Ok, got call from pain management doctor and then had someone cancel for a stimulator and I could step in their place. So I got the trial unit installed, two leads go into the med part of my spine and actual unit fits around my waste and has the two leads attach to the unit with usb ports. I have remote unit that has three programs each has eight levels of intensity. I started at what the company rep told me the most commonly effective program, power level 5. Thru the first three days so far the company rep calls and asks how I am doing and, as it has gone so far, each day is ineffective, we have adjusted up the power. I have to take my pain meds (nucynta, 50 mg, with gabapintin, 300mg) by four o’clock each day. My pain management doctor tells me almost everyone knows if the unit is going to be effective in the first three days. I am on my fourth day now, and no help at all, When you sign the form, they state they are going for a 50 to 75% decrease in pain, but when they talk to you informally they tell you stories of ex-nurses, sceptical types who felt 90% reductions in their pain. You never have enough time to ask them all the specifics. Anyway, the rep tells you on the third day that the other programs are for if the leads move somehow and they need to change the ‘focus’ of the current. So this explains why the doctor says the unit works in three days, he thinks he will locate it correctly. I don’t know what my chances are a this point, I guess that is the wrong question and I would continue on hoping that the unit works. I am getting to the point where I just going to have to turn to less objective forms heeling and to mediation, supplements and alike.
October 4, 2015
I am being treated for peripherial neropathy now by my pain management doctor. I believe the nerve pain is a result of the surgeries (3) my heel/Achilles. I was wondering if anyone else out there had these issues, and, of course, what you did about it. A therapist I see recently pointed me at this treatment: Therapeutic Nervoscience Treatment: http://www.optp.com/Therapeutic-Neuroscience-Education-Teaching-Patients-About-Pain-A-Guide-for-Clinicians#.VfqL7PlViko. The basic idea here is that your injury is healed and you are over your tissue damage so you need to think and more importantly feel that your injury is the result of overactive and oversensitive nervous system: from your injury site to your brain and you need to retrain yourself to deal with it differently. Has anyone tried this? This site is really disappointing me because I am getting no response to my postings anymore. I wonder if anyone is out there anymore. Thanks.
September 17, 2015
Well I am entering the month that will include my one year anniversary to my last surgery; the surgery of which the surgeon said, “this was simple and so will take less time to get over.” Much to his puzzlement, I still walk only with the aid of Nucynta and Gabapintine. The pain doctors have placed me on this routine and, you know, I thank them, because those are the best hours, besides sleeping, that I have. I take my meds first thing in the morning and scooter off to work, and while on the distracting scooter ride, I love the scooter and am quite sure I would love the ride even if I knew it would end in my death, they take their desired affect, so when I get to work, I feel serviceable. It is on the weekends that I am having difficulties, because I have more time and I feel the hangover of the meds and so don’t want to juice up again. Of course when I respond this way, my heel is laying in wait, and springs into action with its cries of ‘listen to me’, ‘I have been ignored’ pain. Any how it is now the weekend, so you know how I feel, and I am imagining that I know how you feel, or at least many of you (because I have read your posts); hopeful as you are in your every increasing mobility and strength. So I just felt the need to remind you, to be patient and, if possible, enjoy your recovery, because some of us are not. I no doubt know, rationally, that irrationally this sour attitude does not help in it, but this has been a hard and painful four years, and, still like a child, I want it to come to a recuperative end, but always seem to be asking myself, “why am I not getting better like all those other fortunate folks?”
August 29, 2015
Well, the nortriptyline appears to not be working so I will be asking my pain management doctor if we can look into the stimulator. It seems only the narcotics (Nucynta) provide some relief. See how that works. Probably retiring from work and take early retirement, sell the house and move into a less expensive place.
July 14, 2015
Here is a great explanation of the nerve pain I am experiencing post surgery. https://www.youtube.com/watch?v=v8CP-rfqp0s, I have nerve pain on both sides of the right heel but no more pain in the tendon itself. So I traded Achilles tendon repair for CRPS on both sides. Not a good trade. Nerve pain was a result of the surgery.
June 14, 2015
This week the numbness which only use to occur occassionally in the ball of my right foot is present virtually all the time and it is extending into all my toes. I called my pain doctor and got his nurse and she says she does not think it is anything to be concerned about; however, that is hard to believe as now my foot is just numb when I walk about. I still have full motor control but I worry if that will be effected by this trend.
June 9, 2015
Went and saw another orthopedic doctor, Dr.Patel. He was not my surgeon on any of my three Achilles/heel surgures, but he impressed he with how creative he was when consulted. For example, early on in this process, he suggested the Platelet injection. He was not overly optimistic but to the point in dealing with CRPS. He does not put hardly any confidence in the stimulator and challenged me to challenge Dr. Sayed to refer me to any successfully treated patients for what I have. So I thought I would call Sayed’s office and see if I can get that. Rather Patel wants to get another MRI to make sure we don’t have any physical issues with the tendon and also do an EMG on the nerves to see if we can pin point any nerve issues that we might be able to correct. He likened this CRPS to a pinched nerve. So I have appointments to do that. I am trying to run both tracks now: Sayed’s stimulator and Patel’s discovery. And, of course, keeping up the narcotics that Dr. Lee, and Dr. Morgan think I should continue. However, using the narcotics is not easy and I am afraid trying to balance that every day correctly and working at my job (programmer) will be undoable. If I do too much pain killers, I am unfocused and foggy; if I don’t do enough, I have constant, distracting pain. Plus I am nauseous most mornings, I feel like I have a mini hangover, and I have what can only be described as hallucinogenic dreams every night if I take the pain med. I am taking Nucynta, by the way; 3 or 4 times a day. It is hard.
June 2, 2015
Well, I got one pain management doctor suggesting a stimulator for my back and another not suggesting it. So since there is a trial, I guess I will try it out and see what happens. If it does not work, then that is the way it will be. If the trial does, then I have to decide if I want to make it premanent. Anybody else see it differently? Always open to suggestions and advice. What do I do if I got without the stimulator, more opiads and just mix and match them till, and if, I don’t need them anymore.
May 21, 2015
Still taking daily narcotics to reduce pain. Wondering what options I have to get over CRPS. Had to take Oxycodin today to get rid of burning pain today. Taking Nucynta every four hours; thinking maybe if I stop taking Gabapentin I will not be so nausous in the morning. Does anyone have experience with TINS, Kematine treatment, surgical neuropathy? If pain does not get better I will either be quitting work or they will fire me. I get sited for unprofessional behavior like I texted by boss that I felt like shit in the morning and had to be stoned the rest of the day to feel good. Even though it was just to her phone that was considered unprofessional. We talk worse than that everyday but I can only guess that she wants me join. I can’t blame her. I am unproductive and always missing days due to pain.
May 9, 2015
Got a second opinion today from another doctor, not a pain management doctor, but someone who sees a lot of patients with pain issues, and she concurs with the pain doc that it sounds like CRPS. She says my only reasonable option is to manage it with pain meds. Just went on a 4 am ’stroll’ -1/2 mile. I sit here writing with the burning and throbbing pain of CRPS. I am so angry. Folks on this site talk about being driven crazy not being able to run for months or years. I understand that. I am just plain unhappy. I hate my doctors for a) causing this and b) not telling me what this is. I had to figure it out on my own. Ass-holes!
April 29, 2015