Jim Alfredson Posted January 6, 2005 Author Report Posted January 6, 2005 Yes, but they are few and far between. Only like today when the snow is about 8 inches deep and still coming down do they close the schools. On topic, my wife decided that work is just too much right now (thank God!) She gave it her best go, but she is completely wiped out today and feels really bad (both physically and emotionally because she feels like she's giving up). I called work for her and they understand and I've tried to tell her it's not her fault. She gave it a go, it's just too early. I feel bad that there's not much I can do. She's lying down now and I'm watching little Zora (who is a crawlin' machine!) Quote
Dan Gould Posted January 6, 2005 Report Posted January 6, 2005 Hang in there, Jim and Allison. And keep pushing the Docs til answers are found! Quote
Brad Posted January 6, 2005 Report Posted January 6, 2005 Hang in there is right. My thoughts are with you. As a recent (one year) sufferer of tinnitis and a chronic back sufferer, I can tell you getting old is no fun. Quote
chris olivarez Posted January 6, 2005 Report Posted January 6, 2005 Eight inches of snow and all the Michigan schools are shut down-wow!!! Our school district might not pry loose of one of those snow days with eight feet on the ground and believe me I'm not exaggerating by much!!! I hope you keep going after those doctors. They shouldn't get any rest until Allison finally gets some answers and some peace. Quote
mikeweil Posted January 7, 2005 Report Posted January 7, 2005 Unbelievable these doctors haven't found an answer so far! I will keep my fingers crossed for you! Quote
Jim Alfredson Posted January 22, 2005 Author Report Posted January 22, 2005 Thanks for the concern. Next Wednesday, the 26th, is our appointment with the specialist in Ann Arbor. My wife's symptoms are all still the same. Quote
medjuck Posted January 31, 2005 Report Posted January 31, 2005 Any news from the appointment? Hope you're both ok. Quote
Jim Alfredson Posted January 31, 2005 Author Report Posted January 31, 2005 The appointment sucked. The doctor looked her over, got the whole story about the symptoms, their onset, our consultations with other doctors, etc., he looked over her MRI films and then said, "Well, I agree with the MSU Neurologist. Meaning I have no idea what's wrong." He explained that she does has a Chiari Malformation but the spinal fluid is still able to flow around it so he doesn't think that's the source of her problems. He said we should go see a neurologist that specializes in the "hard to diagnose". When asked if he recommended anyone, he just said, "I'm sure they have someone at UofM". Thanks. Right now we're trying to get into the Mayo Clinic. My wife has been pretty bummed out since the appointment. She told me the other day that she feels "worthless". I'm doing my best to make her feel better... it's all so frustrating. Quote
Dan Gould Posted January 31, 2005 Report Posted January 31, 2005 Oh man that really stinks ... keep hanging in there and keep searching for the right doctors. Someone's gotta get to the bottom of this. Quote
JSngry Posted February 1, 2005 Report Posted February 1, 2005 She's not worthless, dammit. The doctors you seen so far, on the other hand... Quote
Jim Alfredson Posted February 1, 2005 Author Report Posted February 1, 2005 She's not worthless, dammit. The doctors you seen so far, on the other hand... I know that, of course. She's just down. I made her a nice dinner tonight and she seemed better. Quote
JSngry Posted February 1, 2005 Report Posted February 1, 2005 Oh, I know that you know. Hope you know that I know that you know. Just don't let her start believing (or even consider the possibility) that she's "worthless". The mental battle is the key until the physical one can be won. Quote
White Lightning Posted February 1, 2005 Report Posted February 1, 2005 Just hang in there, Jim. Quote
chandra Posted February 1, 2005 Report Posted February 1, 2005 Jim: I am sure you guys will pull through. Our thoughts and best wishes are with you. I will pass along any suggestions that comes to my mind as they occur, but for starters.. I have not yet read through the whole thread, so this may have already been suggested, but in case not.... 1) Try Google answers. http://answers.google.com/answers/ It is a bit low on medical questions but by putting up some decent money you may attract some specialists attention from anywhere in the world. You can also browse the questions that are already answered to see if it is applicable. 2) WebMD is another resource. You probably searched there. 