United Brachial Plexus Network, Inc.

I'm looking to hear from people who have had primary surgery experiences with Dr. Shenaq at TCH. How comfortable did you feel with the information he gave you prior to surgery? What was said or done while your child was in surgery to ease your mind? How were things handled after surgery so that you were well informed on what to expect in the future? Please let me know. Thanks.

Hannah had primary surgery at 6.5 months. Before surgery she was seen in there clinic by Dr. Laurent, Dr. Nelson, Dr. Nath, and a few others. Dr. Shenaq was suppose to be there at clinic but he wasn't. I think as far as the clinic visit and information given to a parent that it happens about the same whether it is Dr. Nath or Dr. Shenaq operating. Dr. Laurent will also be operating on your child also if they are having the primary surgery.

We were very comfortable with the information we were given at clinic the day before surgery. Dr. Laurent drew a sketch of what he thought was wrong with Hannah and how he thought things would proceed. He was 100% correct. I felt comfortable going into the surgery that surgery was needed. We did not have an EMG at the time. I had full faith in the doctors. The day of surgery you will hand your child over to the nurses before you get to the operating room. Once they are in the OR then they will call you and let you know that surgery has started and everything is going well. After the first part of the surgery (Dr. Laurent) he came out of the OR and spoke with us and told us what he did and what Dr. Nath was going to do. In your case it would be Dr. Shanaq. After surgery is over you will meet with the surgeon to get the results of the surgery. After surgery we were told bluntly that Hannah's surgery went well. No problems come back in 6 months for the MQ. I was a little shocked at the time but they were correct and we were back in 6 months. They will also tell you that the results from the primary will take awhile to see. They are correct it took a year for us to see Hannah fully have use of her bicep. She is doing great now. Feel free to e-mail me with any questions.

Lisa

Dear Janelle:
Dr. Shenaq (along with Dr. Laurent) did Juliana's primary surgery almost 4 years ago.
He was incredible. She had a severe injury and he (they) did a fabulous job of grafting. Her recovery is great.

As for info prior to surgery..well, you have so much more now than we did 4 years ago...this website didn't even exist! We met every doctor up there in one day and our heads were spinning. My husband said to me at one point "if one more person asks me if I have one more question...I am going to implode!!!" So many docs, so many questions. We just KNEW we were in the right place.
During surgery, we were called to the phone every 45 minutes or so and spoke with our nurse. She gave us updates... Then, after they had openned her up, and looked around and tested the nerves, he came out and we stood by the waiting room while he explained the drawing he was holding in his hand. It was a drawing of her nerves as they looked: ruptures, avulsion...
He gave us the opportunity to close her up and hope for the best or to let them continue. A no-brainer for us...we continued. The surgery took 9 1/2 hours, but I would do it again and again.
Juliana needed the sural nerve harvest, so she had stitches in her leg. She popped the stitches in her ankle and the nurses paged Shenaq. Dr. Armenta came down instead (he is fabulous...) and HE called Dr. Shenaq and then Dr. Shenaq came down. He was so great about it. Based on our conversation, we let it go. It is the only "ugly" scar, but it is in the folds of her ankle.

As for the future...no one has a crystal ball. We were not led to believe that Juliana had the possibility of the level of recovery she has. We were always told to be measured in our expectations. She exceed ALL of their expectations (and ours). So, the future is an unknown. You are better off taking things one day at a time. Handle the surgery, learn to care for the scars. Learn to make everything therapy!!! Get a the best ot and pt. We all want to know exactly what road we will take. But we don't. And noone can tell us what that road will be.

That being said... most kids who need primary, need mod quad too. So much has changed recently, though. Now they are combining mq and acromioplasty...

I recommend that you write down your questions in a little note book and write down their answers. You can then go back and ask more questions.


Good luck, you an email me if you have more questions

claudia

We had Dr. Nath and for the most part our experiences match what Lisa and Claudia wrote to you.... I was really worried about how they would administer the anesthesia - I didn't want anyone mashing a mask on her face (a trauma I had when I was 4 and haven't gotten over it) - I asked them to hold her and let her smell the "strawberry air" slowly. A nurse took Maia in her arms and I just know that she took care of her. Within 15 minutes I got a note from the O.R. that the nurse wrote to tell me that Maia was asleep and that she was held and was never fearful and that she fell asleep in the nurses arm while just sniffing the strawberries. I was so touched by this letter - I still have it and I might just frame it. We were taken aback by their kindnesses.

The next surgery Maia had was on a hell week for all of them and it was one communication mess after another. The next two surgeries Maia had there went great and very smoothly and were even better than the first experience we had there.

Dr. Nath is Maia's surgeons but we have seen Dr. Shenaq at clinic for evaluations - his evaluations always matched what Dr. Nath said (without even knowing) and he always spent a good amount of time with us.

-francine

Not to get off subject but reading that this website didnt exist 4 years ago took me back a bit. I've been coming to the epirg/ubpn message board for 6 years and i know was up and running before I found it too.

Other than that I agree with Claudias comments regarding Dr. Shenaq. We trust, respect and appreciate him.

Dear Guest:

Yes...it was the epirg message board back then. Not the ubpn... and the information was had was so primitive compared to what we have now. We are all so much more educated. I can't believe how quickly things have moved forward. I think it is great!

Mostly, back then, we talked about how we felt. The clinical stuff was secondary. Now it seems it is the clinical stuff that people talk about and not so much how they feel. I remember many a night I sat on these boards crying, reading what people said, finally having "met" people who knew what I was going through.

And it does feel like a lifetime ago.

claudia