A superb doctor in NC (A story of successful surgery – a long post) Part 1

[jamesc777]

A superb doctor in NC (A story of successful surgery – a long post)

Our 15-year-old son, James, (to be 16 tomorrow), had a successful scoliosis (T4-L4) surgery on Thursday, 5/31/2007, and came home yesterday (Monday, 6/4), after 4-nights of hospital stay. And we (mother, Erin; father, Owen) had the first restful night in the comfort of our home last night.

James was diagnosed with scoliosis on 11/10/2006. Until that day, during the annual checkup, when his pediatrician pointed to big hard lumps on his back—one on his upper right and the other on his lower left—we had no idea he had scoliosis. We scrambled to have his x-rays taken and see the doctor on the same day, fearing the worst. When we found that it was scoliosis, and nothing else, we actually breathed a big sigh of relief.

The office of his pediatrician normally had been referring their patients to another scoliosis doctor. But that day there was a person who knew Dr. Lloyd Hey in our area (Raleigh, NC). Even though he was an out-of-network doctor (we have high-deductible insurance that prevents us seeing a doctor except annual checkups and real serious situations even for in-network doctors), we went to see Dr. Hey because his office said, “Don’t worry about money, and come right away” and because it was late Friday afternoon and we still didn’t know it was scoliosis and we couldn’t get to other doctors.

We took an immediate liking to this MIT-Harvard-educated doctor. He was warm and caring and compassionate, and we were moved by his personal story of why he became a doctor (a severe injury that required 11 surgeries: see www.heyclinic.com; he told us this after learning that James has aspiration for MIT or Caltech). Dr. Hey said his curves (L42 and T37 double) were not too severe, and told us to come back in 3 months to have another checkup.

On the day of the second checkup (3/2/2007), we were surprised to find that his curves had progressed to L50 and T49, and came home with heavy weight in our hearts after scheduling the date (5/31) for T4-L4 surgery, right after his final exam. We agonized so much in March and April, our minds oscillating between “wait until next year” and “go ahead and get over with it.” Erin read almost every post in NSF forum, we both read 4 books on scoliosis, and got great mental and practical support from this (NSF) forum members, from wonderful people like Sherie and Carmell. Later, we were very excited to find a post by Christina_in_NC, titled “Dr Lloyd Hey – NC,” which said, “My 13 yo daughter had surgery with Dr Hey on Feb. 22, 2007. He is wonderful and did great work. Her curves went from T48, L48 to 0,0! He has a web site - www.heyclinic.com.” Christina happened to live just a few miles from us, she helped us through this difficult time in many aspects. She shared the video of her daughter’s surgery (although it was very difficult to look at her back that was opened up), gave us many tips, and on the surgery day, came to the hospital and stayed with us in the waiting room until we saw the doctor, and the following day visited us in the hospital with her pretty daughter, Erin. My son, who had felt terrible that day with a sinking feeling that he might never recover, found comfort from Erin’s “full” recovery in just 3 months.

On 5/1/2007, we saw the renowned Dr. Betz and his associate doctors of Shriners Hospital in Philadelphia for a second opinion. Unfortunately, James’s curves had progressed more (to L57), and Dr. Betz told us that a surgery was unavoidable. That firmed our minds to go ahead and get it over, and not wait until next year, which we had been considering (had asked Dr. Hey whether it's a good idea, etc.) because of many things related to his school and his health. We found Dr. Betz and his associates and all the people in the hospital were very nice and very helpful to us and the x-ray films they took were very good quality. They are truly doing wonderful things for many children. We asked the hospital to send a copy of x-ray films to Dr. Hey (which they did), and, on returning to North Carolina, went ahead of having MRI done as recommended by these doctors. (Although it was a bit wasteful, we are glad it was done; it's nice to know that nothing else is wrong).

