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rubyjane
@rubyjane

Posts: 13
Joined: Dec 29, 2017

Craniopharyngioma

Posted by @rubyjane, Dec 28, 2017

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

REPLY

Our daughter had a partial resection of craniopharyngioma in 2015, as well. Proton Beam therapy treatment followed. What are you interested in knowing?

@cads

Our daughter had a partial resection of craniopharyngioma in 2015, as well. Proton Beam therapy treatment followed. What are you interested in knowing?

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My understanding is that craniopharyngiomas tend to usually appear in children or among those of us who are older.  I am now 65.  In 2015 I also had proton beam therapy.
I have noticed a decreased ability to concentrate and some memory issues. Has your daughter mentioned any problems in those areas?

Hi! Our daughter was diagnosed at age 28. And, she’s had some memory and concentration complains. However, biggest challenges … loss of pituitary, hypothalamus, thyroid, peripheral vision and nausea. Her Mayo care team is very supportive and proactive with treatments. It just requires a lot of medication management. Complimentary therapies started before craniotomy included music and art. Also, memory programs/skills training have helped her feel more in control. Talk with neuro-oncologist or neurologist if you’re frustrated about memory and concentration, they can help find cognitive therapy options, if you’re interested.

Thanks for the quick response. I am aware that for most older people memory issues are common. It is good to know that younger people who have dealt with a craniopharyngioma also need to cope with concentration and memory issues.
Right after surgery I had double vision for about a month. I was told that swelling was putting pressure on a particular nerve that was causing the double vision. That must have been the right explanation because as my face became less swollen my vision improved and I have not had any double vision since..
I was fortunate to avoid any nausea. I had thyroid cancer many years ago and have been on replacement medications for more than 30 years.
The impact on my hypothalamus is with the production of vasopressin. It is a little annoying to need to go to the bathroom more frequently to urinate, but it is certainly easily dealt with. And adding one more pill to take in the evening (desmopressin) is no challenge.
In what ways were the music and art therapies intended to help her? Listening specifically to find a recurring melody? or scrutinizing a work of art to identify certain details?
The next time I have a day of appointments in Rochester I will ask about cognitive therapy.

Hi @rubyjane, I was reviewing this discussion and wondering if you looked into cognitive therapy.
@cads, did you see RubyJane's questions about your daughter's music and art therapy. I, too, would be interested in hearing more.

Hello @rubyjane and @cads

I just noticed this conversation and while I'm not at all familiar with this disorder I would like to join Colleen in encouraging you to look into music/art therapy. There are some great studies that have been done showing the effectiveness of music and art on cognitive problems and how it helps to create new paths in the brain. Here is a link to a video regarding music and the brain,

Here Is What Music Does To Your Body

Here is what music does to your body.

Posted by Hashem Al-Ghaili on Thursday, March 1, 2018

As a person with a mild Parkinson's diagnosis, I have been involved with music therapy and have seen the difference for myself and others when music becomes part of my life style. I am also involved with a therapy choir and I have seen very uncommunicative people start communicating as a result of music. It is simple to do, free of charge and can make a difference.

Cognitive therapy is also very helpful. Sometimes doctors will not mention these types of therapies, so you will have to ask specifically for it.

You might consider calling your local university and asking about music/art therapy programs and if they have students who might be willing to offer their support/services. It really does make a difference.

Teresa

Liked by cads

@hopeful33250

Hello @rubyjane and @cads

I just noticed this conversation and while I'm not at all familiar with this disorder I would like to join Colleen in encouraging you to look into music/art therapy. There are some great studies that have been done showing the effectiveness of music and art on cognitive problems and how it helps to create new paths in the brain. Here is a link to a video regarding music and the brain,

Here Is What Music Does To Your Body

Here is what music does to your body.

Posted by Hashem Al-Ghaili on Thursday, March 1, 2018

As a person with a mild Parkinson's diagnosis, I have been involved with music therapy and have seen the difference for myself and others when music becomes part of my life style. I am also involved with a therapy choir and I have seen very uncommunicative people start communicating as a result of music. It is simple to do, free of charge and can make a difference.

Cognitive therapy is also very helpful. Sometimes doctors will not mention these types of therapies, so you will have to ask specifically for it.

You might consider calling your local university and asking about music/art therapy programs and if they have students who might be willing to offer their support/services. It really does make a difference.

Teresa

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Teresa, thanks for reminding me that music is important for many of us. As I was thinking about what I wanted to say to you I realized that the amount of music in my life has dropped off a lot since 2000. My daughters are both musicians, not professionally but primarily for their own enjoyment.. Both play violin and piano and one also plays cello. Since both left for college I have lazily allowed music to slip into an unimportant role in my life. Thanks for the reminder to turn the radio back on . rubyJane

@hopeful33250

Hello @rubyjane and @cads

I just noticed this conversation and while I'm not at all familiar with this disorder I would like to join Colleen in encouraging you to look into music/art therapy. There are some great studies that have been done showing the effectiveness of music and art on cognitive problems and how it helps to create new paths in the brain. Here is a link to a video regarding music and the brain,

Here Is What Music Does To Your Body

Here is what music does to your body.

Posted by Hashem Al-Ghaili on Thursday, March 1, 2018

As a person with a mild Parkinson's diagnosis, I have been involved with music therapy and have seen the difference for myself and others when music becomes part of my life style. I am also involved with a therapy choir and I have seen very uncommunicative people start communicating as a result of music. It is simple to do, free of charge and can make a difference.

Cognitive therapy is also very helpful. Sometimes doctors will not mention these types of therapies, so you will have to ask specifically for it.

You might consider calling your local university and asking about music/art therapy programs and if they have students who might be willing to offer their support/services. It really does make a difference.

Teresa

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hi, cads, I failed to ask for assistance with my cognitive issues during the last series of appointments that I had. I was more concerned about my physical health at that time. I read Colleen's suggestion about incorporating music into my life and I intend to do that.

@colleenyoung

Hi @rubyjane, I was reviewing this discussion and wondering if you looked into cognitive therapy.
@cads, did you see RubyJane's questions about your daughter's music and art therapy. I, too, would be interested in hearing more.

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Colleen, Today is 4/20 and I rec'd an email telling me what is new on Connect. The information for the craniopharyngioma group said that there were 8 updates. I found only the comments that have been on the site for many weeks. I found no new comments. Am I missing a way to find the new comments? Why would there be a claim that there are new comments when it appears there are none?.

@colleenyoung

Hi @rubyjane, I was reviewing this discussion and wondering if you looked into cognitive therapy.
@cads, did you see RubyJane's questions about your daughter's music and art therapy. I, too, would be interested in hearing more.

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Hi @rubyjane, I think the 8 updates were referring to the Brain Tumor group as a whole and maybe not specifically to the craniopharyngioma discussion group. Apologies for the confusion.

On another note, how are you doing?

@colleenyoung

Hi @rubyjane, I was reviewing this discussion and wondering if you looked into cognitive therapy.
@cads, did you see RubyJane's questions about your daughter's music and art therapy. I, too, would be interested in hearing more.

Jump to this post

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.

@colleenyoung

Hi @rubyjane, I was reviewing this discussion and wondering if you looked into cognitive therapy.
@cads, did you see RubyJane's questions about your daughter's music and art therapy. I, too, would be interested in hearing more.

Jump to this post

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

@rubyjane

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

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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!

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