ANGUISH and ANXIETY - TETHERED CORD

alessandra · 04-08-2011, 10:40 AM

Hi all!, I'm a 33 woman from Italy, and I've got spina bifida L5-S1; I had a pretty happy childhood, without problems, then I devolped a tethered cord, which gave to me a lot of problems in sensitive (and foot ulcer) and constipation. I had a lot of surgeries for my foot, and then, at 22, i had do detether.
The first years after detether went more or less well: my foot was better, I lost a little bit of sensitive but for some times i was able again to do a lot of things.
But I've got still a tethered cord.
I know it since years ago, but i didn't have particular changes.
Now I'm in panic: i've got a lot of postural problems, and obviuosly, with time, my back changes, and not for well. Surgeons discouraged me from another detethering, and the persons i met with others detethering made were not so happy... so I'm trying to cope with a conservative way, also because my physician says it's impossible to guess how the future will be with this problem.
MObility is not affected (also if I use weelchair because of foot ulcers), but in these last season i've twitches, and tingling, which disturbed me, but they're not painful. I've got also a little of sciatica, but not too much.
Strenght is more or less ok.
Now: I'M TOTALLY SCARED, 'CAUSE I'M THINKING ALL THE TIME OF WORSENING. I know it's not intelligent, but I'm so afraid, because i think the situation will got worse and I'll start to have a lot of pain all the time, with no way to resolve it - so, i'm here to find some good words: anxiety is not a good friend, and I don't worry my family with my doubts and fears. I'm thinking of searchin a psychological aid to face my fears, which aren't absurd, but wich give me more problems!
So, i'm here for a support

... Am I the only one with theis kind of anxiety? thank you so much, and happy to know you - Alex

JEAPOW · 04-08-2011, 11:22 AM

Alex. no you are not the only one with panic and fears. You have found a very good site with members who will also welcome you. I do not have a tethered cord and my situation is not the same, but I can relate to you with on wanting to have answers.

Sounds like you need some encouragement and some hope, it also sounds like you have been dealing with your problems for along time. Anxiety plays havic on our emotions and our bodies, but honestly talking about it does help. There are many on here totally paralyzed and still have wonderful attitudes and crappy days that is normal.

Dr. Wise would be good or SCI nurse to answers more medical advise for you. I am sorry you are dealing with so much, but just know you are in my prayers. We never know what tomorrow will bring. Glad you found this site. Hang in there happy thoughts for you today..

alessandra · 04-08-2011, 12:21 PM

Thank you so much for your words... yes, i'm in this struggle since i was 16, and I've done a lot, and more i did, less things went well! Thank you, dear

speedy2056 · 04-09-2011, 05:47 PM

I was diagnosed with tethered cord over a week ago and I have done nothing but research it and communicate with others about this.

Tell me, can you walk?

Because I've noticed that it's mostly people that have mild spina bifida or those that can generally walk that opt for the surgery.

I am in a wheelchair with bladder problems and kidney reflux, so I don't know if I would notice a deterioration from the tethering. Besides, I have also read that dethering a person with spina bifida that's put them in a wheelchair is not recommended due to the risk of further paralysis. One girl was made paralysed from the waist up after detethering surgery and before she was paralysed from the waist down. Her spina bifida also confined her to a wheelchair. So there are risks!

If you have had detethering surgery before then I have read that it's not recommended to have it again because there is less tissue to work with.

Don't panic and try conservative treatment first, such as pain management.

I am now thinking that I will get worse and that pain will start to be chronic for me. I am pain free at the moment, apart from positional pain. I know how you are feeling!

Only time will tell, I'm afraid. Just avoid bending down and stretching as much as you can.

alessandra · 04-11-2011, 01:52 PM

I've already neen untether in 2000, when i was 22... things went better, but with time slow worsening arrived... and i don't want to have another scar tissue, also because I lost liquor after the surgery, and it wasn't nice...

