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Tethered Spinal Cord & Helping with Understanding Blood Draws

We're always amazed to see support and stories for other mamas about their experiences with difficult medical situations.  Cindy recently emailed us about her child's diagnosis of Tethered Spinal Cord.  Have you experienced this? And can you give her some advice?

I am seeking information from your wonderful community.  I have a wonderful six year old boy (almost seven!) who has been struggling with potty training for most of his life.  We were finally referred to a Pediatric Gastroentologist about six weeks ago and found out yesterday that he likely has a Tethered Spinal Cord.  We have to confirm with a Neurosurgeon and discuss treatment options.  However, our doctor and apparently all of the information available on the internet, says that surgery is the only effective option.

I would love support on a couple of fronts.  First, has anyone gone through this surgery with their child?  We had to use General Anesthesia to do the MRI this week so I know he tolerates that anesthesia well.  The anesthesia for the surgery may be different.  I am also finding information on-line that says once nerves are damaged, there is no repairing them.  Does anyone out there know if he may, someday, have control over his bowels and bladder?

The other element I’m interested in is how to help my four year old through this chapter of our lives.  We had to have blood drawn on my six year old several weeks ago for this issue.  My four year old and I had to take him and I think the little guy was the most upset out of all of us.  He somehow has associated blood with dying and so any quantity greater than just a scratch really scares him.

Comments

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I'm sorry I have nothing to share on this issue, except to say that I'm thinking of you. It sounds hard, and I wish you the best in finding out what you need and getting through it.

For your 4 y.o., especially if he is almost 4.5 y.o., it seems that age is really into blood, guts, death, etc. and it helps to exaggerate things and get really into it and make up unbelievable stories. We used to talk about how huge poops would fill the house to overflowing and we'd have to move out and so on. So this give y'all a way to talk about things and address them, hopefully giving your 4 y.o. a way to process them and not feel like he was being shushed, without having to address what "death" means and the things that a 4 y.o. just can't understand.

I am hoping for good results for your older child and that the process goes as smoothly as possible.

I know a family that is going through the exact same thing. They could not figure out why there son wasn't potty trained and they finally got the same diagnosis. I know that the used a pediatric neurosurgeon at Emanuel. I dont know the doctor's same but she is a female (I think the only one) and she said that they loved her. If you want I can get the family's info. if you would like to talk to them about their experience.

Lisa, the doc you are talking about is Monica Wehby and she is great. My understanding is that this surgery requires a one-night stay in the hospital and that most kids do have a great improvement and go on to be perfectly normal. I haven't personally been through this but know many who have. I would go see Dr. Wehby (her Physician Assistant is also great) asap. As for your younger child, many people have posted on other topics about child life specialists at hospitals. They should be available for both of your kids and will give tours in advance as well as give you many other great ideas. (Ask the doctors office for suggestions to start with). I personally (my kids are younger than yours though) would take a very simple and matter-of-fact approach to "this is what we have to do and it will be fine." I would try to be honest and keep a brave face only to a certain extent. I would also keep your 4 yo removed from it as much as comfortable - ie: don't have him spend that first day at the hospital with you - wait until dinner time to visit your older child. Your 4 yo doesn't need to see how stressed you are waiting for the surgery to be done or see your 6 yo out of sorts recovering from anesthesia. My humble opinion of this surgery is that it seems really scary but is relatively straightforward and you shouldn't regret it at all. Best of luck!

Dr Whebbe (sp?) it is pronounced webbie is the peds neurosurgeon at Emanuel. Parents do seem to really like her and I have cared for her kids post-tethered cord surgery. I was amazed at how well and how quickly they recover. I think the hardest part is the fact that they have to lay flat for the first 12-24 hours. As for the 4yo, bring child life into the fold for both your kiddos. They help with all types of procedures, including pokes and siblings, too. I can't say enough about how wonderful the child life specialists are; both at emanuel and doernbecher.
I think the bedwetting is a symptom of the tethered cord and that the bedwetting often resolves itself once the cord is released. I am sure it is a kid to kid basis and depends on the extent of the cord attachment.

