Fall 2020

Ann Jones

First post: Nov 13, 2020 Latest post: Dec 27, 2020
Welcome to Ann's CaringBridge website. We are using it to keep family and friends updated in one place. Thanks your words of hope and encouragement. We appreciate your prayers and support.  Here is the story....

Ann has a cerebral cavernous malformation ("cav mal") on her medulla in the brain stem.  We are packing up now and heading back to Mayo where she will have Neuro surgery tomorrow morning, November 13 at St. Mary's hospital- Mayo Clinic in Rochester MN.  I will be able to see her for a couple of hours before the surgery and after.  No visitors are allowed the days following due to COVID-19 restrictions.  Ann will be recovering in the hospital for 3-5 days. She will likely have a week or more of rehab depending on her deficits. During rehab, she can have one visit a day (the same person each day).  She should be home in two weeks. Overall, recovery is estimated at 6-12 weeks.  Goal is to remove the cav mal, reduce current symptoms and not have any long term deficits from surgery.  

Ann has been super strong and determined this week. She has been very positive! However, unfortunately it is brings back memories of recovering from  cancer surgery, chemo and radiation in 2006.  Over dinner tonight in Rochester, we will be scheming  on how much gear we smuggle in to the hospital before the lockdown! We are praying that the surgeons remove 100% of the cav mal , there is no damage and only minor long term deficits!
Ann was incredibly brave  in 2006 and I know she will inspire many people again.

Some more background: 
Only 15% of cav mals are located in the brain stem.  Only 8% of cav mals actually bleed. They are more likely to bleed if in the brainstem and more likely to bleed again after starting. Also, subsequent bleeds tend to get more severe. Ann's cav mal is on the surface and is very "approachable"- both good things (the medulla is the size of the end knuckle of your thumb).

Ann's has experienced a couple of small bleeds over the last two years with just a prickly right cheek for two weeks. The cav mal was only 2-3mm (small) so no need for surgery- especially with Ann's existing deficits from cancer. Ann had another bleed three weeks ago with the same symptoms- but also double vision, some numbness in right arm, hiccups and "motion sickness". The symptoms usually go away in two weeks which is the best time to operate. We were planning on surgery in a few weeks because it also got bigger.  However on Saturday, Ann still had the symptoms and added a few more to the list. She had another MRI on Tuesday and the cav mal grew a little again.  Now there is no question that it is time for surgery. After the MRI  and surgeon consultation,  Ann had six more appointments Tues-Wed getting baselines for ENT, PT and surgery prep.

This is Ann's cool surgeon. We are very comfortable with him. He cancelled a vacation day he had scheduled for Friday in order to do Ann's surgery. 
He is great and has performed dozens of brain stem cav mal surgeries and has specifically done 3 or 4 that he said were nearly identical to Ann's.

Nicholas is in school a few days a week and working at Jerry's a few days a week. Katherine is at South Dakota State University studying and training for a Spring soccer season. She will be home for Thanksgiving and will stay home for finals. Both are ready to help out!  

Here is more information about cavernous malformations if your interested:

I will send an update later tomorrow after Ann's surgery.  
Please, call or text my cell 651-295-8904 if you have any more questions . Thanks again in advance for your prayers and support!

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