Ashlynn’s Story: Neurosurgery to Treat Craniopharyngioma

At age 9, Ashlynn’s parents noticed that she was constantly thirsty and wasn’t meeting her growth milestones. After talking to their pediatrician, they were referred to Texas Children’s Hospital for further testing. The test results showed that Ashlynn had a rare type of brain tumor - a craniopharyngioma. She would need surgery immediately to remove it. The neurosurgery team was able to successfully remove the tumor through a minimally invasive surgical procedure and Ashlynn is now thriving. To learn more about treatment for brain tumors, including craniopharyngiomas, visit texaschildrens.org/neurosurgery.

[@oliviaoescher8216]

I had the same thing at 4 years old and now I’m 18 and a senior in high school.

[@oliviaoescher8216]

@Travel With Alen I had to stay in the hospital for four months after the surgery and I had to get physical therapy.

[@oliviaoescher8216]

@Travel With Alen I had issues with balancing and adjusting to seeing out of one eye. I had trouble going done stairs. Two years after my surgery my tumor came back and I did 31 days of radiation.

[@RAJUPAATI]

How are u now ? My son is 5😢

[@oliviaoescher8216]

@@RAJUPAATI I’m doing good. I have been like 13 years clear.

[@RAJUPAATI]

​@@oliviaoescher8216 how are you❤

[@filmmaker91361]

Hi, I'm Matthew Howard and I had a total of 8 surgeries for a Craniopharyngioma starting in 1991 and ending in 1998 and 30 treatments of radiation therapy. I was told that I one of the first people that was able to have their Craniopharyngioma removed. I was 5 years old when I had my first surgery and presented with massive headaches and vomiting. I still have frequent visits with my endocrinologist and MRIs every two years. I am on a long list of medications which we are still tweaking. I work full time and have been employed at Disneyland in California for the last 15 years. I am now 36.

[@emmabootsie]

Hi Matthew - I also had surgery in 1991 to remove a craniopharyngioma - full resection at the talented hands of Dr. Michael Scott at Boston Children's Hospital. I was also 5 at the time; now I'm 37. I'm sorry to hear you needed so much radiation after numerous surgeries. Even without radiation, I take hydrocortisone, synthroid, estrogen by way of birth control pills, and lexapro for anxiety. I was able to discontinue use of DDAVP, with kidney function monitoring to ensure there are no negative side effects occurring without that med. I'm currently writing a memoir and have long been searching for information about how adults are functioning (or not) after having this type of tumor and treatment as a child. Doesn't seem to be much out there on the subject.

[@aishwariyad4737]

Hi sir, my sis was diagnosed with craniopharyngioma after she started fainting often when she was 24 yrs old. But she took some medications for that and it didnt present with any symptoms after that. So we thought she was alright but after 5 years suddenly her condition worsened when she started vomiting non stop. We took her to the hospital and they they said she has to undergo two surgeries. One is (minor surgery) to implant a VP shunt to drain CSF and other major surgery craniotomy to excise the tumour. After the surgery she lost her vision in right eye. The day before surgery her eye sight was 6/6. So clearly the vision loss was due to the surgery. Now the prob is she has only 30% vision in left eye. So if the tumour grows again will it affect the left over 30% also? Do u know anything that can help us. Pls sir..

[@novembermaya.]

I have that my last day of radiation was yesterday at st jude

[@James-kw2lv]

I also have craniopharyngioma i wish that i couldget well soon like her but we dont have that much to afford a surgery

[@patrickliang4228]

I am a 39 male and I was just diagnosed with the same tumor. The current size is 2.2 cm and I was told it cannot be fully removed because it could affect my neurological cognitive parts, which means it may grow back and become chronic. I am wondering how could they actually remove it all? I just did my MRI and will meet my doctor next week to decide how to proceed. Been cryinG every night and feel quite scared but I know I will need to do tHis surgery as my vision is greatly affected. Thanks for this video.

[@cademitchell4784]

I have this same tumor and i had my tumor drained and did proton therapy and feel like its a very good option.

[@RAJUPAATI]

How r u now ?

[@infinitechaoss]

is there a community where we can all help each other? bounce back information so no one feels alone?

[@katelinglogowsky504]

dont think so but im currently dealing with the tumor and am scheduled for surgery and wouls really love to speak with anyone who is also dealing with it.

[@infinitechaoss]

@@katelinglogowsky504 I do not have it but my 12 year old son has it.

[@usamarafieck1715]

Does she have any symptoms from the surgery?

[@annamartine5629]

I had the same thing. Had complete resection. I have no hormones. I am struggling.

[@filmmaker91361]

Have you seen an endocrinologist. Find one you like and with will change everything!

[@johnny_boi5456]

I was in 6th grade when I found out I had a craniopharyngioma

[@ehla9124]

My son 6years of age have a craniopharyngioma and I don't know what to do because the tumor in his head affects the nerves through the eyes and his right eye coudn't see and his left is not good to see.. Please help😭

[@TexasChildrensVideo]

Please send is a PM on our Facebook page.

[@theholidayboy543]

I had my surgery almost six years ago it’s not fun

[@dr_ismail_wazir]

and how r u doing now?

[@theholidayboy543]

I’m doing fine I had to have radiation after three months because my tumor grew back but I’m doing fine now

[@theholidayboy543]

Ismail Khan I’m doing fine I had to have radiation after three months because my tumor grew back but I’m doing fine now

[@kimberlieevans1549]

@@theholidayboy543 did it grow back fast ???

[@theholidayboy543]

@@kimberlieevans1549 within three months it had started growing back