Unthethering Surgery--Mostly a Big Success

A place to celebrate everything wonderful!

Moderator: pmaxwell

Unthethering Surgery--Mostly a Big Success

Postby Dakota's Mom » Thu Mar 19, 2009 10:05 am

It has been 10 months since Dakota's surgery, and I must say that things have been good. Even his neurosurgeon was surprised by how successful some things have been. Almost immediately after the surgery, Dakota's bladder and bowel control returned--and it remains normal to date! He has only complained of foot pain once, and his gait is better. He still trips when running, but it is getting better. The biggest thing is that after 11 years, the child is finally sleeping through the night for the first time--staying dry and not tossing in pain. This is so huge!

He still has persistent rib and shoulder pain, and the syrinx has gotten 1 mm bigger in a few places. His scoliosis continues to progress, but the good news is that it is elongating rather than remaining really bunched up in the thoracic region. It is still too early for a shunt. His headaches and dizziness are better, but some of this is due to a new seizure medicine added to the regime. Seizures persist, but we were not expecting any miracles there from the surgery.

Overall, we are so glad that we opted for the surgery. Dakota was one of the "murky" cases where it was not clear if it was needed--MRI just not that definitive. But, when they saw the nerve spasms and the huge fillum terminale, it was so obvious once they got in that it was clearly needed. We could not be more thrilled with the results and do not have any disappointments.

We have pictures of the surgery that we will share if anyone wants to see what the fillum terminale looks like before the cut and what the spinal cord looks like afterward.

Rachel
Last edited by Dakota's Mom on Sat Mar 21, 2009 3:59 pm, edited 1 time in total.
Mom to Dakota (11)--Neurofibromatosis, SM (C2-T8), Left Thoracic Scoliosis, Seizure Disorder, Autism with Cognitive Impairment, Osteoporosis, Hypothyroidism, Untethering surgery 5/08
and Joshua (8)--happy, healthy, and supportive brother
Dakota's Mom
 
Posts: 62
Joined: Sat Oct 20, 2007 6:17 am
Location: Omaha, NE

Re: Unthethering Surgery--Mostly a Big Success

Postby Annalee Schilter » Thu Mar 19, 2009 11:31 am

Hi

How do you do it- you sound so brave-

My little Annalee age 7 was just diagnosed with Chiari- we have a neor looking at her Monday for the first time. It is strange to me because the headaches just came on this month and were in the back of her head. I still am in denial I guess after all these years she has been so normal and now am being told by friends that this is huge and very scary and I could possibly loose her and that it will be surgery after surgery. I am so sad all i do is cry, I guess I will know Monday the outcome for more answers.

I am very new to this site and want to know how you moms stay so positive?
Annalee Schilter
 
Posts: 4
Joined: Sat Mar 14, 2009 10:57 pm

Re: Unthethering Surgery--Mostly a Big Success

Postby jupes » Thu Mar 19, 2009 7:28 pm

Rachael,

Glad your son has shown improvement after his surgery! :)

You mentioned that the MRI didn't show a clear picture of tethered cord. My DD has a lot of the symptoms but no MRI evidence. Just curious how it was diagnosed (based on symptoms and urodynamic test ect???) and was it described as an "occult tethered cord"? Not many NS accept this without a MRI showing a low lying conus. If you don't mind me asking, who did your son's surgery! Thanks for the update and I pray he continues to Improve! :)

Welcome Annalee's Mom! :)

Sorry you are having to go through this! Your situation reminds me of how I felt when my DD was first diagnosed with CM/SM last year! All these emotions are normal. Just remember that what she has is not life threatening and many kids do well and some never need surgery. Others may need more than one surgery- each individual is different. Try to stay positive and don't focus on all the negative stories-their are many more positive outcomes that you don't hear about! This is a great place for support and information. Would be nice to have more people post their success stories. Keep educating yourself on this too!

I take one day at a time and try to look at all the blessings we have in our lives! Prayer and turning this whole situation over to God has really helped me get through all of this!

Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
jupes
 
Posts: 262
Joined: Fri Jan 09, 2009 2:37 am

Re: Unthethering Surgery--Mostly a Big Success

Postby Dakota's Mom » Fri Mar 20, 2009 6:51 pm

Hello, Annalee and Julie.