3) I have an experience with another situation but dissimilar to your wife's situation but the method might work. This is a bit of a hit and miss, so be prepared with some persistence. I will just describe what I did and use it as applicable.. I was reading a forum that was dealing with a situation my friend was ailing with. Someone there posted an article about a research program at Yale for that particular disease. With absolutely zero expectations, I shot off an email to the professor who is conducting the research. Next day, I got an email from his assistant. We got to talk,got the friend involved and talked further. The big benefit was, it took a while to figure out if he is the right candidate but it gave valueable free time with the professsor by email so we could get a whole lot of things clarified. This was all in the first week of getting in touch with them. The professor felt that he is not quite suitable for his study but referred him to another colleague at Yale. After 4 months, he actually participated in the study and got some extremely useful medical benefit for himself as well. But, for me, the amazing thing is how it all started with very low expectations and it took my friend in a few unplanned and unexpected directions but for his good. I lucked into it by reading an article in a medical forum. But you can start off a more methodical way by going to yahoo's Clinical Trials page. The way I got to it is by adding that content in my.yahoo.com. Let me know if you have difficulty finding it, I will help further. There you can search for clinical trials for very many conditions. I suggest you find something that is close and try to get in touch with them. Just by communicating with them will generate further ideas, even if that particular one is not right on target. I am suggesting this route since the doctors have indicated to contact university doctors. This gets you even more in to the research area but my strategy here is that it will somehow lead you to the right person. If anything else comes to my mind, I will keep you posted. All the best, Chandra Quote
chandra Posted February 1, 2005 Report Posted February 1, 2005 Here are the instructions for Clinical Trials with yahoo. Go to my.yahoo.com. You need to sign up with your yahoo account. Click on Add Content ( Top left ) click on Health and Wellness scroll down and find Clinical Trials Click Add. Click on Finished to go back to my.yahoo.com page. Now Clinical Trials should appear on your main my.yahoo.com page and you go from there. Chandra Quote
Jim Alfredson Posted February 1, 2005 Author Report Posted February 1, 2005 Thanks for the advice, Chandra. I'll show this to my wife. She's already on a Yahoo discussion forum about Chiari, although the doc we saw in Ann Arbor doesn't seem to think that's the cause of her problems. Quote
Jim Alfredson Posted February 2, 2005 Author Report Posted February 2, 2005 Just a little update: Today we had an appointment with a local neurosurgeon, just to have another opinion. He was very kind and was the first doctor we've seen who didn't act like he'd rather be golfing. He seemed genuinely concerned about Alison, but agreed with the neurosurgeon in Ann Arbor that her Chiari Malformation is probably not the cause of her problems. He did have some very good advice, however, and referred us to a non-MSU affiliated neurologist here in town. He also said that if this new neurologist can't help us, he should be able to expedite getting to someone who can. Overall, we felt pretty good leaving his office just because he explained everything very well and took the time to go over every idea we presented him. He also suggested another test that no one has performed yet to look at my wife's vertebral arteries. So at least we have another route to go on for the time being. Quote
connoisseur series500 Posted February 2, 2005 Report Posted February 2, 2005 Overall, we felt pretty good leaving his office just because he explained everything very well and took the time to go over every idea we presented him. He also suggested another test that no one has performed yet to look at my wife's vertebral arteries. So at least we have another route to go on for the time being. Perhaps this new test will reveal something. Hope the Health Insurance keeps up with all this... Quote
maren Posted February 2, 2005 Report Posted February 2, 2005 I'm glad you finally found this guy! Quote
SEK Posted February 3, 2005 Report Posted February 3, 2005 I hope that this neurosurgeon that you've connected with can bring needed insight leading to effective treatment. So have you tried U of M? My experience with them has been state-of-the-art and as conclusive as current knowledge allows. Also, communication skills are usually a high priority there. I was quite disapponted at the Mayo Clinic in Rochester, Minnesota, but that was many years ago. Star Trek nearly spoiled me early on . They pass a probe over you, and you immediately are diagnosed and usually cured! Over the years Star Trek has been wistfully brought up, from time top time, with or by neurology and neurosurgery residents and students. Incidentally, my last checkup's MRIs showed that my cancer has taken a disturbing turn; it will no longer operable, but it appears to be spreading relatively slowly so far. So I can look forward to between four months and two years before I try a less certain and less potentially effective route than brain surgery, chemotherapy, with possibly another round of radiation, after all these years, if the chemo doesn't work. It's a major drag, but, whatever happens, I've had one helluva run, thanks to the great folks at U of M. Organissimo may be therapeutic too. Quote
Jim Alfredson Posted February 3, 2005 Author Report Posted February 3, 2005 SEK, sorry to hear about your troubles. I hope they can find a way for you to be better. We have tried UofM. One of the things that the neurosurgeon, Dr. Kim, said yesterday is that right now we are moving laterally from doctor to doctor. From the top minds at MSU to the top minds at UofM. And what we need to do is move vertically, up to the next tier. He suggested Mayo or Cleveland Clinic. Quote
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