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Going to Mayo Rochester soon for aneurysm: Seeking tips
Hello all, I’m a new patient at the Rochester location. I’ll be traveling from St. Louis, MO.
I have a 6.3 mm post communicating artery bilobed with daughter sacs (3.8 and 3.2 mm) brain aneurysm. And family history of brain aneurysm and stroke.
I have also had a right basal ganglia stroke.
I called Mayo Clinic Rochester, MN and I was immediately directed to neurosurgery and I was given an appointment in less than a week. I was told this is serious and I need to be seen ASAP.
I’ve already got the diagnosis and I’ve had a 3D cerebral angiogram with contrast, CT with contrast, and an MRI w/w/o contrast.
Could anyone tell me what to expect at my initial appointment?
I have medical trauma PTSD (13 years of surgeries) and I am anxious and worried about getting up there and having to have surgery.
Would they schedule that while I am there?
Should I plan on being in Rochester for a week?
Thank you all so much for reading all this.
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You will be in the best hands at Mayo!!!! Of course you are overwhelmed and anxious! We all had the fear and yet we also had courage to see our procedures through and are able to share experiences. Accommodations: There are several places to stay within sight of St Mary's, where I believe all the heart surgeries and procedures take place. Three years ago, I had a septal myectomy and I chose for my husband's convenience to stay at the Holiday Inn Express on 16th St - 0.2 miles/5-minute walk from the St Mary's entrance. Try to avoid the need for driving and finding parking, shuttle buses are available at several places. We left Rochester the day after discharge, so we did not need a kitchen area while others stayed for a while and welcomed the convenience of a kitchen.
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3 Reactions@elainerb, I am checking in with you to see how your September 2 Mayo Clinic Neurosurgery appointment went. I know you were apprehensive, understandably and scrambling to make the mad dash to Rochester.
I am happy to talk more about anything, including volunteering. Ask away as you have time! Here is a bit more about Mayo Clinic Connect Volunteer Mentors: https://connect.mayoclinic.org/blog/about-connect/tab/volunteer-mentors/
How are you doing? What is next?
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5 Reactions@jlharsh Sorry it’s taken so long to respond.
I had surgery on September 10th with Dr. Lanzino. I had a flow diverter placed.
It went really well, they used my wrist to do the angiogram on my dominant hand which also has Thoracic Outlet syndrome. So from the swelling and bruising I couldn’t use my right hand, but I’m just getting back to using it a bit.
I cannot say enough wonderful things about Mayo Clinic Rochester. I have had dozens of surgeries at other hospitals and they pale in comparison.
I had surgery less than 10 days after my first phone call to Mayo. I was able to go home to St. Louis 3 days after surgery and follow up with my doctors here.
The care, attention, and timeliness is incredible!
Thank you for the support and I am very interested in volunteering.
Minnesota Nice is real!
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3 ReactionsYay, yay, yay @elainerb! You have such great news. So glad your surgery is in your rearview mirror. Double that for your follow-up care being done at home.
I am excited to hear you are interested. You may have already checked this out, but here is where you can learn more about Mayo Clinic Connect and volunteering. I am happy to answer questions if I can. You will want to use the link located just above “Meet the Mentors to officially find out more. https://connect.mayoclinic.org/blog/about-connect/
I am interested to know how you are doing. Will you come back and provide updates on your recovery, and also volunteering pursuit?
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3 ReactionsHello Elaine,
Im so sorry. I thought id just tell you that if you need someone to talk to please reach out.
Im 42 and had stroke when I was 36. Dr's don't know so I can only imagine what your going through.
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1 ReactionHi, @winterfox, and welcome to Mayo Clinic Connect! I will tag @elainerb so she will have a better chance of seeing your message.
How scary to have a stroke at a young age and not knowing what caused it. I also want to introduce you to @michele70, @scottrl and @taylor05 that may have experiences to share.
How is your health otherwise? How has the entire experience of having and recovering from a stroke affect you today?
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2 ReactionsI do hope you are doing better now. I'm with you on surgeries as I'm due for 22nd one on the 24th this month. Shoulder replacement surgery.. Still dot really know what has caused my several strokes. They though have found I have an autoimmune blood issue that does cause blood clots.. Maybe thats it and not my Connective Tissue disease.. who nows. Life is an adventure for sure!! Good luck to you!!
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3 Reactions@winterfox Hello, I would love to talk! I’ve been struggling with depression following this surgery.
I also have Thoracic Outlet syndrome and the arm that was used for my surgery has been through multiple traumas, so I think the recovery is taking longer.
I have Complex Regional Pain Syndrome too and it is making recovery difficult.
I’m just feeling very frustrated.
I used to be a Fine Art and Design professor - before all this - so I’ve been doing Art Therapy myself and it really helps.
I also see a pain psychologist regularly.
How has your life been effected? You can message me too!
Thank you for reaching out.
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1 Reaction@taylor05 I also have a disease that caused massive blood clotting and I had to have 2 angioplasty surgeries.
But my doctors just don’t know when my stroke happened, since I have so much going on.
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1 Reaction@elainerb oh my. I'm sorry you've had that road!! I hope all goes well for you in the future!