Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 , My son was tested but found out he had multi focal points of orgin so he was not a candidate. Where did you get your testing from? Dr. Duchowny did ours in Miami. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 , My son was tested but found out he had multi focal points of orgin so he was not a candidate. Where did you get your testing from? Dr. Duchowny did ours in Miami. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Hi , Our neuro also thought our son would be a good candidate for surgery since the seizures were originating from the left side, but then after a second opinion from Dr. Guerrini in Italy, he thought that surgery was not appropriate. He said that the polymicrogyric cortex is functional active and even if its function is under the interference of epilepsy, its removal would produce a severe permanent deficit, much more severe than you see now. I don't know about the severity of your daughters epilepsy, but has CSWS and the seizures generally subside at about age 12. Basically, we just have to ride it out while trying to control the consequences from the spike and wave activity the best we can. I'm very glad we decided to consult with Dr. Guerrini because the more I learn, the more a realize what a mistake a hemispherectomy would have been. -Steve alli006 wrote: Hello, I have a question regarding surgery for unilateral PMG. Our daughter Olivia is 13 months and we were just told she may be a candidate for surgery. All of her seizures are focal and originating from the left side of her brain. Has anyone on this site had the surgery done and if so, what has the outcome been? Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 , Also, I forgot to tell you another thing I learned. Dr. Dobyns said that true unilateral PMG is extremely rare and most of the cases that he sees have a very restricted or even microscopic region of PMG on the other side. When he reviewed my son's MRI, he said that even though 's right side appears normal, he is still at risk for a small area of PMG on the right that he can't see. So it is possible that your daughter could have the left side removed, but then still have a risk of seizures coming from the right side. He also said that left sided PMG is unusual. Right sided is far more common. I would like to talk to you more about your daughter sometime. -Steve alli006 wrote: Hello, I have a question regarding surgery for unilateral PMG. Our daughter Olivia is 13 months and we were just told she may be a candidate for surgery. All of her seizures are focal and originating from the left side of her brain. Has anyone on this site had the surgery done and if so, what has the outcome been? Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 My son went to Miami for years and we finally stopped when we were told his problems were due to ADD and behvioral disorders rather than seizures. Thank God we did. We eventually did try some of the ADD meds - they didn't do any good - that is not the problem, but our doctors now listen to us and do not try to pawn everything off on a simple answer. We now go to Orlando to see Dr. . He has a very full caseload, but still makes time for us. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Hi Steve - I also had heard good things about Dr. Milan - his office staff was great too. OUr insurance wasn't accepted there so we never tried him, but currently we are pleased with the efforts of our neuro although the outcome is not what we had hoped for. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 We just returned from Shands in Gainesville, FL. The doctors were Dr. Carney and Dr. Liu. We are returning for a follow-up on Feb. 23rd and they are meeting in conference to discuss her case the following week. We have not heard positive things about Miami. What did you think? > > , > > My son was tested but found out he had multi focal points of orgin so he was > not a candidate. > > Where did you get your testing from? Dr. Duchowny did ours in Miami. > > Donna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Steve, Thank you so much for all your information. We remain skeptical because 2 other neurologists (St. Pete, FL and Boston Children's) ruled surgery out. Do you have information for Dr. Dobyns? It would be interesting to see what he found on Liv's MRI. The whole neuro team still has to meet regarding surgery for her. We, of course, will find out all information necessary before making any decisions. She was born with Ohtahara Syndrome but has presented very differently than many of the other kids. She has daily seizures but is very alert, emotionally there and amazing strong. She is a twin and her sister is doing wonderfully. Hello, I have a question regarding surgery for unilateral PMG. Our daughter Olivia is > 13 months and we were just told she may be a candidate for surgery. All of her > seizures are focal and originating from the left side of her brain. > > Has anyone on this site had the surgery done and if so, what has the outcome been? > > Thank you, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 We live in Gainesville, and we travel