Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Yesterday we found out that our son will be getting a muscle biopsy done in Atlanta with Dr. Shoffner. Would someone please tell me where it's done, and how it's done. Will it be in a hospital somewhere under anesthesia, or how does he do it? How long does the procedure take from check in to check out? Also, is there a Mc house nearby? If not, where do you stay while you're there? We'll be driving from WI, (with stops both ways in VA to see family) so it should be quite an adventure! *Ü* Thanks for your help! e *Ü* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Good Morning e, My son J.D. has his done about 4 years ago in Atlanta by Dr. Shoffner at the Children's Hospital - used to be ish Rite. Dr. Shoffner is thorough in his examination and his report. He is a diagnostic dr and getting a dr to follow the mito afterwards is a little of a challenge. The local MDA here sent J.D. to Dr. Shoffner so if you have not contacted the MDA you might want to do so before you go - they helped with what was not covered by insurance and has helped with equipment and sent J.D. to camp. We stayed at the Mc House, only about 5 minutes from the hospitals. You can get the # from Dr. Shoffner's office or they might already set you up at the house. Dr. Shoffner put in orders to not use gas because that breaks the muscle down. J.D.'s biopsy along with a spinal and other testing was done under anesthesia. His was done that morning and returned back to the house that evening then the next morning returned home. The surgery went well but as you know or will learn each mito child even with the same complex are different. J.D. started wiping out day after surgery. We took lots of pillows so he could rest better coming home. Hopes this helps. Good luck and what is your son's name so we can say a prayer for him and your family? Also, how old is he? Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 We went down last April, but had friends down there that rallied together with their entire Sunday School to get us hotel room and meals (we were not aware of MDA at the time). Mc House was full and we could not get in. My son had trouble post-surgery and needed to stay a few extra days, but normally it is only get there and one day for consult, next day for surgery, then day after, go home. Note that the results will be several months before they come back. *IMPORTANT* Make sure that they know what meds/supplements your son is on so he can get a valid result if he needs to stop any, they usually recommend a drug holiday on certainthings anywhere from 1-3 months before the biopsy. Rod --- e wrote: > Yesterday we found out that our son will be getting > a muscle biopsy done in > Atlanta with Dr. Shoffner. Would someone please tell > me where it's done, and > how it's done. Will it be in a hospital somewhere > under anesthesia, or how > does he do it? How long does the procedure take from > check in to check out? > Also, is there a Mc house nearby? If > not, where do you stay > while you're there? > We'll be driving from WI, (with stops both ways in > VA to see family) so it > should be quite an adventure! *Ü* > Thanks for your help! > e *Ü* ===== ************************************ " The kids are not mine, they are God's and I have them on loan. There are some days I want to trade up, but my credit is really bad. " -Donna Thorell __________________________________ Celebrate Yahoo!'s 10th Birthday! Yahoo! Netrospective: 100 Moments of the Web http://birthday.yahoo.com/netrospective/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 My Caden will be having a muscle biopsy done in Atlanta in 2 weeks (by Dr. Shoffner). We are searching for flights right now, so I am glad to hear about the MDA! Anyways, we have a consultation with Shoffner on the 15 of March, then the biopsy will be done on the 16th. It is an out-patient procedure. They are also doing a spinal tap. Caden has had 1 spinal tap before and got a "spinal tap headache," so we are staying until the 18th just in case they need to do a blood patch to fix it. I have talked to parents that stayed in the RM house, but apparently it has community bathrooms on each floor (someone let me know if this isn't correct) so one family stayed in the Hilton (near the hospital) so they could have their own bathroom and all. I think it's hard to get into the RM house there, and they wait until last minute to see if anything is available. We are getting a hotel. One family told me they wished they had rented a car because there is lots of stuff to do and see if you can get to it. Another family was happy with the RM house. Shoffner's office will send you a complete packet with all the RM house info and all the information for the hospital and all. It is at the ish Rites Hospital of Atlanta. One family told me to schedule the follow-up appointment while you are there for the biopsy because it takes a long time to get back in to discuss the results. I don't know if this appointment is something that has to be done or not. I have to find out myself! I hope any of this helps. I will be able to tell you more after March!! You can get in touch with me if you'd like. Vicki~ mom to Caden (16 mo) poss. mito http://www3.caringbridge.org/ts/cadenlane/ Muscle Biopsy in Atlanta Yesterday we found out that our son will be getting a muscle biopsy done in Atlanta with Dr. Shoffner. Would someone please tell me where it's done, and how it's done. Will it be in a hospital somewhere under anesthesia, or how does he do it? How long does the procedure take from check in to check out? Also, is there a Mc house nearby? If not, where do you stay while you're there? We'll be driving from WI, (with stops both ways in VA to see family) so it should be quite an adventure! *Ü* Thanks for your help! e *Ü* Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Vickie, Don't think community bathrooms but community kitchens. It was nice and the shuttle takes you to the hospital. Traffic in Atlanta is horrible. Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 My 8 month old daughter had her biopsy done in Atlanta in the middle of January. We live in Georgia and my daughter was already in ish Rite. She was admitted at the beginning of Jan because of increased seizures. They just took her to the OR and did the surgery. They had to put her under with anesthesia and the procedure took only about 30 minutes but the recovery took a little longer. They had to wait until she woke up from her anesthetic. They said it would've been done as an outpatient if she wasn't already in the hospital. Jessy > Yesterday we found out that our son will be getting a muscle biopsy done in > Atlanta with Dr. Shoffner. Would someone please tell me where it's done, and > how it's done. Will it be in a hospital somewhere under anesthesia, or how > does he do it? How long does the procedure take from check in to check out? > Also, is there a Mc house nearby? If not, where do you stay > while you're there? > We'll be driving from WI, (with stops both ways in VA to see family) so it > should be quite an adventure! *Ü* > Thanks for your help! > e *Ü* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Thanks so much Darlene for the information! It was a big help. I just called the MDA clinic, and because Devin (6) has Carnitine Deficiency and the LHON mitochondrial mutation, they are going to send me the registration papers. So thanks for that tip. They told me about their grants to help families, and about their camp. I said I don't think that Devin should be going to camp because of his cyclic vomiting syndrome. If he stays out in the heat even one minute too long, he's going into a full blown episode! Not fun! Mostly, thank you for the prayers! We certainly can use all that we can get around here lately. Poor Devin has one thing after another! Isn't that the case with all our children though?! e *Ü* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Hi Rod, I appreciate your reply. I thought that was so nice that your friends made sure you were well taken care of while there! God bless them! As for the supplements and meds, when we were at the Genetics doctor yesterday, he told me to begin weening Devin off of the Carnitor (that's the only thing he's on) so that he'd be free of everything when it came time for the biopsy. We want it as clean as possible! Then after the biopsy, we'll begin the cocktail no matter what the results are. I can't wait to get it done and over with. Thanks again! e *Ü* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Good luck to you and Caden! I'll say a prayer that all goes well. I think we'll be getting a hotel as well. My children would love to stay and the RMH, but my dh likes his privacy! I'm glad Dr. Shoffner sends information ahead of time, because I don't like to go where I haven't researched, you know? I know nothing about Atlanta or ish Rite Hospital! I'll have to go online to do some reading. When you get back from doing the biopsy, will you tell us all how it went? I'm sure more than just I would like to know that Caden did well through it all. e *Ü* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Hi e, Our son Jack had his biopsy in Atlanta with Dr. Shoffner last May. We live outside of Boston. The people at Dr. Shoffner's office were very helpful and informative. We actually had our flights paid for and we stayed in The Mcdonald house. You may share a bathroom with one other family, the only problem we found with this was late at night it was a little noisy...The convenience factor alone helped us make our minds to stay there. The shuttle took about 5 minutes to get to the hospital and back. We had our pre-op appointment with Dr. Shoffner and check in the day before the procedure, which made things much easier. Jack was under anesthesia, which was the hardest part for him. Dr. Boydston did the actual procedure, and we were very happy with him. We stayed in recovery for a few hours. We felt comfortable taking Jack back to the Mc house afterward since we were so close to the hospital. Jack was a trooper, and pretty much back to normal on motrin and tylenol by the time we flew home the next day. If you have any other questions, please ask- this experience is fresh in our memories and can be quite overwhelming, although everyone in Atlanta was wonderful. Oh- we had the biopsy on May 23, and the results on August 3. Good luck, --- e wrote: > Yesterday we found out that our son will be getting > a muscle biopsy done in > Atlanta with Dr. Shoffner. Would someone please tell > me where it's done, and > how it's done. Will it be in a hospital somewhere > under anesthesia, or how > does he do it? How long does the procedure take from > check in to check out? > Also, is there a Mc house nearby? If > not, where do you stay > while you're there? > We'll be driving from WI, (with stops both ways in > VA to see family) so it > should be quite an adventure! *Ü* > Thanks for your help! > e *Ü* __________________________________ Celebrate Yahoo!'s 10th Birthday! Yahoo! Netrospective: 100 Moments of the Web http://birthday.yahoo.com/netrospective/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Hi e, Glad to help. The camp here goes to extreme to make sure the kids' needs are met. They do a good job and have a one-on-one counselor. Ditto on the one thing after another. It has been a long-hard road. J.D. used to vomit more but every six months it seems like another presentation. Take care, Darlene Quote Link to comment Share on other sites More sharing options...
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