Update October 28th

Monday, went through the most painful and invasive nerve conduction tests ever. I had minor ones before, but nothing like this. I was on the table for over 1 1/2 hours. They did my lower right leg, right and left hand, and my entire left side from hip to ankles.

The first test did 100% of the electrical jolt portion of the tests. It was all I could do not to jump off the table. I gave up counting in my head at 100 jolts. She seemed concerned with the test results printing off, so she said the doctor would have to come in.

Due to some mistake she had made from start, the doctor apologized and said that entire part of the test had to be re-done. I was besides myself, laying the entire time on a metal "cot", looked like the kind they put bodies on in a morgue. I was freezing cold, no blankets available, wearing only disposable paper boxers and a thin paper gown that only covered the front of my chest, with a disposable pillow (very flat) to rest my head on. Much of the time I was flat on my back, which kills my joints on a normal basis.

So the doctor re-did all the electrical jolts. The worse were ones done behind my knees, never felt such pain. Then he said we were only half way through with the tests.

Part 2 was the doctor sticking a total of 15 long needles into various muscles. Mostly on the left side. Some didn't hurt bad going in, but with some of the leg muscles behind the back of my leg, felt like I was being stabbed, real burning piercing pain. He then took electrical readings off the needles.

He told me he knew it seemed to be a primitive way of testing, but was still the neurologists best way of finding out what was going on with nerve damage and muscle damage.

Due to the time it takes to process the data points, I won't know the results until mid-November, the week after I get back from our Bermuda cruise. Always a sword hanging over my head.

Wednesday, met my PTSD therapist, and it was a rough emotional session, re-living some of the trauma starting back when I was 4 years old. Talk about poking around at wounds and scabs. We were only able to cover up until I was 18, so Part II is next week.

Thursday, met with the other VA mental health team on the Double Depression stuff. They are disappointed that so far, none of the meds are making any difference. If anything, they are making me feel more anxious and agitated. So for now, they upped the meds. I was warned that Double Depression patients can be hard to treat with meds alone. They are going to meet with me the day before the cruise, to make sure I am ok enough. If it were up to them, I wouldn't be making the trip at this juncture in my treatment.

Next Tuesday, for my new oncologist, having all the scans done in one long session. A full body bone scan, CT of my lungs and chest, and a new contrasted MRI of my entire pelvic bed and hips.

Trying to have a peaceful time, wife and youngest son went to Charleston Friday - Sunday to visit our daughter. Right now, in a lot of pain, and trying to chill out. Hoping weekend football games will keep me distracted from thinking too much. Go Clemson Tigers, and of course, go Patriots. Been a Pat's fan since 1970, and a Red Sox fan since 1968. Clemson is our local college team, where my oldest got his engineering degree from. Believe they are ranked 4th in the nation. I live about 20 miles from Clemson.

All for now. Still soldiering on, one fight at the time

David –

Out of curiosity I googled the term you use for what you experienced ("nerve conduction test") and came up with "electromyography." Was that it?

Following up, I pretty soon came across some personal accounts of having this test. Some of the things that people who had it were saying:

"… it was like torture, like pulling finger nails out."

" … my body was practically jumping to the roof."

"… like a jack hammer going off in my head."

" … I was screaming, tears running down my face and he stopped it saying if I wasn't going to cooperate we wouldn't get the right result."

"… the leaflet given at the booking stage mentions a slight tingling, clearly a big understatement. My doctor when discussing the experience, was of the opinion that the leaflet has to understate the shocks in order to reassure the patients, many of whom would not turn up if they knew the true situation."

But then I actually found a few commentators who claimed the experience was "… tolerable." Well, maybe for them, but I certainly found a good number who most definitely felt otherwise!

Or is feeling the pain supposed to be part of the test? ("Tell me, sir, does this hurt? Yes, doctor, it hurts!").

It really does seem like there ought to be a better way to do it. Surely there should be grants out here to fund studies to find ways to make such procedures more humane.

My sympathies for having to endure such a thing!

Jim, once I make it to the ship, I will probably be ok. It's the 4 hour plus drive to the terminal that is the ordeal for me. I remember VP-8, I spent most of my Navy time in VP-17 and our sister squadron VP-50. We will be in port in Bermuda for 2 1/2 days, should be plenty of time to see much of such a small island.

81, the descriptions you posted were right on target. It was the most in-humane and invasive test I have ever endured. I wanted to abort many times during it, but held tough, as I desperately need the results. What made it worse, the doctor thought he was doing me a favor by endlessly telling lame jokes - ones that you could tell he had told a thousand times, I guess to distract me. I finally told him to stop, as I would rather handle the pain and fear on my own in my own way. Some of the jolts were minor tingling, some nerves, damaged ones - didn't respond at all, but the big ones given in really sensitive areas - hurt like holy hell. The worse part was the fact that he had to re-do all the zaps the technician screwed up doing, so its like I had to go through it twice. The needles were all painful, and I am not remotely shy of needles, but getting zapped via a needle is a different animal. Yet I survived to fight another day. 5 days later, I still have severe leg pains from some of the needle insertions

trail guy, My PTSD is a strange combo, finding out childhood abuse from age 4-18, then morphed into physical abuse in the service, that morphed into intense medical trauma and spending the past 6 1/2 years with severe chronic pain. As my therapist says, I have never had a break, and I associated all pain with fear, and all fear with pain, a vicious catch 22. Add in extreme poor sleep abilities combined with horrific nightmares if I do sleep, and its easy to see where my mind finally broke down and caught up with my broken body. It's not going to be an easy fix, but I am working hard at this newest attempt to "save" myself, from myself. If I really listened to my inner voice, I wouldn't still be here to post.
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This will sound like utter nuts to anyone reading this, but since I have been so open and shared so much, I will continue. If what I write either bothers some one, or if it makes any one run from me, so be it.

