Going to Mayo Rochester soon for aneurysm: Seeking tips

Welcome to Mayo Clinic Connect, @elainerb. I'm glad things moved along quickly for you.

Understandable you'd have medical trauma PTSD with 13 years of surgeries. That's a lot.

If you've not yet seen it, here is some Mayo Clinic information on aneurysm:

- Brain aneurysm https://www.mayoclinic.org/diseases-conditions/brain-aneurysm/symptoms-causes/syc-20361483.

Tagging a few members who may have some information on your questions on scheduling and procedures for aneurysm (or other procedures) at Mayo Clinic @kitspeirs @roch @breick @hsminc @trki @richardhadley. Hoping they can share some useful information and help to put your mind at ease as much as possible.

How are you feeling emotionally today as you approach your surgery? How soon will you have the surgery?

Thank you so much for your help.
I’m feeling really anxious. I don’t know when surgery will be scheduled. Since I’m coming from out of town, I don’t know what to expect.

Hi @elainerb, I'd like to add my welcome. I can understand you are anxious. I can assure you that you are in good hands at Mayo Clinic.

For others reading this discussion, a posterior communicating (PCoA) artery that is bilobed with daughter sacs is a form of a cerebral aneurysm with a complex, fragile structure that increases the risk of rupture and subarachnoid hemorrhage.

The neurosurgery department is ranked among the Best Hospitals for neurology and neurosurgery in the U.S. News & World Report Best Hospitals rankings. In a few days, you will receive more information from Mayo Clinic in a package called the Patient Appointment Guide.

I'm tagging a few members like @bonnieh218 @purpleturtle @jenniferhunter @nancy82415 @jlharsh some of whom have been seen by neurosurgery specialists at Mayo Clinic.

Elaine, the Mayo Clinic patient portal is a useful communication tool before you go and while you're at Mayo Clinic. Have you downloaded the patient portal? Do you need help with that?

Thank you for including me in this discussion, Colleen.

Hi @elainerb. It is nice to meet you. I am a Mayo MN patient, have seen neurology a few times and they are wonderful. They absolutely understand the stress you are feeling. By the way, my daughter has lived in St. Peter’s, MO for several years, not very far from you.

My cousin brought her husband to Mayo Clinic when local doctors told him there was nothing they could do to for a rare condition requiring neurosurgery. I cannot possibly describe how wonderful they were with him. He had an initial consult and his doctor ordered an emergency MRI, and that happened right away. She also referred him to a surgeon and said she hoped it was ok, but his case was dinner conversation the night before. He had a consult with this doctor’s husband/surgeon that afternoon. He got super claustrophobic and stressed getting his MRI. Again, they were wonderful with him. It took a super long time and some sedation, but they all hung in there and got the test done. In his case they determined it would be safe, and best for him to go home for a week. This way they were able to act quickly, but gave him a bit of time to prepare some at home.

Your surgery date will depend on when they think you should the surgery, but also working through details like getting your insurance approval, etc. Elaine, if I were you I would absolutely call Mayo and ask them all of your questions that are concerning right now. I never get off the phone with someone at Mayo that doesn’t ask if I have all my concerns addressed. They really do want to help you.

When is your appointment?

@elainerb Welcome! You are among friends here. I had spine surgery at Mayo, and also fixation for a broken ankle (at a different time). I can assure you that you will be in very good hands. The level of care and compassion at Mayo is unmatched. They will do everything they can to help you feel at ease. Just ask. The nurse even held my hand when I went under anesthesia for spine surgery. My surgeon was so kind and he answered all my questions. I had him visit me right before we went into the operating room so I could thank him for helping me. I had been turned down by 5 other surgeons, and this step of expressing my gratitude was important to help me calm my fears. I kind of puts you in the driver's seat in a way.

I had been working on overcoming my fear of surgery. It was a deeply rooted fear related to my childhood experiences of medical and dental procedures and other emotional trauma that was linked into that fear. I did a lot of work to understand my fear and make my peace with it, and doing that freed me. Fear no longer controls me, and I have been tested with other medical procedures. I made it my challenge personally to overcome it and take control of my responses to events like this. You can do it. When time is critical, as in your situation, clinical hypnosis may help. My first surgery was a carpal tunnel operation and I did clinical hypnosis before and it helped get me through it easily. I still felt butterflies in my stomach, but I knew I was OK and safe.

A few other things that may help is being familiar with where you are going. It's all new, but it's better if it feels like a place you've been before, so I created a tour of St. Mary's Hospital which is probably where you would have a procedure with a neurosurgeon. Both my surgeries were there. Here is the tour.

"A Patient-Guided Tour of St. Mary’s at Mayo Clinic, Rochester"
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/a-patient-guided-tour-of-st-marys-at-mayo-clinic-rochester/
I also created this discussion about finding ways to cope with fear. Find something at St/ Mary's that you can connect to perhaps the pretty stained glass that looks like a rainbow at the entrance. You can imagine those beautiful colors stretching over you and embracing you keeping you safe while your there. Visualization is very powerful, and even more powerful when you pair it with music that you love, and it's all about designing an imaginary safe place and you can go there any time you need to do that. That helped me stay in control during some scary appointments (before I got to Mayo) and help to calm myself. By the time I got to Mayo, I had my plan for handling my fear, but when I met my neurosurgeon there, he was the first surgeon whom I didn't fear. He put me at ease and I had done my homework on this. I'll also include my Mayo patient story. It is posted without pictures now, but I have a copy with the pictures online that you could search for.

