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Alicia M.

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1 reviews

Review for Its Just Benign Inc, Edison, NJ, USA

Rating: 4 stars  

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.

I've personally experienced the results of this organization in...

This organization is the only one that really helps and supports survivors of brain tumors, as they are always available, always coming up with new ideas to help and further the cause, always there with good advice on all the problems we have. I am personally very thankful for this site and for its fabulous work.

If I had to make changes to this organization, I would...

I consider that the site is just perfect as it is, yet good ideas are always welcome. How could it be otherwise!

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

Internet

What, if any, change in your life has this group encouraged?

It has helped overcome the loneliness of having an unusual illness and being able to come into contact with people who are undergoing similar situations.

When was your last experience with this nonprofit?

2011

Role:  Client Served & For now I have only chatted with other survivors. I don't know if I have helped, but they haver certainly helped me.