A few weeks ago, I noticed late at night, that I was hearing morse code out of my left ear, took me a while to figure out what was going on. Thought it was the tv, or the constant ringing in my ears (all my life), but it wasn't. It was clearly old fashioned morse code.

I know that sounds funny. It's always the same pattern, dot dot dash dash dash, then dash dash dash dot dot, which translates to 2/8. The significant of 2/8? Being having repetitive nightmares that tell me that I will die a painful death on 2/8/2017.

Of course, I realize that it can't be real, but its becoming very convincing regardless. Yes, my doctors are well aware of what they consider auditory hallucinations.

Until this happened, I hadn't even thought about morse code in over 40 years. It just keeps repeating the same pattern over and over and over.

Another reason not to take advice from me, lol.

David, I am sorry that the pain is continuing and the tests have been so painful. There has to be a break somewhere, some time. It must also be nerve wracking getting a new physician and having to go through all the details again. My heart goes out to you and Ron & I think of you often. Waiting for the results from testing is just awful. Then having that testing being done twice. NOT FAIR!

I hope you will be able to unwind and enjoy your trip. It will be good to get away! I would never say anything negative about the morse code vibes. There is much "out there" that we just don't know. I have told you that I have felt my Mom's presence even though she passed on 18 years ago. She still worries about me.

Ron and I continue to pray for you. He hopes there will be relief for you. Maybe something a doctor hasn't tried yet? His pain is being controlled with pain pills. Sometimes he would rather be left alone with just his sports. His teams are Ohio State and Green Bay Packers. We are also watching the World Series. Take care, my friend!

Dave, if ever I knew anyone who deserved a break it is you. I hope your boat trip is relaxing and provides some diversion from the woes of cancer treatment.

Don

This guy makes a total of 4 neurologists I have been subject to over recent years. I am beginning to honestly believe that all of them just guess at a dx.

I have to wait till the week I return from the cruise before I even get to see the results.

Always have a sword hanging over my head, and people wonder why I am nuts?
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Been having those strange olfactory hallucinations on again off again for nearly 16 years, until a week ago, they were always a strong toxic acid type smell. Recently, I now get them that smell just like cheaply made pancake syrup. Fills the air, an entire room, its all I can smell or sense. This evening, I had the older toxic smell first, then minutes later, the sweet smell. None of this makes any sense. I know they aren't real, but my nose and head would differ on that point.

David, I was intrigued by your mention of the Morse code "transmission." I got into ham radio when I was 12 and still consider Morse Code a second language. It's a shame to see how its usage has declined.

I was watching an old TV western re-run the other day....might have been either "Gunsmoke" or "Wanted Dead or Alive." A telegraph operator was explaining that he could recognize each fellow operator's "fist": the individual way in which each person sends Morse Code. I used to get home from school, turn on the receiver, and I could immediately recognize a ham friend of mine in Louisville, just by the way he used the key: his "fist."

I hope you don't make too much of this auditory hallucination, or whatever it is. Here are some other associations with #28: https://en.wikipedia.org/wiki/28_(number)

I am not a fan of pain David, so terribly concerned about what you had to go through. Hope it at least provides some answers.

Otherwise I hope you enjoy the trip to Bermuda. I always fancied a visit, as my mum's father was stationed there for about two years before the first world war when he was a serjeant major in the Bedford Regiment, though while on the islands he actually served as the acting engineering officer helping to organise the rebuilding of one of the lighthouses, and as the acting education officer teaching the junior ranks and also teaching the children of the soldiers (in those days families still travelled with the troops when they were posted overseas.)

Bon Voyage

Alf

Hello David,

So sorry you had to go through all the testing! On a positive note, have a great time on your trip to Bermuda.

I always have you in my daily prayers! Fight, Fight, Fight.

Dave in Bartlett, TN

David dreams often exaggerate and will use symbolism and thus the dreaming of death might not mean death, but you could also go into panic over the dream and thus fear it so much that you could cause it to happen out of fright. I believe it is frightening you and you might want to google what death dreams symbolise, sometimes it means something entirely different might mean your going to be a grandpa.....not sure what else might help I know you have these scary dreams for awhile now...but you should not put much faith into a dream...hope this helps

David--I'm sorry to read that they keep unnecessarily torturing you with multiple, repeat, painful nerve tests. Your remark about childhood abuse helps to make sense out many of your posts for the past 8 years. No child should be abused. Ever. (For purposes of full disclosure, I had a very happy childhood without abuse, which has led to a relatively happy adulthood, despite the usual ups and downs.) If you panic on board ship, there is a doctor available.
I hope your treatment at the VA is successful.

Perg - I am new but have read your posts for a few years now. I think you are a successful, loving and courageous guy who displays an amazing heart and character. -Ken

Yes David, going to see Radiation Oncologist Thursday. Looks like my turn to step up to the plate and take a swing at this thing.

Regarding your pain. This may be off the wall, but I have used proteolytic enzymes for pain in numerous settings. Used for decades in Europe. Have to take for days/weeks, not really a one of type thing. I know it's a bit off the normal path and I am far from being an expert... thought I would share.

Ken