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Old 09-12-2005, 06:24 PM
donnamarie
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Default tethered cord syndrome after age 40

Is anyone else experiencing tethered cord syndrome in association with the spinal bifida?* Mine was diagnoses after I was forty and I am haveing ongoing neurological symptoms.*

I am very frustrated with the medical profession's view that any new changes because I already have spinal bifida should just be accepted by me. As if, we should just take for granted that in time our bodies iwth fall to peices.* Nothing is more annoying than having a doctor sya, "come back when you loose control of your bowel and bladder". Hello, what about right now? and lets not even go there.*

I pushed for investigation and the MRI reveiled more than we expected.* Considering I found out in 1967 at age 10 that I had spinal bifida...undieagnosised until that point, it was a good thing we chose no interventions then.* All the brave souls who came before us were used medically so that now we benefit from that work.

I don't mean used in an unethical way, jsut that as the knowledge to help us was gained the previous generations were the subjects the data was collected from.* All the x-ryas showed in 1967 was the bifida and it was considered "mild" so I was to be grateful for the small damage it caused.* But the MRI shows a mengiocycle and the tethering of the cord.* Any interventions they thought of 38yrs ago would very well have paraliyized me.

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Old 11-15-2006, 05:52 AM
Cherry
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Default tethered cord syndrome after age 40

Hi there DonnaMarie, my name is Cherry.* I was born in 1964 with spina bifida. I had the tethered cord then and was paralysed in my right leg. All doctors said was let her walk in bare feet, let her walk in sand. They had no idea that I had spina bifida until 1972. I was taken by my father to a GP who suggested he take me to a specialist immediatly. Thank God for that! My neurosurgeon at that time decided to do surgery right away as the paralysis was spreading. After the surery I lived a full and normal life with the exception of a large scar from surgery, my initial opening from birth and hair all over my back. This I had no trouble dealing with.

I had 3 beautiful completely normal children and did many wonderful things. I was also told 5 years ago that if there was any change in bladder or bowel to come back, that made me very angry. Now however I have beenlosing strength in m legs, there is much pain in my left one. So my new neurosurgeon has seen my new x-rays, mri's and cat scans. My tethered cord is back with a vengence and my spinal sord is partially attached to my vertabrae as well as the cord in a certain area is not round, it is rolled in from both sides like a scroll. So, he says that this is a small window ofopportunity to operate and see if anything can be done. He is not optimistic and I may be paralysed after surgery. I must know the answer by Mon nov 20th. It is depressing me greatly thinking of what I have to lose but also I am thinking that I have had more of a life than anyone I know with this disease.

Also my neuro says that they do not know alot about tethered cord even though they say they do and he also said that there is a whole page of syptoms reported by patients with tetherd cord but there is nothing they can do to prove that these symptoms are tied together in anyway as there is no scientifc proof.

I don't know what I am going to do. We shall see. But, if I were you, I would try another neurosurgeon and see what happens. I wish you luck and prayers.

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Old 07-03-2007, 05:55 AM
Debbie
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Default tethered cord syndrome after age 40

Connected* Hi it's Catwomen-I'm new to this. I found out in infancy that I had a lipomyelomeningocele, but my mom was told not to do anything about it, my brother had been born* 3 years prior to me with a myelomeningocele. It was at the top of the spine and he has no problems, BUT, he was operated on within hours of his birth. Mom was always told not to have anything done with mine. Now at the age of 50, after a year of 12 falls, some serious enough for me to have to be off work, I find out because of a heel ulcer that I have neuropathy of my right foot that has lead to hammer toes and this is why I had so many falls. I was referred to a neurologist, who immediately referred me to a neurosurgeon, whom I did not care for at all. I basically said to him at the end of the consult, so, my legs are going to contine to weaken? He said yes, I said THANKS! He did not want to do surgery, because I had had this all my life and he wasn't about to do surgery, I could continue on with the way I was. Needless to say, I have since gotten another opinion and he is willing to do the surgery on Quality of Life Maintenance, not necessarily because it will repair all the problems I am having, but he feels it will halt further regression. so I shouldn't get any worse at least. I don't know if this is of any assistance to anyone or not, but don't give up and be your own advocate as far as your health care.
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Old 07-03-2007, 06:47 AM
Debbie
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Default tethered cord syndrome after age 40

Debbie- When I mentioned that i have been sent to a neurosurgeon, this was after many investigaitons that were done by the Dermatologist that in fact discovered the neuropathy, and then sent me for circulatory testing, to see the neurologist, who sent me for the MRI and other testing as well. I had a leg ulcer for 5 years before developing the one on my heel which got me referred to the Dermatologist. I think that G.P.'s need education in treating and becoming more aware that when they have patients with meningoceles regardless of what type that when this individual starts having the number of falls that I did in 1 year, and that fact that I was experiencing incontinence at work, so much so that I had to take 2 weeks off and be investigated only to find out that my bowels were "FINE"? So why then the incontinence? bladder incontinence too, oh it's you weight? Well, sure the weight doesn't necessarily help, but it isn't always the reason for problems!! So now at 51 years of age, i wear a brief all the time, and still have accidents. Very frustrating.

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Old 07-12-2007, 03:53 PM
tbalsillie tbalsillie is offline
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Default tethered cord syndrome after age 40

I was born in 1973, and diagnosed with Spina Bifida at birth.

I had a tether repaired at age 10 and have had no symptoms since than of this sort of issue.* However, sometimes, as my doctor told me at the time that you can sometimes have a teher without symptoms.

There are so many different "types" of Spina Bifida and so many different varynig degrees of the condition that you really have to get information directly from you doctor, or from someone that knows ALL the ins-and-outs of Spina Bifida and Tethers.

*

Thomas

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Old 12-08-2010, 07:05 AM
Mak_Scoops
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Default tethered cord syndrome after age 40

I will ask Dr. Young to comment.

Am I correct that you do not have a previous SCI but only the recently diagnosed tethered cord syndrome?

KLD
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