Happy Saturday! This week we are talking Disney (again) and about my mom's battle with her cerebralspinal fluid leaks. Don't forget to read more for links to this week's recipe posts!
GLADD FAMILY HAPPENINGS:
A quick journal of this week with the Gladd’s (that’s us)!
Walt Disney World Vacation
As you know from my previous Saturday Seeds post, we spent all last week at Walt Disney World Resort in Florida. We had a great time! The weather was colder than I would've liked, but we made do and bundled up.
Judah really got into the Disney pin trading! My aunt bought both boys a start up set of pins from Amazon and this Disney lanyard so they had plenty of pins to trade. He came up with the brilliant idea to place some of his pins on a Goofy hat! I told him he could pick one souvenir each day, so the first day was an autograph book and the second day he chose this Goofy hat.
He wore this hat all day every day and had SO many compliments from people around the park. He was quite the Disney tourist!
I'm going to write a separate post in the future that includes more photos. My parents joined us for 3 out of our 5 days at the parks. It was so fun to spend time with them at the happiest place on earth. I can't wait to share more of our trip later!
Cerebralspinal Fluid Leak
Speaking of my parents... my mom isn't feeling so well. A few years ago, she was having some major health problems and could not figure out what was wrong. She went to specialist after specialist in her hometown of Grand Rapids, Michigan where they sent her on a wild goose chase. They told her she was depressed, they medicated her, they referred her to a chiropractor, they said it was in her head, they said she possibly had Parkinson's or meningitis or spinal stenosis, etc. etc. etc.
It wasn't until my dad insisted on taking her to Mayo Clinic in Rochester, MN two years ago that she finally found answers! Her initial appointment was as a referral for Parkinsonism symptoms but when the Parkinson's specialist read her MRI he immediately was able to diagnose it as Cerebralspinal Fluid (CSF) Leak instead!
The leaking of your cerebral spinal fluid will cause all sorts of problems. In short, this fluid is liquid that protects your brain and spinal cord. If it leaks, the brain will slowly drop or sink and create headaches, balance issues, ringing in your ears, cognitive deficits, etc.
Apparently, my mom had been slowly leaking CSF for years and because this core issue was not found right away she got so bad that we thought she was never going to be better. Her face was sunken, she couldn't walk without falling, headaches were unbearable.
We were relieved to find out it was not Parkinson's and that there was a cure for this CSF leak. She received 17 blood patches at Mayo two years ago and had immediate results. She was a new woman! In fact, she was better than we could remember her being for years!
But, in the last few months she's showing symptoms again of leaking. She immediately received another MRI and discovered she is, indeed, leaking again. The blood patches worked temporarily, but there is a more invasive surgery that could permanently fix it. So now we are waiting for her next appointment at Mayo where she will have a myelogram and discuss treatment options. We are hoping the surgery is the answer and that it will be a permanent cure!
I guess I wrote about this now because CSF leaks is a newer diagnosis that goes misdiagnosed too often. Maybe this post will raise some awareness on the topic and give someone else out there a little hope.
THIS WEEK ON SEEDED AT THE TABLE:
Links to recipes or other posts published this week on Seeded At The Table.
Peanut Butter Cup Blondies - These Peanut Butter Cup Blondies have JUST the right amount of peanut butter flavor. They are gooey and yummy cookie bars with chopped peanut butter cups mixed in. The PERFECT dessert for your chocolate peanut butter craving.
What to See and Do in Dubai - We recently had the opportunity to spend a week in Dubai, a city in United Arab Emirates. Read more for a photo-heavy recap of what we saw and did in Dubai.
Garlic Cheese Bites - Get these Garlic Cheese Bites into the oven within 10 minutes. These gooey and cheesy bread rolls are the perfect easy appetizer for pizza night or any party!
Enjoy your weekend!
Sandy says
I found your post as I was searching for CSF leak specialists in Florida in case there are any there. I have had one since 2009 and have had 5 blood patches. Now there are online support groups, a Spinal Leak foundation, annual symposiums at Cedar-Sinai Medical Center and experts at Duke, Cedars and Stanford. I hope your mom gets relief but she should try the others, if not. Each is a little different but in general, Duke is less invasive and chooses a more conservative approach but they all work together on the persistent cases. I am praying for your mom!
Nikki Gladd says
Thank you, Sandy! I wrote this post 4 years ago, and not long after then she went back to Mayo Clinic in Minnesota and received a more targeted blood patch. This one was different in that it included fibrin glue to make it more permanent. She has not (yet) leaked again in 4 years! In fact, she is more spunky than I ever remember! 🙂 We have really appreciated Mayo Clinic and their noninvasive treatment towards this. They also have an entire department and team dedicated to CSF leaks. So glad. I hope you are continuing to do well and happy you have found good treatment, too!
Diane says
I'm sorry your mom is having trouble again! I will pray for her 🙂
Nikki Gladd says
Thank you, Diane!!