On returning from Philadelphia, from 5/2/2007, we actively proceeded to prepare for the scheduled 5/31 surgery with Dr. Hey, with no more doubts about when to do it. We found our comfort that not only Dr. Hey is closest from our home (just 9 miles), but also his skill and experience are superior through his many practices (he does surgeries 4 days a week) and with continuous updates of his knowledge and skill. We found comfort that Dr. Hey seemed to take the least time to operate, no anticipated blood transfusion (the doctors in Philadelphia told us 4 units of transfusion would be required, and longer operation, and, to our surprise, stainless steel in general). But to be sure that we are not going to regret after it's done, we researched stainless steel vs. titanium after we come back from Philadelphia, talked with Sherie in Texas, who knew a lot of things, and discussed with Dr. Hey, along with other questions. We determined that titanium is much preferable to ss (at least for James), because of less weight, less interference with MRI, more closely mimics the resiliency of the natural bone, and does not emit harmful metal ions (mainly found in this forum: search with “titanium vs. stainless steel). We worried about the “metal memory” problem with titanium that is bent in room temperature, but was satisfied with Dr. Hey’s explanation that lab test in LSU was done in different environment than in real application, in which the rods are firmly screwed into the bones, etc. Besides, we found that Dr. Hey has a knack of bending titanium rods just right for the patient (he loves it as an artist loves painting) and has special instrument for rotating it just right. We were also worried about the quality of the hospital (Duke Raleigh Hospital, which is about 20 miles from the main Duke Hospital), but found that it has all the modern facilities of monitoring. and found, during the pre-op, that Dr. Hey was very much respected by all the staff there, though he no longer belongs to the hospital (he had been a professor and spine surgeon in the main Duke University Hospital). Also, we liked the fact that Dr. Hey was doing everything by himself, with the help of his assistant when a third hand was needed.

(Continued in Part 2)

[jamesc777]

A superb doctor in NC (A story of successful surgery – a long post) - Part 2

(Continued from Part 1)

We went to Duke Raleigh Hospital at 6 am on the surgery day (Thursday, 5/31) with much trepidation. At 7 am, Dr. Hey came with his assistant, and after some talks, prayed and left for further preparation. We were happy to have a top-notch spine-monitoring person (Dr. Hey told us so and her experience seemed to confirm that); she told us each person's position in the OR, which was very satisfactory to us (the scoliosis books emphasize on the importance of adequate facility and experienced staff). We were glad to have the anesthesiologist we talked with during the pre-op.

At 8:15 James was wheeled in to the OR. We were not too nervous partially because we trusted our doctor as well as the hospital staff and because all we could do was waiting, though our antennas were constantly stretched to the OR, what might be happening there. (Owen could even concentrate on his book, and soon Christina came with some food, and a little later another friend of ours came and stayed with us until the surgery was done, going out to bring Chinese food for lunch in the middle; somehow we were very hungry, and we devoured everything she brought us.) At 10.01, we received a phone call from the nurse in charge of communication that the surgery had just started. Around 11:40 another call that surgery was going well, though she didn’t know exactly where it was. Just after 1 pm, another call; the rods had been screwed in and the doctor was doing the bone grafting. At 2 pm we were sitting with Dr. Hey in a conference room, along with Christina (Dr. Hey was surprised to see her there, although we had told him we had met her through this forum). He said that surgery had been finished at 1:45, that it took longer than expected because James’s lumbar section had become very rigid and was resistant to de-rotation. He said something special had to be done, and said he took good pictures and we’d understand when we view them (we haven’t yet). Anyway, he managed to correct the rotation, and the curves after the surgery are L18 and T19, nearly straight to our eyes, and we are very happy (we had emphasized safety than appearance). He said other doctors would have taken many x-rays to find the cause and many of them would have given up and just closed up without correcting it, but his experience with adult scoliosis surgeries had taught him what to do (he says he would be happy if all day long he could just do adolescent scoliosis surgeries). He only took 2 x-rays after the instrumentation was completed. (In Philadelphia, the doctors told us that they do cat-scan after the surgery to see whether screws are all intact; it would be a lot of radiation though.)

