Anyone have Chronic Pain after stenting?

[Rod_F]

Hello , my name is Rod,  
I am a 68 yo male.

This long winded, so bear with me.  :)

In Aug 2014 I had a bare metal stent inserted after a 98% blockage of my LAD was discovered.  Within 24 hours I had an unusual sensation over my left pectoral.  It felt like someone gently resting their hand on that area.  Even the weight of the sheet was uncomfortable.  Over the next week I developed a metallic taste in my mouth and heaviness in my arms.  The heaviness subsided but the taste and unusual left pectoral sensation continued.  After a month or so I started getting another sensation like someone had spread their fingers and were poking me in the middle of my chest.  I was told it was anxiety even though I didn't have anxious thoughts and felt quite relaxed.  (I was born with a compromised immune system and have suffered poor health all my life, so to me this was just another challenge to contend with.  I wasn't new to near death experiences as I had been close to death on numerous occasions with severe attacks of asthma since childhood) .  Anyway, the poking sensation continued until I presented at ER in Feb 2015.  I had an angiogram and I had a restenosis, a 95% blockage of the existing stent.  They inserted a drug eluting stent inside the original stent and the poking sensation immediately disappeared.

The sensation of someone/something touching my left pectoral went from mildly annoying to severe pain in my left shoulder and upper left arm, lower jaw.  I felt like I had a heavy weight hanging off my left shoulder and crushing of both my shoulders.  I also had this weird sensation of "not feeling right".  It hard to describe but I had a similar feeling when I had my heart attack.  So effectively I had heart attack symptoms and severe pain 24/7.  It never subsided and after approximately 12 months I started experiencing similar pain across my buttocks and tops of my hamstrings plus numbness in my legs and jaw.  It has now been eight years since my first stent was inserted and I still have the heart attack symptoms and severe shoulder pain and crushing and buttock, leg pain 24/7.  FYI I have since learned the spread of pain to the buttocks and legs is attributed to mapping in the brain.  If pain is persistent, the area in the brain responsible for the pain response becomes over stimulated affecting adjacent areas of the brain that relate to other areas of the body causing pain in those areas as well.

I was on opiates for at least five years.  The dosage was as high as you could go and I got to a point where they were making me worse.  I was on the equivalent of 13 x 5mg Endone a day (I believe it is called Oxycontin in the US) .  I went off the opiates over a two weeks period.  Halved it in the first week and stopped completely after the second week.  The pain was hideous.  On top of my other pain I then had this burning sensation and today twelve months on, I am much the same.  I am on ketamine (which I am trying to get off) and have been trying Low Dose Naltrexone.  Over the stent journey I have had numerous angiograms. stress tests, blood tests, all of which are pretty much normal.  My blood pressure is usually 120/70, and all my ECG tests are negative.  None of the cardiologists I have dealt with can give me a reason as to why this is happening to me.  Because the onset was with the first stent and worsened with the second, it is my belief that because of my compromised immune system, my pain and heart attack systems are a result of my body reacting negatively to the stents.  I ran this by the Cardios and they basically treated me like a fool.  I have tried to explain that for my whole life I have been hyper-sensitive to a whole range of foods and common allergens, petrochemicals, metal, dust, perfumes etc etc.  I even explained that at one stage spent two months in a hospital unit that was a chemical, dust free bubble where I tested for food and chemical intolerances (many of which I failed).  They fob me off because I guess I don't meet the criteria of a standard patient.

I warned you this was long winded!  So my question is, IS there anyone out there that is having or had chronic pain issues post stenting? (years not months)  If so, how do you deal with or have you dealt with it?  or anyone have an explanation?

thanks

[Sculptr2]

Hi Rod.  I just came across your post while I was searching for cardiac catheterization info - I am like you.  Allergic to the world. I'm so sorry that you are encountering such unfeeling physicians.  I know your pain.  Unfortunately I can't answer your question because I'm still trying to figure out if I'm going to let them do the catheterization.  So many things make us worse, and what you're going through is unacceptable.

I hope that you have found an answer somewhere.  I'm interested in keeping touch with you if you are willing.

Best wishes, Michele

[Rod_F]

Hi, Michele.  Just found your message in my inbox. I doubt if I will ever get an answer.  I put it down to a defective immune system and some sort of auto-immune issue that is yet to be diagnosed.  More than happy to keep in touch. email ***@****.  I may not respond right away, but I respond.