And that is one of the major issues Colleen has been dealing with: The fact that we can't even find the path for her to go down. You can't run a marathon if you are having difficulty locating the starting line.
Here is a summary of a lot of the stuff Colleen has done over the past several years, and some thoughts about those things. This is in no particular order.
Temple University (4 stars out of 10) - As a disclaimer, supposedly Temple has hired a well-respected doctor to their mix recently, but Colleen has obviously not seen him and hopefully won't need to. I am basing my rating solely on her experiences at Temple. It wasn't all bad - they ran a bunch of tests, and Dr. Fisher (who is retiring) did have a broad understanding of Gastroparesis and conditions in general. What he couldn't do for Colleen is go that extra mile in an attempt to find out what was really going on. They seem to operate under the assumption that tests will reveal all, and if they don't, they can't help you. Bottom line? I would probably recommend Temple to those who have a diagnosis etched in stone and need to know their treatment options. If your condition is a little more complex than that, you likely will run into a brick wall.
William Van Wyck (7 stars out of 10) - He is our PCP, and he is a rather good one. At this point, he can't be of much use to Colleen beyond giving out recommendations on specialists. It is telling, however, that after a few bad experiences with "specialists", Colleen decided to go back to him. Colleen is beyond what he can do at this point, but as a PCP, he does a good job.
David Kleinman (0 stars out of 10) - Colleen wanted to get an endocrine doctor's perspective on her condition, and ended up running into the worst doctor I have ever experienced in my lifetime. No knowledge of anything that I could see, mixed up Colleen's chart with someone else's, and (as we found out later), ordered a test to check Colleen's cortisol levels that was NOT A VALID TEST for her to have. Completely and utterly useless - I don't know how he is even in practice. If he had good bedside manner, I would throw a star or two his way - but he doesn't even have that.
"BodyScan" 2010 (0 stars out of 10) - There are people out there who simply love to profit off of the sick - I hate to even think that this is the case. That people who have these types of devices actually do think they are helping you, when the reality is they are not. They have you sign forms that basically say what they are doing is not meant to treat, cure, etc. any diseases. Then what is the point of your "practice"? Here is what they do: Hook you up to a computer, watch as results pop up on the screen, recommend marked-up supplements that they conveniently carry, etc. He even told Colleen he can do a procedure (hernia adjustment) that he really couldn't do (and didn't do when Colleen went there specifically for that purpose) He tried to claim that Colleen had all of these other things wrong with her not related to the stomach, but as soon as Colleen told him her stomach was giving her problems, suddenly his "tests" showed that her digestive system wasn't right. I try to be an open-minded guy, which is why I too can fall into these traps - don't do it. If anyone guarantees you that you will get better or tries to sell you on how many other people they have helped from all over the world (don't dare ask to talk to those people - perhaps we should have asked), run away. There is no procedure, device, etc. in the world that guarantees anything when it comes to a health problem.
Acupuncture (8 stars out of 10) - During the first round of Colleen's journey, acupuncture was the one thing that seemed to work quite well for her. However, after she was "healed" and feeling better, she was attacked again by this mystery ailment, and acupuncture did not help as much the second time around. I do think there is a place for this, however, and would recommend it to anyone who wants to try something "alternative" that isn't too far off course. Many western doctors now accept it as legitimate, and Johns Hopkins even has an acupuncturist on staff and is willing to share his protocol to any local acupuncturist you wish to use. That is the key - making sure those needles are hitting the spots that truly need to be hit.
Prosperity Health Center (7 stars out of 10) - Unlike some places (such as the BodyScan above), this center doesn't make any guarantees that you will "cured" within X number of weeks or months. What they can do is get you on the right track for healing through various techniques, including acupuncture, chiropractic care, and herbal remedies. One of their mottos is that they don't try to relieve your symptoms - they try to improve your life by using some of the techniques above. I think they are very reputable, that the staff is extremely friendly, and Dr. Kuan is more than qualified. Colleen doesn't go here anymore, mainly due to the distance but also because she wanted to try something different locally. Plus, some of the herbal mixtures she was given caused some problems with pain after they did their job. I would still highly recommend them, because it most certainly does not scream "SCAM!" Colleen had paid for future visits before deciding to not go anymore, and they gave us a full refund.
