I was diagnosed with this 6 years ago. I was flown to Florida to receive proton beam radiotherapy. My personal symptoms that i developed were hypothyroidism (underactive thyroid), weight gain and feeling overly hungry, hyper insomnia (excessive sleeping during the day), sleeping with my eyes open (yes, creepy I know 😂) and issues with puberty. most of these have been treated. I’m on thyroid tablets, I stopped gaining weight, I stopped sleeping during the day as soon as I had surgery and I stopped sleeping with my eyes open as well, but I’ve always had issues with my puberty, and I don’t have periods at 17. I hope this helps anyone who was generally wondering or if anyone needed information about a case.

@missmao901

4 жыл бұрын

There's a FB Craniopharyngioma group. Lots of support and info

@legendarygary2744

3 жыл бұрын

It really is crazy how drastically different symptoms the same type of tumor can cause in different people. I was diagnosed with one 13 years ago at the age of 15. I was barely 5 feet tall and weighed only 85 pounds. Double vision and migraines were my only noticed symptoms since my family didn't think a whole lot about my lack of growth/weight/adolescence because my dad didn't hit puberty or grow much until his senior year of high school. Recovery from surgery and adjusting to being half blind was one thing, but getting medications balanced was a long and weary road that took several years, likely in part due to drastic weight gain (I went from 85 pounds to 220 in the course of about 3 years) making my body need different levels of the medicines I need. I'm so glad you are alive today and I hope and pray that your quality of life will only get better with time.

@user-jy4zj7ep1k

3 жыл бұрын

Your awesome....hope you have a great life

Hello to all Pituitary patients. Had a Craniopharyngioma diagnosis in 1984 and subsequent removal of the rare tumour. Now 49yo from Sydney and wondering at the advances in modern medicine and this video means more is known and procedures improved to benefit patients rapid recovery time. Post operative care and monitoring are crucial to improvement as well as being surrounded by understanding and supportive persons. I have had 4 procedures in total and survived. Life is challenging but with these advances their is hope for the future treatments and research. Take care of your health and try to build up resistance to strengthen the immune system so less vulnerable to infections. Fight the disease!

@1besieged

2 жыл бұрын

I have one too, had surgery , the cyst about killed me. When you see your endocrinologist yearly he/she should do a full hormonal work up , I was tested for Cushings Disease also, it makes you gain a LOT of weight for no reason. Low D3 will jack up your immune system.. I take D2! This cyst/tumor is no longer classified as benign it is classified as malignant as it 'grows' it does tell your body that you have cancer , mine is not cancer as far as I am told, very little info. on them, as we the ones w/ them are being 'researched' till death ..... I am probably in a few studies (a few thousand)by now.

@sarahgillard1538

Жыл бұрын

Similar scenario for me. Multiple tumors, surgery 3 times, last one to place a shunt to allow easier access if it should reoccur. Anyone else deal with resulting vision problems?

I was diagnosed at 16, not an easy thing to live with.

Thank you so very much! I'm a med student from Portugal and this helped my study!

My girlfriend had this - she is 36. The surgery saved her life.

@DharmendraKumar-im2ps

3 жыл бұрын

When surgery

No way better than expansion on picture or drawing this my opinion Thanks very much from iraq

Thank you for the video! 👍

Thank you

wow....so interesting..thank you for sharing

I got diagnosed with this 3 years ago. It grew in the supersellar area and I'm half blind now l. I did 2 operations, 1 endoscopic and 1 surgery, I wish this video was out back then

@virtualethan_1531

3 жыл бұрын

god bless you

@NoemadZ.

Ай бұрын

I lost a lot of my peripheral vision, and oddly I also lost my sense of smell...

Approximately 200 people per year in the USA get one of these tumors/cysts, so 1 in 1,650,749 people get one of these in America yearly. The headaches feel like a jet slammed into your forehead, like you eyes are being twisted and pulled out of your head, like someone started a bonfire in your head, and worse then words can say...

@cademitchell4784

2 жыл бұрын

I found out i had this last year and yes the pain is unreal

Thank you very much ❤️ i am from India this is really helpful to me in my study

I was diagnoised with this 10 years ago. I underwent endoscopic endonasal transphenoidal drainage of cyst. But it was not successful as endonasal repair due to CSF leak from nose. An ommaya reservoir was inserted as open cranial surgery was deemed not suitable. I have been doing aspiration for the past 10 years. However, in late Dec last year, the accumulation of fluid in the cyst is so faster than usual. I have to do the aspiration once every 2 weeks. I am so sad in such situation. Just hope that miracle could happen one day that I do not need to go through such process.

@NoemadZ.

Ай бұрын

The same thing happened to me. I was nearly ready to go home from the hospital when I noticed a brownish-colored fluid dripping out of my nose. Finding out that I had to have my head reopened was completely heartbreaking. I felt so defeated knowing that I had to go through that all over again.

I had this partially removed in 2002 at 10 years old it took my right eyesight they then did radiation months after this tumor destroyed any future dreams I would have 😢

One friend becomes blind once her surgery. Can her vision get restored? Are there any possible opportunity?

Thank you for this informative video. My daughter has a craniopharyngioma and it can be difficult to explain what has happened to people, this will help!

@River-Moon

4 жыл бұрын

You and your daughter are in my thoughts but she'll turn out just fine ❤️, I'm 21 and healthy now and had my tumor removed when I was 6

@snehaljoshi3000

4 жыл бұрын

How is your daughter now

@TheJelenaL

3 жыл бұрын

I also had this tumor. Everything is ok now but it was hard. Just be understanding and supportive to your daughter. My father wasn’t.

@vivonerozsalehbaker8053

3 жыл бұрын

My touchter have that we make operation 2 mal but its back agen 😭😭😭😭

@pinkfogbakery9075

2 жыл бұрын

@@River-Moon good evening river moon my daughter had suprasellar mass removal and she is 10 years old now she is six months after surgery she is fine and she takes medicine for the glands the only problem is her personality changes she is soooo sensitive and she have mood swings is this normal and when does is it go away and she can be normal

Puede crecer de nuevo? Despues de la cirujia?

Is the surgery is complicated?

@legendarygary2744

3 жыл бұрын

Very complicated (though I'm not a medical professional so I can't say whether or not it's complicated compared to other procedures involving the brain). Since the tumor is essentially in the middle of your brain (especially if it grows up and in like they mentioned in the video) there is no easy way to get to the tumor. In the case of my operation, my surgeon went in through the front of my skull. The operation was over 8 hours and more than 6 of those hours were spent simply trying to get to the tumor without causing massive brain damage.

@umadevimaddela6473

2 жыл бұрын

@@legendarygary2744 What type of anaesthesia they used? I mean we’re you fully non conscious or like the semi conscious ( like feeling the operation but without pain?

i lost my brother to this tumor rip my baby bro i love u😔