Craniopharyngioma surgery

Thanks for the note, Colleen.  I think I figured out that the updates were not for the craniopharyngioma group although I was disappointed. Guess the lack of updates should not surprise me. We are a rather rare group.Right now I am doing well.  In August of 2017 I had surgery for breast cancer.  Fortunately we found it early and I got by with a lumpectomy and radiation, no chemo.I have needed some PT to ease the tightness of some of the axillary and chest muscles.  I am able to move with less discomfort now.

Hi @rubyjane! I should apologize for absence on the craniopharyngioma message board. Life has been very hectic!
Sounds likewise for you. Hope things have settled down for you a bit. We’re gearing up for the upcoming Twin Cities Brain Tumor Walk on Sat. June 9th. Several of the first PBT patients/families are coming together. We’re looking forward to a nice 3 Year PBT reunion! You’re welcome to join us if you live near. Team PBT 3 is going to be celebrating!!!!

Hello! I was diagnosed with Craniopharyngioma earlier this year, and have a follow-up MRI later this month to determine next steps on whether to continue with wait and see mode, or to have surgery. Curious about other's experiences with this type of scenario. Also wondering if others have experienced hearing loss with this diagnosis. Thanks!

susieq8, Once my craniopharyngioma was found it grew faster than we had anticipated. It seemed very unlikely that waiting and watching would be beneficial. It appeared inevitable that surgery would be required. Since I was not experiencing symptoms that might have been anticipated it seemed wise to have the surgery promptly. I did not experience any hearing loss. However, after surgery I had double vision for about a month. It resolved as I healed and without any intervention. My suggestion is to do all the homework that you need to feel comfortable that you know all of the important information. Then as you go through discussions with family and physicians be certain to make the choice that is best for you. @rubyjane

Thank you for your response, @rubyjane. I appreciate your feedback. I'm also curious about which surgical approach was used to remove other's craniopharyngiomas...craniotomy vs transsphenoidal, etc. I'm sure much of it depends on the location of the tumor, but am interested in hearing more about this portion of the process. Thanks, again!

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.

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.

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!

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!

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!