Thank you for visiting the Center for Cerebral Palsy Spasticity message board. This forum is intended for patients and parents of patients who have had or are considering the selective dorsal rhizotomy procedure. Messages are received and reviewed by the Center’s staff, are screened for appropriateness of content and are posted to the site. Although messages are not posted instantly, we make every effort to add them in a timely manner.
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Our Experience at St. Louis Children's Hospital
Email: ucfinc@aol.com
Comments: I have a grandson Dylan who will be three in July. He was diagnosed with C/P early on. He has been undergoing intense therapy for quiete some time now, and has recently undergone Botox treatments which has helped immensely. Like a lot of the children I have witnessed with this condition.He has a very intense willpower, and desire to be like everyone else.I would like to ask the parents of some of these kids that have experienced this condition. Reach out to this amazing mother that also has a twin son named Preston,and a daughter Olivia who is now four.As the father of this amazing mother I do not know most times what to even say.(Having not ever experienced anything like this). As a parent you try to prepare your children for anything life offers up, but how would you know how to ever prepare them for this.I will not disclose this mothers name, but if there are some parents out there in this similar circumstance that can offer support or experience's that can help these two amazing parent's in their quest to make this child's life as normal as his other two siblings.This grandfather would be forever grateful to all. her e-mail is jyork624@hotmail.com
Jj as always you never cease to amaze me and as always I am still your biggest fan.
Love Dad
I hope and pray that St. Louis Childrens and Dr.
Park can help Dylan as he did Leely.
Message -- February 3, 2009
Email: rosepointer@cox.net
Comments: My 5 year old son had SDR surgery on 12/9/08. He walked independently without an assistive device prior to surgery with noticeable gait disturbance. He utilized a w/c while in the hospital but once out of the hospital he refused the w/c. He is very strong minded. He was serial casted for several weeks after returning home following surgery. He is now walking heel-toe with his left foot and with his foot (not toe) with his right foot. Even though, he has mild tone in his right foot below his ankle that is being addressed 5 days a week in therapy, just seeing my baby walk with his feet on the floor as opposed to up on his toes is amazing to me, my family, friends, and everybody who knew my son prior to surgery! Dr. Park is amazing and we thank him for improving my son's quality of life!! I would recommend Dr. Park, the hospital, and therapists to anyone looking to improve their child's life with CP. Our experience at the hospital was impeccable!! Nurses, therapists, and everyone was very friendly an eager to make my baby's stay there as pleasant as possible. We are looking forward to our follow up soon. My son now loves hospitals! Hopefully, he will be a neurosurgeon when he grows up and help kids with CP too.
Message -- June 15, 2006
E-mail Address: hamtrio@aol.com
thank you to dr parks and everyone at St. Louis Children's Hospital. we had such a wonderful experience at the hospital everyone at the hospital could not do enough for us. my dd had sdr in 2/06 and we just went back for her f/u . she is doing really good and is gaining more strength everday. if any one who is considering the surgery w/ dr parks and would like to ask me any questions please feel free to email me. just write in the subject line what you are asking.
Message -- April 6, 2006
E-mail Address: Lisa.Lambert@Verizonwireless.com
My 4 year old son, Larry had SDR performed on 3/28/06 by Dr. Parks. He has been home for less than a week now-and he is crawling, and even starting to walk again. His legs feel incredible-the stiffness is gone! He has not taken any of the pain medicine that we were sent home with and is fairly pain free. Incision looks great. The entire experience in dealing with Dr. Parks and the hospital was incredible. Dr. Parks is amazing and I wish every child with spactic CP-or any CP that is eligible for this surgery has the opportunity to have this procedure done by him. We almost had the procedure done in Pittsburgh, but changed our mind-and decided we needed our son to be in the hands of the best! I do believe that God lead us to St. Louis! Our PT back home-who has seen SDR patients before, is amazed at what he is doing-so soon...I attibute that to his wonderful attitude and of course Dr. Parks. Lastly, I also wanted to mention, I as well noticed a big difference in his speech immediately after surgery. He communicated very well, prior-however, now he is much more detailed and clear! Thank you St. Louis Childrens Hospital & DR. Park.
Message -- March 6, 2006
Isabel, as well as her moms, received extraordinary care at St. Louis Children's, with any new question that we had, or any questions we needed answered a second or third time, promptly, gently, and professionally addressed. Once at home we were able to find answers by re reading the materials you had given us. Very thorough. The first day we were home Isabel could only crawl about a foot before tiring. The second day she did about twice that and by the third day she was scooting across the hall from her room to ours-about 8 feet. She alternated between a bunny crawl, alternating left and right leg and a combination of the two. She just hasn't figured out yet that typical crawling is easy now but she will. It took her 5 nights before she could re position herself in bed at night an by the 6th morning she got herself out of bed (its about 6" off the floor). She couldn't get up high enough on her knees to turn the door knob and open the door but another day or two and she'll have that as well. E-mail Address: cgriffin27886@yahoo.com
My daughter had SDR on 12-06-05. From the moment we walked into the hospital until the moment we left it was a very wonderful experience. Not only did everyone take care of my daughter, but of my family. Thank you is not enough for the support and encouragement we received. The nurses in PICU and on 12th floor were wonderful. (Carla....Elizabeth says to tell you hello). Thank you to the therapists, and of course, Dr. Park. All of you will forever have a special place in our hearts.
Looking for a Physician in My Area
Message -- June 11, 2004
Hello! 16 month old son with DP -spastic diplegia in Southeast Michigan. Looking for recommendation of Doctor or looking for parents in area who can suggest doctor to perform SDR. TLR
Great Improvement After SDR Procedure
Initials: L.D.E.
Email: jonesfamily@att.net
Comments: I was just reading all of the postings about SDR with Dr. Park. I have a 17 year old son who has mild C.P. He had his surgery with Dr. Park when he was 5 years old, 12 years ago!! I can't believe it! He went from a child with braces who fell every ten steps.... to a 17 year old High School Junior who plays Baseball on the school team and
a select SLABA team in the summer! He is actually a pitcher and a first baseman. There is NO doubt in my mind that Jack would not be capable of this if we had not chosen surgery with Dr. Park! I highly recommend this procedure, it can change your child's life.
Message -- December 9, 2008
Email Address -- jeffrylyn@aol.com
We adopted our daughter at 4 months of age from South Korea. She was diagnosed with CP at the age of 1. We had SDR with Dr. Park in May of 08. Pre SDR she was using a walker but with some difficulty in endurance and SEVERE toeing in, no balance either. We are now 6 months post SDR and she is walking SOOO much better in her walker, almost no toeing in or tripping. She is walking in canes across the room and we have hopes that this will become her standard mode of walking in the next year. She is also taking steps on her own, these are labored, careful steps but they are steps none the less. She has taken up to 13 at a time. We are completely overjoyed that we did this. My biggest regret is that I didn't know about this surgery when she was much younger, because I would have done it! We were handled with love and grace by all the staff in Dr. Parks office and at St. Louis Children's. Truly a first class operation. We came 3700 miles to have this procedure done and it was well worth the effort.
You may contact me with questions at jeffrylyn@aol.com
These message boards helped give me the courage to go to St. Louis and I would like to return the favor.
