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Cranial Reconstruction

In 2010 I became extremely ill after a sinus surgery. I spent the next year and a half desperately hanging on. I found no answers withdoctors after jmultiple tests. I honestlyfelt as if I was dying of something, yet nobody had answers. I lost weight, was always shaking, throwingup, nauseas, had severe nerve pain which made me extremely weak. I felt this every single day. I didn't have a good day once in a year and ahalf. Then my pain management doctorordered a MRI that showed my brain was herniating out of a pretty big hole inmy skull & my sinus infection was entering into my skull and sitting rightup against my brain. Then I found out Ihad a hole in the lining of my brain a CSF (cerebrospinal fluid) leak. I was told I had meningitis as well. Luckily it wasn't the strain that can kill you in a day. Yet I was still living with it on a daily basis trying to go to work and keep my life together.

What cameafter this diagnosis were 3 craniotomies, and 1 endoscopic repair to repair thestructures of my skull and to patch my brain all within 1 year. After the first craniotomy, I had 3 weeks in the hospital and a difficult recovery due to my brain being so out ofbalance. I had to learn over time who the president was I was always telling nurses it was Michael Jackson. I had a hard time walking down the hall. Yet, I got through the first surgery, dealt with my ear to ear scar, grew my hairout and was actually happy & smiling again. I was more than grateful to just wake up and feel "normal"! I was able to run & practice yoga "“ anyone that knows me knows I love yoga. However, after 3 months I had the same pain return again & I knew something waswrong. Doctors sent me to the hospitalfor another injection into my spinal fluid that shows whether or not there is aCSF leak. Turns out I had a few leaks & the holes in my skull weren't healing. Surgeons tried a less invasive approach to repair and did endoscopicsurgery. 5 days after that surgery I wasleaking yet again. So, surgeons scheduledanother craniotomy. I was opened up fromear to ear again, my forehead taken off and multiple layers of patching to mybone & my dura were made. After recovery I realized I was still having nerve pain. Doctors told me it would be extremely rare ifI had another leak. But, after anotherspinal fluid injection / CSF test, they found I was leaking in 4 places &the bone couldn't heal because of the leaking. My brain was losing it's cushion with low CSF fluid and it was causingpressure on pain sensitive structures, which is what was making me so ill.
I wasscheduled for another craniotomy, and still not able to work. This time, they told me they had to do a verytechnical surgery that would take 10 hours and 4 surgeons. It was their last resort. They reserve this surgery for cancer patientswho had lost parts of their brain, or skull, or gun shot victims. They told me they would open me up from earto ear again, also open up my abdomen & take a large piece of tissue out,and use it to repair a large portion of my brain. This tissue is alive & therefore theywould need to dig a tunnel through my face in order to take the veins/arteriesand cut my neck open in order to attach them to the veins/arteries in myneck. I would never be able to smell againthey told me, and that would greatly affect my taste. They were right! I can't smell now, & Ican only taste sweet, salt and spice "“ nothing else. But, I'd gladly give that up any dayto not be in pain and constantly scared of meningitis J

I am prettytough, but these surgeries, the constant IV's in veins that were scarred, myhead being numb for almost 2 years now, scars that were going to change mybody, and the thought that when they put me under, maybe I wouldn't wake up orthat maybe I'd wake up with brain damage or suffer another complication "“ wasstarting to really get to me emotionally. It became hard to be in constant pain, have my head cut open every fewmonths and still continue to be mentally as strong as I was in the beginning. I wanted to have faith that there was goingto be a surgery that would finally fix me "“ but my body had failed all of themso far and I was getting scared that I would soon lose my job, lose myapartment and have to deal with a nonstop medical struggle. But I had hope, so I went in for this lastsurgery on 2/29. I came out of it 3 dayslater tied to my hospital bed because I woke up and started ripping the tubesand IV's out of my body J Myhead was extremely swollen, my eyes swollen shut, my neck swollen, a lumbardrain in my back, a cord attached to the artery in my neck, and my abdomen waspainful enough that I could barely sit up in bed. I managed to get home and start healing on myown. It's a long recovery process and leftme confined to my bed for weeks. I'vejust started to have a little more energy as of lately. I've just started todrive again "“ and unfortunately got into an accident where I believe I blackedout for a few seconds and rear-ended someone. Thank god it didn't damage my head, but left more financial strain. I still have swelling in my brain, which isstill causing constant pain. Doctors saythat my brain is so used to leaking and overproducing CSF fluid that it's goingto take a while to balance out. I'm hoping it goes away soon & I praynightly that my body heals and my brain doesn't fail me again J

I wouldlove to be able to do this all on my own, but the costs are growing exponentially. Surgeons charge a lot to cut your head open afew times in a year! J The medication, CT scans, MRI's, doctorvisits, blood work, spinal tests, surgeries, hospital stays, ER visits arereally adding up & I simply can't keep up with it. As much as I love being the independent personI've grown to be, I have to look for any option I can to help cover some of themedical costs I've incurred over the past couple years as well as the expensesof being on short term disability for so long. I've come up with a few options for reducing my bills, which are well over 100k. With the Goal $ I've put above, I'll be able to pay critical bills past due that are close to garnishing my paycheck, recover from IRS bills due to having to claim more on taxes to pay bills while I have been out, and to negotiate my other medical bills down to a reasonable amount.

Please know it took a lot for me to resort to signing up on this site, I've had to swallowmy pride and take a leap of faith "“ I'm not used to asking for help and usuallyhandle everything on my own, so this was a hard decision. Thanks for any help you can give,in every way you are greatly appreciated! Please share this page with any friends or familyyou think might be interested in helping! J

To learnmore about my last surgery, omental free flap reconstructive craniotomy, visitthis link:
http://archfaci.ama-assn.org/content/10/4/255.full

To learnabout CSF Rhinorrea, visit this link:
http://www.utmb.edu/otoref/grnds/CSF-leaks-050112/CSF-leaks-050112.htm

Organizer

Sara Keeler
Organizer
Denver, CO

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