Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 What a good Mom you are to follow up on this. My daughter has had just a couple of episodes of nighttime incontinence of urine but we do know she is tethered. Regardless of what the MD says, I would suggest going to see a neurosurgeon or two and getting urodynamics studies. The latter I would do for sure. If she is 17 and has no other issues, this is a good place to start. If she is tethered, surgery will be a call you will have to make putting together MD's opinions (more than one ) and your own research etc etc. But you are taking the right first step (again ) and I would follow with the urodynamics and then the neurosurgeon. Please keep us posted. Hugs from one Mom to another. Randee Randee Shenkel, PhD TSC & Bedwetting? My 17-year old daughter and I are headed to the doctor this afternoon to discuss the bedwetting that she has had her whole life and still has occasionally. She won't bedwet for many months and then suddenly it happens twice in a week. I can't believe I've never stumbled across info on TSC before now and made any possible connection. When she was born, the doctor noticed the dimple at the base of her spine and they did a test (MRI? CT Scan?) and determined that it was not tethered. But as I read the info on it, I'm wondering if this might have something to do with her bedwetting? ' Would it make sense that she would have zero issues w/being wet during the day and then wet the bed at night if TSC is the culprit? And why would it come and go so much? Is it possible that, despite the test that showed the spinal cord was not tethered, maybe it really is and this is what's causing her bedwetting? She has no other neurological issues. I understand that this can be a severely debilitating problem, and I do realize that if she does have a TSC and bedwetting is her only issue, we are incredibly fortunate. My doctor is very willing to hear ideas, but she's never mentioned this to me before (but I don't know that this doctor knows my daughter has adimple either, so we'll definitely bring it up today). I'm looking through past posts but don't see any very recent ones on the topic. Any info that anyone can share with me would be so appreciated. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 .. Has your daughter had a recent MRI? I have had TCS since I was born, but it was not " active " (and no one knew despite the hair!). I'm 29 now. I was a bed-wetter age 2-9... and then occasionally when I was older (15-20). I have also had UTI's all my life, I can remember them as a little kid, screaming in my grandma's kitchen because the UTI's hurt so bad. I started having problems with my bladder 3 years ago (after a fall), was diagnosed with TCS in September 2010, had surgery November 23rd. 3 years ago it started with going to the bathroom 30 times a day, it progressed to not going and once almost peeing myself while sitting at work.I have had the study and have damage to my bladder.However I have not had any issues since after the surgery. My medical doctors who are now involved in my care, and ones who I have told about bladder issues have all said that the bladder is a major indicator for some kind of issue/ With that being said.. has your daughter told you why this is going on? Is she drinking too much and sleeping very deeply? Does this happen during her menstrual cycle? Maybe TMI but when I was 15-20 I would wet the bed if I was drinking (water/juice etc) before bed and using a tampon... Hope you figure this out, it can be scary. Subject: TSC & Bedwetting? To: tetheredspinalcord Date: Tuesday, October 25, 2011, 1:10 PM  My 17-year old daughter and I are headed to the doctor this afternoon to discuss the bedwetting that she has had her whole life and still has occasionally. She won't bedwet for many months and then suddenly it happens twice in a week. I can't believe I've never stumbled across info on TSC before now and made any possible connection. When she was born, the doctor noticed the dimple at the base of her spine and they did a test (MRI? CT Scan?) and determined that it was not tethered. But as I read the info on it, I'm wondering if this might have something to do with her bedwetting? ' Would it make sense that she would have zero issues w/being wet during the day and then wet the bed at night if TSC is the culprit? And why would it come and go so much? Is it possible that, despite the test that showed the spinal cord was not tethered, maybe it really is and this is what's causing her bedwetting? She has no other neurological issues. I understand that this can be a severely debilitating problem, and I do realize that if she does have a TSC and bedwetting is her only issue, we are incredibly fortunate. My doctor is very willing to hear ideas, but she's never mentioned this to me before (but I don't know that this doctor knows my daughter has adimple either, so we'll definitely bring it up today). I'm looking through past posts but don't see any very recent ones on the topic. Any info that anyone can share with me would be so appreciated. