I took what you said about dictating my care to heart and gave the pain specialist “university” approach a try. I have to admit I feel somewhat let down. I was told that three blocks would be done, and only two were done. I feel like Dr. T id the same as the pain specialist from Kaiser and abandoned the diagnostic direction and changed the course that we had all agreed upon. I was under the impression that we would block al three sections before moving forward. When two were blocked yesterday and it did not resolve the issue Dr. T referred the block over to you in a very vauge manner. He had a patient on the table and I was not able to get a full understanding of what he was planning or where we were going.

Both myself and the nurse attempted to contact you and Dr. Kroop about what the next step for my care would be. I have been in this hospital room for seven days now and this ordeal has been dragged out for months now. When you left the other day I was optimistic that we were all going to work together as a team to solve this issue. I feel that once the pain specialist got involved, as happened in the past, this team of ideas began to break down. It appears that Dr. T has taken control over the direction of my care and write now the incoherence of this letter is due to the fact that I am in the worst pain I have been in since my arrival here and the worst pain I have been in for some time. I am feeling once again abandoned by the doctors when the slam dunk nerve block didn’t work. I am not sure if there is something wrong with me as a person and if there is a perception that I am exaggerating this problem of my I am not sure if I am fulfilling a profile because of answering the questions incorrectly. I do know that I feel like once again I am left with no more options and the hype and promises of fixing my pain is just that, hype.

I feel foolish now thinking that this was all going to work out. I boasted on how you told me that if you could not figure out this then the world is a big place and you would help me find someone that could. That was the last I have heard from you. I understand that you were out of town and you would not be getting back until today. Dr. Kroop was ready to release me based upon your notes and ready to turn my care over as an out patient to Dr. T. I am hoping that the pain is cloading my perception right now and that this is a communication hiccup.

From my point of view I see yet another path not fully followed through with no clear explanation to why. The heart of the bitterness right now is that I am here in a great deal of pain after being hooked up to th TENS device. The pain is so bad right now I cannot speak. I am frantically doing whatever I can do to take my mind of this pain. I feel that I need to write down what I am feeling and going through because these are the moments that are never seen by the doctor. These are the moments in which I feel abandoned and them moments that make me not trust the pain management route. It wasn’t until I was done with the Physical Therapist before I realized I had been duped into doing something that I have been trying to avoid. You convinced me to let down my guard and to trust the doctors here and that these doctors were looking out for my best interest. Once again I feel like another test subject not a patient.

I found out later that the electro stimulation was not a course of treatment that was agreed upon by anyone outside of Dr. T. When the PT removed the patches I asked him if the elctro stimulation would penetrate any nerve entrapment or scar tissue. His answer was vauge and I had the impression that it was not. Dr. T was pushing the TENS and I feel that he pushed it on me without consulting Dr. Kroop first and am not sure if he contacted you or Dr. F about it. In doing my research today I found that though TENS has been around for some time, it is a new approach to pain management and to symptoms similar to mine, but not mine. This is why I was so gaurded about the pain specialist and their course of treatment.

I honestly feel like I was duped into this course of treatment and the only person that gave me any information on it was my nurse Megan.

I was told that I would be well informed about any treatment and that any treatment options would be discussed between all the doctors envolved and to have a physical therapist read my history, do a short evaluation, and try this treatment on me before we were able to follow the path that we all agreed upon I feel a bit betrayed.

I know this letter is one side and from what I gathered when meeting you I do not want to fill in the blanks without talking to you. I know enough about myself to know that sometimes I get nervous and around doctors and they have disappeared before I could ask all the questions I want.

When I got here I had the feeling that the doctors knew that this was not something I was making up, and that there was something really wrong here. I got the same feeling when I first went to Kaiser. Now I have the feeling that the opinion that this is real is in question and that some how I am doing something to cause the doctors to give up. I know that I am not explaining everything right, because if I were then I would not get this abandonment feeling from the doctors that treat me.