to Tampa to see a neuro. To put it lightly, I've had a very negative experience with Shands and Dr. Carney even though he was not our neuro. The neuro we had is no longer there. I have spoken to Dr. Carney on the phone when my son was having constant atonic seizures and he was not very helpful and seemed annoyed that I called. I would advise you to get another opinion. I have no faith in the Shands ped neuro department. I have also heard good things about Miami childrens and tried to get an appointment there but had trouble even getting through to anyone so I abandoned that idea. There is an excellent epilepsy center in Tampa that has done more epilepsy surgeries than any in the state. It's affiliated with USF but I can't remember the name. We were going to be referred there until we got Dr. Guerrini's opinion and our doctor concurred. We see Dr. Millan at West Coast Child Neurology. He is good because he listens and is not so arrogant that he thinks what he says is gospel. Where do you live? -Steve alli006 wrote: We just returned from Shands in Gainesville, FL. The doctors were Dr. Carney and Dr. Liu. We are returning for a follow-up on Feb. 23rd and they are meeting in conference to discuss her case the following week. We have not heard positive things about Miami. What did you think? > > , > > My son was tested but found out he had multi focal points of orgin so he was > not a candidate. > > Where did you get your testing from? Dr. Duchowny did ours in Miami. > > Donna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 wbd@... Also I would send her MRI to the Walsh Lab. It's www.walshlab.org I dealt with Kira Apse and Dr. Chang. Dr. Barkovich is the one who reads the MRIs. They will do it for free. I was wondering, does her sister have PMG? If not, was it twin to twin transfusion that caused the PMG? alli006 wrote: Steve, Thank you so much for all your information. We remain skeptical because 2 other neurologists (St. Pete, FL and Boston Children's) ruled surgery out. Do you have information for Dr. Dobyns? It would be interesting to see what he found on Liv's MRI. The whole neuro team still has to meet regarding surgery for her. We, of course, will find out all information necessary before making any decisions. She was born with Ohtahara Syndrome but has presented very differently than many of the other kids. She has daily seizures but is very alert, emotionally there and amazing strong. She is a twin and her sister is doing wonderfully. Hello, I have a question regarding surgery for unilateral PMG. Our daughter Olivia is > 13 months and we were just told she may be a candidate for surgery. All of her > seizures are focal and originating from the left side of her brain. > > Has anyone on this site had the surgery done and if so, what has the outcome been? > > Thank you, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 I didn't care for Dr. Duchowny very much at all. I also never received a final full report of his opinion and recommendations. He called and spoke to me briefly on the phone and that was it. My friend is getting ready to see Dr.Carney? What is your opinion of this doctor? Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 I've had a very bad experience with Shands peds and the doctor that we saw there. I spoke to Dr. Carney once, and he was not helpful at all. He sounded irritated that I called. I'm not sure if he is a good doctor but just not friendly or respectful, but I really don't care for Shands. I try to avoid going there at all costs even though I live in Gainesville. Donna wrote: I didn't care for Dr. Duchowny very much at all. I also never received a final full report of his opinion and recommendations. He called and spoke to me briefly on the phone and that was it. My friend is getting ready to see Dr.Carney? What is your opinion of this doctor? Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Personally, I was impressed with Dr. Carney and Dr. Liu at Shands. They answered all of our questions and it was the first time my husband and I felt things were completely explained to us. We will get a better feel when we return at the end of February. I am looking forward to meeting the rest of the neurology team. Dr. Carney's background is also in engineering. We thought that was an interesting combination. We will be sure to obtain more opinions if they do believe Olivia is a surgery candidate. I've had a very bad experience with Shands peds and the doctor that we saw there. I spoke to Dr. Carney once, and he was not helpful at all. He sounded irritated that I called. I'm not sure if he is a good doctor but just not friendly or respectful, but I really don't care for Shands. I try to avoid going there at all costs even though I live in Gainesville. Donna wrote: I didn't care for Dr. Duchowny very much at all. I also never received a final full report of his opinion and recommendations. He called and spoke to me briefly on the phone and that was it. My friend is getting ready to see Dr.Carney? What is your opinion of this doctor? Donna Quote Link to comment Share on other sites More sharing options...
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