Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 For the second surgery they were originally going in to remove the filum but found it was up like the U so they pulled it down hoping it would make it better, we were disappointed they didn't remove it while they were in there. Neither one of the doctors had heard of a filum doing that before, also when they removed his filum it was HUGE (covered in fat), which they had never seen or heard of before either and he is a skinny little guy. They can't even tell us what is causing the spasms which is the hard part because we don't know how to help him. > > > > > > From: wc_price <wcprice99@ ..> > > Subject: What to do now. > > To: tetheredspinalcord@ yahoogroups. com > > Date: Monday, August 31, 2009, 8:36 PM > > > > > > > > > > > > > > Starting last January my son (5 this past march) starting having what looking like abdominal cramping and was treated for constipation for 5 weeks then put in the hospital for tests and we were sent home saying they wouldn't figure it out to find a way to deal with it. When it got to the point of 45 cramps/spasms, 16 peed pants and 16 trips to the bathroom one day they sent us to a urologist who dianosed him with TCS from the original tests that were done when we were sent home and told to deal with it. Since then he's had 3 surgeries last year (April, September and October) and is still experiencing the symptoms that started last Januray. His symptoms are cramping where he drops to the floor, he grunts, face gets red and usually pees his pants, sometimes on the bad ones he poops his pants. He has no idea when he has to go to the bathroom. The cramps/spasms are getting worse, sometimes he can't breathe and the doctors have pretty much given up so now > we > > don't know what to do. He has at least 6-12 spasms a day and up to 40. He is on ditropan (25 mg/day, and gabapentin (200 mg 3/day). We feel like we are hitting a brick wall and don't know what to do now. He starts kindergarten next week and we have no idea how he is going to handle it. He occasionally poops his pants when having a spasm as well. The doctors have said they don't know what it is and it seems like they have given up trying to figure it out. I don't know how much more he can take, he told us he wants to cut the cramps out with a knife. Does anyone have any suggestions or going through similar symptoms. > > > > Is there a way to post a video of a spasms to see if anyone has seen anything like this? > > > > Thanks for reading, sorry it's so long. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Good evening, My daughter turned four in August and has had two surgeries.The first at age 2 and the second just this past April. The first surgery was to remove the tethered cord and the second was to drain the syrinx and fix the re tethering. I know exactly how you are feeling my daughter has the exact same problem and the GI doctors don't really know how to fix it. What we do know is that she has lost her colon nerves completely and that is why she has such a hard time stooling. She too has 6 to 7 accidents a day and the screaming from pain and the day care is fed up. The only thing I may suggest that worked for her is a medication regimen 17 grams of miralax twice a day and 1 tsp of senna twice a day. This decreased the pain considerably and the accidents were very slim. The only reason we can no longer use this method is because she has a prolapsed urethra and it was making it worse but as you have a boy that side affect will not occur. I know A LOT of information about things to try and do with a situation like this and I am willing to discuss them with you if you are interested. I completely understand how you feel and I know it is very frustrating to see your child suffering and you feel helpless. Please let me know if there is anything I can do or help you with I am available. Sincerely, Corinn Subject: Re: What to do now. To: tetheredspinalcord Date: Tuesday, September 1, 2009, 7:07 PM For the second surgery they were originally going in to remove the filum but found it was up like the U so they pulled it down hoping it would make it better, we were disappointed they didn't remove it while they were in there. Neither one of the doctors had heard of a filum doing that before, also when they removed his filum it was HUGE (covered in fat), which they had never seen or heard of before either and he is a skinny little guy. They can't even tell us what is causing the spasms which is the hard part because we don't know how to help him. > > > > > > From: wc_price <wcprice99@ ..