I know I use the word abandon often, and I am sure that someone might think I should talk to a psychologist, but I know I am not crazy and I know this is real and this pain has brought my life to a halt and I just want to get better. I feel lost and I feel like if I stand up for myself and protest treatments like TENS then I will loose this set of doctors too and have to start again.

I have been dealing with this issue for 10 months, I spent 8 weeks on medical leave only to be dicked around by the doctor’s of Kaiser. I came here for a 24 hour hospitalal stay so the needed tests and doctors could be consulted. I have been here for 7 days and have no clear idea when this will be over. I have put my life on hold, my job in limbo, I am spending my last dime on co-pays. When we last talked I felt that you had the best idea of where the problem was and that you were the best hope of fixing it. I feel like I listened to what Dr. T had to say and I trusted him with the nerve blocks. Then I feel like I have been blind sided with the TENS treatment and am horrified that Dr. Kroop might think that Dr. T is write and we should continue with his course of care.

Right now I am in unimaginable pain. I can get my fingers to type and as long as my mind focuses on what they are doing I can cope with the situation. I don’t know where my doctors are. I don’t know what my status of care is. I am in a dark room and cut off. I am afraid to move and the feeling of hope and that this will be resolved is all but vanished. I feel like I am back at the beginning. I feel that there truly is no hope for me and that my resolution is tolerating this pain. Even  that I can live with, but what I can’t live with is being in this dark room, hoping that any minute the nurse will come through the door with a message from the doctor. I have given up that a doctor will come in to talk to me, to ask me what went wrong, and to figure out what to do next so I have something more to look forward that this impending doom. If my only option is the route of TENS, and if you and the other doctors have given up, I wish you could let me know now so I can leave this place. Given the rate of increase over the last 10 months of this pain, and the amount of my strength that has been depleted, I truly feel like this is the end of the line and the more I write and the long this letter gets the less hope that someone is going to come through that door and save me becomes.

When I say save me, not fixing me right away or waving a magical wand, but to tell me what to expect tomorrow, to let me know where we are at, what are the results of the test, did Dr. Kroop get a hold of you , are we going to do the final nerve block. The only thing I know is that the PT is coming back to try again. Please understand why I would sooner die than allow that thing to go on me again.

I hope that this is the pain talking and I pray that this isn’t really happening and that you would set me straight and tell me that this is not the end of the line. But nobody is calling. Nobody is coming through that door. Once again, I resign myself to defeat.

I no longer trust doctors when they say they will follow through. I wasted more time and money, risked my job and gone through hell just to have the doctors give up without finishing what they promised to do. I guess you can sympathize a little more to why I acted the way I did in the beginning and why I was reluctant to trust the pain specialist, and why next time I should dictate my care, at least I have a vested interest in following through.

Vincent Clark

The first, go over the edge. This show has to end sometime, ever act gets pulled. I have no doubt in my mind that I cannot live my life like this. This is not a pain that I want controlled by mind numbing pain killers.

After my last nerve injection my doctor extended my leave by a week, then told me that I should talk to the long term disability service and then doubled my pain medication. Nothing says, “I give up” quite like that.

I have put up with a lot of crap from doctors in my life. I wonder what I would have been like if the doctors did not mess up as they did. I first went to the medical clinic at Chico State with a lump in my testicle since mid August 1997. Despite not having sex for close to a year I was treated for Chlamydia for three and a half weeks. Two types of oral antibiotics and three injections of very powerful antibiotics, but this STD I knew I didn’t have didn’t go away. I think this is because it wasn’t an STD. Though the not having sex should have been the first sign, the second sign is the lump was near but not on the epididymis.

After weeks in pain, I was referred to a urologist. If the pain was not so severe there is no way I would have gone to one. Only a year prior during an examination by a urologist certain things occurred that prompted me to file a police report for sexual abuse against the doctor. The officer that took the report as well as several advocates wanted to see this guy fry. Unfortunately the detective didn’t even interview the doctor and told me that if you go to a urologist you have to expect things like that to happen. I know very clearly where the line is, and I know it was crossed.

