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Member
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Location: GA | I was wondering if any of your children have had a tethered spinal cord and the subsequent surgery. Our daughter is scheduled for the surgery in Atlanta on Sept 17th and I don't have much information on the recovery process, and I would love to hear from anyone out there that has gone through this to know what to expect.
Thanks so much!
Warmly,
Cristy |
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Extreme Veteran
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| Cristy,
Caroline had her t/c release (Dr. Wm. Boydston) and the one thing I'll stress is to keep her down for as long as they say. Caroline had a major CSF leak following surgery and required a 5 day re-admission. Right after surgery, and I can't remember how many days after, she was to lie flat. It was so hard keeping her down at age 6. Hard lesson to learn. Best of luck to Gianna!
Shannon |
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Elite Veteran
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Location: nixa mo | Noah had his TC release in SA this past July. Noah's surgery was more complicated than most. He had a lipoma at the cervicothoracic junction where his kyphoscoliosis is, and a tight fatty filum. The fatty filum was a "simple surgery." The lipoma removal took over 5 hours. He was on his stomach or tilted on his side for 96hours post op and continued to be intubated for another 24 hours after he was allowed on his back. After he was extubated he had severe muscle spasms and had to start valium which was a lifesaver. Dr. Mancuso sent him home on a tapering dose of the valium which kept him calm for about a week and a half. He has had no complications. Dr. did recommend a stool softner for 3 mo post op to prevent straining to help prevent CSF leak; so far so good.
What kind of tether does your daughter have? Hopefully it's a "simple" one. Most kids aren't in the ICU as long as Noah was but due to the area of the lipoma and conservativeness of his doc he was in almost a week, but thankfully it was all worth it.
Keep us posted |
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Member
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Location: GA | Diane-
WOW! Thank you for sharing your story. She has a lipoma at the base of her spine where it is tethered and fatty filum too. Dr. Boydston said it would be an hour surgery and that she had a more rare tether but that it would never re-tether like many do. Whatever that means.....
I may ask for valium. She a 17 mo old go-getter and there is NO WAY she could stay flat or even mostly flat for a day much less a week. Especially if she feels better... The post op period is the part that scares me the most.
Thanks for the info on the stool softener. I will take all these tips and get the softener before we go . Did you get an RX for it or do they have something over the counter?
When does your son have his VEPTR surgery? We just got approved by Dr. Campbell for the eval on Nov 1-2nd.
I will be following your journey as well! |
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Elite Veteran
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Location: nixa mo | Noah may have his surgery this fall if he fattens up enough. Like most kids here he's skinny, but up 2.5 pounds last month we also have to get another MRI and get that cleared he's tentatively scheduled for Oct., but we'll see. This whole experience has been very much hurry up and wait so I try not to get overly anxious or excited about dates anymore. Good luck with your eval. The Holiday Inn gives a great rate for the area Lori will send you a list of hotels if you need. Hope the TC release goes smoothly for you and your daughter and family. The hospital docs had Noah on Colace then at home our doc has us use Miralax. I don't think it matters what kind as long as they don't strain. Keep us posted.
Best of luck
Edited by Diane17 2007-09-07 7:52 PM
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Extreme Veteran
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| Cristy,
Glad you're getting into see Dr. Campbell so quickly. Good luck on the 17th. I'll try to stop in that week if you're up for a visit~
Shannon |
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Veteran
Posts: 192
Location: Bloomington, IN | I have a question about the tethered cord issue. On Marlee's MRI report it says that she has a producing myelomeningocele. Does anyone have a child that has had this removed, repaired, whatever they do to it?!?! We do not go to see the neurosurgeon for awhile, for me to ask them. And from what I read on the internet, I am just confused. I figured someone on here could explain it better. |
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Elite Veteran
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Location: Levelland, Texas | Kenzie has her T/C release in May with Dr. Mancuso in San Antonio as well. Kenzie had a fatty filum and Dr. Mancuso told us she should never have to have another T/C release ever again. Dr. Mancuso is an AWESOME neurosurgeon!! Kenzie had to lay on her stomach with her head tilted for about 96 hours as well and we also had to stay in the hospital a little longer than expected. We were there 8 days because Kenzie is on a vent all the time and since she had no movement for so long she ended up getting pneumonia and her right lung collapsed. Kenzie came home on just tylenol and has done fine. She also took miralax for a while. |
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| Hi Marlee's mom,
My daughter Amanda was born with a myelomeningocele (spina bifida). They don't really "remove" it they close it. She had a tethered cord release when she was 6 years old. I know that for Amanda after her Tethered cord release she felt a lot better. I think she felt less tightness. She is now 17 and doing very well. She had scoliosis along with all of that and had a Veptr placed as well 4 years ago. She outgrew the device and they decided since she was 17 they would remove the device and fuse her spine. She just started back to school on Monday.
My biggest concern with the tethered cord release was if there would be any nerve damage. I was concerned with loss of motor function as well as loss of bowel or bladder function. They were so reassuring and she came out just fine, actually she had better arm movement, etc. There are never any gaurantees but there are some wonderful surgeons out there and in 17 years of having to deal with doctors and different issues with Amanda medical technology has come a long way.
