Tethered cord surgery

[Flmom]

Thank you for all that replied to my first post.

We went to the surgeon last week and he wants to operate ASAP because, of her MRI.She has so many severe symptoms. Her Cecostomy is not working . She just got out of the hospital today from a clean out. This was the 12th time she had been hospitalized for a clean out and she is three. The GI told he was so frustrated himself. He told me he would not believe how bad it was if he was not seeing it for himself.

I have so many questions about the road ahead of us. They are telling me they are hoping to stablize not improve her symptoms. Since we have been in the hospital I have not started my reserch yet. I would to hear about the surgery from those of you that have ben in my shoes.

Thanks,
Cheryl

[Summer25]

I am sorry they want to go ahead and do surgery. I had tether cord surgery at 11 which didn't turn out as planned, so I don't want to tell anyone in fear of scaring others.

[LisaJoy]

I've had 2 tethered cord surgeries, both in my 30s -- first was a conservative operation, which is why the second had to be done 5 years later. The two combined did successfully stabilize my bladder and bowel function, although I lost some function in my right leg (I previously needed no aids to walk, now I wear an AFO and use one crutch).

My neuro for the 2nd operation sees both pediatric and adult patients. He told me that young children bounce back very quickly from tethered cord surgery (he was warning me that it was not a walk in the park for adults, and he was right; nevertheless, I was back to work in 8 weeks).

I read a lot at the time and everyone says the goal is stabilization -- but almost everything I read indicated that young children often see improvement in function. But they are not going to raise your hopes. The other thing I got from my research is that doing nothing is not a good option if there are significant symptoms and/or marked deterioration. Growing makes TC worse. So I think you should follow your neuro's advice. Hang in there -- you will get through this.

[LisaJoy]

Here's a link that offers a pretty good summary and is certainly consistent with everything I've read:

http://neurosurgery4kids.net/tetheredspinalcord.htm

[angel]

My son had his tethered cord release in January of 99 (we had the episode of the bowel impaction in Dec. of 98) They had to dethether the cord because they felt that might be what was causing the problem. He had the surgery done but it really didn't seem that bad. He was in some pain the first 3 days. On the 3rd day we put him in a little red wagon with pillows and pulled him around the hospital. On the 4th day he was running up and down the halls as if nothing ever happened. The bad news is it didn't help the bowel problems. We have delt with them for the past 10 years (he is now 12 years old).

As for his recovery from the surgery it was very very smooth. Again he was only 2 years old so he bounced back very very quickly!!! I had it built up in my mind as it was going to be painful and horrible for him but he proved me wrong. After that 3rd day he was good as new.

My son also has sacral agenesis. His doctor (his urologist is the one that came up with the stratagy to deal with this problem) said it was unlike anything she had ever seen as well. It was probably the most severe case of consitpation in a child like him that she had ever seen. She also said that most kids with sacral agenesis don't walk. Consitpation is an issue with them as well but not nearly as severe. So he dodged a bullet because he can walk but on the flip side of that he has an extream case of constipation. If we have to be honest about it we will take the constipation because we have learned to manage it.

He went to see her a month ago and he was very impacted again. You couldn't even see his bones on the x ray because of it. This happens at least 3 or 4 times a year to this extream. As i said before we up the meds and use the cone enema. Only one time in the past 10 years has he been completly cleaned out when he went for a check up. We are half way to getting him cleaned out again. It takes some time with him. Before we met this doctor he was given laxatives and other things and it would work but it all came out at once and it was VERY VERY painful for him. It was hours of hell and when everything was said and done he was so exhausted he would litterally pass out because he was so tired. This doctor says it is better to work at it every day and use these tools to get it out in pieces. This really works for us. He does the cone enema by himself every other day. Right now he is doing it every day just to try and get it out faster. Some days he doesn't get a lot extra out and then other days he gets a lot out. We just keep at it and it has worked. I really like miralax because other kinds of laxatives used to make it terriable on him. He would projectile vomit and the cramps and the pain were just terriable. Miralax does not do that to him it is much kinder to his system. The cone enema helps keep the water in. We try to keep it in there at least 5 minutes with 10 minutes being our goal. The longer he can keep the water in the better it works. The cone shape helps keep that water in . It is very very easy to do. I find it much easier for him and a lot less invasive than a reguar enema.

I hope the surgery works for your daughter. We are here for you for any advice or help you need. I know how you feel right now and it is scarry. I think this time for us was the worst because he was so little and it was hard to see light at the end of the tunnel. He was 8 years old before we found this doctor and she made all the difference in the world.

Angel

[BrinaRad]

I just had my second detether oct 3, im 34 and my first surgery was in 1989 when i was 15. The first week was pretty rough to say the least, and i lost a little more feeling in my left foot after the surgery, however that is gradually doing better. I went to nuero this week and he told me i had no limitations in activity. He also to me i should keep improving over the next 3 months. I do know that this was alot tougher than when i was 15 years old.

[Dodger67]

Aging is a bitch!
I am increasingly having to remind myself that I'm not sixteen anymore!
I really miss being able to lift twice my own weight or ignoring a sore throat because it will be gone in 3 days instead of landing me in bed for a week or more. Getting older is not for wimps!

