Time for surgery: Questions about travelling home after brain surgery

Posted by teresaallen @teresaallen, Nov 10, 2020

Hello group! I am new the group, although I have had my Meningioma tumor for 3 years. Like most of you, it was discovered by accident through another visit to the emergency for me. The first year I was a mess, because my sister had just had two removed and ended up stroking/paralyzation and a very long recovery. I’m thinking great..not looking forward to this journey God, but you have chosen my path…..Back then it was a little over 2cm, but it has continued to grow and now up to over 4.3 cm. I have been graced with no symptoms so far. It is located on the dividing membrane on both sides so I was told surgery will be very difficult and possibly a very long rehab…this was from a local surgeon. Well I called Mayo and what a relief and comfort listening to the words and possible outcome from Dr. Lanzino. I will be having the craniotomy on the top of my head and possibly two entrances to tackle this annoying tumor on both sides of the membrane. He gave me such hope that eventually I will lead a normal life BUT I still have to have surgery. I have decided to do it in February or March (perfect weather in MN..right??? Lol) need to get things in order.

When I found this group I was so happy, where I can read about other people with the same issues as me and successfully having surgery and living their lives. My question to you all is … after surgery were you able to travel home by car? Any positive reasons for the drive instead of flying?? I could charter a special private plane (I have a friend who will give me a huge discount and also works with Wings of Mercy). I live in Michigan. Thoughts and maybe some idea on what my recovery will be like if all goes as planned???

Thanks for your comments and thank you all for helping a newby pop in and see what I am going to be looking at. It does give some comfort and I am sure I will be asking questions after surgery. I keep thinking if I forget about it and ignore knowing something is in my head it will go away…ugghhh…nope! Lol. Again, many thanks.

@teresaallen Welcome to Mayo Clinic Connect. It sounds like you are on a difficult journey and that you greatly appreciate the give and take within the Connect community, especially hearing member's success stories. Your main questions are regarding traveling home after surgery. Below I have linked the Mayo Clinic Brain Tumor page. If you follow the links it discusses lodging etc.

– Brain tumor care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/brain-tumor/care-at-mayo-clinic/mac-20350092

I understand that you want to hear from other members that have gone through something similar. I'd like invite members @mrector @jmb73 @bobhills @pat5 into the conversation. They may be able to help answer your questions.

Not everyone's experience is going to be the same, nor will their aftercare. I'm wondering if you would consider contacting your surgeon's office regarding aftercare?

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@erikas

@teresaallen Welcome to Mayo Clinic Connect. It sounds like you are on a difficult journey and that you greatly appreciate the give and take within the Connect community, especially hearing member's success stories. Your main questions are regarding traveling home after surgery. Below I have linked the Mayo Clinic Brain Tumor page. If you follow the links it discusses lodging etc.

– Brain tumor care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/brain-tumor/care-at-mayo-clinic/mac-20350092

I understand that you want to hear from other members that have gone through something similar. I'd like invite members @mrector @jmb73 @bobhills @pat5 into the conversation. They may be able to help answer your questions.

Not everyone's experience is going to be the same, nor will their aftercare. I'm wondering if you would consider contacting your surgeon's office regarding aftercare?

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Thank you for your response, and yes I will contact my surgeon on the travel question. I appreciate everyone’s different journey and reading their stories. Even if it is not the same type as mine I still get some comfort. Thank you again!

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@erikas

@teresaallen Welcome to Mayo Clinic Connect. It sounds like you are on a difficult journey and that you greatly appreciate the give and take within the Connect community, especially hearing member's success stories. Your main questions are regarding traveling home after surgery. Below I have linked the Mayo Clinic Brain Tumor page. If you follow the links it discusses lodging etc.

– Brain tumor care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/brain-tumor/care-at-mayo-clinic/mac-20350092

I understand that you want to hear from other members that have gone through something similar. I'd like invite members @mrector @jmb73 @bobhills @pat5 into the conversation. They may be able to help answer your questions.

Not everyone's experience is going to be the same, nor will their aftercare. I'm wondering if you would consider contacting your surgeon's office regarding aftercare?

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Glad to hear that your discovery was by accident (as mine was) and that surgery will fix it. I had mine 11 months ago, have been playing golf all summer, rode home in car (with wife driving) after surgery, and still have some numbness in side of face but life goes on. Good luck

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@teresaallen

Thank you for your response, and yes I will contact my surgeon on the travel question. I appreciate everyone’s different journey and reading their stories. Even if it is not the same type as mine I still get some comfort. Thank you again!

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@teresaallen You may benefit from reading past conversations related to your topic of meningioma. I have listed three such topics below.

– Watch and wait is over: meningioma has grown: https://connect.mayoclinic.org/discussion/watch-and-wait-is-over/
– Share Your Brain Tumor type & Years since Diagnosis: https://connect.mayoclinic.org/discussion/tumor-type-years-since-diagnosis/
– Life after Brain surgery: https://connect.mayoclinic.org/discussion/life-after-brain-surgery/

Did you by chance already read these discussions?