Our baby had a tethered cord, she had her surgery in January. She was 4 weeks old at the time. Dr. Monica Wehby is the pediatric neurosurgeon at Emmanuel. She is a very competent doctor and a very supportive mother herself. She is probably the country's number 1 doctor on tethered cords. She does very complicated brain surgeries, and she made the untethering surgery sound very simple and routine. You can contact me if you have any questions. Her assistant Jenna is awesome as well. The office staff are wonderful too.
You need to contact their office TODAY!
www.mncpc.com 503 413 3690.
Good Luck.
debbie

I can't say enough wonderful things about Emanuel hospital and their fabulous staff. I have not only had the opportunity to work with the staff, but my son has also been under their care. Fantastic!! I have also heard amazing things about Dr. Wehby. It is amazing how children are such troopers. I am sure your child will breeze through this. Best of luck.
Shannon

Hi! I am a pediatric nurse at Emanuel and though I am doing diabetes education now, I was on the floor for 9 years and have taken care of countless numbers of children who have had the tethered cord surgery. It is usually very simple, recovery is generally easy and Dr. Wehby is wonderful, as is her PA, Jenny Hume. Try and be on the list for 1st case (7:30 am) because that way you have all day for recovery and can be out early the next day (usually) The hardest part is exactly what someone said earlier, it is not the discomfort/pain, it is the laying flat for 24 hours. I also agree with child life. Get them involved. They are amazing.
I know I am a little biased, having worked with Dr. Wehby for many years, but I have also heard a lot of stories and she is the best. If you haven't consulted with her yet, go see her!

oops! I forgot to say that parents I have talked to that had children who had the surgery done, say that the bowel/bladder problems do resolve. That is a question that I would pose to the neurologist though (Dr. Wehby or whomever), ask them what their success rate is.

Thanks everyone for the support and positive feedback about Dr. Wehby and Emanuel. I saw Dr. Wehby last week and we scheduled the surgery for next Wednesday. I also met with Child Life. They truly are great and gave both of my son's a tour and a little bag of hospital stuff to play with, ask questions, etc. I'm really focusing on the positive outcome for my son and expect this to be the beginning of a new, wonderful, chapter in our lives. All we have to do is be brave through this scary spot. Thanks again for all of the supportive posts!

--Cindy

Although I dont know anything about the procedure your son is going through I may have some ideas of making the hospital a little less scary for your children. My husband was in a terrible car accident and we have been helping our son Tanner cope with his feelings. See my blog entry just one month ago about what we did for Tanner:

http://erikmoline.blogspot.com/2008/04/tanner-daddy.html

The child life specialist we spoke to was very helpful. I think that getting the point across that daddy has big big owies and when you stub a toe that is an itty bitty owie was HUGE. I dont know if the 'doll' would be helpful to you (see that blog entry) but it was the best thing that we did for Tanner.

Right before daddy came home we made a calendar of about a week long. I drew pictures on every day. Daycare day's had flowers, days that were going to the park - a slide....I had something on every day leading up to the big day. We crossed every day off and it was helpful and fun. I think you could so something similar and possibly count toward something after the surgery.

Also, the doctors kit and books were helpful. There are a bunch of books about going to the doctor and my trip to the hospital that you can get.

I know that our situation was very different than yours, but maybe you can change things up a bit and make them work for you too.

Good luck.

kudos - dr wehby is THE best - both our daughters had the surgery - both had amazing results - their tether was such that neither could walk or move - as well as bladder issues - the care at emmanuel is excellent - both girls laid flat until 36hrs and then left and you'd never had known they had surgery - my 2 yr old took her first steps 20 days post-op - amazing!
best of luck to you - you have the best care!

I have read alot of your responses and I decided to add my experiences. When I was about 7 weeks old I had surgey to cut the teahered spinal cord. The doctors told my parents I am good to go for life. I am now 16 and i have been recently been having alot of pain around my scare. I went to see a nuerosurgen and they told me there was a 80 percent chance of it reattaching(wish I knew that earlier)

So basically the only way of telling for sure if it reattched would be by surgey. So for now i Cant do my favorite thing in the world and that is High School Wrestling because of fear of loosing feeling in my legs. Please get back to me

Nick.1867@yahoo.com

My son didn't have any symptoms until he was 13 years old. He was not diagnosied until he was 15years old. We went from doctor to doctor. OSHU wanted to give him antidepressents! He's pain was real and thanks to Dr.Kingsbruy and Dr.Wehby. He is pain free and feels great!!

This last month my daughter age 11, has been having symptoms. We are waiting for the referral and appt. W/ Dr.Wehby and We will see what happens. But with care like her brother recieved I'm sure she will be fine.

My then 5 year old son had tethered cord surgery by Dr. Wehby last spring. His main symptoms were lack of bowel and bladder control. He has been much better since the surgery but almost one year later we are still dealing with bowel control issues. I am wondering if anyone else continues to struggle with this and if you have found any thing that has helped. Physical therapy, vitamins anything? Thanks.