Message: 8/26/08
E-mail Address: rena@themarketllc.com
My daughter received surgery from Dr. Parks on August 15th. 2008. We were very excited about the surgery and very nervous. My daughter is 8 years old and I was a little apprehensive knowing that she was not the ideal age as most of his patients are younger. It is now 11 days post op and Madison is walking on her own. I am thrilled. We have seen a huge difference in her legs. We had tried several things prior to doing the SDR surgery. Madison has had botox, serial casting, and braces. We were very concerned as her left foot has always been the most trouble for her. Dr. Parks made it extremely clear that the surgery would not treat the heel cord on her left foot but that it would take away the spacticity. Madison's left foot is at a 90 degree angle and we are more than excited. She is so much more comfortable and you can see the proof in her legs. I am so happy that we had the surgery. I am happy for Madison. We were very overwhelmed leaving the hospital and knowing the hard work was about to begin. Madison walking this early is just a sign of good things to come and it can only get better from here. Thank you very much to Dr. Parks and all of his wonderful therapists. Joan, Beth, and Michael. Our family thanks you from the bottom of our hearts!!! Initials: RC
2/1/08 E-mail Address: lzysk@embarqmail.com
Message -- November 6, 2005
E-mail Address: cgriffin27886@yahoo.com
Just a note to let everyone know that we were accepted by Dr. Park for SDR for our 5 year old daughter. Her surgery date is 12-06-05. Please begin praying for her (and us).
Thanks. I look forward to updating everyone after surgery.
Bob Sofield please E-mail
Message -- September 9, 2005
E-mail Address: cgriffin27886@yahoo.com
My daughter, who is 5 years old and has spastic dipeliga. her othro doctor has suggested SDR at St Louis Children's hospital. My little girl only is affected in her legs. She is a kindergarten student this year, rides the "regular" school bus, and takes dance and is a cheerleader. She has no other signs of cp; she had botox injections Nov of 04 and is still reaping the rewards from this. Please email me if you have any words of encourgarment. My husband and I feel this is a step in the right direction but as parents we are also nervous. Thanks in advance and good luck to all of you that have already been through this
Message - July 26,2005
E-mail Address: cabral.d@bcbsri.org
My daugher is 4 and has CP displegia and does not walk. She's a twin who was born at 26 weeks. I'm really considering SDR. She's schedule for Hip Surgery in Sept. but source tell me I should try SDR first. She's had 10 previous surgerys and I'm very nervous about this. any parent out there that could give me guidance is very much appreciated.
a desperate mother
Message -- July 22, 2005
E-mail Address: mailto:dnnvalentine@yahoo.com
.comMY DAUGHTER IS 4 1/2 AND HAS A MILD CASE OF CP. WE HAVE TRIED BOTOX INJECTIONS, WHICH ONLY LASTED A COUPLE OF MONTHS. SHE HAS ALOT OF SPASTICITY IN HER RT.LEG. I TALKED TO HER NEUROSURGEON AT HER LAST APPT. SHE ALSO HAS HYDROCEPHALOUS AND HAD A GRADE 2 INTERCRANIAL BLEED ON THE RIGHT AND A GRADE 4 ON THE LEFT SIDE AT BIRTH. HER NEUROSURGEON HAS NOW SUGGESTED THIS SDR. I AM VERY SCARED TO MAKE THIS DECISION.AND MY HUSBAND, WELL HE'S NOT REALLY GOOD AT UNDERSTANDING THESE TYPES OF THINGS. I WOULD APPRECIATE ANY INPUT FROM OTHERS THAT HAVE GONE THROUGH THIS. THANK YOU.
Message -- May 6, 2005
E-mail Address: jweinstein99@yahoo.com
We have scheduled SDR for our 3 year old son in July. I am interested to know of any long term side effects or complications. If there is anyone out there who had SDR with a 1 level laminectomy more than 8 years ago, I would appreciate hearing from you how you or your child is faring. Specifically, do you feel there is any long term sensory loss, numbness, tingling or back pain. Has anyone known about problems with spinal instability or osteoarthritis? Thank you.
Message -- February 15, 2005
E-mail Address: hstyles55@aol.com
What kind of results does the SDR have? what kind of complations and risks are involved?MGL
Message -- January 24, 2005
E-mail Address: burts4msu@yahoo.com
My son was diagnosed with spastic diplegia cp at age 6 mo. He has made tremendous progress with the help of pt. Currently, he can walk with a gait trainer but scissors his legs frequently. Our pt asked me if I had considered sdr. I didn't know that much about sdr until I came across this web site.
So far all I have read leads me to beleive that my son is a perfect candidate. I would love to hear from any one who has a similar situation and that has had sdr. thank you
Message -- December 31, 2004
E-mail Address: vowell@us.ibm.com
Hello, This is my first time on the website and I found tremendous amounts of information on SDR. I found your comments very comforting for those of you who posted and have been through this surgery. My son is 27 months old and has Spastic CP in his legs. We visited Shriners for the first time in Dec and were told about this procedure. I feel this will be a life changing event for him. he is a Twin but the other twin does not seem to be effected by the CP. They were born at 28 weeks. He cannot sit except in the W position and he walks with a walker. I would like to hear from anyone else that has been through this. I want to make sure we are making the right decision for our son.
Message -- November 30, 2004
E-mail Address: mmanuel429@yahoo.com
My son was recently seen at Shriners Hospital in Shreveport, he has spastic cerebral palsy. It was suggested that he is a good candiate for Dorsal Rhizotomy. I am very interested in hearing from other parents whose children have had this procedure and thier individual results. Thanks! MKM
Message -- July 21, 2004
E-mail Address: stefaniecjacobs@msn.com
Hello, I have a 4 year old daughter with spastic diplegia. She walks independently but as she gets older she doing more and more of the toe and scissor walking. She has some balance and coordination issues as well. I'm not sure what else to do and just heard of this surgery. I would love to hear from others with mild cp to hear your thoughts on pursuing this surgery. SJ
Message -- July 18, 2004
E-mail Address: angiewane@yahoo.com
My child is about to undergo the surgery and I desperately need to hear from parents who have been in my position. Please send me a message with comments or words of encouragement. Thank you in advance for your cooperation. AWG
Message -- July 13, 2004
E-mail Address: tracyrockett@msn.com
I'm in Southeast Michigan with a 17 month old son, a twin with CP Spastic Diplegic. Looking for anyone to share their experience with the SDR procdure to help us make the decision for my son to have SDR. Any responses are appreciated. TR
Message -- May 14, 2004
E-mail Address: karenhac@charter.net
We are considering SDR for our son who is 27 months old. We were told that he would greatly benefit from this surgery. He is an independent walker, who actually walks pretty well, other than some toeing in and some mild problems with balance and coordination. We were told that the surgery would most likely make him walk normally and that he would never need any other surgeries. I am interested in hearing from any parents who were in a similar situation. I would like to know if the surgery produced the results you were hoping for and if you think you made the right decision for your child. Thank-you for your time. KH
Message -- January 30, 2004
My initials are JRW and I have twin girls with Spastic Cp. We are currently considering SDR for both of the girls. I would be interested in hearing from anyone who has already had this procedure for their child. The girls are 3 years old now. Thank you.