04-08-2011, 10:40 AM	#1
alessandra Junior Member Join Date: Apr 2011 Posts: 3	ANGUISH and ANXIETY - TETHERED CORD Hi all!, I'm a 33 woman from Italy, and I've got spina bifida L5-S1; I had a pretty happy childhood, without problems, then I devolped a tethered cord, which gave to me a lot of problems in sensitive (and foot ulcer) and constipation. I had a lot of surgeries for my foot, and then, at 22, i had do detether. The first years after detether went more or less well: my foot was better, I lost a little bit of sensitive but for some times i was able again to do a lot of things. But I've got still a tethered cord. I know it since years ago, but i didn't have particular changes. Now I'm in panic: i've got a lot of postural problems, and obviuosly, with time, my back changes, and not for well. Surgeons discouraged me from another detethering, and the persons i met with others detethering made were not so happy... so I'm trying to cope with a conservative way, also because my physician says it's impossible to guess how the future will be with this problem. MObility is not affected (also if I use weelchair because of foot ulcers), but in these last season i've twitches, and tingling, which disturbed me, but they're not painful. I've got also a little of sciatica, but not too much. Strenght is more or less ok. Now: I'M TOTALLY SCARED, 'CAUSE I'M THINKING ALL THE TIME OF WORSENING. I know it's not intelligent, but I'm so afraid, because i think the situation will got worse and I'll start to have a lot of pain all the time, with no way to resolve it - so, i'm here to find some good words: anxiety is not a good friend, and I don't worry my family with my doubts and fears. I'm thinking of searchin a psychological aid to face my fears, which aren't absurd, but wich give me more problems! So, i'm here for a support ... Am I the only one with theis kind of anxiety? thank you so much, and happy to know you - Alex

04-08-2011, 11:22 AM	#2
JEAPOW Senior Member Join Date: Jan 2011 Location: ARCHBOLD, OHIO Posts: 543	Alex. no you are not the only one with panic and fears. You have found a very good site with members who will also welcome you. I do not have a tethered cord and my situation is not the same, but I can relate to you with on wanting to have answers. Sounds like you need some encouragement and some hope, it also sounds like you have been dealing with your problems for along time. Anxiety plays havic on our emotions and our bodies, but honestly talking about it does help. There are many on here totally paralyzed and still have wonderful attitudes and crappy days that is normal. Dr. Wise would be good or SCI nurse to answers more medical advise for you. I am sorry you are dealing with so much, but just know you are in my prayers. We never know what tomorrow will bring. Glad you found this site. Hang in there happy thoughts for you today.. __________________ JeAnNE L1Burst Fracture inc. 11/5/10 Live Well--Laugh often

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04-08-2011, 12:21 PM	#3
alessandra Junior Member Join Date: Apr 2011 Posts: 3	Thank you so much for your words... yes, i'm in this struggle since i was 16, and I've done a lot, and more i did, less things went well! Thank you, dear

04-09-2011, 05:47 PM	#4
speedy2056 Junior Member Join Date: Apr 2011 Posts: 5	I was diagnosed with tethered cord over a week ago and I have done nothing but research it and communicate with others about this. Tell me, can you walk? Because I've noticed that it's mostly people that have mild spina bifida or those that can generally walk that opt for the surgery. I am in a wheelchair with bladder problems and kidney reflux, so I don't know if I would notice a deterioration from the tethering. Besides, I have also read that dethering a person with spina bifida that's put them in a wheelchair is not recommended due to the risk of further paralysis. One girl was made paralysed from the waist up after detethering surgery and before she was paralysed from the waist down. Her spina bifida also confined her to a wheelchair. So there are risks! If you have had detethering surgery before then I have read that it's not recommended to have it again because there is less tissue to work with. Don't panic and try conservative treatment first, such as pain management. I am now thinking that I will get worse and that pain will start to be chronic for me. I am pain free at the moment, apart from positional pain. I know how you are feeling! Only time will tell, I'm afraid. Just avoid bending down and stretching as much as you can.

04-11-2011, 01:52 PM	#5
alessandra Junior Member Join Date: Apr 2011 Posts: 3	I've already neen untether in 2000, when i was 22... things went better, but with time slow worsening arrived... and i don't want to have another scar tissue, also because I lost liquor after the surgery, and it wasn't nice...