Todd's Medical Bills/Brain Surgery
I have accrued $60,000 in bills and have worked hard at home to pay it down. With continued disability, I have been unable to bring in sufficient income, so I had to finance medical charges on credit cards. These bills are specific to payments to doctors, specialists, health organizations, and medications, but not housing, travel, apparel, etc. I would not normally ask for assistance. I hate doing this -- but I have maxed out my credit cards. A donation of any amount will really help, and all funds go exclusively to medical bills.
History: I have a history of multiple traumatic brain injury. My recent deterioration started in 2013 when I bashed my head in an auto accident when i was volunteering my time to help put a new public radio station on the air. I developed persistent nausea, headache, and running nose. From there it got worse: Pinched nerves, numbness, reduced cognition, and sense of smell and taste gradually disappeared. Problem is greatly exacerbated by head or jaw movement. After a month I started to lose weight. I got a G-tube placed for tube feeding due to swallowing problems and malabsorption, losing as much as 55 lbs, with my lowest weight being 94 lbs.
In late 2014 I started seeing specialists at UCSF in San Francisco. At that time, my brain started to make an audible loud slurping noise that you can hear several feet away. It was not until I saw an experienced Oxford/Harvard/UCSF-trained neurologist who was able to think outside the box, that it was discovered that I have had two intermittent leaks from my brain to my nasal area. The MRI shows my frontal lobe pulled into one of the holes.
In May 2015 UCSF performed surgery and attempted to patch the problem area, but afterward, the "sucking" got worse, enveloping my cranial nerves.
The defects are seen on CT imaging, however, they are unable to determine the origin of the noise. While neurologists are able to diagnose a tumor from an MRI, determioning functional/chronic issues is a Pandora's box. I've been bounced from specialist to specialist.
I obtained a second surgery at Barrow Neurological Institute in September where they agressively tried to patch the holes via very invasive procedure. After the surgery, my brain started made the noises again. A few weeks after, I tested positive for brain fluid leaking out of my nose.
Recently, there has been a hypothesis made regarding the source of the remaining elusive brain/sinus issue that comports to my exact symptoms. I am exploring options for hopefully fixing the problem and returning to "normal." (I will be sure to update everyone regarding this). Concurrent, I am attempting to pay medical bills and find funds to pay for (hopefully) the final diagnostics and treatment. Limited funds have slowed my pursuit. This and the past bills have made the situation stressful.
PS: Who Am I?: I'm from the Sacramento area and recently re-located to the Santa Clarita Valley. I lived by myself until mid-2013 in Davis when I moved in with my dad who is helping to care for me.
I have a degree in Civil Engineering from UC Davis but became interested in radio after managing KDVS, the university radio station. I like working with public/community noncommercial radio (installing transmitters and equipment, contract radio engineering, proposing new radio facilities with the FCC). I do a large amount of free engineering work for nonprofits that cannot afford it to get community radio stations on the air. I also helped form the non-profit non-profit organization Common Frequency, which helped create an opportunity for thousands of new public radio stations.
I consider myself to be an optimist: analytical, spiritual, vegetarian, laid-back Californian. I enjoy technical writing, programming, outdoors, daytrips, playing music, vegetarian cooking, vintage fashion, design, mid-century architecture, 1970 style, gardening, DJ-ing , record collecting, camping, and nonprofit volunteering.
I am greatly appreciative for any assistance that you can provide, and look forward to paying it forward when I am feeling better.
I obtained a second opinion at Stanford Medical Center via a very compassionate and skilled skull base/ENT surgeon. Her thought was pressure was fluxing in between my left and right frontal sinus to the brain. A comprehensive bicoronal craniotomy was prescribed. June 20, 2017 I reported to Stanford Surgery Center and underwent a six hour surgery. Afterwords, some of the pressure fluxing through the frontal sinus abated, but the pressure perceived through the area of the anterior ethmoidal foramen maintained. With a couple weeks, I was dripping brain fluid again. Two months later, cisternogram imaging validated the leakage. During the the next three months at Stanford, I was referred from ENT Dept to Neurosurgery Dept to Neurology Dept, then back to Neurosurgery, and then ENT, and finally they referred me to UCSF Neurosurgery.
I had my first appointment at UCSF in October 2017. Neurosurgery said the issue was a concern and needed to be timely dealt with. After three appointments, nothing had moved forward, so I was referred to the head of UCSF skull base surgery January 2, 2018. Upon assessment, I was then forwarded to one of their top ENT surgeons, which merely took one month to execute. On February 6 I was assessed, and the doctor stated he needed to comb through my records to attempt to synthesize a definitive solution. Evidently, after three tries since October (concerning my med records), they had been unsuccessful importing all my outside medical records into their database (I offered them a comprehensive pre-compiled single PDF on CD-R, USB drive, and download link -- apparently they could not figure out how to upload them), so I had to bring paper copies of all my records for them to scan separately.
So it has been two weeks and I have been waiting for reply for the next step. I do not mean to be cynical, but this entire serial has been rather absurd. Its just a sinus passage to be repaired. There is only one area left that it could be -- the area I first complained of four years ago -- and the deductive evidence is now unimpeachable. It was previously hypothesized by my previous longtime neurosurgeon and neurologist (early 2017, really good doctors, by the way) that the unorthodox negative pressure must run through the tissue into my head around complaint area (possibly via the lymphatic, or "glymphatic" system). Out of 10 surgeries, this is the only un-ventured path. The problem is that all the nerves leading to the nasal area pass through this juncture so you don't want to just snip it off.