Liked by teresaallen

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@bobhills

Glad to hear that your discovery was by accident (as mine was) and that surgery will fix it. I had mine 11 months ago, have been playing golf all summer, rode home in car (with wife driving) after surgery, and still have some numbness in side of face but life goes on. Good luck

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@bobhills Thank you for your input! Not sure how this will go, Doc said probably issues with my sensory in my legs after, praying all will go well. I have faith and trust!

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@teresaallen

@bobhills Thank you for your input! Not sure how this will go, Doc said probably issues with my sensory in my legs after, praying all will go well. I have faith and trust!

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You will have your surgery, do your re-hab and exercise, and move on. Good luck again

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Dear Teresa, I am sorry to hear of the difficulties you are having due to your tumor. I hope I can offer some encouragement about post surgery, although I suspect that what actually happens is a varies widely depending on the patient’s condition and care providers. I had a large meningioma surgically removed with a single craniotomy in 2018 at a hospital about 225 miles from my home. I had an uneventful recovery, with no complications. In 5 days after surgery I was released to be driven home, about a 4-hr drive, by my wife in our personal vehicle, which is what we did without incident. However, later a nurse told me that, given the circumstances, he was surprised that I was not required to have been taken home by ambulance. Perhaps my situation was unique in that my recovery was smooth and mostly pain free and presented little risk in being driven home by my wife. I wish the same for you such that you are granted permission to travel in the most convenient and economical way for you. Best to you!

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@erikas

@teresaallen You may benefit from reading past conversations related to your topic of meningioma. I have listed three such topics below.

– Watch and wait is over: meningioma has grown: https://connect.mayoclinic.org/discussion/watch-and-wait-is-over/
– Share Your Brain Tumor type & Years since Diagnosis: https://connect.mayoclinic.org/discussion/tumor-type-years-since-diagnosis/
– Life after Brain surgery: https://connect.mayoclinic.org/discussion/life-after-brain-surgery/

Did you by chance already read these discussions?

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@erikas I did go through a few but I want not sure if these were any of them. I will be reading up on them and appreciate your assistance.

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@fiddlinchuck

Dear Teresa, I am sorry to hear of the difficulties you are having due to your tumor. I hope I can offer some encouragement about post surgery, although I suspect that what actually happens is a varies widely depending on the patient’s condition and care providers. I had a large meningioma surgically removed with a single craniotomy in 2018 at a hospital about 225 miles from my home. I had an uneventful recovery, with no complications. In 5 days after surgery I was released to be driven home, about a 4-hr drive, by my wife in our personal vehicle, which is what we did without incident. However, later a nurse told me that, given the circumstances, he was surprised that I was not required to have been taken home by ambulance. Perhaps my situation was unique in that my recovery was smooth and mostly pain free and presented little risk in being driven home by my wife. I wish the same for you such that you are granted permission to travel in the most convenient and economical way for you. Best to you!

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@fiddlinchuck Thank you for your comment. Yes, I agree each person will be different on recovery. Mine I am told will be with my legs, sensory, stumbling, off balance..but who knows..we will see. I will be driving to MN from Mid Michigan. If it is just a big headache thats ok, but if someone has to carry me, wheel me or whatever, then I would consider flying home. Boy all these unanswered questions until surgery. lol I do hear many saying they don't have too much pain after surgery, for this I am relieved. Thank you again!!

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Good luck to you with this tough journey . Glad you found great help! God bless you and yours.

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Hello
Dr. Lanzino was my surgeon for an arteriovenous malformation. I have only good things to say about him, his staff, and my experience. It was an 8-9 hour operation. And I was not prepared for my need for after care, but that too went very well. I went to a long-term care/ rehab affiliated with Mayo's for 21 days. Then I flew home. My best of luck to you during this 'nervous' time.
Sincerely,
Peggy

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@mockinbrd

Hello
Dr. Lanzino was my surgeon for an arteriovenous malformation. I have only good things to say about him, his staff, and my experience. It was an 8-9 hour operation. And I was not prepared for my need for after care, but that too went very well. I went to a long-term care/ rehab affiliated with Mayo's for 21 days. Then I flew home. My best of luck to you during this 'nervous' time.
Sincerely,
Peggy

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@mockinbird thank you for your reply! I am expecting rehab also, I feel very comfortable with Dr Lanzino…a little unnerving but I feel pretty confident and content for the most part…until the day of surgery..lol. Mayo is amazing with all of their information, these blogs and everyone has been so courteous.

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@teresaallen

@mockinbird thank you for your reply! I am expecting rehab also, I feel very comfortable with Dr Lanzino…a little unnerving but I feel pretty confident and content for the most part…until the day of surgery..lol. Mayo is amazing with all of their information, these blogs and everyone has been so courteous.

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Best of luck now and with your future endeavors. The resources at Mayo's are amazing as well as the talent. I found the staff to be caring. If you have concerns, I'm sure Mayo's would want to help with anything. That is reassuring. Best with all.
Peggy

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