Here we go! The 4 of us leave in the morning (SAT) to go to St. Louis. Dr. Park is scheduled to do the surgery on Tuesday (the 16th). Will try to check in here durig the trip. Thanks for all of your help here on this board. Best wishes to you !!

Good luck, we will be thinking of you. I'm sure it'll go well!

GOOD LUCK to you and your son!!! I will be thinking of you guys on tuesday!!! Dr. Park is awesome and everything will go smoothly! Keeping my fingers crossed for you!!!

Go to the zoo while in St Louis, its great and free...and best of all, makes the day before surgery go by faster.

We'll be thinking of you! Good luck to you and Noah, and we look forward to hearing about how well everything goes!

BSJones Family,

We will be praying that your experience is as good as or better than Maggie's. She continues to do great and I am SO happy that she had the SDR. The difference is amazing. Tell Noah that Maggie will be thinking of him. Please keep us posted!

Jamie

Thanks all of you. I am on a computer at the Parkway Hotel. Noah had his surgery first thing this morning. Dr. Park said it went smoothly with no problems. Noah has been asleep most of the time since then. When he did wake up once, he was very uncomfortable and they increased his medicine, and he went back to sleep. My wife stayed with him today. I am going to stay around some tonight, though if he is doing well, I may try to get some sleep. He is in the PICU, and probably will go to a room tomorrow (Wed).

I liked Dr. Park.

I am glad Maggie is doing well.

I feel really good about the SDR.

To be continued. Best wishes.

I'm so glad to hear all went well. Maggie and I have been thinking about Noah all day. Please keep us posted on his progress.

Jamie

Me too! I've been thinking about you guys all day today! How awesome that the surgery is behind you!!! Hope Noah will be much more comfortable tomorrow.
Thanks for an update!

That is GREAT news! Please keep us posted as to Noah's progress, and we'll continue to keep you in our thoughts.

Thanks Maggie ! And MagsMom, jandd, Kaitlyn's mom, and Steffers !! I am glad you all are here.

Noah continues to do well. They will try to stop the strong pain medicine today, and he may be able to get up a little tommorrow. He has a little scar, and says his back hurts every once in a while. But he hasn't cried since earlier yesterday. He does want to get out and ride the elevators though. He had a little temperature, but that is normal.

St. Louis Children's hospital is great !!

I will keep checking back.

Glad to hear he is not in pain!!! :bouncing:
thanks for updates! we are thinking about you guys!
If Noah is up to it, take him up to the garden when he is allowed to sit up.
Have fun in PT.

Dear Noah and Family!

We are so glad to hear that all news is good news! We agree that the hospital and staff there are super. If you have Michael for PT, please tell him hello and let him know that Maggie, (the 13 year old SDR that had to have the shunt revision post SDR), is doing great. Walking all over the place and no side effects. We won't be back down there again to see them until the end of July.

Take care, Noah and eat lots of DQ ice cream! That was Maggie's favorite part of the hospital! Good luck with PT.

Jamie and Maggie

Thanks for all the tips - jandd and MagsMom. Noah has gone to the garden, and in PT today (the lst one), he took a few steps with a little help. He is very weak from the operation, but is getting much better each day. Maybe we will try ice cream tonight.

The anesthesiologist found that he has a very narrow airway due to scar tissue from having had a breathing tube for so long while a premmie.

Also, he seems to be constipated, which is very painful for him, but we think it will be temporary.

I am getting ready to take him back to the hotel. Our plane leaves early MON morning. It is a lot of work and fun at the same time - traveling with two three-year-olds (Noah has a twin named Sam). It keeps my wife and I busy.

Thanks for everything. I will check back here later next week.

Best wishes!

bsjones - It sounds as though Noah came through this with flying colors. We're so happy to hear that he is doing well! Best wishes for a safe trip home, and please keep us posted as to Noah's progress once he's back in North Carolina!

Thanks Kaitlynsmom.

We are back in NC. Noah had a problem with constipation (due to the pain-killers, etc.) and has an anal fissure as a result. It is very painful and he have to help him heal this wound as our highest priority right now. Otherwise, everything looks good. He can stand a little, but gets around in his wheelchair mostly.

Best wishes.