Bless you, Annalee! I am glad that I sounded positive, for there have been many days filled with worry, doubt, and fear. :-)
I agree completely with Julie that this site is amazing, direct yourself into real research and information (and not only the scary google searches that we all do!), and uplift your daughter and family in prayer and faith.

Our path to diagnosis and surgery was a long one, like so many. We finally accepted Dakota's pain and bladder problems as part of the Neurofibromatosis and the autism (as we had been told by so many). Dakota had a MRI of the spine when he was three (due to chronic pain), and we were told that it was normal. Dakota suffered from recurrent bladder infections requiring iv antibiotics, and his urodynamic studies showed high pressure when he was 5. Dakota's constipation was thought to be related to seizures and autism. Still nothing mentioned about tethered cord or spina bifida occulta (which has never been said, but now we wonder?). We found a new general doctor who took Dakota's chronic pain complaints seriously. He called our geneticist who referred us to a top orthopedic surgeon (Dr. Esposito, Omaha, NE) who discovered the left thoracic scoliosis. Because of the NF and the curve being what it was, he ordered an MRI and found the syrinx. He then referred us to our neurosurgeon, Dr. Puccioni at Midwest Neurosurgery in Omaha, NE.

I can't say enough about Dr. Puccioni. He is amazing--professionally and personally. He finally looked at all of the symptoms (ones that we long had learned to live with), and he put the pieces of the puzzle together for us. He was not as concerned about the syrinx only because its width remained small and stable. But, he casually mentioned that Dakota might benefit from the untethering surgery. He stated that he was "out on the neurosurgery ledge" by doing untethering based primarily on symptoms, but in all but one case, bladder control improved, and he felt that the benefits for the patient and familes are huge(the case that was not as successful, there were lots of additional medical and neurological issues, but bladder improved a little bit). He also stated that in 100% of the surgeries that he performed, he knew as soon as he saw the fillum terminale that it really needed to be done--regardless of the MRI findings. It also helped us decide to do the surgery when he told us that his son (who was 3 at the time) had the surgery with similar symptoms and great success. At the three month follow-up, we scheduled the surgery. Of all that Dakota has to deal with--so much of it we can't "fix" with surgery or meds, how could we not do it? When his bladder control really began to fade and then losing bowel control when sneezing, we knew it was the right decision and so glad that the surgery date was only three weeks away.

There were a few people who kindly tried to steer us away from Omaha (and we were very grateful for their advice and concern), but I truly can't say enough kind things about Puccioni and the staff. I only hope and pray that other families find similar help and relief from the surgery and doctors who will listen. For us, it has been a huge blessing.

Your families will be in my thoughts and prayer. Thanks for your replies!

Rachel
Mom to Dakota (11)--Neurofibromatosis, SM (C2-T8), Left Thoracic Scoliosis, Seizure Disorder, Autism with Cognitive Impairment, Osteoporosis, Hypothyroidism, Untethering surgery 5/08
and Joshua (8)--happy, healthy, and supportive brother
Dakota's Mom
 
Posts: 62
Joined: Sat Oct 20, 2007 6:17 am
Location: Omaha, NE

Re: Unthethering Surgery--Mostly a Big Success

Postby Pickrel_D » Thu Apr 02, 2009 2:43 pm

That's a great story. I'm glad things are looking up for Dakota. I'm in my late thirties now and had my second de-tethering surgery a year ago. Although the doctor felt it was a success, my symptoms did not improve. But at the same time, I feel they may not be progressing for the worse as fast as they were prior to surgery. I am not sure on the severity of his bladder/bowel incontinence, but I have seen some medical reports that they are making great strides in isolating optional bladder stimuli (nerves) that may allow someone with neurogenic bladder to someday be able to completely empty without a catheter. It's probably too late for me, but for the young ones now, it's really promising how far the science is coming.
Pickrel_D
 
Posts: 21
Joined: Wed Oct 17, 2007 12:17 pm

Re: Unthethering Surgery--Mostly a Big Success

Postby kellbell » Sun Apr 12, 2009 5:43 pm

Hi, Dakota's Mom

Glad to hear of your son's successful surgery. My DD just had the detethering surgery on April 6 and she seems fine, but the bladder problems, we're not sure about yet. You mentioned that you had pictures of the surgery; might you be willing to share these?