> > > Subject: What to do now. > > To: tetheredspinalcord@ yahoogroups. com > > Date: Monday, August 31, 2009, 8:36 PM > > > > > > > > > > > > > > Starting last January my son (5 this past march) starting having what looking like abdominal cramping and was treated for constipation for 5 weeks then put in the hospital for tests and we were sent home saying they wouldn't figure it out to find a way to deal with it. When it got to the point of 45 cramps/spasms, 16 peed pants and 16 trips to the bathroom one day they sent us to a urologist who dianosed him with TCS from the original tests that were done when we were sent home and told to deal with it. Since then he's had 3 surgeries last year (April, September and October) and is still experiencing the symptoms that started last Januray. His symptoms are cramping where he drops to the floor, he grunts, face gets red and usually pees his pants, sometimes on the bad ones he poops his pants. He has no idea when he has to go to the bathroom. The cramps/spasms are getting worse, sometimes he can't breathe and the doctors have pretty much given up so now > we > > don't know what to do. He has at least 6-12 spasms a day and up to 40. He is on ditropan (25 mg/day, and gabapentin (200 mg 3/day). We feel like we are hitting a brick wall and don't know what to do now. He starts kindergarten next week and we have no idea how he is going to handle it. He occasionally poops his pants when having a spasm as well. The doctors have said they don't know what it is and it seems like they have given up trying to figure it out. I don't know how much more he can take, he told us he wants to cut the cramps out with a knife. Does anyone have any suggestions or going through similar symptoms. > > > > Is there a way to post a video of a spasms to see if anyone has seen anything like this? > > > > Thanks for reading, sorry it's so long. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 I find this surprising that MDs aren't seeing a connection between TC and B & B issues. TC is a closed NTD. Any MD seeing a child with an open NTD would virtually EXPECT the child (or adult) to have some kind of B & B dysfunction. The easiest way to prove some kind of connection is to have a urologist do a urodynamic study. This should be done anyway, as many times people (kids and adults) have some kind of B & B dysfunction and don't know it. For example, when I first started dealing with all this and made my first trips to the uro, the questions went something like this: " do you have any problems with ...? " well, to me, everything was " normal " because I grew up with this body and its problems. I thought what I experienced was what everyone else did and that my B & B function was " normal. " Granted, until after the second surgery did things begin to change such that I could notice a difference and had problems to report. Only then, did they figure out that what I called " normal " was not. In addition to visiting a uro for the urodynamic study, make sure that he asks the questions properly. Make sure they explain what normal is in their questions so you/your child will know if what they are experiencing is not normal. For example, rather than asking, " do you have any problems urinating? " Instead, they should ask questions like: " Do you have sudden urges? Do you have to push or strain when urinating? How long is it between when you feel you have to go to the bathroom and when it is urgent (ie: risk of accident)? " These are much more specific questions that can help you figure out if what you are experiencing is normal or not. Jenn On Tue, Sep 1, 2009 at 12:08 PM, Greig wrote: > > > Thank you for your input & experience Dee! > > Don't you love how some Dr's don't see the connection with bladder & bowel > in TSC cases? Some of our Doc's think it is just a coincidence & no way > related. Then we see on here everyday that 95% of us (and our kids) have the > whole kit-n-kaboodle. > > > > From: wc_price <wcprice99shaw (DOT) ca> > > Subject: What to do now. > > To: tetheredspinalcord@ yahoogroups. com > > Date: Monday, August 31, 2009, 8:36 PM > > Starting last January my son (5 this past march) starting having what > looking like abdominal cramping and was treated for constipation for 5 weeks > then put in the hospital for tests and we were sent home saying they > wouldn't figure it out to find a way to deal with it. When it got to the > point of 45 cramps/spasms, 16 peed pants and 16 trips to the bathroom one > day they sent us to a urologist who dianosed him with TCS from the original > tests that were done when we were sent home and told to deal with it. Since > then he's had 3 surgeries last year (April, September and October) and is > still experiencing the symptoms that started last Januray. His symptoms are > cramping where he drops to the floor, he grunts, face gets red and usually > pees his pants, sometimes on the bad ones he poops his pants. He has no idea > when he has to go to the bathroom. The cramps/spasms are getting worse, > sometimes he can't breathe and the doctors have pretty much given up so now > we > > don't know what to do. He has at least 6-12 spasms a day and up to 40. He > is on ditropan (25 mg/day, and gabapentin (200 mg 3/day). We feel like we > are hitting a brick wall and don't know what to do now. He starts > kindergarten next week and we have no idea how he is going to handle it. He > occasionally poops his pants when having a spasm as well. The doctors have > said they don't know what it is and it seems like they have given up trying > to figure it out. I don't know how much more he can take, he told us he > wants to cut the cramps out with a knife. Does anyone have any suggestions > or going through similar symptoms. > > Is there a way to post a video of a spasms to see if anyone has seen > anything like this? > > Thanks for reading, sorry it's so long. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 Thank you so much for the information. The big problem we have is that he NEVER complains of anything hurting, so no one seems to see the urgency in it. It also makes it hard trying to tell the doctors where it's hurting him because if you see his face it's hurting him. I am trying to be the best advocate for him that I can. I was on the phone with neurosurgeons and urologist once or twice a week. Now we have a pediatrician involved that we see and she follows up with them because we felt like we were just going around in circles. I don't know if this is the right thing to do or not but we felt it was a good idea to get someone involved that's not a specialist. The one neurosurgeon told us that he is going to prove to the world that there's such a thing as Back Seisures. He also told us that he believes it's not permanent the other neurosurgeon told our pediatrician there is nothing more that can be done just to figure out what medication will help it. That is the frustrating part, two totally different answers from the same department. WEll, I guess that isn't the only frustrating part, the not knowing is awful. When his filum was up like a U they had never seen that as for the fat, they said he had way more than they'd seen before, it was like a sausage is what he said. We have had two neurosurgeons, the newest one has come from crap I can't remember but they said it was from somewhere where they performed a lot of TCS surgeries. Thanks so much again for all of the support > > > > > > > > > From: wc_price <wcprice99@ ..> > > > Subject: What to do now. > > > To: tetheredspinalcord@ yahoogroups. com > > > Date: Monday, August 31, 2009, 8:36 PM > > > > > > > > > > > > > > > > > > > > > Starting last January my son (5 this past march) starting having what looking like abdominal cramping and was treated for constipation for 5 weeks then put in the hospital for tests and we were sent home saying they wouldn't figure it out to find a way to deal with it. When it got to the point of 45 cramps/spasms, 16 peed pants and 16 trips to the bathroom one day they sent us to a urologist who dianosed him with TCS from the original tests that were done when we were sent home and told to deal with it. Since then he's had 3 surgeries last year (April, September and October) and is still experiencing the symptoms that started last Januray. His symptoms are cramping where he drops to the floor, he grunts, face gets red and usually pees his pants, sometimes on the bad ones he poops his pants. He has no idea when he has to go to the bathroom. The cramps/spasms are getting worse, sometimes he can't breathe and the doctors have pretty much given up so now > > we > > > don't know what to do. He has at least 6-12 spasms a day and up to 40. He is on ditropan (25 mg/day, and gabapentin (200 mg 3/day). We feel like we are hitting a brick wall and don't know what to do now. He starts kindergarten next week and we have no idea how he is going to handle it. He occasionally poops his pants when having a spasm as well. The doctors have said they don't know what it is and it seems like they have given up trying to figure it out. I don't know how much more he can take, he told us he wants to cut the cramps out with a knife. Does anyone have any suggestions or going through similar symptoms. > > > > > > Is there a way to post a video of a spasms to see if anyone has seen anything like this? > > > > > > Thanks for reading, sorry it's so long. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 Corrin, I would love to talk more with you to see how many similarities our children have. I have a lot of videos of his spasms. As for the colin issues, he doesn't have any pain when he does have a bowel movement. He does ask to go poop but it's so rare (probably because he is on the toilet to go pee at least every hour). You're right I do feel helpless, it feels like we are fighting a losing battle. I'm not online very often but can give you me email if you don't mind. Thanks > > > > > > > > > From: wc_price <wcprice99@ ..> > > > Subject: What to do now. > > > To: tetheredspinalcord@ yahoogroups. com > > > Date: Monday, August 31, 2009, 8:36 PM > > > > > > > > > > > > > > > > > > > > > Starting last January my son (5 this past march) starting having what looking like abdominal cramping and was treated for constipation for 5 weeks then put in the hospital for tests and we were sent home saying they wouldn't figure it out to find a way to deal with it. When it got to the point of 45 cramps/spasms, 16 peed pants and 16 trips to the bathroom one day they sent us to a urologist who dianosed him with TCS from the original tests that were done when we were sent home and told to deal with it. Since then he's had 3 surgeries last year (April, September and October) and is still experiencing the symptoms that started last Januray. His symptoms are