My son is 4 1/2 months old and was born with spinia bifida occulta and a teathered cord. He has to have surgery in less than a month to untether his cord. As you all can imagine I am terrified. He is a perfect normal newborn right now (no neurological damge that we know of) and I am just so scared his spinal cord will be damaged or something will happen. If you have any advice escpecially on the surgery or the recovery or anthing else please let me know. Thanks for your help!!
-Krsiten

Kristen my daughter had that surgery a year ago, she was also only 6 months old at the time. The neurosurgeon that operated on her said of the types of surgeries he performs, untethering a cord was the most minor. He also really down played the recovery but I did feel the recovery was worse than he had made it out to be. They had her on a morphine drip which was hard to see. And they have to be on their stomachs for 24-48 hours which my daughter absolutely hated. But it really wasn't that bad, and it's actually very lucky to find the diagnosis before any problems begin. I also believe it's so much easier on a baby that young, I can't imagine going through it with a toddler. I'm curious if your baby seemed to be feeling any pain from having the tethered cord? Our doctor said "probably not" but I know that my baby used to cry about 15 hours a day before having the surgery. If you want to email me directly with any questions please feel free.

Kim, I would love to talk to you more about your daughter's surgery & recovery. I don't know how to get your email address, but mine is kmhomicz@yahoo.com.
thanks for your help!!

Hi Kirsten and Kim,
I'm from Calgary (not Portland), but I just read your posts here. Yesterday, we found out that our 7 month old son has a tethered spinal cord. I am so thankful that they discovered this problem now, yet also feel a bit fearful that his spinal cord will be damaged in the surgery. The recovery also is daunting. Kim, is there any chance that I could email you questions, too? My email address is annietaylor@shaw.ca

Hey Kristen and Annie, I just emailed both of you so you have my email address. I'm more than happy to answer any questions. Try not to worry to much. Our little girl is doing great now.


Did anyone have trouble with the actual diagnosis process? My daughter is in so much pain and we seem to be going from doctor to doctor. She has bladder and bowel problems, althoug not as much no since they started her on Merilax, but she also has severe back and leg pain. She is on muscle relaxers and valium. Her ultrasound showed that she is have fluid flow back to her kidney's and her bladder holds more urine the normal. The MRI seemed ok, but Dr. Shih is not convinced. We saw a neurosurgeon at OHSU that said nothing is wrong, we are currently awaiting our appointment with Dr. Wehby in June. I am just wondering if anyone else had the same problems. She has all the symptoms, just the MRI came out "ok". But from what I read and have been told, that happens often. Did anyone else have the same type of MRI and still have their child operated on by Dr. Wehby? Please email me at amymamy2002@yahoo.com Thanks so much.

hi i've been reading all of these posts and found them a great help,unfortunately i can't see any of the doctors mentioned as we live in england. however my five month old son Charlie is seeing a surgeon on friday to find out what and how they go about untethering his cord he has something spiking through his which has split it in two at the base,apart from a slight foot problem (clawed toes on left foot) you wouldnt know there was anything wrong with him. As for the pain our consultant described it is a pins and needles discomfort as opposed to pain. My son also has a cyst called a syrinx on his spinal cord and several hemiverterbrae. if anyone has experienced either of the above please let me know. Thanks
Hayley

hayley, and anyone else, my son is 6 months old and needs surgery. he also has the syrinx in his cord. does anyone know of an adult or teenager who had the procedure done and has no problems as of now? i'm all for it but my husband is leery. any help would be appreciated!

xroseofmyheartx@hotmail.com

i myself was born with a tethered spinal cord. they noticed it when i was 3 months old and i had surgery to remove it then. as i was growing up i had problems with my legs and feet growing and urinary and bowl problems. so i had the surgery again when i was 14 years old because it has retethered. i am 22 years old now and i still am not sure if it has retethered and doctors have never really helped me or were able to tell me if it will keep tethering so till this day i am clueless and have been thru so much ....if you need to talk or questions i have an email... amberbricker@rocketmail.com

My four year old was just diagnosed with a tethered spinal cord two days ago and I am finding it hard to get more than just cold hard facts about this problem. These comments have been helpful to see the real life stories and all the great outcomes, it really eases my heart.

