Miami Childrens Hospital

[madysmom]

HI I was wondering if anyone could give me any info on MCH?? We have heard of Dr Michael Grossman, if anyone has been to him or has any info we would appreciate it so much, thinking of taking maddy to see him in March> Thanks, staci, Madysmom

[admin]

we have taken our son to Dr. Grossman since he was 2 years old he has had 1 surgery and we are sceduled to go in February to have muscle transfers done. He is extremely knowledgable and he works very closely with his ot named Lorna who is wonderful. the hospital is fabulous and very helpful. I dont know where you live but he also sees patients in New york. That is actually where we see him because we live in NY, but we travel to Miami for all surgeries because that is where his team is. Feel free to email me with any other questions cjca@optonline.net Kathy

[staycee]

My son is also a patient of Dr Grossman since he was 6 months with 1 surgery at 9 months, we are very happy w/ the Dr. and his group and MCH was a really nice hospital, feel free to email meBSS99@adelphia.net

[danar]

My daughter has seen Dr. Grossman since she was 4 months old and we had surgery with him when she was 6 months. He is wonderful and so is his OT Lorna. Where do you live? Feel free to email me with any questions you have sleeplessinfl2000@yahoo.com.
Good luck,
Dana

[admin]

We had a wonderful experience with Dr.Grossman and his team. They took time to answer every question and were very friendly & helpful. The OT was great and took a lot of time and actually gave us a lot of tools, which others hadn't really done. I would highly recommend him, but I always feel it is important to get multiple opinions, especially in regard to surgery.

[marymom]

My recollection of Grossman's office is mostly with Lorna Ramos,she was very sure of herself and expressed irritation at the idea that I had an opinion contrary to hers, as if she knew best, their group advised surgery for Max just before TCH did, they saw him in person at 6 weeks of age and then a video at about 3-5 mos of age...they said there was no way he would improove without surgery and at the very least E stim, both of which we declioned and we have seen excellant results thus far, Max is now 4 and I am looking at surgery again and because we live really close to Miami I have thought about contacting Grossman but because of my alternative orientations I am seeking other options first, also what should be taken into account is that I was not very open and receptive to the information she was giving to me, so perhaps my interpretation was off, but I am for sure I recofnized competitive animosity towards another care provider when the other provider was mentioned, maybe it was earned, I dont judge that as a bad thing but I will share that it exists, and I am certain the outlook she gave me for my son was not accurate as he is now 4 and WAYYY surpassed everything she said he would probably never attain without surgery/estim. That said too, I am sure they are excellany care providers if you have ALREADY decided to have surgery, they have excellant reputation and the few words Dr Grossman himself said were articulate and well meaning,
I myself would consider them if I had ALREADY made the decision to have surgery...(course if they read this theyll never let me in the door, haha)but I would question their surgical orientation if consulting them for an evaluation.
Oh yeah, and I remember the sweet receptionist(not sarcastic, she really was very nice) who the very first words were, what insurance do you have and are you in litigation...I absolutely realize that is just the business aspect but it was weird to hear...

[martimccabe1962]

Hi!
My daughter Emily had surgery done by Dr. Grossman. He does an excellent job but not much of a talker and be prepared with questions or else after the surgery he'll come in and out of hospital room and you won't know what hit you. He will answer your questions if you ask him. Lorna can be inpatience but is also very good. Lorna does follow up up with you. Miami Children's hospital took excellent care of my daughter. We had a room to ourselves because my daughter had a cold and noneone wanted to catch it so we were lucky.

[admin]

follow up after surgery is very poor.my child is almost totally forgotten since her surgery 2 yrs ago.maybe because ins refused to pay all the money.bill was over $.80,000

[BobG]

(Sorry Francine another long post!)
Staci,
I can confirm some of the things you have already read and add in my two cents about my experiences with Dr. Grossman and MCH. We were just down at Miami Children's Hospital this past December. Dr. Grossman performed a tendon release and a muscle transfer on my 3 1/2 year old son, Alex.