Later in the afternoon, Erin came across Dr. Hey in the hospital complex, who was in the middle of another surgery. Around 7 pm, he visited us in the hospital room. And around 8 pm, while going to his car, Owen met Dr. Hey again near the parking garage elevator. The doctor chatted with him a little and drove away in a smallish red car that was parked near the elevator bank. He thought it would be a European car, and he was right A Volkswagen Jetta. He looked at other physicians’ cars that were parked: some Hondas, some Mercedes, some BMWs, some Lexus. His respect for the doctor skyrocketed at that moment. Dr. Hey came to visit us early the next morning (Friday), and also on Saturday (which surprised us), and on Monday morning in his surgical uniform. On Sunday, he sent one of his assistants (PAs) to us.

In the afternoon of the surgery (Thursday, 5/31), we waited in James’s hospital room after the conference with Dr. Hey, still with some worries; finally James was rolled in in his bed around 5:20, heavily sedated and his face puffy with swelling (we had expected a lot worse swelling, because we had read so much about it). The early part of that night was not too difficult because he slept most of the time, but at 2 am he was crying with pain and we didn’t know what to do. The patient-controlled morphine shot was not working well for him, because of the confusion each nurse told us (the nurse during the day told us to have him press whenever he felt pain and the machine would regulate the shot with a 5-minute interval, but the night nurse told us that he had to press at exactly 8-minute interval, etc.). The night nurse was very strict on following the rules and was very afraid to bend what the doctor had ordered. Finally the nurse took away the machine and gave two oxycordon pills after much hesitation and after consulting with her fellow nurses and after much of our pleas, and his pain subsided by 4 am and he fell asleep.

Throughout the 4 nights of hospital stay, James had a few episodes of severe pain when the pain medicine wore out. In the morning of the second day (Friday), he felt nausea and retched some vile stomach fluid. In the early afternoon, two physical therapists came and got him up and made him walk a few steps and he vomited. But after that he managed to eat some jello. Later in the afternoon, they came again and forced him to walk up to the doorstep, where he threw up again. We brought some Chinese lomein, which his picky tongue favors, and at night he ate quite a bit of that. Encouraged by that we brought more lomein the next day (Saturday), and tried to make him eat more, along with the hospital-supplied food, but with his stomach bloated and with his picky eating habit, he refused most of the time. In that (Saturday) morning, after oxygen and IV and the bladder hookup were all disconnected, a physical therapist came and had him walk down the corridor, but because of the nausea he came back after three doors down. In the afternoon, he came again, and this time James toddled much farther with a metal-frame support in front of him and even slogged up and down the stairs made for physical therapy.

That night he tried to have his bowel movement and sat for a long time on the commode, but nothing but urine came out. The following (Sunday) morning the same thing. But all the senses on his limbs had returned now, he could get down from the bed with some help, and with the therapist and with us he could walk around without any support. Late at night, much to our relief, he finally had bowel movement, twice, but he was having diarrhea now, probably because of the laxatives. (We had worried so much about constipation that we asked the nurses to give him laxatives, many times.)

The 5th day in the hospital (Monday) started with severe pain around 8 am, after Dr. Hey and his assistant had visited us. All his pain-medication had worn out simultaneously. But the nurse wanted him to eat something before she gave him the pain medicines to avoid nausea, and we had him come off the bed and sit on the recliner; he did as he was told even though he was in pain. After the medication, he had just returned to his bed, still in severe pain, when the primary physical therapist we had on Friday suddenly appeared. We begged her to wait a while, but she wouldn’t listen to us and made him walk down the corridor; he did with tears all over his face because of the pain. She later came back at 2 pm, just before James was discharged, and this time she was gentle with him.

With James in the front passenger seat, we came home around 3 pm, after driving 9 miles at a speed of 30 to 40 MPH on some stretches of the road that have the speed limit of 45. (There were a few cars behind us at times, and probably they had cursed us for driving slowly.) The front steps of our house were not too difficult to navigate, and we were finally in the comfort of our home.

