Guest guest Posted October 30, 2006 Report Share Posted October 30, 2006 Hi Jenn, I have the same problem with student loans -- also same type of back problems -- first it was just the diastematomyelia and the first surgeon made such a hash of it I was left with terrible Chiari (those nasty fat tonsils blocking all the fluid) symptoms. Trying to get anyone to listen to me so soon after the first surgery wasn't easy. My second dethering was only 18 months after the first and it was done by a pediatric surgeon who not only cleaneed up my leaking patch, but also discovered the first doctor failed to check for filum terminale -- so I was tethered in 2 places for the second surgery. The recovery was terrible in that I was somewhat brain altered for several months. It took about 3 months before I was functional. Part of the recovery was a nightmarish depression --- so perhaps what you are feeling is not so abnormal. I wonder... especially with adult 1st time detetherings... we should do some kind of poll to see if depression and/or memory loss during recovery is normal. It must be quite a jolt to our brains after 30-40-50 years to be detethered. M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2006 Report Share Posted October 30, 2006 Bobin said the following on 10/28/2006 1:12 PM: > <cut> > Anyway, 3 yrs later, I am a T12 para, and self-confident, live on my own (+ > my 3 kitties). I am much more comfortable in my own skin that I ever was > (bowel programs and cathing can kind of do that to a person). I'm just > dealing with some concentration problems that got worse after my last > surgery (side effect of Topamax) and severe hypersomnia (I could sleep > 18hrs/day if you would let me). I'm now looking for a part time job.... > won't help me with my student loan debt (I did one semester of classes after > I was disabled, and now I can't get them written off)... Anyone have any > suggestions with that? > > Hi , It is obvious that you can not perform the work that you used to do and have training in. That in itself qualifies you for Social Security Disability. Have you gone that route? If you have or once you are qualified " legally " as being disabled, that might help with getting the student loans written off. Once you are on SSDI then you should be able to qualify for vocational rehabilitation - to learn a trade that you can do despite your disability. I am on voc rehab, actually they are (at least in Colorado) quite generous. They will buy computers, desks, chairs, pay for gas, tuition, fees, books, parking, boots, orthotics, a new wheelchair, about anything I need in order to succeed with voc rehab. They might even pay off your old student loans assuming they can not find you other means of getting them taken care of. As far as medical equipment, they only pay what insurance, medicare, medicaid does not pay, including any deductibles or co-pay fees. Also once you are on SSDI you are also enrolled in Medicare Part A & B. Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Hi. I'm new here and thought I would introduce myself. My name is Jon and I have a 6yo daughter, , who has a tethered spinal cord. She is having surgery on Thursday to detether it, at Phoenix Children's Hospital. The symptoms she is showing are bowel and bladder problems. She is extremely constipated and regularly needs Dulcolax suppositories to get her moving (which she hates). She also takes Glycolax and Magnesium Oxide, which sometimes help. The neurosurgeon told us that because her cord is tethered by a cyst, and not by a lypoma (I think I'm spelling that right), there is less of a chance of retethering. I certainly hope so, because I don't want her to have to keep going through this again and again. As it is, they want to take regular MRI's to check for retethering. The doctor said she'll be in the hospital for about 4 days following surgery, and then needs flat-on-the-back rest for 2 weeks (no walking around, no sitting up). I'd appreciate any advice y'all can offer, as I'm really new to this. Jon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Hi Jon Best wishes to you for your daughter. My daughter Ellie had a detethering two years ago and just completed her follow up MRI/Urology testing. Everything is looking really good for her--no sign of a retether. As for surgery and hospitalization, we were in for a week, but Ellie had lipomyelomeningocele, so the incision was huge. Her friend just had a surgery to detether and had a very small incision and she was back to normal much more quickly. The worst part for us was the first 72 hours, so be prepared for lots of tears (from all) and for a big feeling of helplessness. Things do improve each day--we were amazed by how quickly Ellie felt better after the first few days. Again, good luck! I'd be glad to answer any other questions if you want to email me. Mindy --- Randeejae@... wrote: > > Much good luck, Jon. I pray your daughter will be > among the vast majority > of children who have one surgery and that is it!! > Prayers from parent to > parent...Randee > > > In a message dated 4/3/2007 12:18:03 P.M. Eastern > Daylight Time, > bakerj7@... writes: > > > > > Hi. I'm new here and thought I would introduce > myself. My name is > Jon and I have a 6yo daughter, , who has a > tethered spinal > cord. She is having surgery on Thursday to detether > it, at Phoenix > Children's Hospital. The symptoms she is showing > are bowel and > bladder problems. She is extremely constipated and > regularly needs > Dulcolax suppositories to get her moving (which she > hates). She also > takes Glycolax and Magnesium Oxide, which sometimes > help. > > The neurosurgeon told us that because her cord is > tethered by a cyst, > and not by a lypoma (I think I'm spelling that > right), there is less > of a chance of retethering. I certainly hope so, > because I don't > want her to have to keep going through this again > and again. As it > is, they want to take regular MRI's to check for > retethering. The > doctor said she'll be in the hospital for about 4 > days following > surgery, and then needs flat-on-the-surgery, and > then needs flat-on-the-<W > around, no sitting up). > > I'd appreciate any advice y'all can offer, as I'm > really new to this. > > Jon > > > > > > > > > > ************************************** See what's > free at http://www.aol.com. > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 My first thought is " Take your test results to another doctor. " Your symptoms point to nerve damage, TCS seems like a likely culprit. When they untethered you, did the doctor not mention the dangers of horseback riding to someone with a tethered cord? I know when I had my first surgery, not even being aware it was TCS, they told me no more roller skating, no horseback riding, no more tackle football (long story), no gymnastics. They said nothing that could jar me, especially in a fall. Horseback riding would be nothing but constant microtraumas to your spine. Find another neurosurgeon to take a look at your tests. I think you really should. I was tested for MS 8 years ago, and again 4 years ago. They didn't find MS. Bowel trouble is common for people with TCS. Pain is common for people with TCS. Bladder issues, gait problems, sensations (parasthesias), that stuff if very common. Numbness in spots is common, too, especially the " saddle area " - the butt, inside and outside of thighs. But let them rule it out. You can have tethered cord AND MS. Good luck and hopefully your tests for MS will be negative. > Clement > wrote: Hello everyone, my name is > . I am 44 and live in OK. Thank goodness > for sites like this, I am very discouraged today. I > had undiagnosed TCS for 37 years. Went from working > to being in a wheelchair within two weeks after a > chiro visit (had seen chiros my whole life for back > pain). 2 Orthos said I needed L5 disc surgery, they > tried a steroid injection which I had a Violent > reaction to. Went to a neurosurgeon to do my disc > surgery and he picked up on the TCS. Had a release > without complications except a leak because the > nurses didn't know how to handle me post op. I was > back to work before I knew it and life was good. > First time in my memory of no back pain. Six months > later I slipped and fell at work and had back pain > again but nothing like what it was before surgery. > Fast forward to 2005, I fell from my horse right on > my surgical site, HARD. Fractured the sacrum and > coccyx (juts forward). Since then I > have had excrutiating constant burning nerve > pain at the coccyx, sacral and hip pain. Radiation > down Rt. leg to foot. Wierd sensations like " water > running down my leg " " skin hurts to touch " > sometimes. They tried narcotics but nothing helped > finally got on Cymbalta which was helping a little. > Then a month ago my pain level went up, radiation > down both legs now, fecal incontinence x 2 but I am > unable to have a bm normally. Up until 2 days ago, I > was having to wait for rectum to fill and then push > up on that area with my hand to kind of force it > out. Night before last I was hurting so bad, I > couldnt even stand the pressure of my bones in my > body (sounds wierd huh?) So I took a 10mg Flexeril > to knock me out. Yesterday nothing came into the > rectum, today nothing again (I am eating, drinking, > very high fiber etc) so I finally had to do a > colonic to evacuate because I felt like I was going > to explode. Sphincters are extremely tight, even > though I was " relaxed " . Had an L-spine MRI > w/contrast 2 weeks ago > which showed no retethering, no arachnoiditis. But > this week has been HELL. Had my neurosurgeon read > also, he concurred. Neuro says that my reflexes are > indicative of an upper motor neuron lesion ie MS or > brain tumor. I am not " feelin " the MS, this all > occurred after an injury. As for brain tumor, > wouldn't I have vision probs or severe headaches or > something?? I have had two episodes of headache > which landed me in the hospital but they were about > 8 & 2 years ago. They thought I was stroking but > never found anything. I asked my neurosurgeon if the > clonus (ankle) could be caused by concussion to the > spinal cord when I fell, he said yes. I wondered if > I was deteriorating because my coccyx continues to > sheer back and forth through a nerve bundle where it > sits but I spoke with a doc who has done hundreds of > coccygectomies and he said no. I definately have > " cycles " of pain whether I overdo it or just get out > of bed, can never tell what will set it off. So, > now 4 docs have told me to have a brain scan...I > cant work, have no insurance...not sure I believe > that I dont have arachnoiditis so after this bad > week following the other MRI, I am very hesitant to > let them put anything in my body. I am going to > research brain lesion symptoms some more. My surgeon > never really talked to me about TCS much, only that > I needed surgery and all would be well. From the > posts I have read it seems that TCS affects you long > after surgery (I need to read a bunch more) My GP > gave me a medrol dose pack to take for a week before > the brain scan to prevent an inflammatory response > so...Maybe I should rack up a few more thousand > dollars in bills, what the heck? Do all of my > symptoms (including clonus) correlate with TCS?? > Well, time to lay down...all comments appreciated. > > > __________________________________________________________ > Looking for last minute shopping deals? > Find them fast with Yahoo! Search. > http://tools.search.yahoo.com/newsearch/category.php?category=shopping > > [Non-text portions of this message have been > removed] > > > > > > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > > [Non-text portions of this message have been > removed] > > Check out my blog: http://princessmatildalovestostamp.blogspot.com ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
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