Thanks Dr. Park
Message -- April 20, 2006
E-mail Address: jenny_ray2u@yahoo.com
My 10 yr. old son just had the SDR done on April 14,2006. We can already see major improvements with his spastisity. We just found out about this surgery only 6 months ago, and like all parents we were concerned with the outcome of a surgery like this. But our options was getting pretty slim. We tried the botox, not only was it painful for our son the injections didn't last very long. My son only had the physical ability of a 10 month old child, and we felt in our hearts if something wasn't done he may never know what it was like to walk. We didn't want our child to have to be in a wheelchair the rest of his life, and now he has a chance, one he never had before. When we arrived for the surgery on the 14th, he wasn't scared, he was excited and knew this would help him to eventually walk. Now we are on our 6th day post-op and he is doing great.... Before the surgery his legs would jump, now that no longer occurs. To all the parents out there that has a chance for their child to recieve this surgery, it is well worth it. It's like a mircle for a child with CP, and DR. Parks is amazing....he has given my child a chance he would have never gotten without the surgery. I can never thank DR. Parks, the Nurses, PT Therapist, and the Childrens Hospital enough for what they done for my child. I'm forever grateful.....
Message -- March 29, 2006
E-mail Address: trenik4@wmconnect.com
Our daughter, Brooke, had an SDR in May 1994. She did very well after the surgery, and is still doing very well. She is now almost 15 yrs old, and was 4 when she had the SDR. I was just thinking that I'm grateful for the surgery, and cannot imagine how Brooke would be today without having had it! Wouldn't hesitate to do it if we were making that same decision today. Thank you to Dr. Park, and all the staff (which I'm sure has changed a lot since Brooke's surgery!)!! TJG
Message -- April 1, 2005
E-mail Address: doordi66@yahoo.com
My son is 8 yrs post-op SDR and all I can say is that it was the best decision of both our lives. Dr. Park and his team were wonderful. Our whole experience was flawless. My son now walks, runs and jumps, all courtesy of St. Louis Childrens Hospital. I will always be in your debt and wish there was more I could do to thank you for touching our lives in such a significant way. I knew when we met that my son was in the best of hands. If any parents would like to ask any questions or need reassurance of Dr. Park's expertise, please feel free to contact me directly. As a mother I know how hard it is to put your baby "under the knife" but I know that miraculous things are going on at Childrens every day, largely due to this wonderful man, and that means you too Joan! My gratitude will always be constant. Thank you forever.
Message -- May 13, 2004
Our son had SDR preformed by Dr. T.S. Park on October 14, 2003. Matthew was 3 1/2 at the time and has spastic diaplegic cerebral palsy. Matthew walked with a walker before the surgery. We are a little scared about making the decions to have SDR, but knew that Matthew would not progress much further unless we did something. So, we decided on SDR and Dr. Park because the procedure actually seemed the least invasive compared to cutting muscles and Dr. Park is the best ever when it comes to SDR. The surgery went great and the best part was that we were kept up-to- date on how things were going through out the entire proceedure. We didn't have to wonder if our son was doing alright. Matthew's recovery was a piece of cake. He had to use very little medication for pain--usually just Tylenol. He was back in his walker on day 3 post-op and back to pre-op mobility and strength within a month. Now, 7 mos. after surgery he continues to improve. He no longer uses a walker, just forearm crutches. He sits better and stands so much straighter. He continues to gain strength and flexibility and although we have a ways to go, we are confident that he will eventually walk independently. Of course, we had wanted Matthew to walk independently right away and that did not happen. But for the first time in Matthew's life, I can see a real possibility of this happening. We don't regret having the surgery for one minute and if you or your child qualifies, I can't see a down side of having the procedure done. We are forever grateful to Dr. Park and his staff for giving our son the opportunity to have a more independent, full-filling life without pain.
Message -- April 28, 2004
I want to take this opportunity to thank Dr. Park and all those who have given my son, 3-years-old, SDR surgery 2-17-04, a new life. Within 6 weeks post surgery he was taking steps independently and now 10 weeks he is walking across the floor by himself. Prior to surgery he could crawl and cruise on tip toes with muscles very tight. Oh what joy this has brought to us! Another miracle was prior to surgery his speech was limited to "baba," "mama" and "dada" and now he is randomly talking 2 and 3 word sentences and repeating us constantly--I am honest! I recommend this surgery if your child is a candidate and I cannot say enough positive things about Dr. Park and the 12th floor nurses at the Children's Hospital. This has been a life changing experience and my husband and I thank God for leading us to Dr. Park. KP
Message (no date)
E-mail Address: horsewheels8073@yahoo.com
Dr. Park, Thank you so very much! You changed my life for the better on June 8, 1989 when you did the rhizotomy on me. My name is BG. I had the rhizotomy just about 14 years ago. I have Cerebral Palsy. I am not walking, but I am a senior graduating in June from Wright State University in Dayton Ohio, with a communication degree. I am living fully independent, I can do everything by myself except drive and even that I have not given up on. Thanks to you and the Rhizotomy and my parents decision for me to have it, I can go places with my friends and know I can do things independently, and my friends and I can just hang out and have fun. I can also sit indian style and wiggle my toes, and move my hands better and also talk better, all this because of the surgery. Over the years my parents and I have talked about how glad we all are that I had it. A few ago I brought my parents to tears of joy when I thanked them for the decision they made to let me have the surgery. I have an Internship right now at United Rehabilitation Services formally United Cerebral Palsy in their Public Relations Department. I like it very much. It is giving me great experience, and I am also looking forward to graduation with my friends, also a job after graduation. All these things I know are made much more enjoyable because of the surgery. For myself, all of my family, and my friends, thank you for making life easier on me because I can move better, and easier because I can live fully independently, and do everything for myself. I don't want to take too much of your time, I just wanted you to know how much I appreciate you and I just wanted you to know how good my life is. And also to thank you so very much. I am so thankful and happy I had the surgery. Anyway, I better go and study, I just wanted to thank you. By the way I was the very first person who did the one legged back bridge after surgery.
Adult SDR
Message -- 2/22/05
E-mail address: mailto:martydawg@adelphia.net
I had the SDR surgery July 30, 2004. I was 29 years old. Over the past 6 months I have seen a great deal of improvement in my walking, balance and over all muscle coordination. My movements are easier and smoother than I ever could have imagined. In addition, I am able to stand taller, and perform independent movements of my legs; something that without intense concentration was close to impossible before surgery. The therapy sessions were challenging, with 2 hour sessions 4 days a week, but have paid off immensely. My body has been able to learn skills and techniques very quickly now that my brain and muscles "are on the same page." Currently I am back to jogging (faster) and lifting (more) weights...all with a quicker rate of recovery. Now, any tightness or stiffness I feel is alleviated by taking a moment to stretch that particular muscle group.
Looking back on the whole experience I have nothing but positive things to say. Given the choice to do it again I would do so in a heartbeat. I firmly believe that with hard work and dedication miracles are possible. I want to thank Dr. Park, Joan, Rose Anne and everyone at St. Louis Children's Hospital for being part of my miracle. May God Bless each and every one of you.