Johns Hopkins University - Dr. O'Brien-Clarke (9 stars out of 10 - but still incomplete) - We have only been here once thus far, with a second appointment (for a test) in a few weeks. Based on the one visit, you can see why they are often rated among the best (if not THE best) hospitals in the country. The staff is extremely friendly, the doctors are very knowledgeable, and they have a solid system set up that makes sure the doctor has all of the information in his hands before he even comes into the room to talk to you. I loved this aspect. You get 30-35 minutes of a doctor's time, if you are lucky - you want it to be useful to you AND him - not just a rehash of your prior medical history. We don't know yet how this story will end, but I do like the facility and the fact that the doctors are willing to think a bit beyond just a test score.
Stanley Hsu (0 stars out of 10) - Gastroenterologist that Colleen saw earlier in her journey. I can't comment on how he is with other conditions, but he knows nothing about Gastroparesis - his first comments were about how young Colleen is (Gastroparesis can strike anyone of any age). He followed that up with comments about her not being diabetic. It is a condition common in diabetics, but is not restricted to them. Overall, a waste of our time - but I can't comment on anything else he specializes in.
Diane Fresca (8 stars out of 10) - Our second endocrine experience was much better than our first. Even though Colleen's condition appears to be digestive related, Dr. Fresca still took her seriously, asked a lot of questions, ran a battery of tests - and also explained some of her thoughts on thyroid disease. She did a complete thyroid panel (which came back clean), plus ran a test for a rare stomach condition that I assume came back clean. She is also the one who pointed out that the cortisol test Colleen did was the wrong test that would not give an accurate profile of her true cortisol levels. She ordered the GOOD test, which Colleen still hasn't had. So, even though Colleen may not have an endocrine issue (we still aren't sure), I will still recommend this doctor - she knows what she is talking about and has good bedside manner.
Teresa Tacopina (6 stars out of 10) - She is Colleen's local gastroenterologist, and the doctor she has seen the most about her condition. While probably not an "expert" on Gastroparesis, she also is not a novice - she has treated many with Colleen's condition. Her bedside manner is good, and she is willing to think outside the traditional box (even recommending acupuncture early in Colleen's journey). She loses a few stars due to a recent appointment, where she prescribed Colleen a drug that Colleen already tried and rejected. (It wasn't the same drug - but it was in the same class). By the same token, Colleen asked her if she could attempt to try a different drug she hadn't tried before, and Dr. Tacopina obliged I guess in this case, there is some good and some bad - but as a primary, local gastroenterologist, she is more than capable.
Russell Mariani (2 stars out of 10) - This is the first person Colleen encountered when seeking a more "radical" approach to her condition. The cost is high, and he doesn't really offer many insights that go beyond what you already know. So, his "program" is good - it isn't junk science or voodoo magic, but it is also rigid, and he has the personality of "my way or the highway", which is a bit obnoxious when he charges such insane prices to get on his program. If he is unwilling to adjust based on each individual need, it becomes a situation where his program will help a few - just like the broken clock being right twice a day.
Essential Oils (No rating) - Have essential oils helped Colleen? It doesn't appear to be the case - though they have helped others with a variety of conditions beyond just digestive issues. Because of that, I can't say it is a big scam unworthy of your time. All I can say is that they haven't really done much good for Colleen's particular condition. If you need to try something new and different to potentially get relief from what ails you, it can't hurt to try them - and because I don't see them as a voodoo scam, I would even say they can help people - just not everyone.
There may be other people Colleen has seen that I have already forgotten about - there have been so many, after all. There is another doctor she saw in the beginning of her journey, but I forget his name. He knew a lot about Gastroparesis, but was trying to sell Colleen on getting the pacemaker which she likely does not need.
As I have typed many times already, we don't even know exactly what Colleen has - and that is the major sticking point we have run into through the years. We are hopeful that Johns Hopkins will figure something out for her. Only time will tell there.
Use herbal remedise for complete Gastroparesis Herbal Treatment because these remedies are very effective and played a vital role in the get rid of gastroparesis witout any side effects.
ReplyDelete