Hi Everyone,
My son, Nolan, had detethering surgery back in May at the ago of 5 1/2 months. He is doing great. The surgery itself went very well according to the surgeon even though he had a reaction to the anesthesia medication. He recovered very quickly and very well. He is doing great so far. There were a few set backs after the surgery (stopped rolling over, etc.) however, those quickly retured and he is doing much more. He is now sitting up by himself and can even get to the sitting position alone. He is starting to learn to crawl and has great stregnth in his legs. As for his bowel and bladder. I am not sure. We have appointments next week with a ped. urologist. His surgeon said to just watch him. He didn't even recommend that we go to the SB clinic.... I hope this helps. If you have any questions please let me know. I am still learning a lot, but have also already learned a bit. best of luck to everyone

My name is Erin and i have a beautiful little 1.5 month old girl i live in edmonton alberta and am going through a really hard time with doctors and getting this mri done. My lil one had a very traumatic delivery and we were not told of her dimple until she was released. one doc says they are not worried and another is. Im so confused anyways she is supposed to have an mri but no one is calling us with a date or time and they told me it could take months to get one here. her ultra sound showed she may have a tethered spinal cord, and im scared. how do i get doctors to move on this as i heard letting this go everyday can make things worse
she already was back in the hospital with a uti

Hi, I live in Ontario and my beautiful 19.5 month old little girl is currently waiting for an MRI. The neuro doctor suspects she has a tethered spinal cord. She has been reaching all her milestones but can not stand alone or walk. She have very weak legs, she can crawl, but even so it's slow and she gets tired very easily. We go to physio and she hasn't declined, but no big improvements. Hoping to speak with some parents that are going thru the same things or parents that have already been thru this. How are your children doing, how was post op...just need to speak with people experiencing the same feelings and anxieties.

I live in Ontario too and my son was diagnosed with a tethered spinal cord 3 days ago - he is currently 4.5 months old. The nurse at his delivery noticed a deep sacral dimple. He had an ultrasound at 3 weeks old that showed the dimple was open but the MRI has since shown it is closed (so no chance of infection) but there is tethering present. We had to wait about two months for an MRI at Sick Kids in Toronto. Our doctor has suggested to wait for the operation. He is going to see him in one year. I am worried about progression of the condition during this time but I also don't want to put him through any unnecessary surgery.

All is well now but it was difficult...

My child was 3 months when my husband, who is doctor, noticed issues...It was confirmed at Childern's Hospital in Boston. His spinal cod was tethered and pulling.. My son is now 12 yrs,and totally healthy.H e can run and play, thanks to his doctors skill.

BUT...We have spoken to very few people about this time in our life.

I do not want people to know the darkness, how life can be so cold and black. My son developed an infection from the surgery for tethered cord, and he was on the cusp of life and death for 3 weeks. I had dreams of him in a casket, more then once. We had no idea if he would make it. Every night we did not know if he would spike a fever, due to the infection, and the infection would pread to his brain..His would was leaking spinal fluid for weeks, he would not heal.

...But, it has been dark period during our lives, that I have kept close.. I saw things in the neuro-ward that Steven King should experience. He would never write a story about the horror.In fact, he would never write a horror movie again... The pain and darkness that children can endure is unbelievable!! We saw the innocent children, tortured and dying. Unfortunately, the child sharing our room died, and I saw it all. It is so dark..where was the Lord?? How could he leave these children to suffer and die??? I felt was sure that my child would be next. The incident was so sad and gruesome. The only light was a call from a mom at the doctors office saying she was not suppose to say anything but she had a son who had a tethered spinal chord and was 11 yrs old and he was just fine. It was such a special call..

After the hospital, my baby had night terrors for two years. These nights were very difficult to say the least...He would scream with his eyes open..nothing would comfort him...I would cuddle him and my husband would hold him..nothing would stop the creaming.. but we were there. In addition, there were many hours of nurses, physical therapist and the rest..The horror continued, but with amazing love and support we all made it. It was a very difficult time...I thought that one would have the operation and that would be it. But, actually it is a life long condition...love...lots of love..

WOW..It was hard..but my child is loved and we all made it...But did I mention that it was soo hard on my husband and I???

WE ALL MADE IT WITH TONS OF LOVE..

Been there ...tought but made it!!

through..Scared but fine and in the end he made it and is now 12...

I have not shared this with many people but now feel that I can say it will be fine.
s.. and all the memories can back...

IN THE END, YOUR CHILD WILL BE FINE....Praise the Lord! Keep the faith...any faith and you will make it.

Deanna, I don't know if you will read this but please dont wait for a year - do the surgery as soon as possible. That's what I heard from our doctor. She said "it is best to do it before 3 to 4 months" but of course you have to first find the problem. Since you have done that already (undetected would be worse) please ask your doctor to not wait even for a month. I know in Canada you have to wait, but get going on this..
God be with you and baby.

