Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Joanne, I've kind of come to that conclusion, that Cleveland, Atlanta, or Mayo are the best options. What do you think about Mayo versus Cleveland? Kim > > > Hi Kim, > > There are NO " good " MDA clinics or metabolic doctors in or around > Chicago. One metabolic doc is " OK " if you have one of the known, > easily detected genetic mutations, ie MELAS, MEERF, etc. We live > within 20 minutes of Chicago and 3 MDA CLinics, yet travel to > Milwaukee for case management and Mayo Clinic and Cleveland Clinic for > metabolic specific management. I actually work at a medical center in > Chicago that has an MDA Clinic. When I questioned two of the docs I > was told, " Mito is so rare I've never seen a pateitn with it and I'm > not likely to during my years of practice " . The other said, " We > should see your girls in the event of an emergency. We don't have the > typical coctail meds in our formulary, but we could get them within 48 > hours if they were admitted. " All of the local docs that evaluated my > girls totally missed the diagnosis and, to this day, they have NO clue > how to manage them or what to do if and when there is a problem. > Overall, my girls to receive good care/management from teh Critical > Care team in Milwaukee. The docs in Milwaukee actually were the ones > that started the mitochondrial disease evaluation process and > processed the referrals to 1) Atlanta, 2) Cleveland and 3) Mayo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Sorry, I'm not Joanne but can tell you that you'll never get in to see Cohen, the only guy you'll want to see in Cleveland, at least not this century. It is easier to see Whiteman at Mayo. Do NOT go to see the fellow if they offer this when you call Cleveland. You'll regret it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Thanks for the heads up on Cleveland. Also thank you for a doctors name at mayo. Does mayo do fresh biopsy though? Kim > > Sorry, I'm not Joanne but can tell you that you'll never get in to see Cohen, the only > guy you'll want to see in Cleveland, at least not this century. It is easier to see > Whiteman at Mayo. Do NOT go to see the fellow if they offer this when you call > Cleveland. You'll regret it. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 What part of the country are you from? If you are in or near the New England area and are looking for someone to manage his course then I would highly recommend Dr Korson at NEMC. He would send you for a fresh biopsy if he thought he couldn't make a clinical diagnosis or it would yield some helpful results. Whiteman/Mayo only do frozen. One of my best friend's goes there and she loves Whiteman but they have never gotten good results from froz biopsies...they have done muscle and the very dangerous, liver ones. Now they want to do another liver but my friend just doesn't see the point and feels if she decides to do another one she will take her daughter to shoffner. Shoffner is great if you are looking for diagnostics. However, you will still have to find a dr to manage his care if you don't have a local one that does an okay job. Several of my friends who go to Mayo, love Dr Whiteman but all of them have heard little snippets that he may be leaving soon and going to Maine. His family (including his wife) still live there and he wants to be back with them. Please know I don't have experience with either of those docs but just with Shoffner and Korson. deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 Grace goes to Cleveland. However, we live in a suburb of Cleveland, and all of her care was already done at CCF so it was a rather easy choice. Dr.Cohen is Wonderfull and probally one of the most intelligent people I will ever meet. I honestly believe he is the one who saved my daughters life. Cleveland also does fresh muscle biopsies. The only problem with CCF is scheduling, especially for first visits. Trying to get a scheduled appointment can have a very long wait. However, if Grace really needs seen Dr.Cohen has always fit her in his schedule. I hope this can help a little. Get the NEW version of MSN Messenger - it's FREE! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 Hi Kim, Unfortunately, if you are not an already established patietn of Dr. Cohen at Cleveland Clinic, it is next to impossible to get a new patietn appointment slot. The last time we were there, one of the office staff said the " waiting list " is about two YEARS long. You can get a new patietn consultation appointment with Dr. Whiteman at Mayo Clinic within 3-6 months. Both physicians do a review of the existing medical records to determine if an appointment is appropriate prior to scheduling one. The Neurology section at Cleveland Clinic is offering families who are on teh wait list to see Dr. Cohen an appointment with their neurometabolic disease Fellow (a doctor doing advanced training). Every family I know of that has accepted this option has been very disappointed and unhappy with every aspect of the appointment. Even though they were led to believe that Dr. Cohen would review " everything " and provide his expertice, that simply did NOT happen. Families let there with no additional information and NO closer to a diagnosis then when they arrived. If you can actually see Dr. Cohen or Dr. Whiteman you will likely be quite pleased with the appointment, evaluation and recommendations. The downside of Mayo Clinic is that the Clinic requires guarentee of payment or money up front and accepts very few State Medicaid plans. As far as I know, to date, only Cleveland and Atlanta can do the fresh muscle biopsy. Mayo is doing skin fibroblast studies to assist in the diagnosis of mitochondrial disease. They have both an old and new technique. If the studies have proved to meet their acceptable standard, they spoke of discussing the technique at the next conference. I haven't heard the outcome of their evaluation yet. If it is successful, this would be a great alternative to on open muscle biopsy as skin cells can be sent for culture form anywhere in the Country. The difficulty is that there are so few physician " experts " across the US. Even among those some only diagnose but provide no follow up care/management to patients that are not from their geographic local. There is also a specialist in Boston, Dr. Korson, who is well respected by the families that have seen him. It is just to far for my family to travel for on going care. Other families are case managed by physicians in California, New York or at Hopkins. SOme of the MDA Clinics have served other families well, although they seem to do best for patients with a firm diagnosis or those having one of the commonly accepted genetic mutations. Unfortuantely, it often comes down to the ability to travel, insurance stipulations, financial resources and the overall complexity/medical needs of the patient. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 > > Thanks for the heads up on Cleveland. Also thank you for a doctors > name at mayo. Does mayo do fresh biopsy though? No, they don't. But they can arrange for you to get one in Cleveland and you shouldn't have to wait for over a year to get the biopsy. Quote Link to comment Share on other sites More sharing options...
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