Overall, it all went very well. The hospital staff (the nurses and nurse aids) was all very kind to us and tried to help us in many ways within their guidelines. Although we are still not out of the woods, the heavy weight in our hearts has been lifted now, with smaller things in life replacing them. The scar on his back is 15 inches long, and nearly straight and clean, though he has a long way to go to be without pain, to move around freely, and so on. We thank God, and we thank our wonderful doctor.

Thanks Sherie for staying with us all through this, constantly checking up with us, giving us advices, and trying to connect us to others. We hope we are able to do the same for your daughter’s surgery, scheduled in November. And Carmell, despite many of your problems, you helped us a great deal; you were always there whenever we needed you. We specially thank Christina for providing us all the practical support, and Renee and Joe for your advises. You’ve all became very good friends to us, although we don’t speak perfect English (we are first-generation immigrants; came from South Korea in 1972 and became citizens in 1977). We appreciate all the forum members who have helped us and we hope we can extend our help to others as well.

[CurvySAT05]

I am sooo pleased to hear that James is doing well and is back at home. Hopefully mom and dad are getting some rest and recovery will continue without glitches. It is great that you got to meet up with Christina and Erin for support thought this process. Keep us updated on his recovery.
Mandy

[Carmell]

Owen, Erin and James,

Thank you for sharing your story with us. I'm very happy to hear James is home resting now. I hope he has many GOOD days ahead. I pray for no setbacks in his recovery and that he has a smooth and uneventful one. It's amazing to look back and remember the huge anxiety we parents have before surgery. I hope all of you are getting good rest at home and are able to relax finally. Keep up the good work and let us know if we can help with anything.

[MATJESNIC]

Thanks so much for that detailed description of your son's surgery. Christina is amazing and has offered her home to us, complete strangers, if we need it.

I had so many questions about my appt in Phila, and then I read that you had been to Shriner's and you were able to explain some of the differences.

Still not sure what to do. But you have no idea how much your post has helped. I wish your son a speedy recovery. God Bless.

[Sherie]

Hi Owen and Erin

I'm glad James is doing well and you're happy with the outcome. I know it's been a tense and emotional time for you especially since this was rather sudden that he required the surgery. It brought tears to my eyes to hear James was being pushed so hard that he cried, but it sounds like that is past now and he's going to be fine. I'm glad I was there to be a friend and I look forward to you're advice and wisdom as we venture down this road. Talk to you soon.

[jamesc777]

Sent you a private message

Thanks so much for that detailed description of your son's surgery. Christina is amazing and has offered her home to us, complete strangers, if we need it.

I had so many questions about my appt in Phila, and then I read that you had been to Shriner's and you were able to explain some of the differences.

Still not sure what to do. But you have no idea how much your post has helped. I wish your son a speedy recovery. God Bless.

Melissa, I sent you a private message to see whether there is anything I can help through email or phone calls. Best wishes, Erin

[laurieg6]

Wow, what an intensely emotional experience you've all had. I'm so glad James is well on the road to recovery now. I really appreciate you sharing everything about your experience with this forum, from the diagnosis through your decision-making process regarding which doctor to use, & the hospitalization & surgery. I feel so much less alone with my own son's upcoming fusion when I read about other people's kids' fusions & how successful they seem to be. I've been on somewhat of a rollercoaster of emotions (panic) dealing with this issue & I've felt very alone with it. I'm in Seattle where people don't seem to emote as much as back East where I'm originally from. Reading about how other people are coping really seems to strengthen my coping skills about the surgery. Plus, I'm noticing my son's back more. He wore a TLSO brace for almost 4 years & was told he could stop wearing it by his new Dr. But I think the brace really helped keep his back muscles flatter. I'm really seeing the scoliosis & poor posture more now that the brace has been off for a while. So, I'm realizing that the surgery will be a good, helpful thing for my son. Even though he's still young & sort of small for his age, he'll be better off with a straighter spine. Because of his hemivertebra, he won't get the greatest correction but he will get stability & some correction & will be much better off for his future.

