"Hi there, you sent me a message and I just added you as a friend. I had a craniopharyngioma as well.
Let's chat whenever you like. I have loads of experience with this matter.
Talk to you soon.
Lots of hugs!!
"
It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
Alicia Marin Marin's Discussions
Medical alert bracelet or necklace
4 Replies
I live in Spain and I am finding it next to impossible to buy a medical alert bracelet. I have had a necklace made with all the information, but it doesn't really draw attention, reason why I would…Continue
Tags: bracelet, alert, medical
Started this discussion. Last reply by Alicia Marin Marin Jun 24, 2011.
Craniopharyngioma, one craniotomy, one transsphenoidal, 28 fractionated stereotactic radiotherapy sessions
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,…Continue
Tags: radiotherapy, hypopituitarism, craniotomy, craniopharyngioma
Started Jun 16, 2011
Dealing with the aftermath of craniopharyngioma
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,…Continue
Tags: apathy, fatigue, hypopiuitarism, craniotomy, craniopharyngioma
Started Jun 16, 2011
Alicia Marin Marin's Page
Latest Activity
Amanda left a comment for Alicia Marin Marin"Hi Alicia! So nice to get to "chat" with you! My three-day weekend was wonderful! I am exhausted, but in a great way! Hope you are having a peaceful day!"
Alicia Marin Marin replied to Alicia Marin Marin's discussion Medical alert bracelet or necklace"Hi Amanda. Ah yes, I understand what you mean, a three day weekend with no medical stuff. This is the first month in over a year that I don't have any doctor appointments, MRIs, analysis or anything at all. Next month I start again with all the…"
Amanda replied to Alicia Marin Marin's discussion Medical alert bracelet or necklace"Im glad you liked the sites! I am doing alright! I have tomorrow off from work (my first three day weekend in a very long time thats not for a medical thing-I live across the state from my neuro-onc team!) I read some if your story-you are an…"
Alicia Marin Marin replied to Alicia Marin Marin's discussion Medical alert bracelet or necklace"Hi Amanda! Thank you so much for the information. Both sites look good, so I will browse and choose because it really is important. Again, thank you very much. Hope to keep in touch. How are you doing? Alicia.
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Amanda replied to Alicia Marin Marin's discussion Medical alert bracelet or necklace"Hi Alicia! I just checked online and found these two sites that look promising! Here are the addresses: www.MedIDs.com and www.laurenshope.com/ (The second one looked like it had great options!) Hope this helps! Blessings, Amanda"
Alicia Marin Marin left a comment for jodi fainer"Hi Jodi!
Indeed, I really understand what you mean about hearing how lucky we are just to be alive, after 2 brain tumor operations. That is exactly my situation, 2 operations and radiotherapy to boot and I still have to hear how lucky I am. Well…"
Alicia Marin Marin left a comment for Beth Rosenthal"Thank you Beth,
I am very happy to have found this group and now that I seem to be getting my bearings back I am sure your site will be of great help to me. I live in Spain and since my condition is rather unusual there aren't too many places…"
Beth Rosenthal left a comment for Alicia Marin Marin"Hello Alicia and thanks for joining. I started this site 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. Besides connecting…"
Beth Rosenthal left a comment for Alicia Marin Marin"Hello Susana and thanks for joining. I started this site 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. Besides connecting…"
Profile Information
- Who are you?
- Survivor
- What type of tumor do/did you have?
- Craniopharyngioma
- What kind of info do you want from this site?
- 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.
- What city & state or city & country are you located in?
- Spain
- How did you find itsjustbenign.org? Please be as specific as possible.
- Internet
Comment Wall (2 comments)
- At 9:16pm on June 26, 2011, Amanda said…
- Hi Alicia! So nice to get to "chat" with you! My three-day weekend was wonderful! I am exhausted, but in a great way! Hope you are having a peaceful day!
- At 9:29pm on June 16, 2011, Beth Rosenthal said…
- Hello Alicia and thanks for joining. I started this site 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. Besides connecting with survivors, we can exchange medical info, get support, etc. There is a Q & A with a neurosurgeon and a nutritionist under the Resources tab. Also there are many different groups such as religious discussions, migraines, seizures, depression and anxiety, etc. It's Just Benign now has its own store. All proceeds help maintain this website. So if you shop online, please shop through our "store" tab link. There are over 20 stores. Thanks again for joining. Feel free to contact me with any questions or concerns.
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