Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Many, I won't say all, Detetherings require a Laminectomy........as that needs to be done so the Spinal Cord can be reached. Me Nebraska, USA mymocha@... has had tight filum terminale surgery along with L4-L5 and L5-S1 laminectomies? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2006 Report Share Posted December 8, 2006 Hi Everyone, We just found out that our son has TSC. He has been losing his bowel and bladder control slowly over the last few years along with leg pains. I feel very blessed that I finally had a doctor look into why it was happening and not tell me it was laziness (what I had been told for the last 2 years). We are now preparing for surgery in January. Does anyone have a child that has had the surgery? What was recovery like? What are your feelings about going ahead with the surgery? nay complications? Thanks, nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 Dear nne, I cried when i read your post today, as I feel like I could have been the writer of your exact post. Sorry so emotional. My son Rob was dx at age 5 after years with leg pain, bowel/bladder problems.Also told that he was being obstinent with regard to his bladder and potty training and that I should put him back in diapers at age 4 until he was ready to cooperate with his potty training. Rob's recovery from his first surgery went very well, with no complications. I am happy that you have found a good doc for your son, and will be praying for you and your son. all my best to you, barbr -- In tetheredspinalcord , " madness1133 " wrote: > > Hi Everyone, > > We just found out that our son has TSC. He has been losing his bowel > and bladder control slowly over the last few years along with leg > pains. I feel very blessed that I finally had a doctor look into why > it was happening and not tell me it was laziness (what I had been told > for the last 2 years). We are now preparing for surgery in January. > Does anyone have a child that has had the surgery? What was recovery > like? What are your feelings about going ahead with the surgery? nay > complications? > > Thanks, > nne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 barbr, Thank you for the support! My son is 6 years old. We are trying to figure out how much school he will miss. How long did you keep your son home after the surgery? Did you only have the bladder problems? has really been having a lot of problems with the his left leg and left hip. Just yesterday we did a lot of walking while sightseeing and he was crying and in pain with this hip. Did you see an improvement with the incontinence after the surgery? After doing laundry everyday for the past few years, it would be nice not to. Ando to not have to bring a change of clothes everywhere we go. nne > > > > Hi Everyone, > > > > We just found out that our son has TSC. He has been losing his > bowel > > and bladder control slowly over the last few years along with leg > > pains. I feel very blessed that I finally had a doctor look into > why > > it was happening and not tell me it was laziness (what I had been > told > > for the last 2 years). We are now preparing for surgery in > January. > > Does anyone have a child that has had the surgery? What was > recovery > > like? What are your feelings about going ahead with the surgery? > nay > > complications? > > > > Thanks, > > nne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 Hi mariann, my son joseph is eight years old and he was dx with tcs about two months ago.he had his surgery 12/14.It will be hard the first couple of days.but everyday got better,as far as the pain from surgery.ph's biggest complaint was the cather not his back,if you can believe that. On the four day in the hospital he got up and walked like nothing happened.thank god! but i have to tell you he still has all the problems he had before and some new ones too. good luck ! melissa > > > > > > Hi Everyone, > > > > > > We just found out that our son has TSC. He has been losing his > > bowel > > > and bladder control slowly over the last few years along with > leg > > > pains. I feel very blessed that I finally had a doctor look > into > > why > > > it was happening and not tell me it was laziness (what I had > been > > told > > > for the last 2 years). We are now preparing for surgery in > > January. > > > Does anyone have a child that has had the surgery? What was > > recovery > > > like? What are your feelings about going ahead with the > surgery? > > nay > > > complications? > > > > > > Thanks, > > > nne > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 -Dear nne, I think that our son Rob missed about 4-6 weeks, but had a teacher from the district come to our house and work with him so he would not get behind. Unfortunately, Rob's bladder did not improve after his surgery, and he now uses a catheter to empty his bladder. That is not to say that your son's bladder could not improve. If there is one thing that I have learned is that this condition can be very different from person to person. I do remember that the leg pain got better almost instantly after surgery, but it took some time for Rob to get his stamina back. All my best,barbr -- In tetheredspinalcord , " madness1133 " wrote: > > barbr, > > Thank you for the support! My son is 6 years old. We are trying to > figure out how much school he will miss. How long did you keep your > son home after the surgery? Did you only have the bladder > problems? has really been having a lot of problems with the > his left leg and left hip. Just yesterday we did a lot