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Stage 4 Metistatic Melanoma

Posts: 2
Joined: Oct 2011

in June 2008 the VA removed stage 3C Melenoma from my back leaving me with a large scar but after that the only follow up was to see dermitology for somthing else to show up. Nothing else was done,not even scans.
• On Sunday night, 29 March 11, while at the top of the stairs, my left leg that is in a permanent brace from the VA gave away sending me backwards head first down six stairs . My wife heard the fall and came running down the stairs to find me at the bottom. I was totally distorted, but not unconscious. Upon my wife helping me up the stairs she tried to help me sit down at the kitchen table while I tried to collect my thoughts. As I went to sit down, I collapsed again sending me backwards and onto the floor. My wife then helped me upstairs to the bedroom and I fell again before getting into bed.
Upon waking up in the morning, I went to get out of bed only to find out that my left leg had no function or strength at all. I could not even lift or move it. After putting on my normal leg braces on both legs (which I have been using for years because of leg deterioration due to multiple surgeries), I was able to get around but with some difficulty.
As the day progressed, I noticed more problems as well as a headache worse than normal and also other left side weakness. At that point, I called the Bettendorf VA Outpatient Clinic and spoke with my Case Manager, Tina. After giving her details of the events of what had occurred the night before and was continuing throughout the day, she informed me to have my wife drive me to the VA Emergency department in Iowa City vs. going to a local hospital to get checked. I called my wife and she drove me to the VA Emergency. She really couldn’t understand why the VA would have us drive over an hour vs. just going to a local hospital for faster care and I told her VA rules, but I should be ok.
When I arrived, they were already expecting me as Tina had contacted them and filled them in on the details. I was checked in, had vitals taken by a nurse and then also told them events of what had happened.
Upon meeting with Jennifer (who had a trainee with her) we explained everything to her; however, my wife and I both noticed that she had a chip on her shoulder and an attitude that seemed to be “I know what I’m doing” attitude and did not appear to be really listening to what we were saying. We gave her my other medical background with my past back problems and legs but stressed the fall down the stairs and current status was much worse than normal otherwise we would have not came to the emergency room. She checked my legs, asked me to attempt to walk and asked several questions to make sure I was coherent (i.e.: name, date of birth which year it is etc.) as well as checked my face and asked me questions which appeared were questions related to checking for signs of a stroke (i.e.: asked me if I had any signs of a droopy face). She indicated she was going to order me to have a CT scan and MRI. At one point when both myself and wife questioned her on part of a MRI procedure she seemed to catch an attitude and was basically arguing with me and you could tell she was very irritated that I was asking too many questions or what she thought questioning her authority, as a matter of fact, she removed her gloves, whipped them into the trash and we never saw her again.
After much waiting, I was sent for a CT scan and MRI which I spent a long time in (from top to bottom/ from head to toe), so just assumed they were doing a full body scan which would include my head since I had fallen head first down the stairs and didn’t know what was happening to my body.
After returning from the MRI and almost seven hours after entering the ER, a senior resident came in to go over the results who was now on duty. At that time, my wife and I were informed that there was “good and bad news”. We were informed I had not done any more damage to the middle back than had previously been damaged, but had a badly bulged disc in the lower lumber to the right side. He indicated they were perplexed why the left leg was not working and that the whole left side was not working properly. At that point, my wife asked if they had done a full body scan including the head and they said no just the lower half of my body. We were then told that the feeling should come back within 7 to 10 days, but if it didn’t to let them know and they would have to rethink it, but in the meantime I could go home and I asked if I could drive and they said I could.
The following studies were performed:
X-ray exam of lower spine
X-ray exam of thoracic spine
MRI lumbar spine w/o dye
MRI chest spine w/o dye
After going home, things continued to get worse day by day (both legs and my entire left side was continuing to get less and less feeling and my headache was worsening and I was getting nervous as to why my body was doing things it had never done before. By Tuesday or Wednesday, I called back my case manager, Tina, at the Bettendorf Outpatient Clinic to inform her about my emergency room visit and that I was not any better, but worsening. She informed me that my MRI results showed a spot on my lung but I shouldn’t be overly concerned as it’s probably just scar tissue. They also scheduled me to go back to the VA on April 11th for more MRI’s and a CT scan to see what the spot was but still with no urgency as to why my left side was getting worse (when I was in emergency, they didn’t mention anything to me about the spot on my lung).
On Friday, 01 April 11, around noon, everything was really going bad. I called the Bettendorf VA to speak with them as quick as I could as to what to do and was told to have my wife take me back to Iowa City emergency. When my wife got home, I had gotten bad and she was afraid that she could not get me there in time so she made the decision to take me to Trinity emergency a few miles away.
Upon arriving at Trinity emergency in Moline IL (7th street) and getting checked in, Doctor Jones in charge of emergency, instantly requested a CT-scan after he found out that the Iowa VA had not checked or scanned my head after a fall down the stairs head first. We received the results quickly and it was determined I had two active bleeders in my brain causing a great deal of pressure and that it was a very serious matter. Basically I was alive by luck at that time. Dr. Jones immediately called the VA and asked how they wanted to proceed as there was no one available locally that could handle the severity of problems fast enough. Dr. Jones was informed to get me to the University of Iowa by the fastest means possible Life Flight. Everyone tried to find a chopper but they were all in use. It was then decided, instead of waiting any longer, to have me transported by ambulance and taken to the University of Iowa Emergency.
Once I arrived at the University of Iowa emergency, the doctors took over my care and stabilized me and did the research to find out what was going on. At this point, the VA was letting the U of I call the shots. It is in my opinion as well as the opinion of my family, that it is the only reason I am alive today after everything that was missed.
During the discussions with all the university doctors, I also told them that back in the summer of 2008, I had melanoma that had been removed from my back. This lead the doctors to find out through the records that it had been a 3C melanoma so the university also performed a barium CT scan as part of trying to determine exactly what was going on with my body and my brain.
At this time besides the problem of the two large blood clots putting extreme pressure on my brain, the university found out that I also had melanoma in my brain, lung and stomach. The problem that came later with speaking with the cancer doctors is the fact that all standard testing and procedures that are supposed to be done with a C3 melanoma had never been done. The melanoma had been removed and the wound healed but the only procedure after it was just to go to the VA every so often to look for other areas on the skin. I was originally told I had 5-10 years to live and then after the biopsy results came back, they told me to “through that out the window” as my immune system has killed the melanoma and I was cured. Trusting the doctors, I continued on with my. As of 10/4 I have found out that the cancer has grown 20%. At the end of the month my doc's are reviewing the full brain raddiation but also checking for the mutation gene. If the mutation shows up I move on to that. Considering I should of been dead 4 times now but I am still here I count myself ahead of the game. With the love of wife of 27 years we have alays been a team. I never surender and never give up and thats even under my Marine Tatoo.

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

I am ashamed that you did not recieve better care from the VA hospital. I'm not a doctor, but it seems totally obvious to me that after a fall like yours, the very first test should have been an MRI or a CAT to your head.

I thank God that you have a wonderful wife and a fighting attitude. You Marines are tough!!!! Please keep us updated on how you are doing. I'll be praying for you!

Love and blessings,
Cindy in Salem, OR

Posts: 2
Joined: Oct 2011

Thanks for the resonce. I have never know any thing but tofight for my life. And I am also lucky since the Univesity of Iowa Docs are on the same fight looking at all options. And as I fight for it they will fight with me. They even let me kick out a Va doctor that just wanted me to go home with hospis Not hapening. If people aren't positive, stay away from me and my family.

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