[Gymp]

A question for Brian (BrinaRad) or any other adult here if it's not too personal.
What were the symptoms/problems you were experiencing that led to your requiring the detethering surgery?
LisaJoy,thanks for the link in your previous post it's quite informative!

Gymp

[LisaJoy]

For me, it was sharp, stabbing pain in my lower back at the site of the defect and deteriorating bladder function (great difficulty emptying my bladder -- it was before I started catheterizing).

[Summer25]

I had bladder issues. I was leaking more. Come to find out it wasn't the tether cord that was causing the issue, it was my bladder.

[BrinaRad]

I was losing more sensation in my legs, less control of my bladder and bowels, and i was having almost constant lower back pain

[rachiebaby]

A question for Brian (BrinaRad) or any other adult here if it's not too personal.
What were the symptoms/problems you were experiencing that led to your requiring the detethering surgery?
LisaJoy,thanks for the link in your previous post it's quite informative!

Gymp

I don't even know I was only 5 all I know was my parents said I had to go to the hospital

[KatWrangler]

My daughter had her first de-tethering and lipoma debulking at age 4 1/2 months (she has lipomyelomeningocele). She had her 2nd de-tethering this past February and had just turned 2 years old.

We noticed she was falling more, didn't want to walk up or down the steps instead wanted to be carried. Then she started complaining her back her. Not only to my husband and I but to the Physical Therapist.

We were living in Montana at the time and our NS was consulting with Dr. Walker at Primary Children's. She had had new MRI's and Dr. Walker felt he could get more/all of her lipoma out.

We met with him and decided to go ahead with the surgery even though he said we could probrably wait 3-4 months. We didn't want to do that because I was pregnant. To have a newborn and then a toddler in the hospital would of been a nightmare scenario. So we opted to have the surgery in February.

Well its a good thing we did! When Dr. Walker came out he said she was tightly re-tethered. Even he said it was a good thing we didn't wait.

[Gymp]

Thanks everybody for telling me what your symptoms were.

I've had two bouts with some major backaches (spaced at about 2 months apart)that lasted well over a week to get back to normal.Actually my last bout took me a week to actually get out of the house and then took about another 3 weeks to get back to feeling completely normal again.The pain had radiated down to the top part of my thighs and wouldn't let up even while lying down when it was at its worst.It never did bother my bowels or bladder at all.I did go to the G.P. when I could walk after the second bout and he got me to stand this way then that,asked me to touch my toes and bend backwards,he felt around abit as well.He told me he thinks I had either pulled a muscle or pinched a nerve from when I fell off my bike a few days before my back started acting up.He did say my mobility was good and if the back starts acting up again he'll send me for some x-rays and have a look see.

After reading what you's have gone through and having your mobility impaired and the possibility of it not returning to as good as it was before really really scares me!Heck I'm over 50 now and I already know I don't heal up as well as I did 20 or 30 years ago.

I guess this is going to sort of be a waiting game now to see if I get a bout #3.I hope it's not tethered cord.

One more question if I may...When you's,Brian and LisaJoy did have the back aches,did it ever let up for abit or was it something that went on for months nonstop until you were diagnosed?Sorry about this added question and long winded post but I guess I'm just a scared old man that maybe worries tooo much.

Thanks
Gymp

[BrinaRad]

My pain was not constant, but there were times the pain was awful. Every once in awhile i would bend over to pick something up and i would lock up. The best advice I can give you is to get an MRI and see a nuerosurgeon.

[LisaJoy]

My back pain was intermittent and usually associated with walking -- when I put weight on my right foot, it would feel like someone was hammering a nail into my lower back. I've read that TC pain is usually intermittent, but then again, TC (like SB) tends to vary a lot from one person to another and I'm guessing that the worse it becomes, the more constant the pain would get.

I'm a little bothered by the GP suggesting an x-ray. Hopefully it's nothing serious and will correct itself as he indicates. I guess an x-ray could rule out something more mundane, but it is not going to be helpful for diagnosing tethering -- that would require an MRI with contrast or a myelogram CT. Are you confident about your GP's understanding of SB and TC?

[Gymp]

Thanks again LisaJoy and Brian.

It's very true that SB is different for us all so with that tethered cord would be too.

No I'm not confident with my Gp's understanding of SB or TC.He's new with me and I've asked what he knows of SB and his reply was,not much,well at least he was honest!
I've been told previously that MRI's are out for me as I've got lots of surgical steel in me.

If and when this acts up again I'll definitely mention the MyelogramCT if there's nothing on the x-ray.

It must have been a heck of a shock for you LisaJoy to go from walking without aids to now having to use an AFO and crutch.That's one thing I think I'd have real hard time dealing with.