I hope that I have helped a little. It is hard not knowing your little daughter and her situtation completely but know that you are not alone. Hang in there and if you have any other questions please let me know.
Sarah  |
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Location: GA | Thank you all! As you can imagine, I am stressing and we are all scared. Knowing this is the first of many, many surgeries for her is heartwrenching. I know once we get into the groove, though it will never be easy, we will adjust to our new normal.
One good thing is that I was so upset over how I was going to keep her lying flat post op and I thought of a Moses basket. I went to the thrift store and found a brand new one and she fits!!! I carried her in it yesterday, and my squirmy monkey was calm, and relaxed and LOVED it! Whew! One stress down, three thousand others to go:)
Thanks again so much for all the support! |
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Extreme Veteran
Posts: 424
| Cristy,
Caroline lived in her wagon after her cord release. We padded it with pillows and took her everywhere~ she loved it!
Great idea about the basket!
Shannon |
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Member
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Location: SugarLand, Texas | Hello everyone,
We went to san antonio for our eval last a couple of weeks ago and was told that Deonc had a tethered spinal cord as well. This is very scarey for us however I know it will be for the better . My concern is her being face down for 96 hours. Deonc can't really tolerate being face down very long. I have so many questions and concerns I don't know where to start.
Be Blessed
Desiree |
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Elite Veteran
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Location: nixa mo | Hi Desiree,
Have you got an appt. to see Dr. Mancuso in SA? Noah had trouble being on his stomach for the 4-5 days, but they are vented and sedated during that time. Easier for the kids and SO hard for the parents. Noah had trouble due to his torticollis and curve but the nurses do everything they can to keep them comfortable. Dr. Mancuso will explain in detail her plan and go over the MRI with you. I hope you get the answers you're wanting. |
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Member
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Location: SugarLand, Texas | We have not had our appointment yet with Dr Mancuso but should be hearing something soon from Lori. I can't wait to sit down and talk about it with her. I was wondering if most of the Veptr kids out if the SA site get the tether surgery there or at their home hospitals? |
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Veteran
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Location: Phoenix, AZ | Hi Cristy,
Carter also had a tethered spinal cord: fatty filum terminale. Carter was 15 months old when he had his released. He had been walking, running and crawling prior to the surgery, but his crawl was what I call a military crawl. He used one elbow and the other arm normally. I was shocked to see his improvement after the surgery. We thought he had been crawling that way due to the scoliosis, but it apparently was due to the tethered cord.
I know that Gianna has already had her surgery, but I just wanted to give you some comforting information. I was so scared about having Carter sit still for the first day after the surgery, and I was right to be afraid. After Carter woke up from surgery he tried to get down out of the bed and walk around. The meds didn't really keep him down either. It took them quite a while to get him to calm down and stay still. I was SO worried, but everything turned out fine and no spinal fluid leaked out. I think we were in the hospital for three nights.
We also flew to PA to see Dr. Campbell. Our first trip was just for the meeting with Dr. Campbell and to see what he thought about Carter. He said that it needed to be done as soon as possible, so our second trip to PA was for pre-op appointments. That took two weeks. Then we went back a couple months later for the surgery, but only because the general surgeon had an open Operating Room time. Dr. Campbell was scheduled for two months after that.
We found Brian, Dr. Campbell's nurse, to be VERY helpful in explaining things and keeping in contact for the surgery.
I hope everything went well with the surgery,
Kristy |
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New User
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| Hi Christy,
I'm not sure how helpful this will be due to the age difference but I was diagnosed with Tethered Cord Syndrome when I was thirteen. I had release surgery a few months after my diagnosis because the soon-to-come complications would be severe (It took almost a year to figure out what was going on and by then, things had progressed a long way).
The surgery itself was fairly simple. It only took about an hour and I didn't have much pain at the incision, but after I'd left the hospital I had a few after effects. You should make sure that your daughter stays lying down and if possible with her feet elevated a little above her head. My doctor told me that I lost a little spinal fluid during my surgery and that I would need to lie like that to keep any air bubbles from reaching my brain and causing a spinal headache. As far as I know, the only danger is the headache, but it's very severe. The body replenishes that fluid in a few days.
I wound up having frequent headaches after my surgery. They were not spinal headaches. They felt different and I tried having a blood patch procedure that would have stopped them if that were the problem. If your daughter's headaches continue after a few days, I would suggest looking into any options to treat them immediately. Maybe doctors will have better luck with her since she's so young. I sincerely hope the headaches are unique to my case because they haven't gone away in seven years.
I hope I haven't concerned you; I haven't heard of anyone else having long-lasting headaches after surgery for TCS so this advice may be completely unnecessary. I wish you, your daughter, and your family the most pleasant surgery and recovery possible in this sort of situation. And be sure to keep her feet elevated. |
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| I want to know how are your daughter now! |
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Tethered Spinal Cord surgery?
