Patient Case Studies
Re: What Future Holds
beth on 05/31 at 11:44 AM
Hi- I know it is difficult to make the decision about surgery. It would be easier if your child were old enough to consider all of the risks and benefits and make the decision. But the reality is that we as parents have to do all of that hard work for awhile. Kylie had quad surgery at TCH last September. She was 31/2 at the time and she did so much better than we thought she would. She never complained the whole 12 weeks that she had to wear the Statue of Liberty splint. She has gained an incredible amount of mobility from the procedure. We noticed the other day that she was painting with her left hand - we never expected that she would have so much dexterity.
She uses her left arm a lot more now. Before she would mostly hang it at her side and forget she had a left arm. I am sure some of the outcome of surgery depends on how severe your child's injury is. It also depends on the skill of your surgeons and depends on the parents doing the home program with the child. We were told by another clinic that Kylie was not a surgical candidate. We sent a video to TCH and were surprised when they called back to say they could help. It is no small decision to make to put your child and family through the trauma, discomfort, emotional highs and lows and not to mention the financial strain.
Our decision was based on the fact that we want to do everything we can for Kylie. We don't want to wait until it is "too late". She will encounter enough problems even with the corrective surgery, but hopefully correcting as much as we can now will make the problems more minor in the future. We are pleased with the outcome, and are possibly considering one more surgery if Dr. Nath feels it will significantly help - we have to send another tape in a few weeks.
I hope this helps a little. The decision happened to be the right one for us, but you really never know until you do it. We support parents which ever route they choose to go with their child's treatment. Too bad we don't have a crystal ball to look in, huh?
Good luck and hang in there- Beth
Re:Mod Quad or not?
Lori in Louisiana
on 06/03 at 04:21 PM
I think more medical opinions would be a great idea. Also, have you shared your concerns and questions with Dr. Nath? Really, I mean it's understandable that you don't want to have unnecessary surgery performed on your son. Also, take into consideration, not just the function of the arm, which seems to be improving greatly, but also the appearance of it. By this, I mean does he hold it abnormally? Kids can be really cruel, especially when another child is different. The secondary surgery should also help with the child's positioning of the arm, how he/she holds it. I can understand your concern, because my daughter has bilateral brachial plexus injuries; BOTH arms are injured.
She has regained an unbelievable amount of movement and function, including raising both arms above head, and feeding self with either her fingers or spoon/fork. BUT, she cannot turn palms up, and holds both arms with elbows bent, sticking out to the sides. Believe me, I think about this every day. I still wonder, if she should have the secondary surgeries. I think about how beautiful she is, and then I think about how cruel kids are. dread the day someone makes fun of her because she looks different, because of the way she holds her arms. She is only 15 months old, and is scheduled for secondary surgery in August and then again in December (one on each side).
There definitely is a greater window of opportunity, as compared to the primary surgery, but I think that IF it is going to be done, sooner is better. OK, so I'm getting a little long-winded, but in summary, I would discuss this in great detail again with Dr. Nath. And think about the future. I don't ever want my daughter to ask me why we didn't do all that we could when we could. May God help you and all of us to make the right decisions........ Meaghan's Mom.
Re:too early for surgery?
on 07/24 at 04:54 PM
Before I say a single other thing, Believe in Dr. Nath. He is a miracle worker, put on this earth to right an injustice that is done to them at birth. What he has done for our daughter is immeasurable in terms of giving her a normal life. My Daughter did not have her first surgery until seven months. She still had pretty good recovery, but I now know from what I have learned since then, that the sooner you can get surgery, the better the chance is for a better recovery. You see, aside from actually enervating the muscles, which is important, Dr. Nath is offering you the chance to get that arm useful before Joshua (my son's name also, but it is my daughter who is injured) learns to live his life without it.
You see, kids are incredibly adaptable, and you want that arm to be available to him to the best of your ability when he is ready to use it! Kelly Anne has lots of "bad" muscular habits that she formed as she developed. Some of these stick with her even though Dr. Nath has been able to give her the ability to do things more correctly. I have to agree with Kimberley whole heartedly. Dr. Nath will be completely honest with you and they won't just get you in there and say "yup..let's take him to surgery". The team will evaluate him and they will tell you what they suspect and what they think is the best course of action to take. From there, it will be your decision.