I would welcome the opportunity to correspond with anyone (young or old) who is exploring the SDR procedure. I can be reached via email at any time at martydawg@adelphia.net.
Message -- April 1, 2004
Dr. Park,
Thank you so much for performing the rhizotomy on me this past August. I appreciate the fact that you are brave enough to perform this surgery on adults and smart enough to see it's efficacy. When I first told people I was going to have this surgery, many p.t.s and a few doctors thought I was crazy. People assume that if you can get from point A to B, than you are "lucky". I am so glad that you are able to grasp how much easier this surgery makes life for those of us who qualify, and bold enough to implement that knowledge.
I don't have to expend near the energy I used to get around. My back pain has diminished tremendously. I am very very grateful. You are truly ahead of your time and I am honored that you performed SDR on me. I am working hard to improve strength, flexibility and coordination. I realize that I have a big part to play in determining how far I can go now. At first, I was a bit overzealous and I think I pushed myself a bit too hard as far as stretching post op. I have surrendered to the fact that since I have been walking with my muscles shortened for so long, it will take time to make really big changes, such as changing the crouching of my gate. I knew, in my head that progress would take time but now I am willing to do the work. I am committed to stretching and strengthening to improve the gate and movement in general even if it takes a few years. I'm only 40 years young anyway!!
Also, I want you to know that Joan Puglisi has been extraordinary in her willingness to help me both pre and post op. She deserves whatever rewards you have to give her!!! Karen in p.t. is very encouraging. And Rosanne is always very helpful. You and your team deserve all of the accolades I can give. I look forward to keeping you posted on my progress.
Thank you so much,
JA
Message (no date)
E-mail Address: jsadal@swbell.net
I had the SDR surgery August 29, 2003. The thing that was unusual about my SDR is that I was 39 (and two thirds) years old at the time of the surgery. I believe this makes me the "geriatric" patient in the world of SDR. The surgery and recovery has been relatively painless. I have had more pain at the dentists office and I would describe that pain as mild. I had surgery early Friday afternoon and was up and walking with a walker by Tuesday. We flew back home on Thursday and I walked off of the plane and used the wheelchair to get through the airport. I only used the wheelchair once after that when I was at a parade because I wanted a seat and did not feel like walking a lot at that point. Nine days after surgery I drove - it would have been sooner, but my mom was staying with me at the time and I didn't want to freak her out. On day eleven I told my roommate that I felt like mowing the lawn and I would stop if I felt it was too fatiguing or painful.
To my surprise I finished the whole lawn - no problem. I also rode my bike with no problem. It's a standard hybrid bike. At this point I have just finished my first post -op appointment with Dr. Park. My gait has improved tremendously. I walk faster, yet smoother. In fact I can run at this point and it's a lot smoother than when I was 18 years old and ran 2-6 miles a day. I am not dragging my feet like before and my head is pretty level when I walk. My roommate says it scares him now because late at night he can't tell where I am in the house. I used to clomp around and he could always tell if I was in my bedroom, the kitchen or wherever. As long as I get enough rest and slow down a bit the gait stays strong.
On a self esteem level, this surgery has really boosted my self esteem. People seem to stare a lot less and standing up straighter makes me feel more confident and strong. Over the past couple of years I was in substantial pain much of the time. I herniated a disk a few years ago and was having a lot of pain. I am a massage therapist, so I figured out how to manage the pain, but this surgery has been the only thing that really was able to stop the jarring. It's very scary thinking that your career and livelihood could be over because of back pain. I can carry my massage table around quite easily at this point. I also added a lot of fresh fruits and vegetables to my diet. That helped me lose 10 lbs and took a lot of pressure off of my joints. I could write a book about this but instead would invite anyone who is interested to email me or call.
Message: July 14, 2006
E-mail Address: mastdh02@yahoo.com
HELLO MY DAUGHTER IS TURNING 4 YRS OLD THIS MONTH, SHE WAS BORN PREMATURE AT 26 WEEKS DIAGNOSED WITH A GRADE III HEMORRHAGE,(HYDRACEPHILIS) AND LATER WAS DIAGNOSED WITH QUADRPLEGIA SPASTIC CEREBAL PALSY, WE HAVE TRIED THE BOTOX OVER AND OVER WITH NO GREAT DIFFERENCE, SHES BEEN IN THERAPY SINCE 3-4 MONTHS OLD, SHE DOES NOT HAVE ANY BALANCE, OR TRUNK CONTROL, SHE CAN STAND WITH HOLDING HER UP AT THE WAIST, SHE CAN COMBAT CRAWL, AND ONLY WALKS IN HER SMART WALKER , JUST BEGINNING, I AM LOOKING FOR SOMEONE WHO HAS A SIMILAR SITUATION AND HAS HAD SDR WITH GREAT IMPROVEMENTS, I AM REALLY CONSIDERING THIS PROCEDURE FOR MY DAUGHTER. I HAVE READ SO MANY STORIES AND HAVE ACTUALLY MET SOME FAMILIES WHO HAVE HAD IT DONE, BUT THEIR SITUATION WAS DIFFERENT, PLEASE RESPOND.22 July 2006
E-mail Address: Rodney.c.weiss@us.army.mil
My daughter Madi now has a new pair of legs!!!! This surgery was amazing. She is still in the hospital now and is post op day five. We go home tommorrow and I am still amazed every time I look at Madi's legs. Before SDR we could not change Madi's diaper without priying her legs apart,now they move excactly like they should. Four days post op she was back in her walker taking steps. There is soo much on this web site already so I'll just say this..Dr. Park is a true professional and is a miracle worker. Second I am in the military and yes tri-care paid for the entire procedure. If any one has questions please contact me. o and this may help my daughter is three year old and can walk with a walker before surgery now...who knows thats up to GOD!
E-mail Address: cgriffin27886@yahoo.com
This weekend marks the one year anniversary of our daughters SDR at St.Louis. So much has changed in her life since surgery. She was only able to ambulate with a kaye walker prior to surgery...the day after we arrived home from St.Louis she informed us that she didn't need the walker any more & now she walks with her forearm crutches (she can do short distances with 1 crutch). We went back for the four month checkup in April and things were going well. Elizabeth continues physcial therapy at the local hospital as well as a home therapy program, of course, keeping up with her big brother (he is 2 years older) is some of her best therapy. We give God the praise for the miracle that was performed on 12-06-05 by Dr.Park. We thank God for the ability He has given Dr.Park and the entire medical team at St.Louis & for the willingness to use their knowledge to help children. The experience we had at St.Louis will be forever in our hearts. Because of you our daughter now has a real chance at a "normal" life. Thank you does not convey all the thankfulness we feel. We're looking forward to seeing the "Team" in the spring for the 16 month check-up. Elizabeth is already talking about the airplane ride there. May God bless each of you with a wonderful holiday & a very Merry Christmas.
To the parents that are considering SDR or have just been through it...Dr.Park is the MAN! You have nothing to fear if your child is in his care. The whole team at St.Louis is top-notch. Go for it & get your child walking. It's amazing how quick they recover...I would probably still be complaining!
Email if I can be of any help to someone considering this or to someone recovering. I would LOVE to talk to you.
