
this is a site that concentrates on patients who have "benign" tumors by histology, but for one or more reasons, have a "non-benign" treatment course. i have not seen any other organization concentrating on this subset of people, and as a result i believe this type of support organization has great value.
When it comes to brain tumors, "benign" does not mean that it is not harmful. A benign brain tumor can be just as harmful and devastating as a malignant tumor, and the symptoms and side effects can alter a person's life forever. And despite popular belief, benign brain tumors can reoccur after removal and thus need to be monitored. One of the focuses of It's Just Benign is to educate the public about benign brain tumors and raise the collective conciousness. The support groups are excellent because they provide a means for those diagnosed with benign brain tumors to connect with other survivors to share resources and experiences. I am very glad that I discovered It's Just Benign because there seems to be no other support groups that are aimed specifically at survivors of benign brain tumors. As a BBT survivor myself, this organization is near and dear to my heart. While still relatively new, I can definitely see the impact that IJB has had on people's lives and perspectives, and I hope it will continue to grow larger and even stronger in the days to come.
Its just benign fills a VERY important and always neglected aspect of brain tumor survivorship - that being the survivor who ewhad a brain tumor that was technically not cancerous....As such we survivors are actually looked upon as "less needy". Although our physical disabilities may be quite severe, we are denied benefits afforded to others just because of how our tumors may appear under a microscope. Descrimination, to be sure! Its just benign acknowledges this unfairness, and is working diligently to make the general public aware, while providing a "haven" to all of us affected thusly. If it weren't for its just benign, there would be NOTHING to represent us. How important is this organization? Just about as important as air!
In January of 2010 I started losing peripheral vision and it was misdiagnosed as a posterior vitreous detachment and I was sent home being told that I would get used to it and it would disappear, that it was quite common in people my age. I was 48 at the time. Menopause, which happened four years prior to the eye problems, was at the age of 44 (later to find out it was not actually menopause, but amenorrhea), with all the symptoms, hot flashes, mood swings, etc. Then I also started losing weight, lots of it and finally since I still couldn't see properly and was in fact losing sight day after day and in both eyes, I went to see another ophtolmologist who realized that something was going on in the brain and she sent me in for an MRI, which is when I was diagnosed with a craniopharyngioma, towards the end of April 2010. On June 7th of 2010 I had it removed in a five hour operation by way of a right frontopterional craniotomy, which restored my eyesight but left me with a right-eye ptosis that over a year later is still there, getting better, but with still part of the eyelid drooping. The tumor recurred by Christmas of 2010 and I had the second one removed by trassphenoidal surgery on January 17th of 2011, followed by 28 sessions of fractionated stereotactic radiotherapy with the Novalis machine, this from March 15th 2011 to May 4th 2011. Since the first operation I have been taking 20 mg of hydrocortisol and 75 mg of levothyroxine. I have gained about 15 pounds this year, although I do seem to be finally getting a handle on the constant hunger and I am slowly starting to drop the extra weight. I also feel confused quite often, head fog would be the expression, in particular when it is close to the time when I have to take the hydrocortisol. Let's not mention the general lack of motivation and the apathy I feel towards almost everything. And if I don't sleep at least nine hours, I am just simply unable to function. That's basically it in a nutshell. Any input would be gratefully appreciated.