So, thanks Owen, Erin & James & everyone else who is sharing so much of themselves & their kids scoliosis stories on this forum & helping me so much.

[jamesc777]

I can feel what you are going through, Laurie

It's a tough decision for any parents to make and the process is often very lonely. No matter how much you hear about successful stories, final decision is a bit scary because there are no guarantees and you are the one who makes the decision that will affect your child's future most dramatically. You will find many wonderful people in this forum who will try to help you any way they can. If there is anything we can be of help, please let us know. You can send me a private message with your email adress or phone number.

[wbtori]

What an amazing story! Thank you for sharing it. Best wishes to James for continued healing and a fast recovery.

Our 14 y/o autistic son, MJ is having surgery June 20th. You all know well the emotions both he and I are feeling. I was mesmerized reading your post. Learning things I wasn't aware of like facial swelling, which we can now be prepared for. Also, we need to learn about using a PCA pump. MJ needs us to be his voice since his communication skills is a major challenge for him.

What a blessing to have such good support while James was in OR. A major concern of mine is how me, husband and two adult daughters will handle the intense stress of the day and beyond. My confidence in his surgeon helps get through the hard times -- most days. I hope communication between OR and us during surgery is comparable to Duke Raleigh. They are awesome!

Has James' appetite improved since he's come home? MJ is also a very picky eater. He's 5'4" and weighs about 100lbs.

Well wishes to James!

Wanda

[sam_newyork]

thanks for the posting

Thanks for sharing your experience. My daughter is scheduled for a surgery next week on Wednesday at HSS with Dr. Boachie. Your posting was very encouraging.

Sam

[MATJESNIC]

All the Parents on this forum who have shared their knowledge have been amazing. Do you know that so much of what the nurse was explaining to us (including the facial swelling) I already knew because of all of you.

[jamesc777]

What an amazing story! Thank you for sharing it. Best wishes to James for continued healing and a fast recovery.

Our 14 y/o autistic son, MJ is having surgery June 20th. You all know well the emotions both he and I are feeling. I was mesmerized reading your post. Learning things I wasn't aware of like facial swelling, which we can now be prepared for. Also, we need to learn about using a PCA pump. MJ needs us to be his voice since his communication skills is a major challenge for him.

What a blessing to have such good support while James was in OR. A major concern of mine is how me, husband and two adult daughters will handle the intense stress of the day and beyond. My confidence in his surgeon helps get through the hard times -- most days. I hope communication between OR and us during surgery is comparable to Duke Raleigh. They are awesome!

Has James' appetite improved since he's come home? MJ is also a very picky eater. He's 5'4" and weighs about 100lbs.

Well wishes to James!

Wanda

Hi Wanda,

I think I know what you are going through. On the surgery day, I thought I would be scared stiff (I am the one who gets most scared of these things because I lost my mother in my teenage years in a car accident), but before James was wheeled in to the OR, there wasn’t any time to think about anything and after he was wheeled in I was calm because there was nothing I could do except waiting and getting anxious wouldn’t help anything. After sometime I started to read a book (which I attempted a few weeks and even a few days earlier but nothing had come into my head), and was even able to concentrate most of the time.

During the hospital stay, I recommend that you and your husband or one of your grownup daughters stay in the hospital room. And avoid having many visitors in the hospital room; they would be mostly distraction to you. Normally, just one person’s attention is required, but you are so tired with lack of sleep that it is difficult without another person’s support. Even though our home is close, I just came home once during the whole time and took a short afternoon nap in my bed and went back to the hospital, while Erin, my wife stayed in the room the whole time. I had to go out to buy some food (the hospital provided a tray for James and another for Erin three times a day and since James didn’t eat most of the time, they were mostly sufficient for both of us, but still we wanted to supplement and buy food whatever James might want to eat, though the nurses were willing to give James whatever they have available) and bring things from our car, etc. On Sunday and on Monday morning, the orthopedic wards were mostly empty, so I stayed at the room across James’s and read the book; the nurses let me do that, and I didn’t disturb the already cleaned room and didn’t even use its bathroom, though probably they wouldn’t have minded.