After abandoning my speech scholarship, dropping out of school, and splitting up with my fiance I was finally getting my life back together. I knew that if it weren’t for the pain I would have rather died that go to see the urologist. It took me almost a month of scoping out a nurse practitioners and doctors to find one that I trusted enough to tell them about my testicular pain. I never really blamed the nurse practitioner for not uncovering the obvious tumor as much as I did the people that trained him and the complete lack of education about testicular cancer. Chico State had a full site on breast cancer. The in depth information on a cancer that would not affect the female population for another 20 – 40 years dwarfed the single page that dealt with the most common type of cancer among college males.

I thought about suing the school and was approached by a couple lawyers, but I knew where that money to pay me off would come from. Classes such as ballroom dance would be cut and the ability to have lectures such as She-mo Perez and Ice-Tea would be lost. I could not do that to my classmates, so I did the next best thing, I raised awareness. I openly talked about my experience. When I gave a presentation or speech I can tell that this was my way of correcting the injustice, not by taking money away from the school.

The doctor that discovered the cancer was a surgeon. I was 22 and things were happening very fast. I was 500 miles away from my family doctors and decisions had to be made quickly. The doctor advocated the second surgery and the option to have chemo was never entertained until the second tumor was found. I lost the ability to conceive a child naturally and eleven years later I am still feeling the after effects of an unskilled surgeon gutting my insides. I probably could have got a settlement from his malpractice insurance, but there was no way I was going to sue the man that save my life.

The string of misdiagnosis and neglect from insurance companies and lazy doctors did not end there. After having chronic back pain a degenerative disk was found and my vertebrae was beginning to herniate. The neurologist said that surgery would help it, but that is a last ditch no where to turn measure. I knew how sensitive the nerves in that area are and it wasn’t a risk I was willing to take just yet.

The doctor gave me some muscle relaxers, physical therapy, and told me to see him again in three months. As a cost cutting measure I was not approved to follow up with the neurologist that ordered the MRI that spoted the bulging disk, but I was referred to pain management. I have always has this mystery problem with my neck the doctors could never figure out. Doing the type of exercises PT required caused great pain in my neck. The doctor then ordered a lumbar injection. The following days after the injection were a nightmare. Jen had to take me to the emergency room it was so severe.

As it turns out, the doctor order the injection without first view an MRI and apparently gave the injection in the wrong location. This most likely had nothing to do with my pain, but the fact that the doctor did that made me skeptical about pain management.

When the pain in my side went critical at the start of the year Jen certain things had happened that made Jen urge me to use her insurance. At first, as with any courting, it looked like Kaiser had their practice down, and they were going to find out what was wrong with me.

The referred me to a fertility specialist that thought it might be cancer so an oncologist had to rule it out. I was then sent to the pain clinic. There the ambitious doctor proposed a series of nerve blocks for a differential, however, as time went on I began to suspect that 6 weeks between appointments and nerve blocks is not how a differential should be done.

I could write more of the same, but I am not going to. Twenty four hours after my nerve block I have been in critical pain, I spent all day on the couch, moving was torture. Jen tried all day to get a hold of my doctor, who was out of the office. The pharmacist doctor finally returned her call at 4:30. This was after I spent an hour trying to get a hold of my GP or someone in his office. The advice nurse gave her useual advice, go to the emergency room. I told her that I would go if it was life treating, but I am not going to put myself through hell to get a quick injection and sent on my way.

Today I was pushed to the edge, and I admit, jumping crossed my mind like a marquee. Unfortunately, that is not my style. Tomorrow, I am going to start to push back. I know when I get better, there will be a lot these doctors and this system needs to answer for. This isn’t a cost issue, but laziness of doctors that do not want to be burdened with googling RLND to see what kind of surgery their patient had, the very surgery they figured caused the pain in the first place.

I am angry. I know I am not the only one. That makes me even more angry.