I'm writing a thank you letter to my doctor..... I want to avoid saying anything negative, but I struggle to find positive things to say. As a disabled man you can imagine life wasn't easy. Coming from a dysfunctional family wasn't easy either. How do I thank him for saving my life when I don't value it? I can name plenty of negative life experiences but I'd rather not. I could grab one of my older posts from another forum if I cared to do that. I have been told by my mom I'm the first child in the USA to have a adjustable medos valve shunt put in them. As nice of a conversation topic that might be it's not something that ever helped me to make friends in school because I never knew. I want to know if it's really true. if my surgery was something significant to him and his career, or to medical science in general. Was I an experiment? Was there a chance I could have died on the operating table? and why did it have to wait until I was four years old for them to recognize I had a neurological issue? I know nothing about my surgery. Now I want to know everything. I have my medical records but they don't answer the questions I have. Point blank my question is this...... Does my life have any meaning at all? Did the surgery that was done on me play any part in the further development of the shunt?
1/ Googling adjustable medos valve shunt led me to a 2005 paper which states "Over the past 30 years, magnetically adjustable valves have become widely accepted and routinely implanted devices". I'd suggest that your operation wasn't totally experimental. (My wife had an episode a couple of years ago; whilst discussing its rarity with her specialist, she joked that he could write a paper about it. His response was "No, there have already been 19 documented cases.") 2/ Few operations are without risk - probably as few as zero. But many routine operations have a negligible risk - scant comfort if you're that one in a million unlucky sods! Yes, there probably was a material risk (I'm guessing, perhaps as high as 1 chance in 4) with a surgery that wasn't routinely performed...while the operation MAY have been commonplace in adults, a child would pose additional complications. 3/ Why did it wait until you were 4 for them to recognize a neurological condition? Probably because it took that long before your development stepped outside the boundaries of variability in what is normal. (My daughter was consistently 10% below the LOWEST figures on the expected height/weight charts for her age. The only thing that stopped them doing something was that she was perfectly in proportion, just tiny; and, it turned out, a slow grower. She's now adult and small, but not tiny.) 4/ Was it an experiment? Not really, in the sense of being a lab rat. But every operation that is at all pioneering - and the first child in the US would be pioneering, at least for that surgical team - leads to lessons that can be learned and improvements in healthcare that can be made. You say you're writing a thank you letter...at age 29 for an operation that you had when you were 4? The tone of your post suggests that you won't come across as really grateful?
Does your doctor still have an active practice? Since it sounds as if you have a lot of questions, maybe you should arrange to see him to get the answers face-to-face? Failing that, see if there is some other medical person out there who can answer your questions. Obviously the doctors can't be held responsible for your dysfunctional family, or how you may feel about your life at the moment. However, they will probably appreciate hearing from you, and maybe explaining their reasons for doing what they did at the time. Obviously they will be afraid of lawsuits, so that might prevent them from saying very much, but you won't get a written response that will be any more forthcoming. You can only try. Your own feelings sound as if they aren't very positive. Do you feel you might be depressed? The kind of depression you might be able to be treated for? If so, you might want to pursue that, in addition to asking the questions about your previous treatment. After all, it's not the past that can change, it's the present and the future. When it comes to the questions, do you feel you should not have had the surgery at all? Or you're wondering if you'd had it sooner, if it would have made any difference? If you're the first child in the USA to have had this procedure done, chances are they would not have been able to do it sooner. However, you're entitled to ask questions. It doesn't sound to me as if a 'thank you' letter is exactly what you should be writing, at least not till you have some answers. I'd say get to grips with exactly what you want the doctor to do for you now, and then go ahead and see if you can get him to do it. I feel you're entitled to ask the questions you're asking, as long as you don't blame the doctor for things that aren't his fault. And no doctor in the world is going to refuse to do surgery on a four-year-old child because the patient might not find meaning in their life later on. They will be doing what they think is best at the time. All the best to you now, in your search. Just see if you can articulate what it is you're searching for. The past isn't going to change. What would help you in the present? Try to focus on that, if you can.
Do you want to write a thank-you letter, or just request information about your medical care? Like the others, I'm not feeling a lot of thankfulness in your post, so maybe the latter? You don't need an excuse to ask for medical information. Your body, your information - I'm not sure where you live, but I don't think there are many modern countries where your doctors wouldn't be required to share your file with you. You could start with a simple request, and get more forceful if needed (not that it likely will be). There are patients-rights groups in a lot of places that could probably help you out if you want to discuss options.
Considering that you were the first child in the USA to have that procedure, yes I'm sure that was a very significant occasion. It hadn't happened prior to that surgery you had. As far as experiments go, I sincerely doubt they were all, "Let's give this four-year-old kid adjustable medos valve shunts and see what happens!" More than likely they did what they thought was best for you at the time and unless they wanted to risk a hefty lawsuit and angry parents, they wouldn't dare refuse to do the operation. As for the neurological issue, sometimes it takes a while for the symptoms to show. They may have been focused on other aspects of your health that they didn't notice the neurological part. Now, my opinion is that perhaps instead of a thank-you letter, you conduct an interview? It seems as thought you want information, so an interview would be best. @jannert said it best: see if you can't contact him, or someone who works in the field.
Thank you everyone for the responses. I have completed the letter and I'm going to post it in a different topic to get more responses. After I get some feedback I don't care what happens to both of these topics. If they are in the way delete them. I don't want to flood this section with a new topic every day.