Hi, I live in Chicago I have a 7month old baby that have tethered spinal cord. Does anyone know a good neurosurgeon that could do the surgery to her? I read in this article about Dr. Wehby, where is she? She has some bladder problems, but her current Dr. can't assure us if she will develop some problems. My email is srpalacios@live.com

i need to know if you can get tethered spinal cord after two car accidents and if there is a certain test that can determine this. No doctor can figure out my back problem and I am in excruciating pain during flexion or extension. If you move my skin which moves my connective tissue on my lower back it feels like when you hit a nerve on your teeth. Or like when you sprain your wrist and you cant put any pressure on it. I fall to my knees when i cough or sneeze ...no sudden moves or I collapse. Not one pain medication or treatment i have recieved and i received them all did anything for my symptons. I am a medical mystery they say.
Please Any info anyone has would be greatly appreciated since i have lost all hope.

Lisa,
Yes! There is research that shows If you have undiagnosed or asymptomatic TCS, a MVA can make symptoms surface. Accidents that cause a jack knife effect or any spinal cord trauma can cause back pain symptoms. Go see and get a MRI ordered by Dr. K. Abtin in Hillsboro. He and Dr. Wehbe worked together and he is the adult TCS expert in area.
Four years ago, I was rear-ended by a FedEx truck. I had cervical surgery with a fusion, but still suffer excruciating lower back pain. I have turned into a chronic pain patient and have done countless epidural steroid injections and nerve ablation with no relief. Medications do not touch the pain either. No one has really pinpointed what is causing the back pain or where it was coming from. I was ready for back surgery and went to see Dr. Abtin to get his thoughts. He ordered a MRI at his hospital and discovered I have TCS. I am planning on surgery Nov. 3rd. Hopefully, this will take care of my pain. I will check back on this website after my recovery.

Does anyone know what Tethered cord surgery recovery is like? I am 43 and am having the surgery Nov. 3rd. I know the textbook version, but would like some personal experience. Thanks for your help! Kim

My 14 year old daughter went through the RND program (for chronic pain) at Legacy Emanuel Hospital recently. The doctor thought that her RND could have possibly been triggered by a tethered spinal cord. He recommended that she see Dr. Wehby so we have and appointment in December.

My daughter has scoliosis and leg pain. She does have pain elswhere at times too. Her legs have gone numb at times. Her MRI came back normal. Her ultra sound showed that the amount of fluid remaining in her bladder was normal but on the high end. She also recently had two bladder accidents - at night while sleeping.

Just wondering if anyone has had an experience similar to this or if anyone has any advice for me.

My email is tconnors@bresnan.net

my 4 year old grandson has tethered spinal cord. We are still waiting for more test, but we would like to hear from anyone in louisville ky area on what doctors they had to do thier child's surgey, and what to expect during ans after surgey. He is also very algeice to milk, cho, eggs, fish, nuts ,milk products, is this commom with this problem, of course his dha levels are low,we give him pediasure everyday trying to keep his nutrition level. He also has hammer toe on both feet. Please me at momatcher @gmail.com

My daughter is 6 and had tethered cord surgery at Doernbecher Children's Hosp. in Oct. We have kaiser insurance and her MRI also showed that nothing was tethered but the neurosurgeon
at Doernbecher saw differently. We opted for surgery since as of last summer her symptoms had progressively been getting worse since June of '08 when they first started. She finally ended up with little or no
bowel/ bladder control when we opted for surgery. It has been 3 months and we have seen very little improvement. It's hard to tell if parts are laziness at this point or still she can't feel the sensation. I would love to hear from anyone that has been in this situation and to know if your child's bladder/bowel problems have gotten better. My email is sunsets4two@aol.com

Danielle

My precocious, vibrant daughter Sydney is 3. She seemed to me, physically healthy and perfect when she was born, save for a funny bump just above her bottom. But last year, when we took her to a pediatric plastic surgeon for a consult on that fatty lump, she was diagnosed with a lipomyelomeningocele (tethered spinal cord).

We have been blessed so far, as she's been nearly asymptomatic. She walks & runs normally, hardly complains of pain. But we are engaged in an epic battle of potty training. I am beginning to fear that the potty training struggle is due to nerve damage and this is the first warning sign of a future of incontinence, if we leave it untreated. Her tests showed, for the most part, normal bladder function, though she may not be voiding completely.