Oh, Gosh, I wish i told you before about stool softener. We started giving it to our son on day 2 post op.
Sorry Noah had problems in that department. BUT i am sure its just a minor thing. The MAIN thing is that surgery is behind you!!!!
hugs

Thanks jandd. You all have been a big help. We took Noah to the doctor again today as we now believe his problem is more due to an Uninary Track Infection rather than constipation. He has started anti-biotics and will have relief soon. He had his first PT visit here today also and did well. I will keep you posted.

I am new to this board and wanted to say thank you to those of you who are sharing your experiences with SDR. My son has mild CP spastic diplegia and we are looking at future SDR surgery. First let me add that I am so pleased to hear that you all have had a positive outcome and your little ones are doing well! I also was glad to learn where Dr. Park might go...that is the Dr. that we have been referred to. We live in Colorado and will be seeing if my little guy is strong enough to have the surgery. He just turned 4 and we go back to Children's hospital in Denver for another Gait study and then they will let us know when he is ready for surgery. Thank you all so much for all of your information. It has helped me (along with my husband who has been very hesistant) to even consider this! Please keep me updated! Thanks!
Twinmomtam :)

So far, Noah sits easier, stands and longer walks more upright, and seems to be in a better mood most of the time. These are dramatic changes! We look forward to seeing him walk un-assisted soon.

Welcome twinmomtam. My husband and I are considering SDR for our 2 year old daughter Kaitlyn, and the people on this board have been INCREDIBLY helpful! I wanted to let you know that I have been in contact with Dr. Park's assistant Joan for a couple of months. She originally told me that he would be moving to a hospital in Houston by the end of August. However, just this week she told me that he most likely will not be moving to Houston. He may be moving somewhere, but she couldn't give me any information as to where or when.

bsjones - I'm so glad to hear that Noah has made such great progress in just over a week! How is his pain level? Is he feeling better with his infection and constipation? We are keeping him in our thoughts!

Thanks Kaitlynsmom. Noah is feeling better. Both the constipation and the bladder infection seem MUCH better. He seems happy most all of the time, and he slept better last night. We are glad we decided to have the SDR for Noah!

Thank you Kaitlyn's mom! I am so glad that I discovered this board. It has been so helpful in so many ways! I really do appreciate you keeping me informed on Dr. Park and his plans! I just hope he isn't planning on retiring or anything like that!
So tell me...how is Kaitlyn doing? My son Tony is walking independently, however his gait is poor. His left foot turns in terribly and he never puts his left heel to the ground. He didn't start walking until he was 3. We were so afraid he would never walk. At this time he can even try to walk fast (almost run) yet it looks very awkward. He is in pre-school and will be in summer school this year. He is a very sweet, happy little guy who loves computers!
Anyway...thank you again for your time and help! I'll keep checking in to see how things are going! Have a great weekend!
Twinmomtam

Hi twinmomtam - I'm glad to hear that Tony is doing so well. It really sounds as though he is thriving! It was nice for me to hear how he has progressed. Kaitlyn just turned 2 at the end of March, and she is not yet walking independently. She wears ankle braces and walks with a walker. Her doctors and physical therapists are very encouraging and they all keep telling us that they believe Kaitlyn will walk independently, but I have to admit that there are days that it seems as though that will never happen. However, we just are taking one day at a time and enjoying our sweet and happy little girl. When Tony was 2 did he use any assistive devices to help him take steps?

I wanted to respond to your post before the weekend...(I think it will help make you feel better!). Yes...Tony had a Kaye walker...AFO's (seldom/never worn) and it just seemed like this is where we were going to stay forever. He crawled kinda in a rocking motion with obvious left-sided weakness. Then he would pull himself up and hold on to things cruising (this too seemed forever!). Then he would stand, but NEVER tried to take an independent step! This is when we bought the walker. Eventually, at around 2 1/2 he would take steps with the walker. He then began to get better and stronger and seemed more confident with the extra support from the walker. Then on mother's day last year...he took three steps independently...then more...then by that night he actually took 11 steps! Talk about a great mother's day present! (He had just turned 3!). So now we are walking without the walker. His balance has been the biggest improvement we've seen. I still carry him often as he tires easily and has difficulty manuvering stairs. He cannot climb and little things trip him. He received PT and OT and now gets PT at school. Sorry for rambling...but I wanted you to know it does get better...it's just when they are ready!
We have never done Bo-tox and have not used AFO's...we were just told to wait for him to get stronger to have the SDR surgery. So...I hope this helps!
I know where you are right now...I was always thinking what if.... but these little ones just decide to get going on their terms! Let me know if I can answer any other questions as you have already been a big help to me!
Take Care!
If you want my e-mail let me know!
Twinmomtam


Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board.