Thanks
Gymp

[LisaJoy]

Okay, in the interest of full disclosure, I have to tell you that the myelogram CT is not a whole lot of fun. The CT part is no problem -- the myelogram part is. It involves an injection of dye into the spine (spinal cord? not sure). It is basically the same procedure as a spinal tap. The do it under fluoroscopy (x-ray) so they can tell where the needle is going. They give a local anesthetic first. The first time I had it done, it was done by a radiology resident who I swear looked all of 16. He hit a nerve at some point and I literally bounced on the table, like I had been hit by a jolt of electricity -- I was so rattled, they had to give me valium to finish! So if I were you, I'd just request a dose of valium up front, if you end up having it done. The second one was done by a very experienced neurosurgeon and it was much easier. I think experience REALLY matters in this type of procedure. I don't want to scare you off from it, though -- it makes brilliant pictures and was key in diagnosing the exact locations of my tethering.

As for walking with an AFO & crutch, I really had no problems adjusting. I don't know why; I was just able to deal with it and move on. It certainly brought one advantage -- I now have a disability parking tag, which is quite useful on a sprawling university campus with severe parking problems!

[Gymp]

LisaJoy
I have had a spinal tap a long time ago,in my teens I would think.I was under general anesthesia and afterward I wasn't allowed to get up or raise my head for about 12 hours I think.

I may already have had a detethering.At about the age of 16 or 17 (1972 or 1973) they removed a lump at the base of my back,just above my butt (your previous post's link kinda showed this).Prior to its removal if you touched or tapped me there I'd drop to the floor basically paralyzed with my feet locked in an inward position,I couldn't feel my legs either.It would take a good while before my feet would unlock and slowly I'd be able to move again.Anyhow that surgery was done so there would be no complications for when they put in the Harrington Rods the next year (1974).You'll have to excuse my ignorance with this as I haven't seen a doctor about my Spina Bifida since they put the Harrington Rods in.I've just rolled with the punches of life never paying attention to it until I found this site while researching "sore lower back spina bifida".The spina bifida was added to the search as it dawned on me that I was born with it and it may have something to do with my sore back.Glad I ended up here though as there's so much to learn about what they now can do now for SB and to possibly share my experiences of living with it.

I've given up my drivers licence a while ago as everything I need is within a bike ride away (5 miles).If I were to loose mobility in my legs,it'd be extra difficult to get around.If I were to go for a licence again The insurance rates would be ridiculous as I'd be considered a new driver again.

Gymp

[Tanson]

Hi Summer,

Please can you tell me what happened with your tethered cord surgery? If you don't want to post you can email me privately at t.anson@bigpond.net.au It's just that I am about to have the surgery and am in a lot of pain and have been quite sick on an off for a few months. I really would like to know as much about TC as I possibly can and the risks associated.
Much appreciated,

Tanya Anson

[Summer25]

Hi Summer,

Please can you tell me what happened with your tethered cord surgery? If you don't want to post you can email me privately at t.anson@bigpond.net.au It's just that I am about to have the surgery and am in a lot of pain and have been quite sick on an off for a few months. I really would like to know as much about TC as I possibly can and the risks associated.
Much appreciated,

Tanya Anson

Tanya,

Well a lot of things went wrong...lol. Starting with believing a doctor that said he could see a tether cord on an MRI even though I have rods in my back. When I woke up after the surgery no one knew that anything was different. However, the doctor went missing for 2 days. Little did we know that he knew what went wrong. I was in ICU for either 2 or 3 days. The second day of coming out of the anesthia I noticed my stomach was moving in and out and it was hard to catch my breath. I just thought it was because of the surgery. The nurse went to listen to my heart and when she was listening to my stomach I started freaking out. I couldn't feel it. I had lost feeling from chest down. The doctor was still missing and the nurses were freaking out since he didn't tell them that this was a possibility. My mom was down at the cafeteria and saw him, so she cornered him and he told her "Well she is lucky she still has hand function." That was all he said. If anyone but him knew that paralysis was a possibility I could have been started on steriods directly after surgery then the paralysis may not have been permanent. It was of course permanent and the spasms in my stomach stayed until just recently they got worse. I would go days and days with a spasm that just wouldn't stop. My regular doctor finally decided she couldn't treat them anymore and sent me to a neurologist who diagnosed me with Myocolonic seizures. Shortly after the tether cord surgery that doctor was fired due to another operation that was done on a little girl that was not needed that caused her to be blind. The hospital brought in another awesome neurosurgeon who wanted to see what an MRI looked like on me and when he did of course there was no way to tell I had tether cord. He also said that on a person in a wheelchair tether cord surgery rarely will do any good, so there is no reason in doing on. I ended up having another surgery for my bladder because the tether cord surgery did not fix the issue and had major issues with that surgery as well. So, that year and a half was just a mess. I also walked with long legged braces and due to the tether cord I couldn't anymore. There was a lot of things I couldn't do anymore because of that surgery. So, that is my long story.

[Pokemasterflex]

I had my tethered chord surgery when I was 10. It wasn't that bad looking back now. I spent about a week in the hospital, had to lay flat on my back, and then a bit of time home from school recovering.

One thing that does come to mind that was horrendous was the fact that they used latex gloves despite the neon pink signs that said:: "Hey Bozo!! Yeah, you! Don't use latex!". I broke out in hives all over.

[rach378]

i have had three tethered cord operation's, they have left me with no feeling at all in the left side of my left leg. iam still able to walk, but dont now for how much longer. im 27 and had my operations at 9, 10 and 12.