cramping where he drops to the floor, he grunts, face gets red and usually pees his pants, sometimes on the bad ones he poops his pants. He has no idea when he has to go to the bathroom. The cramps/spasms are getting worse, sometimes he can't breathe and the doctors have pretty much given up so now > > we > > > don't know what to do. He has at least 6-12 spasms a day and up to 40. He is on ditropan (25 mg/day, and gabapentin (200 mg 3/day). We feel like we are hitting a brick wall and don't know what to do now. He starts kindergarten next week and we have no idea how he is going to handle it. He occasionally poops his pants when having a spasm as well. The doctors have said they don't know what it is and it seems like they have given up trying to figure it out. I don't know how much more he can take, he told us he wants to cut the cramps out with a knife. Does anyone have any suggestions or going through similar symptoms. > > > > > > Is there a way to post a video of a spasms to see if anyone has seen anything like this? > > > > > > Thanks for reading, sorry it's so long. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2009 Report Share Posted September 4, 2009 I just looked up what PEG3350 is. For those of us in the US - it goes by the name Colyte, GoLytely or NuLytely. Quite frankly, I've never understood why they put the word " lyte " in the name. There is nothing whatsoever that is " lyte " about the BM that it produces! No wonder the poor boy was having such loose stools! I've never heard of it used for routine bowel maintenance. I have been prescribed it a few times. But they were when I was REALLY backed up and my step treatment couldn't get things moving, including MagCitrate (which usually causes a huge mess, but it does get me moving). The other time I have been prescribed the Rx is to clean out before some kind of procedure. That stuff causes some VIOLENT BMs. Generally it is mixed with about a gallon of water. While I'm sure they gave him a smaller dose to use on a daily basis, I'm never able to get the whole thing down and it still cleans me out more than I can imagine. I am so surprised that they would prescribe that for routine maintenance. There are options that are FAR more gentle to the system. Manual stimulation, to begin with. That is the most natural. There is no risk of the bowel getting " lazy " or accustomed to it. It makes the bowel function as it normally would (if all the nerves were intact). Just creating the stimulation to move from the other end. I think I'm still in shock that someone would consider that Rx for routine bowel maintenance... I just can't even fathom the idea. Daily... whew! Don't feel bad about not asking enough or the right questions. Heaven knows that I really fell short in the " right " question and research department going into my first surgery. If I had only known then what I know now. I felt really comfortable with this neurosurgeon and his skills as a neurosurgeon. I was introduced to him by a friend. She had a benign brain tumor. She had been seen by the top neurosurgeon at Emory and was told that it was inoperable. This guy was able to remove it successfully and she didn't have any neurological deficits after the surgery. While I know its not TSC surgery, I felt very comfortable with his skills as a neurosurgeon. I had originally seen him for a consult for a vascular malformation in my brain. When I got the results back of the MRI of my back, I headed over to see him and what he could do for my back. Like with the previous consult, I still felt very comfortable with his skills as a neurosurgeon. And his abilities to perform surgeries that other, very highly regarded, neurosurgeons had said could not be done. I did ask him how many he had done. While I knew that 12 didn't sound like a lot, he assured me that it was quite a few, considering the rarity of the condition, particularly in an adult - and not having known about it until adulthood. There were probably surgeons who had operated on adults, but only as a followup to surgery/ies done as a child. He reassured me that he had also worked with SB and TC during his internship or residency (can't remember which) in PA at the SB clinic. He told me about an untethering with diastematomyelia he had done on a semi-pro soccer player who was able to return to the game. I had no reason to doubt what he told me. Especially given what I knew about his skills as a neurosurgeon. When I asked him what would happen if I didnt' do the surgery, he said there was no way to know. But that it would be possible for me to lose B & B function (more likely) or to even lose function in my legs, up to paralysis (less likely). What I didn't know about, and what he failed to tell me about was the risk of retether. I have a feeling he subscribes to the theory of untetherings as a " once and done " kind of operation. That adults can't retether b/c we've reached our full height. The other thing he never mentioned to me (and I had no idea to ask about) was grafting the dura and what material would/might be used. He never mentioned anything about grafting the dura (as even a