Rare & Undiagnosed 101: Radiologists Matter

January 15, 2019 10:56 am No Comments 15

Updated April 28th, 2020: My father suffered through a cardiac arrest during the half-time of the Rose Bowl on New Year’s Day 2020. He was in the ICU for twenty-four days and then in rehabilitation for a few weeks. The survival rate for a healthy person to survive a cardiac arrest is 8%. For people over the age of eighty years old, the survival rate is less than 1%. We truly believe in the power of prayer and love as well as my father’s will to live. Now due to COVID-19, we cannot travel to visit him and my family that is home can only see my mother and father through their window. We pray for them to stay safe and healthy through these very uncertain and scary times. Please know how grateful we are to everyone that has continued to pray for our family and surrounds us with their love and support. 

Updated January 15th, 2019: We had such a scare this past week with my father. He was not able to stay alert and he was sleeping all day. The nurse called 911 on Saturday. They came and advised us to have him go to the emergency room. He refused. His oxygen levels were in the sixties. We put him on oxygen and prayed he would get better. He did not. He got worse. By Monday morning, his eyes did not look well and he could not stay awake. His doctor told us to take him to the emergency room. My mother was able to get him in the car. He could not stay awake in the car. Once she got him to the emergency room, he fell asleep and did not wake up for almost twenty hours. His blood test showed that his CO2 levels were double than normal. They started him on a machine to get rid of the CO2 and we waited while he slept the day and night away. We prayed and we cried. 

 It turned out he had RSV, which caused his CO2 levels to increase due to an underlying heart condition. 

Today, he woke up like nothing ever happened! He is back to his joke telling and already asking to go home. We cried our happy tears! He really scared us this past week. My dad, our G-Daddy, will continue to persevere and we are so very blessed and thankful! 

I wrote the following blog about my dad a few years ago. He is a RUN Board Member and one of our trusted Medical Advisors. I just wanted to share it again. Ava is named after my father, Ava Gene Wegner Szajnuk:)

Thank you all for your continued love, prayers and support.

Much love, Gina


Blog from April 2nd, 2016…

09_1970_Slides_7I want to encourage my rare and undiagnosed community to continue to challenge the medical system as it is today. If it was not for my father this past week, I would have had NO idea that Ava’s MRI was not read correctly. My father has been a Board Certified Radiologist for over 40 years. He was a trailblazer for radiologists in the 70s, 80s and 90s.

When I was growing up, he co39660026vered eight rural hospitals and two prisons. The rural hospitals would drive down to our home and drop off a black box of films every Sunday morning. After church, my dad would interpret the films and record his radiology reports into a tape recorder. The driver would then drive back to their small clinic, which were hours away. He was one of the hardest working radiologists in Wisconsin. He worked hard, played hard and was always telling jokes. His group of friends in our community was mostly doctors.  Dr. Richard Botham, Dr. Robert Henderson, Dr. Jim Torhorst are a few of the top physicians we had in our lives growing up. They have all since passed away. I take comfort in knowing that they are in Heaven with our rare and undiagnosed angels.

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My father is turning seventy-nine years old today. Happy Birthday, G-daddy. We love you, we respect your hard work all of these years and we love your jokes.

For the first time since Ava, my oldest, had her shunt placed in her subdural space in July, 2013, Ava started to have headaches again. It not only scared me, it scared Ava. When I called our neurosurgeon’s nurse, she was great. I explained that Ava hasn’t had a headache since the summer of 2013. If she has had any head pain, it would be a 2/10 or lower. Last week, she said it was hurting more than ever and she wanted to have a “quick” MRI. These “quick” MRIs last around eight minutes and Ava can handle them without any sedation. She has had over twenty quick MRIs. They call them MR Hydrocephalus Screens. My understanding is that they are called this for billing purposes. Ava has never had Hydrocephalus.

From the minute we found out that Ava had an arachnoid cyst, I have collected every single imaging of her brain for my father’s review. I always ask for a copy of our imaging and the report for our entire family. I send everything to my father for a second opinion. Unfortunately, we have had a lot of imaging done throughout our diagnostic odyssey. I try to look at the positive side of it…I have kept my father busy in his retirement. Thanks, Dad!

Here is a copy of Gene P. Wegner, MD’s report after he read the “official” report.

Ava Szajnuk

EXAMINATION: MR Hydrocephalus Screen, 3/21/2016

Correct History for future radiologists:

The patient is an 8 year old female with a large congenital left middle fossa subarachnoid cyst previously fenestrated with increased subdural CSF for which a left sided subarachnoid shunt tube was placed.

In Addition:

1)    Initial interpretation is correct that the small left subdural hematoma has resolved and left subarachnoid cyst is smaller.

2)    However, there is no mention of differences in degree of the patient’s bilateral subdural hygroma since the last MRI scan which has improved.

3)    And whether her left sided shunt tube remains located correctly in the subarachnoid space.

Note: this tube was placed to help alleviate the imbalance of CSF production vs its absorption.  The tube was never placed for hydrocephalus.