My DD is 7 and I think it's too soon to tell how successful her surgery is. She has little back pain, but severe headaches since the surgery, and now is complaining of heel and left leg pain. We hope for more improvement with time.

Thanks for sharing your story.
Sincerely,
Kelly
kellbell
 
Posts: 17
Joined: Sun Apr 12, 2009 5:36 pm

Re: Unthethering Surgery--Mostly a Big Success

Postby Dakota's Mom » Mon Apr 13, 2009 9:15 am

Hi, Kelly.

Thanks for the reply! I hope that you see more positive results from the surgery soon! I think that one of the reason that we are seeing such success is that when they got into the spinal cord, all of his nerves were in spasm. Within seconds of cutting the fillum terminale, the spasms stopped. Our NS said that he had not seen spasms quite like Dakota's before, and he was thrilled to see them stop so quickly. With the spasms gone, the pain and the bladder problems seem to be gone now! :-)

I can email you the pics if you want. I have three--the spinal cord open, the spinal cord with the fillum terminale exposed prior to cutting it, and the spinal cord after the ft was cut. It is pretty amazing to see! I haven't quite figured out how to post them here at the site, but I am more than willing to post them or email directly.

Best of luck to your daughter!

Rachel
Mom to Dakota (11)--Neurofibromatosis, SM (C2-T8), Left Thoracic Scoliosis, Seizure Disorder, Autism with Cognitive Impairment, Osteoporosis, Hypothyroidism, Untethering surgery 5/08
and Joshua (8)--happy, healthy, and supportive brother
Dakota's Mom
 
Posts: 62
Joined: Sat Oct 20, 2007 6:17 am
Location: Omaha, NE

Re: Unthethering Surgery--Mostly a Big Success

Postby kellbell » Mon Apr 13, 2009 2:27 pm

Thanks for getting back to me, Rachel, I appreciate it. I'm so glad Dakota is doing well. That's great. Sophie is doing better today with the accidents and we do remain hopeful.

I would really love to see the pictures if you could e-mail me directly. I'm not sure of the rules about direct e-mail. If it's allowed, if you know, then I can send you my e-mail address.

Again, I appreciate your reply.

Thanks,
Kelly
kellbell
 
Posts: 17
Joined: Sun Apr 12, 2009 5:36 pm

Re: Unthethering Surgery--Mostly a Big Success

Postby Dakota's Mom » Mon Apr 13, 2009 2:56 pm

Hi, Kelly. I sent you a PM.

But, I thought that I would let everyone else know this, too. I know that there is a way to post pics here, but this seemed easier than figuring it out. :-) So, I posted them on his caringbridge site. I can't find the first picture showing the spinal cord with the filum terminale before it was removed to cut. But, I have the ft exposed before cutting, the spinal cord after is was cut, and the sutures on the spinal cord.

Not sure how long we will keep the pictures on the caringbridge site as we are getting ready to leave for another 8 weeks in Omaha and not wanting to gross out too many family members checking in. :lol:

Also, one of the other tethered cord posts triggered a memory from Dakota's surgery.....His NS said that when he cut the ft, it did exactly what he wanted it to do--spring like a rubberband being shot. This meant that he needed the surgery. Not sure what happens to it or where it goes.

Ok.....enough of my TC discussions for awhile.....well, until taxes are done at least! :wink:

Rachel
Mom to Dakota (11)--Neurofibromatosis, SM (C2-T8), Left Thoracic Scoliosis, Seizure Disorder, Autism with Cognitive Impairment, Osteoporosis, Hypothyroidism, Untethering surgery 5/08
and Joshua (8)--happy, healthy, and supportive brother
Dakota's Mom
 
Posts: 62
Joined: Sat Oct 20, 2007 6:17 am
Location: Omaha, NE


Return to Share Your Success Story!

Who is online

Users browsing this forum: No registered users and 1 guest

cron