We have consulted with neurologist Dr. Nalin Gupta at UCSF as well as Dr. Gary Magram at Children's Hospital Central California. Sydney's MRI showed the fatty tissue was quite involved with the cord, that a detethering surgery would be complicated. I respect their knowledge and experience. Both feel given the absence of clear symptoms, the risk of surgery does not outweigh the benefits. But I have seen several studies showing early intervention in children can be beneficial as well as preventative. Her doctors would like to take a wait and see approach. They've warned me of the potential of nerve damage and retethering. I know surgery doesn't guarantee success. But I just don't know if being so conservative is the best approach. What would you do if this were your child?
yunsoo_99@yahoo.com

My 8 year old daughter Hannah was diagnosed with Tethered spinal cord by Dr. Wehby after 4 years of doctors's visits and no one knowing what was going on. She started having potty accidents and had multiple UTI's, they wanted to put her on daily antibiotics because she seemed to always have an infection and nobody knew why. Then about a year ago, things got even worse, she started having bowel accidents too. She had always said she couldn't feel it when she had to go to the bathroom. I wasn't sure what to believe. Finally my pediatrician here in Eugene referred me to Dr. Wehby at Emanuel in PDX. Hannah had an MRI, it was inconclusive which Dr. Wehby said was not uncommon. I guess the issue with the tethered cord is that it isn't always obvious and the diagnosis is based on making sure it isn't anything else. So she saw the Urologist at Emanuel, had more testing including a VCUG, ultrasound, etc. All of that came back normal, so back to Dr. Wehby who told us all signs show a tethered cord. So I wanted to clarify that for everyone, there isn't always a hard and fast test to determine, which as a parent is really difficult.

Hannah has her surgery scheduled for next wed, 2/3, we were lucky and have the 7:30 am slot so she will be the first surgery of the day. I trust Dr. Wehby but am still pretty nervous since there isn't that hard and fast test....I really hope that all of this will be over soon, but do know not all kids recover all of their function, or it may take a while. Wish us luck and I will post how she did.

After calling Dr. Wehby's office for a consultation appointment for my 6 year old daughter, (we ended up going out of state for her treatment) I was shocked by the incredibly rude receptionist I encountered. Her name was Vivian and I have never dealt with anyone like her. In her position, one would expect, wish and hope for someone with a little compassion and decent manners. I have talked to two other Mom's who had the same experience, but want so desperately to see Dr. Wehby, they just had to endure her wrath. Anyone else have this same problem with Vivian?

This has been really helpful to me! I don't live in the Portland area (Cleveland, OH) but my 4 year old son, Noah, is having a lot of trouble potty training (especially bowel movements) and has a sacral dimple. He sometimes says that his "knees" hurt and then points to his shins. I was dismissing this as either "growing pains" or an excuse to get out of doing something like cleaning his toys. We were referred to a pediatric GI doctor at the Cleveland Clinic and she suspects tethered cord. We go for the MRI on May 3rd. It had been reassuring and informative to read your posts here. Thanks!

My son will be meeting Dr. Wehby in 2 weeks for Tethered Cord. I've been hearing amazing things about her.

He's 5 years old. He's been severely constipated since birth, and has been on Miralax to treat that. He was a late walker, and has Apraxia of Speech (moderate-severe). He's been in speech therapy for 2 years, and it's helping tons!

But we had him tested with a Physical Therapist since he wasn't going down stairs correctly, had a very funny gait. His PT eval showed that he was at a 22-41 months development (he's 60 mo). So the PT suggested Tethered cord. We then were referred to a Neurologist (Dr. Shih-loved him) and then he referred us to Dr. Wehby, after he ordered and read the MRI.

Anyway, I'd love to hear what people have to say about Wehby, and about the recovery from surgery. I've heard the kiddo needs to lay flat for 24 hours, how?! Do they sedate them? That's going to be a big challenge. :) Anyway, all of the insights have been great thank you!
Melissa
Mom to Chandler 5, & Lincoln, 2

We are meeting with a neurologist in Birmingham, Al on June 8th to discuss my 7 month old daughter's tethered spinal cord. This page has answered more questions than all of the medical pages I have researched.

We recently had an MRI on our 5 month old, it has determined that she has a tethered spinal cord . We are seeing Dr. Selden @ OHSU. Has anyone dealt with him? We are thinking of trying to see Dr. Wehby for a 2nd opinion.

