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Monday October 13: so it has been a little while since I have written about my situation here. At the present I am not having any difficulties outside of what I have already written about here. I am still having urinary frequency and some urinary incontinence. I deal with it every day as do all of you here. I am fairly lucky in that my incontinence is fairly light and can be managed most days with the pull-up and pad. I still prefer a regular diaper for the security that it provides me, some of this is mental as well as physical security. As you all know if you have something that provides you with security then you go with it even if it is a little bit of overkill. So my latest developments in the last week and a half or so I have had several doctors appointments and some interesting things have come from them. First off I had an appointment with my primary care doctor, and the best that he could come up with was that after an exhaustive work and he could not find anything wrong with me nor could the other seven doctors that I had seen up until that point. What the primary care doctor thought was that I had some kind of a mental issue. He suggested a somatoform disorder you may be interested to read about it online as I was when he told me about it. Somebody that has a somatoform disorder has all the physical symptoms of a medical problem without actually having the medical problem, very interesting stuff. He thinks that the somatoform disorder is the body's response to stress in which the body manifests with physical symptoms that cannot be medically linked to a known diagnosis of any particular condition. In my case the urinary symptoms are the medical symptoms that I'm experiencing but cannot be linked to any particular urinary condition definitively. So in essence, it is a very nice way of saying that it is all in your head and there is nothing wrong with you. The fact is, I am still having problems and I am still experiencing conditions. I am wearing diapers 24/7 and still using catheters as needed. So even if they can't find a definitive medical condition I still have symptoms and they are causing problems with my daily living. I am also experiencing erectile dysfunction and, not all the time but enough that that has caused some distress in my relationship with my wife. That is extremely distressing as I am only 33 years old and should not be having problems of that nature at this point in my life.
So I came home from the primary care doctor and was ready to hang it up and accept that I had a somatoform disorder and that it was all in my head knowing that I am still experiencing symptoms. Well, my wife would not hear of it. She did not believe that that was it, as much as I read many things I experienced did not fit the perfect mold of a somatoform disorder but a lot of things were similar in that people have symptoms, the symptoms are real and this happens to people with anxiety issues. But, this only is diagnosed in like .2% of males???a very small percentage. Many people who experience somatoform disorders are female. One of the criteria for a diagnosis is that the symptoms must have started prior to age 30, my symptoms did not start until I was 32, so there are a bunch of things that just don't seem to fit the mold but then there was a lot of things that did fit the mold. The more I read, the more I saw that they all treatment for this was with a psychologist. There is no treatment for the physical symptoms as many of the symptoms are chronic in nature most of that made sense to me. I was ready to accept that this is my condition and just live with it.
Several days after that appointment I had an appointment with Dr. #9 who is an interventional radiologist at Lahey clinic in Burlington Massachusetts. I was referred to him by the neurologist who ordered the MRIs done and had reviewed them with me after the completion of the four MRIs that I had in August. The neurologist had told me after reviewing the MRIs but he hadn't seen much on the MRIs that jumped out at him and he could not find a definitive cause for the symptoms that I was experiencing. He was very nice but told me that this was pretty much the end of the road for he and I as he could find no neurological explanation for what was going on with me.
When we got to Lahey clinic they looked at the MRIs that had been done in August. They studied them for about 10 minutes before they called my wife and I into the doctors office to review them with us present. What he found astounded me. He looked at a spot on my spine and said that appears to be a spinal dural arteriovenous fistula. A SDAVF is an abnormal vascular structure, also known as an abnormal blood vessel. This blood vessel appears to be inside the spinal canal on or near the spinal cord potentially causing the symptoms that I'm experiencing. The problem with that is that most people that have one of these also have neurological deficits like numbness, weakness, tingling, and other problems with their arms and legs. I have none of these and only have problems with my bladder and other urinary type symptoms and now the erectile problems. So he is not 100% sure that this is it but he says this is a possibility that this is one of these fistulas on my spine. The only way to be completely sure is to do a spinal angiogram. I was thinking to myself, great, more tests. The more he described this procedure, the more nervous I got. Apparently this is a surgical procedure which in my case involves general anesthesia and the procedure is very similar to a cardiac catheterization if anybody is familiar with that. They go in through the femoral artery, up your descending aorta and they look at the individual blood vessels that service the spinal cord and each vertebrae at each level of the spine. The procedure takes several hours and if they find one of these abnormal blood vessels, the spinal dural arteriovenous fistula (SDAVF) that I mentioned, they fill it with superglue and hopefully a clots it off and you're done with it. Obviously when you work that close to the spine there is a slight risk of paralysis so there's a chance I may not walk out of there, though I know it is remote. After the procedure you have to lie still flat on your back for upwards of 4 to 6 hours. Because there is a significant risk of bleeding as they are going into your femoral artery and they need to make sure that you form a clot so that you do not have significant bleeding after the procedure. That lying still part is kind of a problem for a guy that has to urinate every 15 to 20 minutes. So the resident that my wife talked to when she made the appointment said that they would put a Foley catheter in me, that makes me very nervous because until right now the only one that has had to do that for me has been my wife and I am very comfortable with her doing it. I am not super comfortable with somebody else doing it to me. So I am having a lot of anxiety about it, not just because of that but because I have never had any kind of surgery before other than having my wisdom teeth out and a vasectomy. I realize this is not major surgery but to me it is a significant event. It is scheduled for the middle of November. I will be looking forward to putting it behind me. On a bright note this could be the cure to my problem and I could be all done with all of this from now on. So that is a good thing. I look forward to being able to sleep through the night without having to get up multiple times. I also look forward to being able to get in the car without having to research bathroom stops or worry about how I'm going to make it for a long trip. My wife is been very supportive about having this procedure she really wanted me to go through with it we are both hoping this is a care for the problem. She has been a calming influence when I describe to her the amount of anxiety that I'm having about having this procedure done. She has really been great about this whole thing.
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