"How can I defeat my anxiety about medical tests and surgery?"
https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/
"Using the Art of Medicine to Overcome Fear of Surgery"
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://connect.mayoclinic.org/comment/221703/
This may be relaxing to watch. It is the post with painting I did for my Mayo neurosurgeon start to finish as a time lapse set to some nice music. That is how highly I think of him and Mayo clinic. He gave me back my ability that was being lost to a spine condition.
https://connect.mayoclinic.org/comment/222044/
Please reach out Elaine, if you need to talk. I know what it is like to have PTSD and panic attacks, and I also know there is hope. Mayo and your team will take very good care of you.

Jennifer

@elainerb If you haven't found your accommodations yet, you may want to call the free Mayo Concierge service. They have all the information on many hotels there, location and services. Many hotels have full kitchens which is nice if you don't feel like going out. There are free shuttles from hotels to Mayo, and some are in walking distance of St. Mary's Hospital, but those are a bit more expensive. They all have Mayo patient rates. If you are driving, there is construction going on and some closures on parking decks (ramps), so that would be good to ask the Concierge when you decide where to stay. It's likely you would be there a week, and that is typically what they will tell you to expect. I was there for 3 days for testing and returned for spine surgery. After my surgery, they recommended I stay at least a day to make sure there were no issues that needed attention before returning home. Your medical team may be able to advise you on how much time you need to book. The hotels are very accommodating about extending your stay if needed. Ask about that when you make reservations.

Five Ways to Contact Mayo Concierge Services

Phone: 507-538-8438

Live Chat: https://www.mayoclinic.org/patient-visitor-guide

Email: concierge@mayo.edu

Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

In-person in Rochester MN: Lobby hours are 8:00-5:00 Monday through Friday. Offices are located in the International Center in the Mayo Mathew’s Lobby, Executive Lounge on Mayo 5, Radiation Oncology Lobby – Desk R

Thank you for your kind welcome @jenniferhunter! I am overwhelmed with your thoughtfulness and help.
All of the information you have shared makes me feel a lot more comfortable.

I’ve had over 20 surgeries and invasion procedures over the last 13 years. Of course very complicated and rare surgeries, for example my first two rib bones were amputated and I’ve woken up paralyzed following 2 major surgeries. Luckily after years of physical therapy I have regained the use of my arm and hands again.

It’s really interesting that you mentioned art because I am an artist and former art & design professor. Art has been my main tool to regain motor skills as well as coping. (I would love to speak more about art therapy with you.) Thank you for sharing your art with me.
My appointment is on Tuesday September 2nd. I got into Mayo Clinic so quickly that I’ve been scrambling to make travel arrangements etc…
I am currently on my way up to Rochester, my mom and sister are making this road trip with me.
We booked a Staybridge studio with a kitchen, because I have had out of town surgery in the past and learned that a kitchen is necessary during recovery.
I really appreciate you sharing information about accommodations and getting around. It is so helpful!
Knowing more about what to expect really helps with my PTSD. Again thank you for the info about how the appointments and surgeries work at Mayo.
I had surgeons in St. Louis giving me all sorts of conflicting information and I feel so lucky that Mayo Rochester is accessible to me.
I have so much more I want to talk about with you @jenniferhunter. But my brain is currently mush.
Again thank you sincerely for all of your wonderful support and information!

Hi @jlharsh! Yes St. Peter’s MO is very close to me. Small world.
I want to thank you for sharing this reassuring information about you and your family’s experiences. It is extremely helpful to me. I feel like the more I know, the better especially in regard to my PTSD from past experiences.
My appointment is tomorrow and I had less than a week to scramble and make travel & hotel accommodations.
I’ve had a hectic week. I would love to talk more especially about how you became a volunteer.
Again sincere thanks for your your help and support.

Hi @colleenyoung thank you so much for answering my questions and connecting me to other experienced patients. Thank you for explaining my type of brain aneurysm, which is helpful for my knowledge too.
Thank you for the support and reassuring information. I felt like I was just hanging by a thread in St. Louis with the conflicting information I was getting.
I have joined the patient portal which was so easy compared with other hospital systems.
Again I appreciate your caring support and help.
I have been so overwhelmed since this diagnosis.

@elainerb You're an artist too? Fantastic! The night before my spine surgery, I had my headphones on and was just looking at one of my paintings that I brought along with me, doing my best to just get lost in the music and imagine myself in the painting. It was a watercolor of a trail in Rocky Mountain National Park.

When I met my spine surgeon the first time, I had my camera with me, and I asked if I could take a few pictures and do some sketches of him. I explained it would help me because I only draw and paint what I like, so it would help me be more comfortable. Any time I got nervous waiting for my surgery, I just did another sketch of him from the photos. I also listened to a lot of music while looking at his picture or the sketches to really cement that connection in my brain. He posed and smiled. I brought those sketches with me when I had my surgery and showed him. It was at a later follow up, that I asked about making a painting of him as a gift. His nurse helped me by scheduling me on his surgery day with an appointment at the hospital so he would be in his scrubs. We sprang it on him, and he was a really good sport. He trusted me which says a lot since he hadn't seen a lot of my work. He was really humble and never expected this which made it a sweet surprise, and he absolutely loved it.

I'd love to talk again when you're able and have some time. Please let me know what happens tomorrow. I would be there holding your hand if I could, and maybe you can just imagine that I am there with you. I will be in spirit!

God bless,
Jennifer