Here's our update!
Chandler had surgery June 7th at Emanuel Hospital in Portland. Dr. Monica Wheby performed the surgery. It was amazing how quick it was, about 1 hour in the OR. He had to stay in bed at the hopsital all day and night, he had a Foley cath so he didn't have to get up. He slowly began to raise his head in the morning, then by 9 he was sitting up. He stood up about 10, and took a wagon ride. He was released by 11.
He was on Tylenol w/Codeine when he came home (and antibiotics) on Tuesday (alternated with Motrin), and was off all pain meds by Friday! Amazing!
Now 4 weeks post op, it's incredible. You can see the 1.5 cm scar, but you'd have no idea. He's talking more, moving more, and is more vocal about his needs.
Dr. Wheby was great! I highly recommend meeting with her and her PA, Jenny. I am so thankful that we did the surgery and got him all fixed before Kindergarten in the fall.
Melissa

Hi I am 51 yrs of age and now have a tethered spinal cord, born with spina bifida ocult. Never had a problem all my life. i have appointment with a neurosurgeon in Toronto July 27,2010 Have to admit I am very nervous of the outcome of the surgury. Hearing your story gives me some relief. The pain and discomfort, that i have and the inability to move as I have for 51 years cause great saddness I wish your son he best God bless

If anyone has dealt with Dr. Seldon @ OHSU please email me and let me know. We just had a 2nd opinion meeting with DR. Wehby and we are abit confused on who to go with.

If anyone has experienced Dr. Selden plz let us know.
anniewro@yahoo.com

Thanks Annie

Hi,
My two year old son had the tethered cord surgery last Wed. at UCSF by Dr. Gupta (he was wonderful and the surgery went smoothly, as did the hospital recovery). However, my son now has some slight swelling below the incision. We saw a different neurosurgeon, who said that the swelling was in the range of normal, but of course we are still worried (about a CSF leak). Did anyone experience swelling after the surgery? If so, how much and how long did it take to go away? I'd really appreciate the feedback.
Thanks!
Carrie

Hi Carrie,
When my son (5 yrs) had his done in June, his surgery site became VERY swollen. I was warned by his surgeon that it could look like a golf ball off his back. And it did. At Post-Op a week later it was still large and she said it could take 6-8 wks for it to go away. It didn't but it was swollen for 3-4 weeks. And I know it didn't hurt him, because she was using alcohol to remove the steri strips. She was rubbing hard to remove the goo. He didn't flinch.
CSF leak, probably, would have showed up by now. If you are worried, call your dr.
Happy healing!!
Melissa

I have 3 children. After a car accident my 5 year old son at the time had started tethered cord symptoms. Only we were not aware of it. We thought it was all from the car accident. I believe the accident prompted the symptoms. He had surgery from Dr. Wehby and turned out fine. She is great. Now my 16 year son had been to so many doctors. OHSU is a joke. They only wanted to say he has chronic headaches and put him on antidepressant. They would not help him. It was not until we went to Dr. Kingsbury did we get a thorough examination. That dr. is wonderful and a saint. He did refer us to Dr. Wehby. He did have his surgery. We are still waiting since it has been so long that he has been experiencing pain and muscle spasms for his symptoms to go away. Muscles have memory. My daughter is 11 we are waiting watching for signs for her as well. I feel for anyone to go through all this and to be told over and over again nothing is wrong. OH and FYI just so anyone knows MRI are not always full proof for detecting this tethered cord. Some times symptoms will lead to the diagnosis. And don't listen to OHSU when they tell you that you have no symtpoms and MRI are fine. They don't look at the MRI and they don't know what they are talking about. Although they sure are confident in their decisions. My son also has Chiari which I pray will not be a factor for anything further with his health.

My 5 months old daughter was diagnosed with tethered cord syndrome. Her pediatric neurosurgeon recommended to go for a surgery to detether the cord other wise there is 10-15% chance for her to have bowl movement problem or delayed potty training. He said she has to be on her belly for 24-48 hrs after surgery. Parents of the Kiddos who had undergone this surgery - how will be the pain for the kids after the anesthesia worns out? how long will the kids have pain? can they tolerate it?
My kid will not stay in one position for couple mins. She will be always moving. How can we keep her still for 24-48 hrs?
Unfortunately I am not from west coast. I am in Virginia does some body know of any good surgeon in this area????
Any help is greatly appreciated.
Pavan

My daughter Sydni had alot of speech problems, physical therapy, occupational therapy, and wears oropedic inserts in her shoes throughout her lifetime. When she was 5 years old in 2008 she had 2 concussions 1 in March and the other in June. She ended up with terrible headaches in September. I took her to the doctor and she said we are going to do an MRI in October. We meet with the Neurologist in November and he told us she had tethered cord sydrome with a syrnix and she also had chiari 1 malformation. We went to the neurosugeon in December in Calgary, Alberta and he told us she needed to have it sugerically fixed or she could end up with long term numbiness or scholosis. She had a 6 1/2 hour sugery April 2009 on the both things. She had to stay in the hospital for 8 days. She is cleared until she is 12 years old when she will need another MRI. Unless anyhing comes up within that period of time. She had the sugery at the Children's Hospital in Calgary, Alberta, Canada. Doctor Mark Hamilton was wonderful and he prefromed the sugery.