It appears the first case of anything like this. Why it has taken so long is because the approach physicians use to assess problems (in a patient clinic setting, not research setting) absolutely precludes ever diagnosing unknown diseases. If a scientist or engineer would have approached this, I might have been treated in a third the time (read: http://bit.ly/2BFDVS1). Also, radiologists are blind to diagnoses that they are not searching for http://n.pr/2BDJQqy or http://bit.ly/2xmKfZM). To me, it is simply bonkers that doctors do not how to employ a simple empirical approach in diagnosing these kinds of cases. They will instead only make multiple assumptive diagnoses and fail multiple times doing the same thing rather than employing any scientific deductive route with tests. In fact, the top specialists at universities have been the worst at diagnosing and treating my case because their indoctrinated beliefs only endorse what they have previously experienced or learned, or nothing. They will purposely pursue a wrong/unaffiliated hypothesis based upon no evidence over an unknown path based upon evidence. The younger or more broadly trained doctors have had greater insight.
It is my hope is for this to be concluded soon. In the interim, the pressure on the nerves from the single "hole" in my head is pretty significant, leading to profuse numbness, among other issues. Because of this, I temporarily retain use of a feeding tube, which is sort of a drag, but I cannot smell/taste so I guess eating is not appetizing anyhow. The one boon is I finally got tube feeding approved by my insurance so it is not paid out-of-pocket anymore. Party.
I want to thank all of you for your support. I would have been broken down in the middle of nowhere without paying off some of these medical bills.
I was contemplating closure of this Gofundme account because the venue is not private, and I am not fundraising anymore. However its proprietary nature shrouds my access to people's direct email addresses, so I am tied to this interface to disseminate updates.
Someone asked what I currently looked like, so there's a goony picture of me taken today below. Also, a fun photo of staples after the June craniotomy.
I will be sure to update everyone from the verdict at UCSF. Maybe this will all wrap up soon. Thank you!
I wanted to wish everyone Happy Holidays. I can't thank you all enough for giving me hope. I had surgery on the 15th. My neurologist and I finally convinced the neurosurgeon and ENT surgeon to explore the defect where I felt the negative pressure pulling into my brain. The good news is they finally blocked at least 2/3 of that pressure. The bad news are two drawbacks: Although the the surgical team is supportive, they performed an unneeded procedure that they did not disclose within the pre-op appointments, email, and within the surgical authorization I signed--they went in and cut my olfactory nerves and placed a layer to bolster against cribriform CSF leaking. I lost all my sense of smell as a consequence, and the remnant pressure in my head has not been able to dissipate through the duragen layer they inserted so I am slowing sinking into a semiconscious state trying to cope with the loss. My sense of smell was everything to me.
I feel sufficiently traumatized from the whole incident. It is literally a nightmare. I decided to try to obtain a second opinion on the situation by going back to receive help from my very supportive neurologist to see what can be done. Although she's expensive ($300/hr), she has the unique training base (Harvard, Oxford, UCSF) to attempt to solve very difficult cases. She consulted with Johns Hopkins who forwarded her to find a neurosurgeon who may be able to assist.
This whole ordeal is ridiculous. I can't figure out how why I have had so much bad luck. Its what happen when doctors do not listen to you, although I am fortunate to have surgeons who are trying. I am in low spirits, worried about death, but I am tough and have to figure out how to get past this point. My mom says sometimes you just have to pull back and let the universe give you the answer. Sometimes when you have nothing, hope and the shear will to succeed and survive in themselves can precipitate miracles.
Thank you to those who have believed in my and got me to this point. I wouldn't be here without you. Best wishes to you and your family in 2017.
Your experience is incomprehensible except that it isn't. Thank you for deciding every day to keep fighting for your life. Once this next surgery is complete, let's talk about a multi-segment radio story with the purpose of educating physicians and patients on how to approach treatment, lessons learned, and calling out the blockades and the blockaders. But before that, a vacation somewhere on your new bucket list.
What Melinda said. And thank you so much for this update. Just the whole records-forwarding thing alone....the we-can-get-a-Tesla-in-space-but-we-can't-compile/share-records-efficiently thing... Gah! Anyway, you look great; keep us posted.
You're amazing, Todd. You've been bounced around more than anyone I know, yet you keep going. ... Your observations about doctors and the healthcare system are enlightening. Keep on kicking, fella!
Todd, I'm glad you're alive. You're so important to us. Good news at this end--we are finally fully on the air 24 hours a day, and we have a lot of help from good people, but nobody like you. We hope you are back to your healthy self soon.
What a rough road! You have handled it better than I could and I hope that they finally fix it. I thoroughly appreciate your comments about the approach of the medical community. I have experienced some of the same.
Todd, where are you? Can you update us? I hope things are improving for you.
Todd. Listen to Mom. A new year is upon us, my friend.
Get a great lawyer after this surgery, posthaste. SO many of us are with you in spirit.
Hope this new team/surgeon is what does the trick! Wishing you full success on Tuesday and speedy healing afterwards.
Can't WAIT to hear how well the surgery went, Bub!
Todd, I love you dude. You are the best. I hate seeing you go through this. Please let me know if you need my help for anything.
What a relief to know what has been causing your health issues all these years! I wish you the best and will be thinking of you on August 2nd. Take care, Todd!
That is great to hear! All appendages are crossed!!
Oh, my word, Todd! Finally! I am so glad that you have some answers and a solution in sight! I wish you only more good news and a speedy recovery!