Craniopharyngioma

Posted by rubyjane @rubyjane, Dec 28, 2017

I had surgery in the summer of 2015 for a craniopharyngioma. Anyone else been thru this? RubyJane

Greetings! Our daughter had a partial resection of her craniopharyngioma via craniotomy. Due to the tumor’s location and significant risks her neurosurgeon (Dr. VanGompel) opted for a conservative approach followed by PBT radiation. Post-craniotomy, she experienced some peripheral vision loss that was arrested with the a 3 punch approach coordinated by her radiology-oncologist and neuro-ophthalmologist: PBT, 60 mg Prednisone daily, and full course of Hyperbaric Oxygen Therapy at Mayo. Should the tumor ever regrow and need to be removed Dr. VG feels the transsphenoid approach might be an option.
Hope this info helps.

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Hi susieq8, My surgery was a craniotomy because the location of the growth made the other options impossible to use. About one quarter of my scalp was shaved and the incision was closed with staples.

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@rubyjane

Hi susieq8, My surgery was a craniotomy because the location of the growth made the other options impossible to use. About one quarter of my scalp was shaved and the incision was closed with staples.

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Thanks for your responses! I had my follow up with MRI and surgeon today. They are recommending surgery as mass has grown slightly. They are not completely convinced it is craniopharyngioma, but might instead be hypophysitis. Has anyone heard of/had experience with this? Thanks!

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Hi SusieQ8, That’s an interesting possibility. Am not familiar with hypophysitis. But, our daughter also has an autoimmune condition in addition to the craniopharyngioma which makes me curious to learn more. Who’s your neurosurgeon? Dr. VG was great. Please keep us posted. Best!

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Hello! I have my surgery scheduled for early January at Mayo. They will not be able to remove the entire tumor as it is touching/encasing too many things. Essentially, they are doing a biopsy and removing what they can safely. I'm curious about side effects, and what type of treatment plan others experienced afterwards? I.e. radiation, medication, etc. Also, any recommendations in preparing for the surgery or after care? Many thanks!

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Hi, susieq8, I cannot speak to side effects because it sounds like your tumor is not in the same place that mine was. I did not have any annoying side effects after about six weeks. I did not have any chemo; I had proton beam radiation. Fortunately I did not get ill or even have headaches as a result of the radiation. I was more tired than before the surgery, but I considered that to be expected.

As far as prep for surgery I decided which aspects of daily life would likely cause me the most irritation if things did not go smoothly. For me that meant having enough comfortable clothing ready to use. I tend to live in t-shirts and I was concerned that a healing incision in my scalp might not be happy about having a t-shirt neckline being pulled over it. I made sure that I had enough button front shirts to use. It turned out that putting on a t-shirt was not an issue.

Also, since I am not a kitchen person when I feel just fine I knew that getting balanced meals meant having them ready ahead of time. I prepared and froze several days' worth of meals. When I felt that spending time in the kitchen just was not going to happen on that given day I knew I could go to the freezer, pull out a meal of foods that I knew I liked and simply warm it in the microwave.

Since I like reading and crocheting I had stocked up on reading material and yarn. I found that i did not have the energy or ability to focus well enough to read very much. I ended up watching a lot of TV and doing online games.

Ultimately how you choose to approach the weeks of healing that you will face will determine how well you do. There are plenty of good admonitions that are quoted too often to have much initial impact. But it is true that you need to ask for help when you need it and then graciously accept it. Take one day at a time. Believe that you are able and you will be.

Enjoy the holidays during December and approach your surgery date with confidence.

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Hello everyone! My mom, who recently turned 65, is battling a craniopharyngioma right now. She had a partial removal in October of 2018, and is currently having radiation. Is there a support group for people with a craniopharyngioma? A support group for family would be awesome, too.

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Hi, I am not aware of a support group regarding craniopharyngioma. My surgery was in June of 2015. At that time I was 62 years old. I would gladly share some insights with you and your mom. What questions do you have a this point? rubyjane

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@craniodaughter

Hello everyone! My mom, who recently turned 65, is battling a craniopharyngioma right now. She had a partial removal in October of 2018, and is currently having radiation. Is there a support group for people with a craniopharyngioma? A support group for family would be awesome, too.

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Hi! Craniopharyngioma patients and family members are welcome at the Brains For A Cure support group at Hope Lodge, Rochester MN, if you live near.

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I live just east of Mankato, so it is about an hour and a half drive which is a bit too long for me. Could an interested person from that support group send out a group email to those of us who are interested but who do not attend the meeting?

Liked by mrector

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@rubyjane

Hi, I am not aware of a support group regarding craniopharyngioma. My surgery was in June of 2015. At that time I was 62 years old. I would gladly share some insights with you and your mom. What questions do you have a this point? rubyjane

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Thank you so much for replying. Maybe we need to start an online support group! My mom is about 2/3 of the way through radiation and each day her memory, confusion, and vision loss seems to get worse. I am wondering if this is a side effect of radiation that is temporary. Her doctors are aware of everything, but because I live so far away from where she is receiving treatment, I haven't been able to speak with the radiation specialist directly. They scheduled further testing to see if there is fluid build up somewhere that could be drained, but beyond that they don't know why her vision is decreasing. While I am very thankful the tumor is benign, it still seems they can wreak havoc. I know everyone's journey is so different, but it would be great to hear how people have coped with these symptoms. Again, thanks for responding rubyjane!

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@rubyjane, that would be a great idea, if someone who attends the in-person Brains For A Cure support group at Hope Lodge, Rochester MN would post any information here in the Craniopharyngioma discussion group online. @cads, do you attend the in-person group?

@craniodaughter, I'd like you to consider Connect as your online support group. How is your mom doing?

@susieq8, I believe you had surgery earlier last month. If you're able, it would be great to get an update from you. Know that we are thinking of you.

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Hello! Sorry for the delayed response. My surgery went well and they were able to remove more of the tumor than expected. Pathology results came back with a Null Cell Pituitary Adenoma diagnosis vs craniopharyngioma. I’m working on managing post surgery symptoms of headaches, dizziness and fatigue. We do not yet have a treatment plan, but the doctors indicated that it is not necessary to rush into this phase. Hope all is well with the rest of the group.

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@susieq8

Hello! Sorry for the delayed response. My surgery went well and they were able to remove more of the tumor than expected. Pathology results came back with a Null Cell Pituitary Adenoma diagnosis vs craniopharyngioma. I’m working on managing post surgery symptoms of headaches, dizziness and fatigue. We do not yet have a treatment plan, but the doctors indicated that it is not necessary to rush into this phase. Hope all is well with the rest of the group.

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Wonderful new! Glad it went well.

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@colleenyoung

@rubyjane, that would be a great idea, if someone who attends the in-person Brains For A Cure support group at Hope Lodge, Rochester MN would post any information here in the Craniopharyngioma discussion group online. @cads, do you attend the in-person group?

@craniodaughter, I'd like you to consider Connect as your online support group. How is your mom doing?

@susieq8, I believe you had surgery earlier last month. If you're able, it would be great to get an update from you. Know that we are thinking of you.

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Hi! Yes, we do attend the Brains Together For A Cure as often as schedules permit. While we drive from Minneapolis to attend, another patient makes a round trip from northwestern Minnesota. Check-out BrainsTogetherForACure.org for meeting information and event updates. Next meeting is Sat, Feb 16th from 10am-Noon at ACS Hope Lodge in Rochester MN

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