Todd's Medical Bills/Brain Surgery

$27,116 of $15,000 goal

Raised by 412 people in 33 months
For the last 2 1/2 years my health plummeted because my brain has a pressure issue that results in brain fluid leaking.  I received two brain surgeries in the past year. One at UCSF and a craniotomy at Barrow Neurological Institute.  After the surgeries, my brain still makes a sucking noise and leaks fluid. I am currently seeking a solution and may be close to an effective treatment.

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.

Sincerely,

Todd Urick

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Apologies for the lack of an update here for a considerable amount of time -- possibly a year. I think I left off with surgery #9 at St. Johns in Santa Monica, December 2016. Anyhow, this surgery did not disengage the negative pressure between (somewhere in) sinus into my brain. However, my right eye had stopped leaking the cerebrospinal fluid (CSF)/blood slurry since this surgery. That's always reason for celebration, right? However, within a month I was leaking CSF via my left frontal sinus. A MRI stated there was a frontal abscess "worrisome" for leakage. A lab test and CT cisternogram (a XRAY-type spinal injection scan) confirmed CSF leakage in my sinus. I consulted UCLA, which only took two months to see a neurosurgeon. They provided the facile conclusion that I simply needed to "patch a hole in my frontal sinus to my brain". I said "Ah, yeaaah, but why did it start leaking in the first place in the last month, and what then is causing the pressure?" They could not provide credible explanation.

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!
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Health update. Unfortunately, due to the unconsented procedures the surgeons had undertaken in December surgery, the pressure in my head worsens daily, among other negative problems. I am starting to have difficult brain and nerve issues, including distended stomach/malabsorption, from locked muscles from the pulling down my spine. The feeding through a tube into my stomach just makes my belly get bigger. I went to the doctor Friday Feb 3rd looking for them to reverse the procedure. Instead, they wanted to pursue another brain shunt to band-aid the effect of the unconsented procedure. I previously had a shunt that failed miserably. It is a poor recommendation that will not work. My parents are uncomfortable with bringing the malpractice incident to the attention of the hospital because it apparently limits you from getting any further help to fix the problem. I can't find any health advocates out there to assist with the predicament. If anyhow has experience with these things, email me. We are attempting to appeal to the doctor to get the surgery ameliorated. My appointment with this doctor is Monday. I honestly do not know if I am going to survive, or how much longer I have. I think if they were able to reverse the procedure and additionally block the rest of the crack in my nose things could turn out ok. Thank you for your continued support. I will let everyone know shortly how things plan out.
Distended stomach
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Update 12/26/16

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.
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I am sorry there has been no update since the last surgery on election day. I got a "keyhole craniotomy", a procedure in which instead of taking off the front of the skull bone they drill a hole in the eyebrow, take out the frontal sinus bone, and endeavor procedure. This time the goal was to separate the mucosa from the dura with a layer of glue to prevent communication with the sinus. Prior to the procedure I met with the neurosurgeon to convey that it was the utmost importance to seal off the frontal defect through my nose. Anyhow, post-procedure I found it wasn't fixed AGAIN and the brain pressure problem continued. They drilled a hole in my head and inserted an intracranial pressure monitoring device. It vouched what I had been complaining about--the meter showed negative pressure in my brain, that is, pressure of a vacuum that is below the pressure of the outside atmospheric pressure. I saw a neuro-opthamologist and ENT. For some reason this took over a month while I had nasal and eye bleeding and continued CSF leakage. The ENT stated they thought they should try to fix what appeared to be a defective right orbital bone. For the last week I pleaded the the laws of fluid mechanics could not possibly stoke such a problem. As a trial, they then packed my sinuses to see what would happen with the brain pressure. The suction reduced above my sphenoid and ethmoid roof, but a the suction was rife towards the front, causing waterfall csf leakage out my nose and my left eye to swell shut. The surgeon scratched his head and said he has to re-think this whole ordeal. Anyhow, they're supposed to do SURGERY NINE tomorrow. I believe this is my last shot. Hopefully they'll finally capitulate and listen to my complaints to fix the defective nasal route or its curtains for me. Ahhhhh.
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Read a Previous Update
Melinda Brown
4 months ago
2
2

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.

+ Read More
Nancy Reichard
4 months ago

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.

+ Read More
Susan McLean
4 months ago

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!

+ Read More
Catherine Peery
4 months ago

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.

+ Read More
Bruce Raley
4 months ago

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.

+ Read More
Susan McLean
4 months ago

Todd, where are you? Can you update us? I hope things are improving for you.

+ Read More
Jeff Abrams
18 months ago

Todd. Listen to Mom. A new year is upon us, my friend.

+ Read More
Melinda Brown
18 months ago

Get a great lawyer after this surgery, posthaste. SO many of us are with you in spirit.

+ Read More
Krista Fechner
19 months ago

Hope this new team/surgeon is what does the trick! Wishing you full success on Tuesday and speedy healing afterwards.

+ Read More
Jeff Abrams
20 months ago

Can't WAIT to hear how well the surgery went, Bub!

+ Read More
Charles Albright
20 months ago

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.

+ Read More
Danae Carvacho
23 months ago

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!

+ Read More
Martha Fisher-Thornley
23 months ago

That is great to hear! All appendages are crossed!!

+ Read More
Jacqueline Danziger
23 months ago

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!

+ Read More

$27,116 of $15,000 goal

Raised by 412 people in 33 months
Created October 4, 2015
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$10
Anonymous
3 months ago (Monthly Donation)
RG
$100
Ron and Diana Glick
3 months ago

Hang in there, Todd. We are all pulling for you!

SZ
$100
Sharon Zimmerman
4 months ago

Dear Todd.. You remain in my thoughts and prayers. God grant you strength and the doctors much wisdom!

KC
$100
KNSJ 89.1 FM CommunityRadio
4 months ago

KNSJ would not be on the air without your kind and skillful guidance. You came all the way down to San Diego to make it happen. You are champ among champions on the way you have persevered... Ever so admirable, others of us would have given in. We look forward to your recovery. Your writing is so clear and powerful. Stay Strong, Until Victory. Martin

$50
Anonymous
4 months ago
$10
Anonymous
4 months ago (Monthly Donation)
$25
Anonymous
5 months ago
$10
Anonymous
5 months ago (Monthly Donation)
$10
Anonymous
6 months ago (Monthly Donation)
Melinda Brown
4 months ago
2
2

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.

+ Read More
Nancy Reichard
4 months ago

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.

+ Read More
Susan McLean
4 months ago

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!

+ Read More
Catherine Peery
4 months ago

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.

+ Read More
Bruce Raley
4 months ago

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.

+ Read More
Susan McLean
4 months ago

Todd, where are you? Can you update us? I hope things are improving for you.

+ Read More
Jeff Abrams
18 months ago

Todd. Listen to Mom. A new year is upon us, my friend.

+ Read More
Melinda Brown
18 months ago

Get a great lawyer after this surgery, posthaste. SO many of us are with you in spirit.

+ Read More
Krista Fechner
19 months ago

Hope this new team/surgeon is what does the trick! Wishing you full success on Tuesday and speedy healing afterwards.

+ Read More
Jeff Abrams
20 months ago

Can't WAIT to hear how well the surgery went, Bub!

+ Read More
Charles Albright
20 months ago

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.

+ Read More
Danae Carvacho
23 months ago

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!

+ Read More
Martha Fisher-Thornley
23 months ago

That is great to hear! All appendages are crossed!!

+ Read More
Jacqueline Danziger
23 months ago

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!

+ Read More
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