possibility) until he came to see me the afternoon of the surgery and told me what he had done. But he brushed it off like its routine and can't pose any complications (as far as the graft material itself). The only thing he did mention about the graft was that rather than having me up walking that evening, was that he was going to have me stay in bed until the following morning to give it a chance to heal - so I didn't spring a leak at the graft site. With everything he did mention, he never mentioned any pause about doing surgery on an adult with TC whose only symptom is pain, since the cord and nerves have kind of adapted to their stretched position. It is so easy to put our trust in these MDs. Especially when they proclaim their expertise in the surgery. But you can't look back. You have to trust that you made the best decision you could with the information you had at the time. YOu can't base a decision on information you don't have. I'm happy to hear that his accidents are becoming less frequent. I " m sure its traumatic for a kid (of any age) whose just trying to fit in with his/her peers. Best wishes, Jenn > > > Jenn, > Thanks for all the information, I will have to reread it when my kids are > sleeping. The pediatrician is great and the reason it took so long to find > one is that there is a shortage we've been dealing with our family doctor > until now. It would have been great to have one all along but you do what > you have to do, right. As for the back seisures you are right no one has > heard of them and our doctor believes there is such a thing but you are > right it could have another name. I just want to say I am not trying to say > our neurosurgeons are awful doctors. The first untethering was normal but > the upturned filum they'd never seen and the fatty filum, the whole thing > was covered in fat not just the bottom, and from what they said it was a lot > of fat which is what they've never seen. I am not an expert on this at all > and don't want to discredit them or anyone else. I don't know if we asked > how many TSC cases they had or if they told us, I feel like we didn't ask > enough questions right from the start. We should have done more research, I > am so glad I found this site and all of you. I feel undereducated about it > and I thought I knew quite a bit about it. > > As for the bowels he was on PEG3550 (1tsp/day) and it was making his stool > so loose we took him off of it. He does go once/day whether on a nospasm day > (which is rare) or on a really bad spasm day. His stool is what I think a > large soft amount too. He has had an abdominal x-ray about a year ago and > the colon was emptied at the time (it was another post that said her > son/daughter was, sorry can't remember her name right now). Thank you for > describing your spasms. Yes, he does have feeling in his bottom and the > bowel accidents are becoming more rare (maybe 1 every 2 weeks) the > incontinence is the big concern. > > Thanks again for the help and I will definately read all of your > information again. > > > > > > > > > > > > > I find this surprising that MDs aren't seeing a connection between TC > and > > > > B & B issues. TC is a closed NTD. Any MD seeing a child with an open > NTD > > > > would virtually EXPECT the child (or adult) to have some kind of B & B > > > > dysfunction. The easiest way to prove some kind of connection is to > have > > > a > > > > urologist do a urodynamic study. This should be done anyway, as many > > > times > > > > people (kids and adults) have some kind of B & B dysfunction and don't > know > > > > it. For example, when I first started dealing with all this and made > my > > > > first trips to the uro, the questions went something like this: " do > you > > > have > > > > any problems with ...? " well, to me, everything was " normal " because > I > > > grew > > > > up with this body and its problems. I thought what I experienced was > what > > > > everyone else did and that my B & B function was " normal. " Granted, > until > > > > after the second surgery did things begin to change such that I could > > > notice > > > > a difference and had problems to report. Only then, did they figure > out > > > that > > > > what I called " normal " was not. In addition to visiting a uro for the > > > > urodynamic study, make sure that he asks the questions properly. Make > > > sure > > > > they explain what normal is in their questions so you/your child will > > > know > > > > if what they are experiencing is not normal. For example, rather than > > > > asking, " do you have any problems urinating? " Instead, they should > ask > > > > questions like: " Do you have sudden urges? Do you have to push or > strain > > > > when urinating? How long is it between when you feel you have to go > to > > > the > > > > bathroom and when it is urgent (ie: risk of accident)? " These are > much > > > more > > > > specific questions that can help you figure out if what you are > > > experiencing > > > > is normal or not. > > > > > > > > Jenn > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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