Originally Posted by jean
I was treated by Dr. John Lonstein
Minnesota Spine Center
in 1988 (age 40) and was pleased with my care. As an adult I was interested in finding a doctor who performed 'many' adult surgeries and learned of Dr. Lonstein through researching the medical library at the University of AL Medical Center in Birmingham, AL. His name was found repeatedly in various research. I corresponded with him for 12 years via mail - sending x-rays etc, - prior to my first 'face to face' with him.
18 years post op I have some chronic 'greater trochander bursitis' which is annoying but tolerable. I have a rod broken in my upper back-probably means a weekness in the fusion.
My grand daughter has just been to a Dr. Ledkye, I dont know if I am spelling that right. But this Dr mentioned Dr Lonstein. We went there from the Shriners in Minneapolis to Childrens Specialty Healthcare in St Paul. In Aug she was at a 49 degree,now in Dec to a 90. They want to schedule surgery for veptr rods soon. Only functioning on one lung and touching liver. Iam only the grandmother but am so worried, she will only be 3 in Feb. This Dr sounded like she knew what she was doing, but I would like to know if she is as good as Iam hearing. I understand that this Dr Lonstein is her collegue. My grand daughter was diagnosed when she was just 9 months and has been in a brace since but curve has gotten worse.I have been so sick with worry if this is the right procedure and if she is a good surgeon. Supposedly this is the only route at this time and time is running out for her. She has been hospitalized for various lung ailments and my daughter and her husband really liked this Dr. Ledkye. So the decision is/will not be mine. I think we are more in shock than anything at this point.I have been looking at risks, and this is going to be a long road till she is 18 or so, also I feel she will have a lifetime of pain, etc. They have been saying that they could hold off any surgery till she was around 5 or so. Not now. I have been looking up and contacting anyone that can help as far as the cost. They have some insurance but not much. This is the problem, they will not do it unless can be paid for 1st. I am really upset about that. Would they let my precious grandchild die, just because of money??? I asked that at the appt. in St Paul. Dr said her hands were tied. If anyone has info about this Dr Ledkye and any complications from this procedure she has done or the successes. Please let me know.