Therapy is going well and with the appropriate frequency.
Message -- December 13, 2005
Elizabeth is doing very well and has started her round of pt on a daily basis. She is determined walk, so we know it will happen. Please continue praying. We already see postive results from the surgery.
May God bless each of you and the ones that are getting ready to enter this surgery. The Griffin Family.
The incision looks good. Very minor swelling around it that is continually decreasing. The glue is just beginning to flake off.
Although this isn't something that is mentioned as generally improving greatly, we have noticed an significant improvement with Isabel's fine motor skills. Pre SDR she had difficulty using her right and left hands in unison to achieve a task. She is now doing that with much greater frequency and ease. Her pincer grasp with both hands is better as well. I think this may be partially due to the fact that she is so much better balanced now, that when she reaches for something or needs to use both hands simultaneously she isn't being thrown off balance which used to result in her whole body tensing up and hence her inability to complete her task.
Her pain seems to have lessened quite a bit so we have decreased the frequency of the Tylenol but are monitoring this closely as her activity increases.
We noticed immediately that her speech had improved. She was very verbal and communicative before the SDR and to our delight its even more so now. She more clearly pronounces her words and clearly sounds out PH ST SP and F type of sounds. They were not as clear pre SDR. Her sentences are longer, more detailed and she's able to carry the concept she is talking about through multiple sentences to some sort of completion. Its fascinating. It's like we have a window into her thought processes.
You know it strikes me Joan, that before the surgery, there was so much going on in her brain that it got in the way of Isabel just being able to be Isabel. Now she's been liberated...she has a freedom she's never had before..to think and to move. It's truly amazing and just fills us with hope and gratitude. Thank you.
E-mail Address: punky914@yahoo.com
I have a 15 year old girl who has C.P.with severe spasticity and can walk with my assistance but isnt very good with a walker, we just heard of this SDR and it sounds like it would benefit my daughter. I would like to know if there is anyone out there that has a similar case and if this treatment worked well for them or not? My daughter cant use her hands well, cant sit unsupported and onlt walks with assistance. Can someone give me some advice! Please, hope to hear from someone soon, Thanks
Message
Various drs for my son (spas. diplegic, 3.5) have recommended different surgeries. We are trying to decide between a percutaneous muscle release and a rhizotomy. Due to the much less invasive nature of the perc. releases, we are interested in doing that one first, and some drs have said that is fine, but others have said that we should have a rhizotomy first. Have any of you had experience with this, and/or decided to have perc. muscle release done first and then follow that with a rhizotomy?
Message --
Message -- May 18, 2006
E-mail Address: lilhml1972@hotmail.com
I would like to thank Dr. Park and Children's for all that they did for my daughter. Lauren was 9 years old when she had SDR on Sept 16, 2005. We had known about the procedure for several years. But I had decided that I didn't want my baby to have surgery if we could at all avoid it. We have done physical therapy for ever and had tried botox injections and serial casting. The insurance wouldn't pay for botox anymore and her hamstrings were getting worse all the time. Lauren saw a news special last summer on SDR and she told me that she wanted to get that surgery. I talked to her and told her I would look into but she had to understand that it would be a lot of hard work on her part. She said she was fine with that and I contacted Dr. Parks office and made the appointment. When she found out that she was a canidate for the surgery she was thrilled. And it was scheduled for a month and a half later. Of course I was scared out of my mind but Lauren came through like a trooper. During surgery they called the waiting room every hour to tell us how she was doing and we were with her as soon as she was out of surgery. Not only did it help with the spactisty in legs but in her hands and arms too. The day we went home from the hospital she was able to braid her dolls hair. That is something that she could never do before. She was able to clap, turn her hand over so her palm was up, and raise her arms over her head. These are small things, but to a little girl they mean so much. She walked with her walker for about 3 months and now she is back to walking with her forearm crutches. She is currently working on walking with walking canes and continues to make improvements. Her goal is to walk unassisted and she works very hard every day to get to that point. I am so glad that she had this done. We used to think what will her life be like as she grows older. Now we know that she can do anything that she sets her mind to.
Message -- December 27, 2005
E-mail Address: kewe383@alltel.net
I have a 9 year old son with spastic diplegic Cerebral Palsy. We found out, at six weeks of age, that he had a brain injury (Periventricular Leukomalacia). We began aggressive therapy when he was four months old. Despite aggressive treatment, he struggled with all types of mobility. Putting on his socks, sitting on the toilet, and getting in and out of the tub were incredible feats that we struggled through daily. As he began to go through rapid growth spurts around the age of 5, the future seemed filled with much uncertainity but I knew, beyond a shadow of a doubt, that my son was heading straight for a life, confined to a wheelchair. By chance, we found Dr. Park and took a HUGE leap of faith. My son had a SDR in November, 2000. The results have been nothing less than spectacular. After years of therapy (and persistance on his part), he can now run, jump, climb, and ride a bike. His stamina is much improved and he is a much happier boy. He walks independently without braces or a walker and follows his twin brother everywhere. I cannot say enough wonderful things about St. Louis Children's Hospital. The nurses and other physicians were very professional and caring throughout our entire journey. I am a critical care nurse at a Level One Trauma Center and had very high expectations for my son's care. I was never disappointed. Due to his excellent care, I was able to forget about being a nurse and just concentrate on being a mom to my little boy. Would I recommend Dr. Park and SLCH to other parents? IN A HEARTBEAT!!! I have never regretted our choice to proceed with SDR and would highly recommend (at least) an evaluation for any child with CP. I contribute Dr. Parks success to very strict preop screening and an exceptional team of professionals backing his surgical talent. I am forever grateful to Dr. Park and all of the wonderful people who not only gave my son his life back but also gave my husband and I our dreams back. We can once again hope for a bright future for our child. I welcome any email correspondence from other parents who would like to ask questions regarding our experience. This journey is much less lonely when you surround yourself with those that understand your trials. KJWMessage -- November 9, 2005
E-mail Address: rgomez76@houston.rr.com
First of all, I would like to thank Dr. Park and his team for the amazing work with Eli. I am here to encourage parents that are thinking about pursuing this route, to do so. I did an extensive research on this prior to Eli undergoing this surgery. I was very confident in my decision, once it was made. Obviously, I was slightly nervous. But everyone gave me so much confidence the moment I stepped into their hospital.
First of all, Dr. Park spent at least 45 minutes discussing Eli's case and explaining to me the goals and expectations of surgery. He answered every single question without hesitation.
I planned all this prior to my arrival. I scheduled the consult one day, Eli had the surgery the following day (10/4/05), a day that will never be forgotten.
Day of surgery - Amazing. They kept me posted on the progress as he was in surgery. I was able to see him about 20 minutes after the surgery was completed.
The nursing care was amazing as well. My child was well taken care of. Even though I am a nurse as well, they did not take anything for granted and treated me as the mother that I was to Eli, not the nurse in me.
I see improvements in Eli's functional status daily. He is receiving a lot of PT, I do a session with Elian once a week and obviously keep with the stretching program.
He is a happier kid, he is back in school and what I love the most is that he is not falling as much as he used to prior to surgery.
Please don't hesitate to email me if you want details or info on research articles I found on the subject.