ADDED INFORMATION provided by Board Certified Radiologist Gene P. Wegner, M.D.  (Grandfather of patient)

2016-03-21 18.09.27

2016-03-21 18.10.24

Here is the “official” report:

MRI Results
EXAMINATION: MR Hydrocephalus Screen, 3/21/2016 4:09:00 PM
COMPARISON: MR Hydrocephalus Screen, 8/17/2015 1:23:00 PM
HISTORY: Hydrocephalus, arachnoid cyst
SEDATION: None
TECHNIQUE: Imaging was performed on a GE Signa 1.5 Tesla MRI
scanner. Sagittal, axial, and coronal single shot FSE T2 imaging
was performed in the head coil using the routine MR shunt
evaluation protocol.
FINDINGS:
* Medical devices: Left-sided subdural drain remains in place..
* Ventricles and fluid spaces: Middle fossa arachnoid cyst is
slightly smaller than previous. Convexity subdural hematoma over
the left hemisphere has resolved. Subarachnoid spaces are mildly
prominent. Ventricles are normal and symmetrical..
* Brain parenchyma: No brain parenchymal abnormality.
* Other:
IMPRESSION:
1. Left middle fossa arachnoid cyst is smaller.
2. Left convexity subdural hematoma has resolved.
3. No new abnormality detected. Stable ventricles.
This report was electronically signed by Radiologist, MD on 3/21/2016 4:43 PM.

Once I had a copy of my father’s report, I sent it to Ava’s pediatrician, neurologist and neurosurgeon. Thankfully, all three were very respectful of my dad’s interpretation. Ava’s neurosurgeon personally reviewed Ava’s MRI due to my dad’s report.   He is one of the top neurosurgeons in the country. If a radiology report looks like a child is stable, he trusts the report, right? Isn’t that the way the system works right now? There isn’t enough time in the day right now for the specialists to review at all of the imaging of their patients. It is the role of the radiologist to update them through their reports.

If this is the trust between the specialists and their radiologist, isn’t it the responsibility of the radiologist to not only interpret what is on their screen but to take five minutes or more, if necessary, to look at their file? My dad explained that it was a point of contention for him in all of his years as a practicing radiologist and working with colleagues. They did not go the extra miles. They didn’t take the extra five minutes to open the patient’s file and read their history. They skimmed the previous radiology report and made their case on what they saw in the new image.

My father worked as an independent radiologist for the majority of his career. He went the extra mile. He saved lives. I am thankful to my father for his continued expertise with Ava’s MRIs. My father has reviewed imaging on many of our friends and family. Thank you, Dad!

After reading my father’s report, our neurosurgeon called us immediately. He told me to thank my father for his expertise. He went on to say, “Gina. I’m sorry. There is no protocol for this situation. Ava is a very complicated case. I feel it is in her best interest to do nothing at this time. She should try to lay down to reset her shunt.”

I asked, “Is the shunt also responsible for her 10/10 stomach pain, side pain and shoulder pain?”

He replied, “I do not know. She’s extremely complicated.  As her neurosurgeon, I assure you that I do not think we need to operate at this time. It’s a waiting game and we will will monitor her. I’m sorry. It’s the best we can do right now.”

I asked one more question. “Are you okay if I can call your nurse for the “quick” MRIs whenever we are worried?”

He said, “Of course, Gina. Whatever you and Ava need to get through this. We are here for you.”

Thank you to my father for giving me the confidence to challenge the medical system. Thank you to our neurosurgeon, our neurologist and our pediatrician for listening to my father. We all know that everyone wants the same thing for Ava. We all want her shunt to continue to work properly and avoid any more cranial operations.  We all want Ava to live and to thrive.

At seventy-nine years old today, my father is still the brilliant radiologist he was during my childhood.

Thank you, Dad, for your love, support, prayers and continued radiology expertise. I pray for one of our children to become a radiologist. Your specialty is crucial to the entire medical system and I hope more radiologists realize how important it is for them to go the extra mile on every single image they read.

Much love,

Gina

Photograph (21)

Gene Wegner, MD

B.S.  Degree – Dartmouth College

M.D., University of Wisconsin Medical School

Faculty Appointments, University of Wisconsin Medical Imaging Department

Instructor, 1967-69

Assistant Professor, 1968-70

Assistant Clinical Professor,1970-75

Director of Radiology, Monroe Clinic & St. Clare Hospital, Monroe, WI, 1970-75

Serviced small Wisconsin & Iowa Community Hospitals, 1975-2012

Board Certified:  General Diagnostic Radiology and Radiotherapy.

Special competence in Nuclear Radiology and Nuclear Medicine

American College of Radiology Accreditation

Past member of Radiological Society of North America and American College of Radiology

Author of numerous published medical articles

Gene Wegner, MD, is a retired radiologist living in Madison, WI.

He practiced for over forty years.

Photograph (25)Photograph (47)Photograph (24)Photograph (19)Photograph (45)39660004Photograph (38)Ski39660001 Photograph (48)

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