Please read and follow the posting rules.

Oops! Sorry...I'm new at this! Read the rules and I'm ready to go!
Kaitlynsmom...please keep me posted about any changes you know of in regards to Dr. Park! Thanks!
Twinmomtam

Noah took his first un-assisted step this weekend, since the surgery. Yea !

We asked about Dr. Park when we were in St. Louis. I believe nobody knows at this point, not even Dr. Park himself!

Woo Hoo! That is great! Go Noah!!! I am so excited to hear that he is doing so well! Thansk for checking on Dr. Park!!!
Twinmomtam

bsjones - That is great news! Good for Noah! How is he feeling now that more time has passed? What is his post-op PT shedule? I'm so glad to hear that he is making progress so quickly!

twimmomtam - I'll certainly keep you posted on anything I hear about Dr. Park. I guess he'll be staying put for now, so I think we are going to get our application together in the next couple of months for Kaitlyn. We're still thinking that at 2 she is a little young for the surgery and that another year may help her build some additional muscle, so we're trying to work out the best timing for her with the SDR. It would help if we knew if, when and where Dr. Park is moving, but it sounds like nobody knows that right now.

One more question for anyone out there... Do you have any statistics on the number of patients that have had complications following SDR with Dr. Park? We are trying to gather all of the information we can before we make a decision on this surgery. I haven't heard of any extreme complications such as paralysis, but since it's a possibility we are looking for information on that and any other complications that may arise. We are thinking of asking his office, but I thought I'd start here. Thanks!

First of all, GO NOAH!!! i am so happy for you guys!!! Its such a relief to see them starting to walk again. :bouncing:

About complications after SDR. We contacted dozens of families before doing the surgery, and i heard from loss of bladder control, to shunt malfunction, to infection, to sensetivity problems, etc, etc.
In our case, my child had spinal headaches. They were VERY strong, and would start all of the sudden, last under a minute, and go away all on its own. We contacted Park's office, they called us every day for about a week and then asked us to call them and keep them updated. The headaches went away on their own.
I am sure if you contact the office they will give you their statistics. I know that i asked Dr Park about paralysis, and he said that NONE of his patients had it happen to. One adult had a spinal fluid leak i think.
hope it helps

Thanks jandd. That information is just what I needed. I'll talk to Dr. Park's office and ask for some statistics. Thanks!

Kaitlynsmom -

Maggie (13Y) is now 2 months post-op. She is shunted for hydrocephlus. 4 days post-op she woke up with a terrible migraine and began vomiting. CT scan and X-rays showed that her shunt was not working. It turned out that she had outgrown the shunt and it became separated in her neck. It had nothing to do with the SDR and it was actually good timing to have it happen while she was already there at the hospital. Dr. Park did the shunt revision too. We're 2-months post-op and things are good. She's a little bit weaker than I would have hoped for at this time, but with the PT and home exercises she should be able to build some more strength. No paralysis, no sensitivity issues. She has had some mild bladder mishaps over the last week so we're having a urine culture to see if she has a UTI. (She's prone to them but does not have the typical symptoms so they're hard to detect). Hopefully, that's all it is and we can get that easily cleared up. We're still very glad we had the SDR.

Jamie

Hi Jamie - It's so good to hear that Maggie is doing well! The poor thing having the problem with her shunt on the heels of the SDR surgery! I'm glad to hear that it's all been taken care of. I'm hearing lots of stories about UTI's following the surgery, so I'm guessing that's pretty common. I haven't heard of any horrible complications. It sounds like most of the problems that arise can be easily treated. Thanks for the info, and I look forward to hearing of Maggie's continued progress!

To: BSJones -

I know you guys are swamped with PT, but I've been wondering how Noah was getting along. Please post an update when you get a chance. Hope all is well. Maggie continues to improve.

Jamie

Thanks for asking MagsMom.

Thinmgs are going well. Noah seems to be over his UTI. His improvement is noticeable in the following ways: happier, more flexibility, straighter posture in his legs, spine, neck, and head. Revently his PT said that he has regained his previous level of mobility. Actually I think it is a little better. It has been about 6 weeks since the surgery. He gets tired, maybe from all the PT, plus building new muscles. He seems to have gained weight, but we haven't verified this. All in all, everything they predicted in St. Louis seems to be coming true. We are glad we had the SDR.