Happy mom
Message -- September 16, 2005
E-mail Address: mailto:wrightman77@yahooo
My daughter had SDR two weeks ago today. She is doing terrific. Dr. Park and his staff were out of this world! Please if you are considering this surgery for your child contact me with any questions. This has change our daughter's life! It is remarkable! We still have tons of therapy left but you can tell most of the spasticity is gone!
Message -- July 13, 2005
E-mail Address: baimakovicht@sjrmc.com
Anyone who is considering having this surgery should stop considering and schedule. I can't begin to tell you the improvement in my son since his surgery last year - he still continues to improve on a daily basis.It has changed his level of function. I know results are different for everyone as everyone is affected differently but improvement is always the common goal.I would not hesitate to take any questions about this and I urge any parent to get beyond their own fears and do this for your child. Thanks, Tracy Baimakovich
Message -- May 26, 2005
E-mail Address: Joyce@TorchLake.com
My son has CP, and had the SDR surgery in 1991. It was the best thing we did for him. He does use his walker for short distance, most of the time it's his wheelchair. My son has had two hip and arm surgeries since. He is very independent and likes to do everything on his own. He will start driver's education soon. They grow up so very fast. JB
Message -- May 3, 2005
E-mail Address: jkhouse1971@yahoo.com
I want people to know my son's story. My son had the SDR surgery in 1995, when he was almost 3 years old. At the time, it was still considered "experimental" and we had a challenge getting the insurance company to authorize payment. Up until the surgery, he could only maintain balance and walk with a walker. He was unable to do a lot of things that so many parents take for granted. Approximately three months after the procedure, Brandon took his first steps. Although the physical therapy, and many follow up appointments can be quite taxing to say the least, the surgery was well worth it. Today, he is 12 years old, a proud member of the Boy Scouts of America. He was just awarded a merit badge for hiking 5 miles during a camp out. He also just completed the requirements for the President's certificate for physical fitness, which he finished with his mile run in 21 minutes! Not bad for a kid with CP?! My point is, I’m so glad to see more publicity related to this procedure. So many people are out there who could benefit from this surgery. It’s not a cure, but it's the closest thing. Thank you, Dr. Park, for making his dreams continue to come true!
Message -- May 24, 2004
My son BM had the SDR surgery on June 6th of last year. First of all, I can't explain how wonderful everybody treated us at the hospital. Dr. Park and his staff were great to us. Everything I read prior to the surgery from their internet site prepared my husband and I for the trip 100%. My son could only walk with a walker prior to this surgery. Now he can walk with canes (when he wants to) and he can take about 12 steps independently. Three weeks after being home my husband and I were amazed when he went from sitting on his knees and transitioned himself to legs straight out in front of him. We know that God brought Dr. Park and his staff into our lives. We truly believe that our son will eventually walk independently and just take everyday one day at a time. THANKS EVERYONE AT CHILDREN'S HOSPITAL FOR OUR STAY!!!
Message -- March 20, 2004
My son LK had the SDR surgery in June 2003. Oh My Gosh!!! This little 3 year old has had such a major change in his life. He is so happy now, more willing to do the excercises, the therapies etc. He moves so much better now. I can't believe the change. He is walking with two quad canes and can walk with one for a short distance. He has taken 3 steps independently for the first time in his life. Before surgery he could only use a walker. He could not sit crisscross apple sauce (Indian style), he only could sit w-sit with control. If LK never goes any further in his life with walking, the surgery was well worth it. He had such bad leg cramps and would cry every night, those are gone and he finally slept though the night two weeks after his surgery. No one in our area knew about this procedure (SDR) and we decided to go ahead and have surgery almost a year ago and just recently 5 other children in our hometown and the surrounding area have had this surgery because of the success of him. Because of the hard work from my son and our physical therapist and her dedication, this surgery has changed LK's life forever. Thank you so much DR. Park, for you dedication to SDR surgery. I could never repay you for what you have given LK. THANK YOU!!! THANK YOU!!!
Message (no date)
Great News!!!!! From a parent with twins who are two weeks post -op SDR.. They are doing fantastic, both are ambulating and progressing on a daily basis. They both have minimal discomfort from the surgical area treating with Tylenol prn. Everyday is so exciting. One child walked within a week of surgery the other eleven days after. The children themselves know that they can do much more and it is very easy to move without the spasticity. The overall experience of Hospital Stay was very positive. Please note both children were ambulatory prior to surgery, one independent the other walked with crutches. This surgery is a gift that you can give your child.! This is the beginning of a new life for our children.
Message (no date)
E-mail Address: tylerh@cvok.net
My son PH who is 6 years old had SDR in Aug. of 2003 and has been improving every day since. This surgery was truly a gift from God (and Dr. Park). Thank you so much Dr. Park for giving this gift to our son. He was walking with a walker and he started walking with forearm crutches totally only 3 months after surgery. He is doing wonderful.
Would Like to Hear from Parents Whose Children have had SDR
Message: 9-15-09
Comments: Hello all off you people,I read lot's off intresting things about SDR it's amazings storys but why don't anyone axplain little bit more about the cost they pay for operation?I got a 4 year old son I m thinking to go for SDR. mahalla_jone@hotmail.com
Message: 9-15-09
Comments: I am looking for the parent of a child with spastic quad who has undergone the surgery. I would like the opportunity to hear your experience and results. I have a 6yr old and wnat to know if this may be an option. thanks. tcecchi@panamericanconstruction.com
Message: 7-21-09
i have 3 1/2 yr old son who has spastic quad c.p. the ortho had mentioned that the sdr would be good for him. he has severe scissoring, doesnt walk on his own and does the army crawl. as of monday the 20th of july he was finally able to pull a gait trainer walker on his own for a short distance. i am wanting anyone that has had this procedure done to please contact me with any info that may help in my decision. thanks so much.
Email: crystalg242008@yahoo.com Initials: C.G.
June 22, 2009
Initials: BS
Email: bscott@laurelgrocery.com
Comments: My son has been diagnosed with very mild CP. The only thing effected is his lower part of his legs..he's a toe walker and his balance isn't to good. He wears AFO's now but I seen the article about Dr. Park and this has really given me hope.....If would love to talk to anyone that has had a child that has the SDR procedure done. My son is 6 and AWESOME, he loves sports and I know that someday he will get to play...I'm a determine DAD that is going to do and go wherever I have to in order to get my son the help that he needs. He is all around fine but his muscles are just to tight in his legs. PLEASE, if anyone can call me or email me I sure would appreciate it. My name is Bobby, cell # 606-682-2875 or email me at bscott@laurelgrocery.com. Look forward to hearing some valuable information about SDR and Dr. Park.
Email: S.KASH@COX.NET
Comments: HELLO EVERYBODY,
I AM SO HAPPY WITH THE GREAT RESULTS EVERY ONE HAS HAD SO FAR WITH SDR.