First, the doc's/OT.
Dr. John (I believe, not Michael) Grossman (see http://www.handandnervespecialist.com/m ... s.htmlalso see http://www.brachialplexusmd.com/LORNAC_ ... ig-c_1.HTM), Dr. Andrew Price
and the Miami Children's Hospital (see (http://www.mch.com also see http://www.mch.com/clinical/brachial.htm) have an excellent reputation for treating BPI-related injuries. However, the information you may find on them and their program pales by comparison to the information about Texas Children's Hospital (http://www.texaschildrenshospital.org also see http://www.texaschildrenshospital.org/C ... s/Main.htm) and the BPI Staff there (notably Drs. Nath and Laurent).

Nonetheless, I have read about great outcomes from both programs. There are also other great centers (of excellence) specializing in BPI injuries (see http://www.nbpepa.org/special.htm - may be a little outdated). Living in the Northeast the ones I hear about the most are Dr. Waters at Boston Children's, Dr Nath and his staff at Texas Children's, and Dr.Kozin (I think that's the spelling) at Philadelphia Shriner's.

Many of the (more vocal) people on this board have had great experiences at Texas Children's Hospital. So, you may feel that anywhere else is second best. That simply is not true. The "best" place for surgery is determined by many factors, including the your ability to maintain follow-up care (post-surgery, Alex needs to see Dr. Price once a month), the philosophy and aggressiveness of the dr./program and (unfortunately) insurance/cost issues.

We live in the Northeast about a 2 hour train ride from New York City. Dr. Grossman works in conjunction with Dr. Andrew Price who is based in New York. Dr. Price is also well-versed in BPI injuries. He usually assists Dr. Grossman in surgeries in Miami and Dr, Grossman will also perform surgery and assist Dr. Price in New York. If you need an office visit or a surgical follow-up visit, you can schedule it with Dr. Price or if you really want to see Grossman, he and his O/T Dr. Lorna Ramos are periodically in New York for office visits.

As people have mentioned, Dr. Grossman is a man of few words. You can tell though he knows exactly what to look for and how he should proceed. If you're the type of person not to blindly trust his reputation and experience, challenge him, ask questions, ask a lot of them. Get comfortable with the answers. Keep in mind, there aren't any real miracle surgeries where all the BPI issues go away immediately after surgery.

Grossman’s OT, Lorna Ramos, more than makes up for his quietness. She deals with BPI kids all the time and is up on things like specific exercises for specific BPI issues and other things like e-stim. Bring a camcorder she’ll show you things and talk about things that you’ll probably forget and wish you remembered. She is very helpful, caring and communicative. (She is currently trying to help get our insurance to cover the cost of an NMES e-stim machine.)

Dr. Grossman’s office is about 7 miles South of MCH. He works out of the Baptist Medical Arts Building on Kendall Drive. It’s part of the Baptist Hospital complex. We went there the day after Alex’s surgery for a follow-up visit. Parking in the main lot isn’t great. I dropped off my wife and kids (Alex in his “statue of liberty” cast) and then went back to the main lot and was lucky enough to find a space. There is a garage in the back, but I’m glad I didn’t have deal with it.
Our experience with Miami Children’s Hospital was less than stellar. First let me say that is was a nice facility located in a nice neighborhood. There’s free parking and a decent cafeteria. The staff is generally friendly.

MCH has pre-surgery tours on Saturdays. They want you to get your timing and bearing down before the big day. It’s a great idea, but I had a heck of a time trying to get Alex’s name on the list. The number listed in the hospital packet was incorrect. I called the main number and tried to explain what I was trying to do. They forwarded me to some voice-mail box and finally I made contact with someone who took our name down and said to just show up at 9:30 am. When we got there, they were still unprepared for us. Usually, they’ll have some anatomical prop to show the children and parents what to expect for surgery. The tour guide had our name on her list, but she didn’t really know Alex was having shoulder surgery. We did get to see and hear about what a spinal fusion was going to be like (for the other family that was there.) They had some cookies and juice and we viewed a rhyming child-oriented video that describes the whole hospital experience. The whole thing lasted about 2 hours. We left there not knowing when to show up for surgery and had to call on Sunday to see when we needed to show up on Monday. At least we knew where to go and where to wait. From that perspective the tour was worth it.