Only other things are to monitor adequate pain control (but not to overdose) and monitor nausea. The pain medicine makes him feel nauseous. You can ask the nurse to give him anti-nausea when he feels nauseous, but I think if MJ feels like throwing up, he would feel better after he throws up.

Also I would recommend you to do small things you can do rather than asking the hospital staff doing it. For example, I myself did the cleaning of the commode bucket even though the nurse asked us to call her. They are human beings, and they would appreciate those small things. One caution is to make sure to lock the wheels of the bed and the recliner before you make your son move on or off of them. James nearly fell off to the floor when he tried to get up, even with our help, during the hectic time of Monday morning just before the physical therapist showed up) from the recliner that was not locked. And make sure MJ uses long-legged commode. James still uses it at home.

James still has problem eating and lost some weight after he came home (his weight had increased after the surgery, with the hardware and the bloating of his stomach). Mostly his stomach is still bloated, and sometimes he feels nausea. Since yesterday we cut down his pain medicine quite a bit, and last night he drank a quite a bit of seltzer water, and burped the gas out somewhat, and he feels a little bit better. It seems that he tries to eat to please us, and it makes his stomach feel worse, and we told him that he shouldn’t do that. During the hospital stay, his blood pressure measured 80 over 48 one time (his average was 105 over 60, sometimes even 90 over 50), and the nurse came back a few minutes later his pressure had returned normal. James was 5’6” and weight around 95 pounds before the surgery. His blood loss was 1 liter (1,000 cc), the cell saver recovered 500 cc, and during the first one or one-and-a-half day, it seemed like additional 200 or even 300cc drained from his back. So the blood pressure and blood count was concern to us. In the early morning of the second day in the hospital, the nurse drew 3 vials of blood for the blood count (one thrown away because the first one is mixed with chemicals—this is normal procedure, we learned). Apparently the blood count was okay. Otherwise, they would have drawn more blood the third day.

I hope this helps. Let us know if you have anything we could help you with.
Best wishes for MJ, Owen

[wbtori]

Owen & Erin,

Thank you for your well wishes! Your posts offer information and tips we find so helpful. And you're right... getting anxious won't help anything. I'll bring along several things to do to help us pass the time. I've put a flag in our 'hospital log book' to monitor nausea, and lock the bed/recliner wheels.

We plan to do as you and Erin did. One of us will be in his room at all times. Today we saw MJ's pediatrician for pre-op clearance. He recommended this too. He said as MJ is autistic he's unlikely to push the PCA button at the right intervals. Tomorrow we go to Mt. Sinai for its program to prepare children & families for surgery. We'll ask specific questions about the PCA then.

While in college, my husband was an orderly in a hospital and nursing home. He'll be helpful to the nurses in those small things you mentioned.

I'm glad to hear James is able to reduce the pain meds and get relief from gas and bloating. We'll also try offering favorite foods when he's ready as an incentive to eat. MJ has lost two pounds. He also has colitis.

Good. James' blood count is normal. Did James take iron and/or Procrit pre-op? MJ has been on iron and weekly Procrit shots for three weeks now to build up his blood. He gets the last shot right before surgery. My husband and daughter are donating blood for him tomorrow.

Blood drainage is news to me as well. So glad you brought it up.

Best wishes to your family and a speedy recovery for James.

Wanda

[jamesc777]

Wanda,

James had calcium pills for about 3 weeks before the surgery. He didn't take anything else, no iron pill because we had worried about constapitation. So far he has lost much weight after he came home, hopefully he will be able eat some today.

MJ would probably not want to eat before his stomach has awaken, but make sure you don't try to give him while it's still inactive. The nurse can tell you when it's good to give him something.

If there is anything you don't know, don't hesitate to ask the nurse. We didn't know how to close the aluminum blind that were enclosed between window panes inside and out, until the nurse showed us. You might want to bring some warm clothes, even sweaters for yourself.

That's all I can think of now. Best wishes for MJ, for you, and for your family.