of walking > while sightseeing and he was crying and in pain with this hip. Did > you see an improvement with the incontinence after the surgery? > After doing laundry everyday for the past few years, it would be > nice not to. Ando to not have to bring a change of clothes > everywhere we go. > > nne > > > > > > > > > Hi Everyone, > > > > > > We just found out that our son has TSC. He has been losing his > > bowel > > > and bladder control slowly over the last few years along with > leg > > > pains. I feel very blessed that I finally had a doctor look > into > > why > > > it was happening and not tell me it was laziness (what I had > been > > told > > > for the last 2 years). We are now preparing for surgery in > > January. > > > Does anyone have a child that has had the surgery? What was > > recovery > > > like? What are your feelings about going ahead with the > surgery? > > nay > > > complications? > > > > > > Thanks, > > > nne > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Dear Barbr, Wow! 4-6 weeks of school. Is that normal for recovery? We were hoping for 2 weeks since we are in the middle of the school year. How did you arrange for the teacher to come out? Did your son need the catheter before the surgery? Any other complications? HOw long were you in the hospital? I do hope the leg pain decreases. He was up at 3 am screaming that it hurt this morning. That was also when he peed his bed for the 14th day in a row. With three kids, I don't remember the last time I wasn't woken up by or my other two. nne > > -Dear nne, > > > I think that our son Rob missed about 4-6 weeks, but had a teacher > from the district come to our house and work with him so he would > not get behind. > Unfortunately, Rob's bladder did not improve after his surgery, and > he now uses a catheter to empty his bladder. That is not to say that > your son's bladder could not improve. If there is one thing that I > have learned is that this condition can be very different from > person to person. I do remember that the leg pain got better almost > instantly after surgery, but it took some time for Rob to get his > stamina back. > > All my best,barbr > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Dear nne, Rob was in the hospital about 4 days after his first surgery. 4-6 weeks really isn't a long time when you think about that this is spinal surgery. I spoke with Rob's teacher and she helped me to get homebound teaching for Rob. She was actually the one that came to the house as she lived around the corner from us. I am not sure where you live, but here if your child is going to be out for an extended leave due to medical reasons then you are eligible. I would first speak with your son's teacher, then go to the school social worker and principal. Rob did not cath before the surgery, but probably needed to. Rob also had some problems with constipation post surgery. So you could try and keep him going well (fruit, fiber) before surgery so it will cut down on risks of constipation after surgery. Does your son have any problems with constipation now? As far as the bedwetting goes, Rob has always worn a Goodnight at night, maybe your son could wear one at night too to cut back on the bedwashing. After Rob started to cath, he probably could just wear underwear at night because he is usually dry when he gets up, but he does not like to take the chance. Rob has just had his second foot surgery 5 weeks ago, where the doc rerouted most of the tendons in his left foot. We are hoping to go into the hospital and have the pins taken out of his toes tomorrow, still waiting to here. I am sorry to here about your son's painful nights. I remember all too well the nights with Rob and the horrible pain he had. All my Best to you, Barbr > > > > -Dear nne, > > > > > > I think that our son Rob missed about 4-6 weeks, but had a teacher > > from the district come to our house and work with him so he would > > not get behind. > > Unfortunately, Rob's bladder did not improve after his surgery, > and > > he now uses a catheter to empty his bladder. That is not to say > that > > your son's bladder could not improve. If there is one thing that I > > have learned is that this condition can be very different from > > person to person. I do remember that the leg pain got better > almost > > instantly after surgery, but it took some time for Rob to get his > > stamina back. > > > > All my best,barbr > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 Tethered Spinal Cord Syndromenne, Our son had four seperate dethetherings while he was still in school. He was able to return to school within 2 weeks on all of them. Having the school provide a teacher to come to your home is easy. You utilize your IEP (call a special meeting as needed), and request " hospital/homebound " status. You will need a letter from your MD stating that it is medicaly necessary, and why. Ben spent over a semester on homebound status when he was struggling with an osteo in his foot. The teacher came daily for 1-2 hours and worked with him. The school even provided a laptop for him to use at that time, as he was taking CAD and our home computer would not support the program he needed. When he was ready to return to school, it took a release from his MDs and another IEP meeting. As far as his bladder function went. It did initially improve some, but then deteriorated again as he retethered. But this is different with everyone, I think. Good luck, Diane Quote Link to comment Share on other sites More sharing options...
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