It was a very hard for our family. We also had a 7 1/2 year old son.

She had always had problems with potty training and she just stopped wearing pull-ups at nightime about 14 months ago. She has started wetting the bed again at night time. I wonder if her bladder will ever be normal. She is now just turned 8 years old and is a very happy girl.

Had we never got the MRI done then we still would be wondering why is she so delayed. I believe things happen for a reason. Advice to people if you are doubting your child and you think something is wrong then follow your insinct. Be very persisent and if you have to get 2 or 3 opinions from different doctors than do so. You can be the only advicate for your child.


Hi all, I am so glad I found this conversation. I just spent the day @ Children's in Boston where we met with a neurosurgeon. We reviewed the results of my 5 yo daughter's MRI. If I am understanding the doctor correctly, A fatty deposit has led to a tethered cord which can be addressed with surgery. His explanation of the procedure matches what many of you have desrcibed.

My daughter was born with vacterl association. At first we were so busy dealing with esophageal, cardiac, and anus issues we were not as vigilant about questioning spinal problems. She had a cat scan at birth and they said it seemed that her spinewas ok. I always wondered about that diagnosis and felt that we missed something.

She has a sacral dimple and has struggled with constipation her whole life. She sometimes complains of leg/back pain and headaches. I have also noticed that she is not as flexible as her peers. (she is very active with dance, swimming, and karate classes)

Her problems with constipation finally led us to a motility clinic. They sent us for MRI. Now I am wondering if we are dealing with something that should have been addressed in the early months of her life. Regardless, we are here now and need to make a decision about what to do. My husband thinks touching her spine is crazy and the surgery is unnecessary. I found this site because I searched on "should you treat a tethered cord." as concerned as I am about the procedure and recovery, I think I am more concerned about the future if we do not treat this.

Thank you for sharing your stories, questions , and concerns. I found them all helpful. If we do move forward with the procedure, I will place a follow-up post on how it goes. Thanks, Claire

My daughter is 7years old and she has spinal bifida tethered cord syndrome and she had her surgery in august of last year and Dr. Wheby at at Emanual hospital was awesome she did the surgery .My daughter still has some problems with incontinence Bowl and urine . and still has frequent accidents
but hopefully with time it will get better.Right now we are working closely with the pediatric uroligist . .My daughter has her up's and down's but she is doing better than she was before the surgery . She is making Progress Slowly but still doing better .

This is a follow-up to my previous post. My daughter had a cord release surgery in March. The procedure went well and recovery seems to also be going well. We believe her constipation has improved. She seems to be regular more often than not. We still have some problems with bowel leakage, but I believe that is related to her imperforate anus repair. She has not complained of leg pains since the surgery. The one thing I noticed, and the doctor mentioned, is her muscle tightness. We need to find ways to help her loosen up now that the repair has been performed. I am thinking yoga, but would live to hear what has worked for others. Thanks, Claire

Hi everyone,
thank you for all your posts, they have really helped! I tried to get my son an appointment with Dr.Wehby but she is booked out until march. I was referred to her partner Dr. Berk instead. Is anyone familiar with him? We have an appointment on Friday but I've read so many good things about Dr. Wehby I'm hesitant to go to anyone else? Please let me know what you think.
Thank you again, Laurie

My 18 month old daughter had the detethering surgery less than 4 weeks ago and I can not begin to tell you what a difference we have seen! The recovery was fast she laid flat for 18 hours and was slowly elevated to a sitting position. She went home on the second day and by that evening she was walking again. She now has no constipation issues and is running around the house. You would never know she just had spinal cord surgery :) our Dr was amazing and the whole staff at Nationwide Childrens in Columbus Ohio were amazing. I am now pregnant with our second and was trying to find information as to whether or not I should be worried about this issue happening again. Would anyone happen to know what the odds are for that? Please contact me at a_bostick@yahoo.com

Hello,
Anyone else have experience with the TCS medical community near Boston area? I see Claire's post about Children's Hospital.
We are at the same practice and learning about our options for our 4.5yr daughter suspecting tethered cord.
Claire if you are still active on this list I would love to hear how it is going now and which of their 3 neurosurgeons performed your daughter's surgery.
And if anyone else has neurosurgeons to recommend in Boston/New England/New
York area, I would like to get a second opinion too and would welcome that info. My email is amancaya at hotmail dot com
Many thanks to this community!
My very best wishes to all of your families.

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