I JUST HEARD ABOUT SDR ON THE NEWS. I HAVE 5 AND 1/2 YEAR OLD SON WITH CP (QUDRIPLEGIC) WITH A HIP SUBLUCXATION AND HIGH TONE ON THE ANKLES, MOSTLY ON THE LEFT ONE. THE ORTHO DOCTORS HAVE SUGGESTED ORTHO OPERATIONS ON THE HIP AS WELL AS TENDON RELEASE ON THE ANKLES. I HAVE NOT BEEN CONVIENCED TO PUT HIM THROUGH THE SURGERY YET. ESPECIALLY AFTER I HEARD ABOUT SDR, I AM EXCITED TO CONSIDER SDR FOR MY SON. NOW I DO NEED YOUR HELP TO CONTACT US WITH ANY INFORMATION REGARDING BEFORE AND AFTER THIS PROCEDURE AND IF THE GREAT RESULTS HAVE STAYED THE SAME FOR YOU AFTER YEARS OF THE SURGERY. I AM SURE EVERY SINGLE OF YOU AS PARENTS THAT HAVE DONE THIS SURGERY HAVE GOND THROUGH THE SAME AS WE ARE GOING THROUGH NOW. SO PLEASE HELP US TO MAKE THE RIGHT DECISION FOR OUR SON.
WITH ALL OUR BLESSING TO ALL OF YOU, WE LOOK FORWARD TO HEAR FROM YOU SOON.
Email: brian.alexander@raymondjames.com
Comments: We just heard about the SDR procedure and are considering it for our 4 year old daughter. We were not told by any of our current specialists (PT, OT, neurologist, pediatric rehabilatitive, etc) but rather discovered it doing our own research on the web. Our daughter uses a walker and canes and can take 10-20 independent steps at a very slow, measured pace. She has spastic diplegia but does not have a scissor gate nor does she walk on her toes. We are very apprehensive about putting her through a highly invasive procedure unless it is expected to produce a material improvement in gross motor functions. Any feedback is greatly appreciated.
Message -- February 23, 2009
HI. MY SON IS 4 YEARS OLD AND WAS DIAGNOSED WITH QUADRAPLEGIC C.P. AT THE AGE OF 1. WE HAVE TRIED BOTOX INJECTIONS SEVERAL TIMES AND IT SEEMS TO HELP BUT ITS LIKE TAKING 3 STEPS FORWARD AND 2 STEPS BACK. ANY WHO HIS ORTHROPEDIC SURGEON AS WELL AS FRIENDS MENTIONED SDR WITH DR. PARKS AND I WAS JUST WANTING A LITTLE BIT OF FEED BACK FROM THOSE OF YOU WHO HAVE EXPERIENCED THIS......THANX SO MUCH FOR ANY INFORMATION AND WORDS OF ENCOURAGEMENT
Email: JVANDIVER22@YAHOO.COM
Message -- January 14, 2009
Comments: Thank you for taking the time to read this message. My 5 year old daughter will be undergoing the Dorsal Rhizotomy surgery in March. I am very interested in talking to any parents that have had their child undergo the surgery. I am just a little curious about what to expect and any tips you may have. Please feel free to email me at pamwilliams323@msn.com Initials: pjs
Message
10/16/08
E-mail Address: tina718@bellsouth.net
We adopted a 5 yr. old girl from India 7 months ago. She has CP. Our PT recommended we look into this surgery for her and now that we have we're very interested in moving forward. If we can get the pre-authorization for the surgery... it should be covered by our insurance but all the PT afterwards, will not. We have only very limited coverage for PT.
Our question is this. With all of you who have done this ... how did you afford the PT that is needed afterwards and the expenses of travel? With us adopting her from India.. the cost was tremendous and folks helped us out with that. It'll be nearly impossible to ask for folks to help once more. Are there agencys or grants for such things and where can we find them or can any of you PLEASE help us with who might help us.
We want our girl to have the best possible life and we believe this is the answer. Now, it's all about the money and we just have to find a way. (Of course we have to apply and be accepted first.) Any help and suggestions would be GREATLY appreciated. We live outside the Atlanta area. Thank you!!!
E-mail Address: jillsa77@hotmail.com
: 8/27/07-mail Address: gitfunkynow@yahoo.com: 7/10/2007
E-mail Address: chellee24@yahoo.com
My son is 4 years old and was born @ 31 weeks. he has been diagnosed with spastic Cerebral Palsy, moslty right side. I am considering an evaluation for the SDR surgery. As he gets old he is having more problems with the tightness in his right leg. Physical Therapy does not seem to have much benefit. We have also had Botox injections and Serial Casting, which didn't seem to help. I would like to hear from amyone whose child has had the surgery to see if it our best option. Thanks!!!!
Initials: MW
Message 7-5-07
I am interested in talking with parents that have recently had the SDR for their child. I have a 7 year old son 23 weeker, triplet with spastic quad. (very mild in arms) walks with a reverse walker and has had heel chord surgery and hamstring, botox, serial casting. We were scheduled at the end of this month for yet another heel chord surgery but are now considering SDR. We will probably cancel the heel surgery and do the SDR. My son is also legally blind but desprate to walk. He is more affected on the left than right and kind of drags his bad leg along....any advice or experience with the SDR in a case like this would be appreciated...also anyone with a great distance they had to travel..we are from Alabama and would be prob. flying back and forth. How was the folllow up after.
Thanks.
Initials: AT E-mail Address: a.m.tice@hotmail.com
Message
: 03/08/07
Initials: sk
E
-mail Address:
gunnell22@yahoo.com
Message
: 1/11/07E-mail Address: kimmadden@Hotmail.com Thanks.
Message
: 11/27/06
Message: 11/20/2006
My little son, nearly 3, was diagnosed with CP (Spastic Diplegia) at the age of 10 months. He has been receiving physiotherapy and hydrotherapy in UK. He has made some progress in that he can walk with kaye walker and can also take few steps with the walking sticks. He recently had his first botox, which has worked to some extent on him.I'm now considering SDR for him and wondering if somebody could share his/her experience with me. I will be very grateful if you share your experience, that would really help me decide whether to go for it or not. I'm not sure if he is the right candidate for SDR.
E-mail Address: anurag.harode@gmail.com
Thansk,
AHE-mail Address: gusman7169@sbcglobal.net
I have a four-year old daughter with a fairly moderate case of spastic-diplegia. Meaning she has very high tone in her legs(right is worse then left), but she is very mobile on her tip-toes. We have now had two local neurologist recommend to us, to look into SDR. I now would like to ask those parents who have been in my shoes and made the decision to have their child go through with SDR a couple questions:
1) What kind of result did you have. I guess I'm nervous about a surgery on the spinal cord and not getting any results. Is it worth it?
2)Would this be the only necessary surguery? Or would I still be looking at a heelcord lenghting in the future?
3)This is definately the most important of all the many questions I still have. What are the major risks?