How's Maggie? Are you going back for the 4-month follow-up soon?

That's such good news on Noah! I'm so glad he has his strength back..and then some. I think that was the hardest part - seeing Mag SO weak after surgery. I had prepared myself for it, but it was just so hard to see. And to hope it all came back. It did, and she's doing great. PT is never-ending but has been so good for her. She's walking without any assistance and her gait is much better than before surgery. She stands so much straighter. And her gait is much more controlled. She does get tired quicker than she used to. She doesn't complain of any pain from the surgery. And her feet don't hurt anymore. The pain in her feet was the reason for this whole journey. She was so crouched and pronated it was just killing her feet to walk anymore. They were so blistered from the pressure points. Now they're all healed and so smooth. We are still so thankful for finding Dr. Park and his staff. I would still recommend the SDR to anyone that qualified. We have our 4-month check-up on July 24. From what I hear, he'll still be there at that time.

So glad Noah is continuing to improve. Tell him Maggie says HI! (She's always asking about him.)

Take care,
Jamie

I am new to boards and just stumbled across this thread. My son, Brett is 18
years old and had the Dorsal Rhizotomy when he was 3. We all consider
this the best thing we could have done for him. Prior to the surgery
he walked on his tippy toes with his knees together and fell all the time.
He has done really well. Now his gait has a slight impairment and he is
extremely flat footed with no arch at all and he recently had surgery to
try to correct that. That is another story. Bottom line is I just wanted to
tell everyone about an older child who has done really well. Hope this helps somebody. Have a wonderful day!!!!

I just wanted to check in and say "hi". Thanks for the information warhawkmom! It is nice to hear how the older ones are doing. I'm so glad that it was helpful!
Bsjones...how's Noah? I'm sure you are very busy with PT. I hope he is doing well!
Kaitlynsmom...Hi! Just wanted to check in with ya! I am still waiting for our next appt. in October. The Dr. told me he will look into his crystal ball and let us know when Tony will be ready for the surgery. I am hoping it will be soon. He is 4 now and I'm wondering how much longer it will be. I know they are wanting him to be stronger in order to deal with the PT. I guess I am just nervous and want to get this past us!!! I want to thank all of you again for sharing ... it is very helpful!
Take care!
Twinmomtam

Hi All!

twinmomtam - It's nice to hear from you! It sounds like you are in the waiting pattern to see when Tony will be ready for the SDR. Is Dr. Park making the determination on the right timing, or another doctor? I think the waiting is the hardest part once you've made the decision to move forward with the surgery!

Kaitlyn is doing well. She is now 2 years and 4 months old, and is walking all over the place with her walker. She actually has taken one or two independent steps, but certainly not consistently. We saw her doctors at UNC this month, and they are strongly recommeding SDR for her. One doctor thinks she is ready now, while the other wants to wait until she's 3 so that she can handle the PT better. We are going to send our application packet to Dr. Park just to make sure he thinks that she is a good candidate, and to get his opinion on the best timing for her. We should finish the videotape and have the package mailed by the end of the week, so we'll see what happens from there. If she isn't ready for the surgery now, her doctors will do another round of Botox and put her in casts for a couple of weeks. We should have some answers within a couple of weeks.

bsjones - I am wondering how Noah is doing as well! Is he making some progress now that he's a few months post-op? Has he had any residual pain or complications?

warhawkmom - Thanks so much for sharing your story! There just aren't many people out there who had the surgery that many years ago! It's so nice to hear a success story like your son's!

Hi Kaitlynsmom!
It's nice to hear from you! I'm glad to hear that Kaitlyn is getting around. It sounds like she is getting stronger each day. The more confident she becomes with her walker the more steps she will try to take independently. I just remember Tony seemed to take forever...I thought he was stuck... I know I told you before that he was 3 before he began taking more steps!

We have a Dr.'s appointment with an orthopedic surgeon at Children's Hospital
who will see him in October and let us know where we go from there. He did do a Gait & Movement Analysis last October and does feel Tony would benefit from SDR. I did e-mail Dr. Park's office and they did ask that I complete a packet. I guess you have yours ready to go! I will discuss this with our Dr. again in Denver and let him know that I plan to send a packet off to Dr. Park.

