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stillaliveinlalaland · 7 years

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Made it

If you would have told me 10 years ago I would still be alive today, I would have told you you’re wrong.

Actually, it all started almost 15 years ago with just a root canal. The dentist could not get my nerve numb to finish the root canal. Hate be graphic, but he even shot directly inside the tooth to try deaden the nerve. Yep, that was no help. I had to finish the root canal feeling everything.

This was just the start of my journey with this dentist and other oral facial pain specialist. My pain became bad in my face, that just breathing in on the left side of my mouth my teeth would hurt so bad it felt someone was putting ice on my teeth and face. I ended up with a total of 4 more root canals and a tooth pulled. Only to find out that was not my teeth.

Now the really fun stuff started. To be continued

I went to see a doctor, who I thought was a neurosurgeon. He had an MRI of my brain, pointed to an area and said, “This is your problem. You have Trigeminal Neuralgia”. I had no idea what he was pointing at, just looked like a bunch enhanced X-rays to me.

Trirgeminal Neuralgia is where you have an artery (vein) is dropping on your 5th cranial nerve, which is pulsating away the Myelin coating. By the way, your 5th cranial nerve is three branches of nerve on both sides of your head and face. The middle branch is the one that feels like it is affecting your teeth.

There was so much facial and teeth pain, I was will do do anything. Nothing relieved this pain. I tried all of the anti seizures drugs available. Not of them helped and pain medication did not help either. So I opted for what the doctor said was a minimally invasive surgery. This was in January, 2003.

This doctor had such an ego, he chose to remove me off of all the other medications I had been on for a year or more. Needless to say, I had a major panic attack and withdrawal symptoms at the hospital that night after the surgery. I asked who authorized lowering the doses of my medications from other doctors? Not one for of the nurses would reply, they just had the doctor call me. This was just the beginning of irresponsible behavior of this doctor.

A day later I left the hospital, still in pain and shaking from his imposed withholding of my other doctors medications. Most of these medications where for depression, so I don’t know what he think he was doing without consulting my other doctors. Turns out this doctor was not a neurosurgeon, he was a ears, nose and throat surgeon who performed these Microvascular Decompression Surgeries. This is brain surgery entering your brain behind your ears.

Within in weeks of the surgery, my pain was not getting better, just more severe. His office said I told him it was better, I doubt that. He said he could completely cut the nerve, but at this point I no longer trusted this doctor. Moving along, 2 ½ years later the pain was so excruciating I had to leave the job I loved and excelled at. I made an appointment with the head of neurosurgery at UCLA. He said it was difficult to determine from the current MRI what was going on inside my brain. His suggestion was to go back in, make sure the teflon sponge was wrapped around the vein and do a partial rhizotomy on two sections of the Trigeminal Nerve (v-1 and v-2).

Now the long repair surgery….. In July 2005, the chief of neurosurgery at UCLA thought my surgery would only take 1 hour. Unfortunately 4 ½ hours later, he was just finishing. What the original doctor did was place a teflon sponge directly on my trigeminal nerve from the brain stem completely over to almost the end. It should have been just a small teflon sponge wrapped around an vein that was supposedly dropped onto the trigeminal nerve. Not the case for me.

After waking up in the recovery room, I was in so much more pain. This was due to the nerve now becoming a live wire. It’s like removing the plastic coating off of a cord and you’re looking at the copper wire flickering. The flickering is the pain that hits the face directly. I also had a partial rhizotomy, which left me with my left forehead, left eye and part of my left face permanently numb. But, I also had a lot more pain. In January 2006, I applied for a deep brain stimulator. I had to go through a lot psychological testing. Finally was approved in late July 2006. In late August 2006, the new neurosurgeon put in a “testing” temporary deep brain stimulator. The surgery took for this took quite a while and is something I don’t recommend. Very painful.

The permanent stimulator was placed the follow week, which was the weekend before Labor Day. Unfortunately, I developed a psuedemonas infection in my brain. I was then hospitalized for 10 more days while the doctors tried to determine what antibiotic would work for the infection and that I would not be allergic to. Who knew someone like me would need an “ Infectious Disease” doctor.

After two more brain surgeries, another 3 week IV course of antibiotics, it was decided to remove the device from my brain. This was October 2006. Just in 3 short months, I had 4 brains surgeries with two rounds of double twice a day IV antibiotics. I was having just so much fun.

After waiting months for my head to heal, and no infections were left the neurosurgeon said he could re implant the device (Deep Brain Stimulator) for the permanent facial pain I was in. So on April 24, 2007, I went in for the re implant of the stimulator. I woke up the next day, which was my 20th year sober birthday is less pain. This wasn’t a fix all, it just helped with some of the major nerve damage done.

All was going better until July 2008. I started having this incredible abdominal pain. At first my doctors didn’t know what it was. I had a CT scan and it turns out both my gallbladder and appendix were kaput. So I’m the first week of August 2008, I had them both removed. The pain from both of these was just excruciating. Never thought you could hurt so much in the middle of your body.

On the road to recovery once again. In 2011, I again started having stomach problems. I kept seeing my gastroenterologist. He sent me for all sorts of tests. I changed my diet completely. Nothing helped. My gastro suggested I see a cardiologist. So I had a complete cardio work up. My heart was in great shape. Finally went back to my gastro and his reply was, “I don’t know what to do for you. Go see you pain doctor about your stomach pain”. I was so shocked. I just got up and walked out.

My pain doctor referred to me my current gastroenterologist, who I absolutely love. This new gastro is the one who told me that some individuals stomachs need serotonin and I was one of them. Within a month I was so much better. So the end of 2011 was the best since 2002. Now 2012. At the end of August 2012, I started having pain on my upper right side of my stomach. I saw my gastro and we increased my acid reducer, and PPI. This helped some.

By November I was in incredible pain from the upper right abdomen and around to my back. I started getting sick to my stomach. My gastro said get to the ER and will get you checked in. Turns out the my liver and pancreas numbers were skyrocketed. I found out that I needed a ERCP, which basically is a scope goes down your throat to your pancreas and bile duct. My bile duct was almost completely closed. The doctors opened it up and the pain left. Thank God!! This was just before Thanksgiving.

On Thanksgiving, the pain came back but this time it was on both side of my upper abdomen and going through to my back. I thought maybe I was also having a heart attack. I was back in the ER with my liver and pancreas numbers out again. The doctors checked me in and decided that I probably needed a stent at my bile duct. So another surgery. After the surgery this time, the pain was still there. The doctors just sent me home.

Now January 2013, I’m getting sicker. Can’t eat with getting sick. The only thing that helped the pain was a heating pad on high set directly on my stomach. I had to sleep sitting up, because every time I laid flat or to the side the pain was unbearable. I never have cried so much and I’m not a crying type of person.

I started seeing doctor after doctor. Not one could tell me what’s wrong. So one day I’m at my ophthalmologists office to have my eyes checked, since my left eye is numb from one of my brain surgeries. He suggested I be checked for autoimmune diseases. This April 2013.

I finally was able to get in to see a top rheumatologist near Cedars Sinai. He took a lot (10 vials) of blood and put me in 40 mg of prednisone, which is a steroid that helps reduce inflammation. At that point, I had already lost 30lbs. I looked so anorexic.

I had already paid for this convention in Maui and really wanted to go. Just before I left, as I was still in the extreme pain, the rheumatologist increased my prednisone to 60mg a day and started me on a immune suppressive drug.

#stivealiveinlalaland #Aliveandsurviving

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