Any positive results on tethered cord surgery?

Question

Hello, I seem to read all kinds of posts of surgery that has not helped or has to be repeated. Is there anyone thas has had a successful tethered cord surgeryand wants to tell me how great they feel afterward. I am a 47 year old wife and mother of 12 year old twins and I am going in to be detethered tomorrow. I have been diagnosed with chiari, TCS,kleppel feil syndrom, 3 syrinxes in my spine, and an extra lower lumbar vertebrea. I am very active have many symptoms but I tollerate pain very well. I am hoping after time, to try to get beyond feeling the way I do and get on with a normal life. Please some body tell me that they have had great success, I need some positive. Also does anyone know about how long recovery time is? I am guessing about 6 months until I start to feel normal again. Thanks and wish me luck

Cathyjomelone · Answer

I have been having symptoms for years. I am not the typical chiarian, infact everything I have is not the usual. I am not sure there is anything usual about this condition. The kfs that I have,is what I have been blaming most of my symptoms on for years( and drs for years have been saying I am getting old) My symptoms seem to follow a pattern of hanging around from 3 to 6 weeks and then completely move somewhere else and start all over. It rarely affects my head, Which is supposed to change after the surgery. My dr tells me my head will probably hurt after. I lost function in my arms for a while and right now for about a month now it has affected my bowels and legs. I have seen 2 nsrgns the first wanting to do chiari decompression and he had little experiance. The 2nd I found at OU medical cntr in Oklahoma. His name is Dr Martin and he studies under Dr Mapstone here in okc. I like him very much and I am confident he will do a good job. He ran a ton more tests and discovered a ton of issues and is trying the least invasive one first and hoping for a bunch of results. I am an optimist and am looking for a positive  ending to this. I am hoping that most people post because they are still looking for a better answer or a positive ending to this mess we call Chiari. wish me luck I will have all the time in the world in about a week  Cathy

YLaurie · Answer

Hi, I had positive results after tethered cord surgery. Before my surgery I would get frequent bladder and kidney infections. I was also taking medications for urinary urgency. My urinary symptoms completely resolved following surgery. I also had a decrease in the size of my syrinx after surgery, decrease in my headaches, and after a few months of recovery my energy level was greater than before surgery. I did have my surgery 3 years ago and I have noticed a bit of an increase in my symptoms recently but it is nothing compared to the way I was before surgery. My doctors were afraid I would go into kidney failure because of how severe and how often I would get infections. I am also happy to say I am not on any medication to control urgency and I avoided getting to a point to where I was not able to make it to the bathroom. I say tethered cord surgery made it possible for me to avoid having to wear diapers. 

I did have a great decrease in the pain in my lower back, I had so much tightness and that uncomfy pulling feeling. The pain in my lower back has returned some and I do have pain and tightness in the muscles surrounding the surgery site. 

The tethered cord surgery did help me quite a bit but of course not a cure from all of my problems but I do feel better now even 3 years later than I did before my surgery. 

I hope this helps, sending prayers your way that you have a safe surgery and easy recovery. 

Take care,
Laurie

selmaS · Answer

Hi and welcome to the Chiari forum.

Yes, TC is one of the surgeries along with a chairi decompression that may need to be repeated.

Scar tissue is one culprit that can create the need for both surgeries.....

As with most surgeries it is not a quick fix, there is a period of pain.....but, I do know  a few where this has been very helpful in fact one had TC release and her chiari herniation shrunk!

I imagine u r having many bladder issues that u r having this done first?...or the dr feels ur chiari is a result of the TC?

May we ask who ur dr is?,....where u r having this done....it is one of the next things I need as well....so I am interested to see who is doing them.

Glad to have u as part of our little family here, sorry for the reason u had to seek us out.

"selma"