Do you know why they wait on some little ones and do this surgery on some when they are 2? Is it the strength issue and the ability to cooperate with PT? I have many more questions...but I've rambled enough!!! Thanks again!
Tell Kaitlyn "hi".
Twinmomtam

twinmomtam - I remember you mentioning that Tony took a long time to start walking independently, so I'm trying to be patient! There are some days that I think Kaitlyn is ready to take off, and other days when she doesn't even take one step! I guess it's all up to her!

Don't worry about asking too many questions! I have found this board to be really helpful. The parents of other kids who have had this surgery have answered tons of questions for me, which has been great! From what Dr. Park's assistant Joan has told me, he will base the decision of readiness on the amount of underlying core muscle strength, level of coordination & balance, and the ability to handle the rigorous PT following the surgery. She also mentioned that he prefers to do the surgery prior to any orthopedic deformities developing. He likes to do it between the ages of 2-4, so clearly Tony is still within that range. There are other doctors (including Kaitlyn's Physiatrist at UNC) who prefer to wait until the age range of 3-8, so it sounds like there are differing opinions out there as to the best time for SDR.

I was actually thinking that we would wait until Kaitlyn was 3 or 4 to have the surgery, but Joan encouraged me to apply early based on Dr. Park's suggestion. Also, Kaitlyn's PT and orthopedist think that she meets all of the criteria now, so we figured we would send the application packet and await Dr. Park's opinion.

Feel free to ask any questions - I'm sure I'll have several questions too over the next few months!

Thanks for the information! I knew that Tony needed to be stronger but your clarification helps! I was also wondering about the PT following surgery.
I am a little concerned about finding a PT that has experience with this type of surgery. I live in an area where they are hard to come by. Has anyone had an difficulty finding a PT who was up on the latest treatments following SDR? Is the therapy something that we can do between PT visits? I know the second part of that is insurance coverage. Mine only covers 20 visits per year. I've also read where it is wise to set the surgery up at the end of the year. I guess I am just trying to get all of my ducks in a row! Thanks again!
Twinmomtam

twinmomtam - I'm not sure what to tell you about finding a PT who can help following the surgery. We are lucky because Kaitlyn's PT has 2 patients that have had the SDR with Dr. Park in the last 3 years, so she's worked with the kids, their families and Dr. Park to come up with a program that has worked well for them.

As far as insurance, I too am very nervous. My insurance covers 70 visits per year, which would leave 190 visits uncovered for the year (assuming Kaitlyn goes 5 days per week). It would cost us around $19,000 for the uncovered visits, and I have no idea how we could pay for that. I called my insurance company, and the person I spoke with told me that they may make an exception and cover extra visits post-surgery, and that I should call back once we have scheduled the surgery. I'm keeping my fingers crossed, but I'm having a hard time believing that they will cover them. If anyone else has any input on this please let us know!

We are paying for the extra PT (we got 30 visits/year). Only 2 per week are thru the "system". The other 2-3 per week have been contracted on an individual, person-to-person basis with 2 different Therapists. This helps, plus family donations and savings will hopefully minimize the amount we have to borrow. It is not easy, but I see it as a good investment. Insurance did pay for all the surgery. Yea !!

bsjones - Thanks for the info about PT. I'm sure we'll figure something out.

I am wondering how Noah is doing. Is he making some progress now that he's a few months post-op? Has he had any residual pain or complications? Hope all is well!

Thanks Kaitlyn's Mom!

Noah is doing well. He has no pain that we know of due to the surgery. In fact, he seems happier than before. It has been over 2 months since the surgery and he walks pretty well - much more upright. His right leg is much straighter. His left is rotated in. We notice that now that he is straighter. Also, his balance is off some, and he falls more now than before the surgery. We hope that as he progresses in therapy, he will develop muscles to keep his balance better. Also, he is not as motivated at times in PT, but does OK. After all, he is only 3 years old!

We are still early in the post-op period, so I will let you know more later. So, you have applied to Dr. Park, I think. Have you heard anything?

bsjones - That is great news about Noah! I'm so glad to hear that he is progressing well! I'm sure keeping him motivated during PT is a challenge! I'm not looking forward to that part!

We have completed the paperwork and videotape, and are just waiting for our PT to complete her paperwork. Hopefully we'll send the package off by the middle of next week. I'll let you know when we hear something back.

Please keep us posted on how Noah is doing, and good luck with all of the PT!