I was in a car accident in 2008, which resulted in every one of the discs in my spine to herniate, or bulge; except one. My head was locked to the left, and my left arm was essentially paralyzed. In September of 2010, I had my first neck surgery( a C4-5 disc replacement). During my pre-op appointments, the attending surgeon told me that they were going to have a civilian surgeon come from the medical school to assist, because they had not done very many of these procedures. Holy shit…
The surgery went as well as expected- the post-op was rough, but I got through it. My throat was so swollen that I could not talk, or eat for two weeks. Shortly after this surgery, it was obvious that they had not done the correct level. Nothing had changed. My head and arm were still locked, and the pain did not get any better.
My primary care told me that she finally had to push the surgeon against the wall and tell her that I NEEDED another surgery. I began the pre-op process at the VA for my second surgery in January of 2011. The residents were all giving me a hard time; they were insisting that I was too young for a fusion in my neck(I was 42 years old). They said that I would lose about 10-15% motion in my neck looking up, and to the left. I informed them that I could not look up at ALL, nor to the left, so I could live with that percentage.
I was told that a piece of bone would be taken from my hip, and put into my neck, and I would have a stiff neck brace for 6 weeks. It took me a moment to get used to that idea, but I have a pretty high tolerance for pain, so I knew that I could handle the pain.
Fast forward to the morning of my surgery. I am in the actual pre-op area with an IV in my arm and all; then along came a certain resident that I will not name, and gave me some very disturbing news. He said that “they” had been discussing my case for the past hour and a half and they decided to change the ENTIRE surgery. Instead of having my own bone as the fusion, they decided to use metal. After waiting for hours in pre-op, someone finally came in and told me that they were waiting for a team of doctors that would be there just to monitor my nerves.
When I woke up in the ICU, which was the original plan, the FIRST thing I heard was a nurse telling me that my surgery took way longer and was way more brutal than they thought. Yes, she used the word brutal. She then told me that I took more anesthesia than anyone else my size. I will still never understand how/why a nurse would ever say that to a patient that just had neck surgery. I was one of TWO patients that my nurse had, which was apparenlty too much for her. I had this huge cardiac lead thing on my chest, which kept beeping because she put them on incorrectly. She got so frustrated with me that I cried and begged her just to take them off- which she did. The only thing this nurse in the ICU did for me, was get me a shampoo cap, so I could try and get some of the dried, caked on blood out of my hair.
There was a very bright spot though. I could move my left arm and my head, and the pain was gone!! I was feeling great, even after the surgeon drew her little pictures explaining my “brutal” surgery. I was so happy about these results, I did not care that I had a broken neck, and was taking care of myself.
The plan was that I would spend one or two nights in the ICU, they had me on massive steroids to avoid the throat swelling. Once I was “stable” I would be moved to a regular hospital room for a day or two, depending on my progress. That did not happen. I was in the ICU for one night, and then they sent me HOME. The nurse literally walked away and left me alone with a broken neck, no wheelchair, and no escort. It took me an hour and a lot of begging, just to get a wheelchair. Needless to say, I was so ready to go home, and did.
Initially,my recovery went well. About a month after this second surgery, I began to get very ill. I was naseous all the time, and vomitted for HOURS, DAILY. I could not speak, only whisper, and anything beyond tip-toeing made me vomit. I was miserable. I could not eat, I had night sweats, felt like I had the flu, all the time. I BEGGED my VA primary care to get me back to the surgeon, I just KNEW my neck surgery had everything to do with why I was sick. Not one single person believed me. They all said that was IMPOSSIBLE.
I was sent to the GI clinic, who also refused to entertain the idea that my recent neck surgery was the cause of what was going on with me. I was so ill at one appointment that I could not even stand up straight. I was finally admitted to the hospital. I was subjected to every single GI test they had; including swallowing a “smart pill”. They told me that all the tests were normal. I was discharged after a week with them telling me that they knew I was dying, they did not know why, they were doing no more tests, and here is a big bag of pills. Go home and die. NICE.
I am 5 feet 9 inches tall, and got down to 108 pounds. I could not eat, drink, talk, move. I was miserable. Since the VA told me that all my tests were normal, I thought that maybe I was having a reaction to the hardware in my neck. I was told no, no, no way. It got so bad that I wrote AND visited my Congressman’s office. His military liaision told me that Congress CANNOT tell the VA what to do. WHAT?! The manager of my VA clinic was there as well, and the only thing that got done, was they assigned my another primary care.
My first visit to the VA after this encounter should not have surprised me, but it did. I noticed that this HUGE cop was following me around. While I was in the waiting room, he pulled my husband aside. He told me husband that he better keep and eye on me because I am a trouble maker. Things continued to get worse and more absurd.
My new doctor was HORRIBLE. She told me that I was faking, that it was all in my head. The VA used the excuse that my PTSD is MST, and all sexual trauma manifests in the abdomen. Give me a break. I had to remind her more than once of the oathe she took. FIRST DO NO HARM. She lied in my medical record, was outwardly abusive and argumentative. She listened to NOTHING. I was almost diagnosed with high blood pressure, she was that bad. My pressure SHOT up when I had to deal with her.
I went to the patient advocate, who by-the-way, are USELESS in the VA. I just got more abuse.
Finally, this woman gave me a referral to GI again. THIS time, I was able to use the veteran’s choice program, which is where a veteran can choose to go to a CIVLIAN doctor, if the wait time is longer than 30 days, or the VA facility is too far away. An appointment was made for me to get another upper endoscope through this program. When the doctor came in to talk to me before the procudure, he said that he understood that I was having a problem swallowing. I told him the same thing that I had told EVERY SINGLE VA PROVIDER; that I had a neck surgery January of 2011, and became very ill, shortly thereafter.
Guess what he said?! He said that he bet the VA cut my vagus nerve and paralyzed my stomach, and ordered a gastric emptying study. The VA had done this study a couple of years earlier, and they said that it was normal. I was made an appointment at a civilian radiology office for this study. I ate a scrambled egg with a bit of radioactive materail in it, and had to lie still for two hours while they measured how quickly the food left my stomach. This one showed that I have Gastroparesis, due to post op injury of my vagus nerve.
The reason the VA said that my test was normal, is that they did the entire thing INCORRECTLY. They MADE me walk up and down the hallway inbetween pictures(walking speeds up digestion). Talk about pissed off. How many veterans have died? I almost died TWICE, because of them. I have informed the VA, the Inspector General and Senators. Not a damn thing has been done.
I was at the edge of suicide more than once. I began to think that I WAS going crazy; that it was all in my head. Thank God for the civilian doctors, who were the FIRST ones to show me any kindess, or even listen to me. For that I am grateful.
The VA still does not know I have a diagnosis. I just received it in June of this year, and have not gotten a return appointment with the VA, yet. God help us all.