Neuro-Ophthalmology Left Me With More Questions Than Answers, But At Least My Pneumatic Compression Device (PCD) is doing Its Job!
Jump to: Introduction → Is It Pseudotumor Cerebri? → Pneumatic Compression For Lipo-Lymphedema → Conclusion
First, I appreciate the time spent on my case at the University of Michigan Neuro-Ophthalmology location in Ann Arbor. I’m frustrated by being knocked back to square one with my long list of IIH-like symptoms. I am not mad at the doctor who read my test results.
It is simply hard when I am living with all this pain and pressure in my head without a definitive answer, so I can receive some relief.
Isn’t that the reality for anyone with invisible illnesses, though? We just want the suffering to stop. A name is wonderful, but relief is heavenly.
More on that in a moment, though.
I want to scream from the mountain tops about receiving the lipedema → lymphedema diagnosis. That man single handedly managed to get insurance to support the cost of a necessary tool that has reduced my overall inflammation after a few short days.
I’m starting to understand why people thought I was exaggerating about the sheer amount of pain I was in. Once my lymphatic system stopped being so clogged, I have had a reduction in overall inflammatory pain.
It is darn near a vacation after years of increasing immobility.
Is It Pseudotumor Cerebri? Is It Not? The Testing That Left Me In Excruciating Pain With No Answers.
Jump to: Introduction → Is It Pseudotumor Cerebri? → Pneumatic Compression For Lipo-Lymphedema → Conclusion
I showed up, I went through the imaging, I had another field of vision test, and I left officially undiagnosed… again.
The field of vision testing, the manual visual testing, and even the eye scans all left me with an intense migraine. I had this sensation of extreme pressure in my ears with a feeling that resembled what would happen if you kept stabbing my eardrum with an ice pick. Each “stab” occurred with every word that someone spoke. My visual testing was a mess because my eyes would blur unless I blinked frequently enough to help them focus.
I don’t have papilledema, though.
I have no answers, just pain. Lots of pain.
Now, the University of Michigan Neuro-Ophthalmology office in Ann Arbor is large. I don’t wish to directly call out anyone, as they see more than enough people, local and not, that I don’t think it would be fair.
I will say that I think the head doctor of the department probably gets a lot of angry patients when they are told that they are wrong about their thoughts on the diagnosis (or lack thereof).
I sensed that in his initial approach when explaining the lack of papilledema in my case. He explained that a partially empty sella happens to 20% of the population, and IIH is much less frequent. He started to explain how common “headaches” are when I really needed to stop him.
If only it were just headaches.
The gentleman has been in his field for a long time. Almost as long as I have been alive! I’m not doubting his capabilities; I just didn’t want my symptoms downplayed too. When I explained that I am not irritated over the results, rather I am seeking answers so the situation can be treated, he seemed to understand me better.
He acknowledged my reality and understood my frustration. I acknowledged his experience and asked questions.
It turned into a moment of mutual understanding and respect.
In frustration, I find many people forget the person across from us is also a human being. We don’t have to agree to recognize simple realities. I think basic respect for the lived experience on both sides helped me in this moment.
I am open to returning if the situation escalates. They have a baseline set of scans and results that can help me in the future if papilledema does appear. He was wonderful about letting me know that I can come back at any time for regular testing as time passes, so that we can see if there is more than the initial scans saw.
It was a polite exchange, and I appreciated his time with my case.
Am I frustrated? Heck yeah! Just not with the doctor.
I followed up with my PCP to ask her thoughts on other possibilities because being this sick is not enjoyable.
She responded to let me know that she’ll think about my situation and get back to me. As it stands, Propranolol is helping reduce migraine intensity. They can still become intense, but they tend to remain slightly milder than they used to. It is still 5-6 days per week, though.
It also doesn’t seem to explain the sensory fatigue I keep having in correlation.
I’m sure this won’t be my last post referencing pseudotumor cerebri (IIH), but it seems to have been shelved while we consider other possibilities.
Pneumatic Compression For Lipo-Lymphedema Is A Win!
Jump to: Introduction → Is It Pseudotumor Cerebri? → Pneumatic Compression For Lipo-Lymphedema → Conclusion
Let me just note that I have been living with lipedema and the onset of lymphedema long before I knew what it was.
I started forming lipedema tissue around puberty. I am pretty sure I have mentioned that my mother called them our genetically ugly knees.
No ma’am, apparently that is lipedema.
Around 30 years old, I started having seasonal swelling of my feet and ankle area. Every summer, like clockwork. I ignored it. It went away in the fall, anyway.
Then it stopped going away.
Water pills didn’t help.
I gradually got worse and developed venous insufficiency. That led me to the specialist who diagnosed me with the trifecta.
It took a while, but I received my PCD on Tuesday. My leg wraps are coming by mail, as he didn’t have the open-front wraps on hand during the delivery.
I use my machine twice a day for one-hour intervals. It has been amazing. My legs are shrinking, but I saw the most improvement in my inflammation levels. The misery level has gone down somewhat.
I’m over here just wondering how this had been missed for so long! I’m also grateful for the attention to detail received once I saw a specialist on vein care and health.
Anyone in the same boat: Take a moment to ask questions. Find out if this is the type of therapy your body needs! When all feels wrong, this really has been a bright spot in my healthcare.
Let’s Wrap This Burrito
Jump to: Introduction → Is It Pseudotumor Cerebri? → Pneumatic Compression For Lipo-Lymphedema → Conclusion
My head is throbbing today. I am doing the best I can to keep functioning, but I’m struggling.
I wanted to make sure I put my week into words before it ended, though. A lot happened. I am hoping to post more coloring pages very soon. Plus, I hope to share more Etsy and chronically snarky features. I’m working between a tight schedule and my health flares.
If you find value in my words, please take a moment to like and share this post. Bringing my experiences to others means that other wellness warriors out there can find a little solace in knowing they are not alone.
Now, join me as I take a moment for self-care. Color one of my pages while I draw something new. Have a great day, friends!
neuro ophthalmology idiopathic intracranial hypertension symptoms | pseudotumor cerebri without papilledema | University of Michigan neuro ophthalmology Ann Arbor experience | field of vision test migraine aftermath | partially empty sella and IIH connection | propranolol for chronic migraine relief | invisible illness no diagnosis frustration | pneumatic compression device for lipo lymphedema | home use PCD for leg swelling reduction | pneumatic compression therapy insurance approval | pneumatic compression for venous insufficiency and lymphedema | AIROS pneumatic compression device review | daily use pneumatic compression pump results | lipedema and lymphedema overlapping symptoms | self care with pneumatic compression pump | pneumatic compression reducing inflammatory pain | living with lipo lymphedema diagnosis story | invisible illness chronic migraine and swelling | IIH symptoms but no papilledema diagnosis journey
Angela J Shupe: I'm Probably Overthinking This... 
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