Surgery Day (Monday). We called on Sunday and were told to show up at 10 a.m. for surgery that would start at 12. So we did! We we’re even there a little early. We got through admission and went over to the pre-op waiting area. A few people came by to take some info and explain a few things. Then, I (yes me!) get a call in this area of the hospital. It’s someone from work (back in the Northeast). Apparently, Dr. Grossman’s office staff (Millie, I believe) didn’t know that we had checked into the hospital and called my work number. Luckily,(I work in a large company) I had told a few of my co-workers the reason for the trip. My answering machine roll’s over to a secretary (who doesn’t know the purpose of my trip.) Millie tells her that we’re scheduled for surgery and if they can’t locate me, they’re going to cancel it!!!! The secretary (Debbie) goes into panic mode (she actually broke out in hives.) Debbie calls the HR area to try to get my mother’s phone number. They reluctantly give it to her. I gave my mom a sheet with all our info before we left (hotels, flights, cell phone etc). She gives Debbie the cell phone number, but we have it off because we’re in the hospital. Debbie is now in a highly elevated panic state. She goes over to my work area to see if any else knows anything. This one resourceful guy calls the hospital and works his way through to the area where we are. He tells me to call Millie right away or they’re going to cancel our surgery. We talk to Millie and get things straightened out. I know I’m just stating the obvious, but it seemed like the communication between Grossman’s office and MCH was a little mixed up. Also, now some of my co-workers know what’s going on and I don’t really them to!!!

Alex gets a drink to make him drowsy and finally we get to see Drs. Grossman and Price. They ask us if we have any questions and basically say “you know what we’re doing, right?” My wife and I say that they are “releasing a tendon and re-routing a muscle from front to back so Alex can do ‘this’ (and we show them the motion we expect to see after surgery and therapy. Dr. Grossman says the movement gained should be ‘this’ and he shows a lot less movement than we just indicated. Alex gets wheeled away and my wife and I looked at each other through tears and say basically “can you believe what you just saw.” We know Grossman has a great reputation, so at that point we were just hoping for the best.

Alex came out of surgery (3 hours later) beautifully and was virtually in no pain (even in the weeks following surgery). Lorna came and visited and spent a lot of time talking to us. It was great. She even helped us get one of the (very few!) portable Nintendo systems because Alex just LOVES Nintendo.

I stayed in the hospital as late as possible, but had to go get my daughter from my wife’s friend’s house. By 10 pm or so Alex actually wanted to get out of bed and go pee in the toilet. My wife said she asked for help from the nurse because of the IV, pain med tube and all the wires he had connected to him. The nurse said just unplug this/that do this/that then left the room. My poor wife had to negotiate Alex over to the toilet (not having any idea about how sturdy the cast was) and let him do his thing. She the had to get him back over to the bed, lift him up and connect his wires back up.

I can go on and tell you a lot more, but I’ll get to the ending. Three weeks after surgery we had to go see price in New York City to have the surgical gauze/bandage removed. Six weeks after surgery (3 weeks later) we go back to NYC to get the cast off. Right of the bat Alex can touch his nose and get his hand up to the side/top of his head. We were very happy with what we saw. Remember what I said earlier about follow-up visits. There may be a lot of them.

We’re currently in the heavy-duty therapy mode. Two days per week on ground, one day in the pool. We have exercises to do every day and are looking into an e-stim program
Like the others have indicated, you can send me an e-mail if you have more questions!

Bob (father to Alex, 3 ½ L-OBPI)

[admin]

Bob,

Thank you for sharing so much. I especially appreciate your sharing the opinion of there being many fine doctors out there and that there are multiple things to consider. I think it is important for us to support each other and acknowledge such things.

thank you