Can't wait to meet you! Peggy I trust Dr. Nath completely and whatever he says for Emma is a "GO" for me. I constantly pound the poor man with questions--especially when I see someone post a message about a new procedure for their child-- & asking if this could be done for Emma. He takes the time to respond and explain & I should realize that he would have told me before hand if it would have benefitted her. Dr. Nath is a special kind of person and physician all rolled up into one amazing individual. Trust him. He won't pull any wool over your eyes. Once you meet him in person you will feel more comfortable with him and what he has to say.
The program in Paris, France--where these surgeries to repair bp injuries began long ago--is more aggressive in treating injuries than TCH and prefers doing them by 4 mo. of age. TCH recommends 4 to 6 mo. If Dr. Nath recommended 3 mo. of age, trust in him. If, by God's will, your son shows incredible recovery by 3 mo., you can always postpone surgery. However, an infant that doesn't recover fully by 4 mo. of age is, statistically, unlikely to fully recover by the age of 5. This info. came from an article I read recently (maybe in the last Outreach Newsletter).
Some of these little angels who are severely damaged require a couple of nerve grafting surgeries. I hate to alarm you but perhaps Dr. Nath wants to get started early so enough time is set aside for any future nerve surgeries. When we were in Texas for our primary surgery there was a little baby girl there who was having another nerve grafting surgery. She had extensive damage and no movement prior to her first surgery.
I'm so sorry your son is injured. You'll have to be strong for him. There have been many of us blessed with the knowledge necessary to make a decision for surgery that will allow our children to grow up with less pain, less deformity, and greater opportunities.
God has blessed Dr. Nath and the other surgeons with the skill necessary to undo a horrible injury.
I know you are talking about babies and small children but I wanted to comment on older children too. I think TCH is very sensitive to what ever you want. My son hates having the mask put on his face and he told them at the prep time that he didn't want that. He said he would prefer getting the i.v. first then be put to sleep like that. Of course not all children could do that but shots don't seem to bother him. The staff there were a little bit surprised but said o.k. I have also had another mom tell me they had her son blow up a balloon with a flavor in it and he was out. They really seem to want the best for the kids. They don't want them to be traumatized.
That is a big advantage to going to a children's hospital. They work with only kids!! When Jameson went into surgery he was laughing and flirting with the nurses!! Of course they started flirting first!! Anyway, good luck to you!
This was one of my Biggest concerns for Jenny as well. And yes, they can give them something before!! About 15 minutes before they took her, she took a liquid medicine that made her kinda out of it. She was actually quite funny(like she was drunk) & even SMILED at the doctors when they came back in!!! She was still awake but so out of it that she did not care a bit when I handed her over!! It all went so much smoother than I ever expected!! It definitely made it easier for her and I both!!
Dear Kimlyn I would just like you to know that just because everyone boasts about TCH does not mean that parents do not research other areas that might be capable of providing care for a BPI. When I came upon this site I saw the abundance of support for TCH, I wondered what all the hype was about. I went to the resources page and printed off all the hospitals listed. I contacted a physician in NY, one in FL, and TCH. I also went to the local pediatric neurosurgeon in our town. We took our daughter to FL and Houston. I and my husband knew without a doubt where we wanted to take our daughter.
Once we visited Houston, we knew that they were the ones we thought would best care for our daughter. I then FOUGHT FOUGHT FOUGHT for approval with the insurance company. However, if we had not been successful I would have moved heaven and earth to get my daughter the best care that I thought was possible for her. Even if it meant going in debt forever. So don't assume that us parents out here are not checking our options. And after having visited two BPI clinics and calling a third there is no doubt in my mind which one I would recommed to a parent.
October 17, 2001
The purpose of this letter is to request authorization for me to perform surgery on Melissa Reidel for her severe brachial plexus injury.
Ms. Reidel is a young woman who has suffered a severe left brachial plexus injury as a result of a motor vehicle accident. This type of injury is unusual in its severity, because avulsions of nerve roots off the spinal cord are probably involved. This requires very aggressive surgical management for any function to be possible. I am a brachial plexus surgical expert, one of only 2 or 3 in the United States.
The problem is magnified by Ms. Reidel's relatively dense paralysis and late time after the initial injury. If she is to have the possibility of returning to work or even to cope with activities of daily living, she must have at least some use of the injured arm and hand. Ms. Reidel will require multiple nerve transfers to restore function of the deltoid, supraspinatus, infraspinatus, and biceps muscles which currently have 0/5 function to my examination.
The applicable CPT codes are: 64861 x 4; 64874 x 4; 69990 x 4; 64713 x 4. Please do not hesitate to contact me with any questions or comments you might have.
Rahul K. Nath, M.D.