Message:
October 22, 2006
E
-mail Address: rimashah@bigpond.com
Messagehi,
We are considering SDR for our 5 year old. He has spastice triplegia and walks in a K walker. The doctors believe there is slight dystonia in his left arm and are not sure if there is any in his legs. Other than that he fits all other criteris for the operation. Iwas wondering if anyone knows what sort of results we may expect if we go through SDR
: 09-22-2006
Initials: cc
Message -- September 13, 2006
E-mail Address: lczysk@msn.com
I have 4 years old twin daughters who have CP. Their lower extremities are affected but are able to walk with kaye walkers and have no other problems. I am considering a SDR but still would like to know if anyone has experience any setbacks with the surgery or if all surgeries done by Dr. Park have been successful. Our daughters have been accepted and we are planning on meeting with Dr. Park to discuss the procedure more in detail. Our biggest fear is that they will lose the ability to walk with a walker which we have worked so hard to achieve. We are currently working with crutches for one of them. They are scissoring and their hips are somewhat sublexed due to the degree of spasticity. I only know 1 child who has had the rhizotomy here in Orlando. I would only choose Dr. Park to perform the surgery but would like either negative or positive feedback on the outcome of the procedure. I understand that every child is different but would like to hear from some parents who have had the experience and would like to share some insight.
Thank you, LZ
Message -- April 23, 2006
E-mail Address: jaesweetie@yahoo.com
I am 16 years post- op my SDR I am 20 yrs old, with mild diplegic CP. I did not have my surgery preformed by Dr Park but am looking for other patients or families that had the procedure around the same time. I have been told that there isn't very many people out there that had it in 1990. Any response would be greatly appreciated. For all of the parents of kids that recently had the SDR done, 16 years have passed and I am still doing wonderfully, if anyone has questions for me feel free to contact me.Message --
April 3, 2006
Email Address: sloank@comcast.net
I am very interested in communicating with any parent who has chosen SDR as a treatment for a child with CP. What age? Complications? Benefits? Long-term? KS
Message -- February 3, 2006
E-mail Address: ehwells@yahoo.com
We have a 9 yr old son that has moderate cp. He has been walking independely since he was 4. He has had botox many times and this is no longer an option for him because it doesn't last very long. He has had hamstring gastrox and heel cord lengthing in July of 04 he is doing great but we would like for him to do better he is staring to get contraturs in his legs. His pt suggested we look to see if he would be a canidate for a SDR. I am very scared because he can walk without any assistance. If anyone has a child who had this sugeury at this age could you please emiail us. Thanks. cjw
Message -- December 21, 2005
E-mail Address: tcstack@yahoo.com
We have a vibrant 7 1/2 yr. old daughter with spastic diplegia. She has worn DAFOs since age 2 and has had Botox injections but no surgeries. She walks without any assistance but has problems with balance, gait, etc. One of her specialists recently said that she is a perfect candidate for SDR and recommended Dr. Park. My husband and I are very nervous about the idea of such major surgery. I haven't heard much about mild CP SDR patients. Does anyone know any results for patients that were relatively mild to begin with? How much improvement can be expected? Do you get to stop wearing DAFOs?! Any help will truly be appreciated. Thank you. tcd
Message -- October 28, 2005
E-mail Address: rom9r@aol.com
i would like to know more about sdr,my son is now seven years old and has cp.he uses a walker but is really slow with it,i just really want to know if other people would tell there stories thanks .vkr
Message -- September 12, 2005
E-mail Address: bsofield@cicmail.com
My daughter Farrin had a Dorsal Rhizotomy when she was 4 years old, she is now 19. She was spastic in both legs and would never have walked without the operation. She walks with a limp and except for slippery surfaces manages very well...we live in Vermont....I found your website in my research in order to get Farrin S S I.....If there is someone who needs information regarding her progress I would be willing to help if I can Help:
Message: 1-25-08
E-mail Address: nrsesand@sbcglobal.net
Looking to e-mail patients or parents who had SDR
with a dx of spastic diplegia cerebral palsy.
Walks in reverse Kaye walker only.
My son turned 5 in last November and we are looking into this procedure to be done in May.
Please e-mail me as time permits with your outcomes whether it be negative or positive.
Desperate to speak with someone!
Thank you,
SLT SON IS ELT E-MAIL ADDRESS: nrsesand@sbcglobal.net
I am looking for someone to talk to about the selective dorsal rhizotomy.
Message
I am looking for help and information from parents of children with mild spastic diplegic CP who have had SDR done. Our son is 3 years old and has been treated with serial casting, DAFOS, PT, and one round of botox. The botox seemed the most effective in reducing spasticity but we are told it will eventually lose its effectiveness after several treatments. He has been recommended for SDR but we are a little hesitant as his case seems mild compared to most others. He is very active and has always been able to walk. He has some issues with balance (falls down easier than others and is hesitant on playgrounds), muscle strength (difficulty ascending and descending stairs on his own), jumping, and coordination (trouble walking straight line). Other than that he is a happy, active child and we'd hate to do the surgery if its not warranted. I'd love to hear from parents of children with mild CP who have or have not elected to have SDR done. Thank you.
Message --
Hi, This is an update!! My twin daughters had the SDR procedure done in November 2006 at 4 yrs old. Surgery improved their posture tremendously and their spasticity decreased. One of my twins learned how to crawl within a couple of months post surgery. They both continue to walk with reverse walkers but one is very close to walking with crutches and possibly independantly. I am very happy with the outcome and would recommend it to anyone who is considering this procedure. I would do it again in a hearbeat if I had to and would certainly only consider Dr. Park. Dr. Park was very honest with us and never gave us false hopes as to what the outcome would be for each one of our girls. I am glad we gave our daughters the chance and we have no regrets.
Lilly
Initials: CJ E
Message
Date: 2/20/2008
Hello - We just recently contacted Dr. Park and his staff about our daughter (11). She has mild diplegia. She's ambulatory but she falls sometimes. A year ago she broke her arm in a fall and she gets very discouraged/embarrassed/frustrated by this. She has been accepted as a candidate for the SDR and we are looking for information from others who have been through this operation, especially from parents who have a child about her age who has mild CP. We would like to know everything - both the wonderful stories and the difficulties that you faced. I'm a little nervous to put her through this, but it sounds like it could change her life/our lives for the better. Thanks in advance for your thoughts. We want to make the most educated decision that we can. Jill
Message: 08/20/2008
My husband and I would like to send out a heartfelt thank you to Dr.Park, Joan, PT, and all the staff at St. Louis Children's hospital. Our son was 3 1/2 years old when he had the surgery (2/2008) and is now 6 months post-op. Our son was walking with double quad canes pre-surgery and is now walking independently at home and with a single straight cane outside. Yes, it is alot of work post surgery due to the underlying weakness that is usually masked by compensation pre-surgery, but it is worth it. My husband and I pursued every non-invasive technique available before deciding on the surgery, but in the end, we knew that SDR was the answer to permanently eliminating the spasticity in our son's legs. Dr.Parks and his staff will listen and give you their honest opinion, but it is up to the parent to listen,believe, be patient, and follow the protocol. We do not regret electing to have the SDR procedure done for our son. It was well worth it not having to hear our son complain of cramping legs and knowing that we could only temporarily relieve the pain. My son has not complained of cramps in his legs since a month after the surgery. To me, this within itself, carries it weight in gold. My wish and prayer for every parent considering the SDR is that you ask, seek, and receive. Give Dr. Parks and his staff the opportunity to bless your child with the gifts God has given them if your child is a candidate. In closing, as a pediatric rehabilitation therapist, I chose the SDR over all the other procdures, because with my knowlegde base in anatomy/physiology and neurology, it made the most sense. Again, Dr.Parks and staff, we humbly thank you and will continue to keep you all in our prayers.