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 Hi , Does she ever have stress incontinence? TSC & Bedwetting? My 17-year old daughter and I are headed to the doctor this afternoon to discuss the bedwetting that she has had her whole life and still has occasionally. She won't bedwet for many months and then suddenly it happens twice in a week. I can't believe I've never stumbled across info on TSC before now and made any possible connection. When she was born, the doctor noticed the dimple at the base of her spine and they did a test (MRI? CT Scan?) and determined that it was not tethered. But as I read the info on it, I'm wondering if this might have something to do with her bedwetting? ' Would it make sense that she would have zero issues w/being wet during the day and then wet the bed at night if TSC is the culprit? And why would it come and go so much? Is it possible that, despite the test that showed the spinal cord was not tethered, maybe it really is and this is what's causing her bedwetting? She has no other neurological issues. I understand that this can be a severely debilitating problem, and I do realize that if she does have a TSC and bedwetting is her only issue, we are incredibly fortunate. My doctor is very willing to hear ideas, but she's never mentioned this to me before (but I don't know that this doctor knows my daughter has adimple either, so we'll definitely bring it up today). I'm looking through past posts but don't see any very recent ones on the topic. Any info that anyone can share with me would be so appreciated. Thanks, ------------------------------------ NOT MEDICAL ADVICE. We Are Not Doctors. Need help with list?Email Darlene: darlene_self@... or : hollygolightly1916@... Yahoo! Groups Links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 If I had to guess it might be stress induced. Or menstrual related or due to drinking to much before bed and getting to a deep sleep. Have you tried a urologist for bladder studies or dynamic studies? I'd start there before jumping to tsc. Even with a dimple lots of people have dimples can have SB but no tsc related if she has no other symptoms what so ever I'd say it's more important to see a bladder/ urine dr make sure no retention or hydronoprphsis Cancer etc is going on. Then if no help check the back. This message was sent from s' iPhone. Apologies if it does not format corectly. > My 17-year old daughter and I are headed to the doctor this afternoon to discuss the bedwetting that she has had her whole life and still has occasionally. She won't bedwet for many months and then suddenly it happens twice in a week. > > I can't believe I've never stumbled across info on TSC before now and made any possible connection. When she was born, the doctor noticed the dimple at the base of her spine and they did a test (MRI? CT Scan?) and determined that it was not tethered. But as I read the info on it, I'm wondering if this might have something to do with her bedwetting? ' > > Would it make sense that she would have zero issues w/being wet during the day and then wet the bed at night if TSC is the culprit? And why would it come and go so much? Is it possible that, despite the test that showed the spinal cord was not tethered, maybe it really is and this is what's causing her bedwetting? She has no other neurological issues. I understand that this can be a severely debilitating problem, and I do realize that if she does have a TSC and bedwetting is her only issue, we are incredibly fortunate. > > My doctor is very willing to hear ideas, but she's never mentioned this to me before (but I don't know that this doctor knows my daughter has adimple either, so we'll definitely bring it up today). I'm looking through past posts but don't see any very recent ones on the topic. Any info that anyone can share with me would be so appreciated. > > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 Hi , Thanks for your response. She did have an MRI of her lower back for a different issue 4 years ago. We're getting a copy of that so we can see if the base of her spinal cord was included in the MRI so that they could take another look at it. Our doctor seems to think that my daughter would have other issues (daytime wetness, constipation, etc.) if the bedwetting were caused by a tethered cord. Meanwhile, she's suggesting that we see a pediatric urologist, but I am definitely following up on the MRI issue. She's definitely a deep sleeper, so maybe that's just the reason for teh bedwetting and she'll have to deal with it. Hopefully between MRI and urologist tests we'll have answers. And never TMI when it comes to medical issues...you never know what you might share that will help someone else. It's interesting that you say that, b/c we have noticed that she will sometimes be wet when she's having her period. Not sure what the connection is there, but it's interesting. Thanks again for your input, and I'm glad that surgery helped you! > > > Subject: TSC & Bedwetting? > To: tetheredspinalcord > Date: Tuesday, October 25, 2011, 1:10 PM > > > > > > > > > > > > > > > > > Â > > > > > > > > > > My 17-year old daughter and I are headed to the doctor this afternoon to discuss the bedwetting that she has had her whole life and still has occasionally. She won't bedwet for many months and then suddenly it happens twice in a week. > > > > I can't believe I've never stumbled across info on TSC before now and made any possible connection. When she was born, the doctor noticed the dimple at the base of her spine and they did a test (MRI? CT Scan?) and determined that it was not tethered. But as I read the info on it, I'm wondering if this might have something to do with her bedwetting? ' > > > > Would it make sense that she would have zero issues w/being wet during the day and then wet the bed at night if TSC is the culprit? And why would it come and go so much? Is it possible that, despite the test that showed the spinal cord was not tethered, maybe it really is and this is what's causing her bedwetting? She has no other neurological issues. I understand that this can be a severely debilitating problem, and I do realize that if she does have a TSC and bedwetting is her only issue, we are incredibly fortunate. > > > > My doctor is very willing to hear ideas, but she's never mentioned this to me before (but I don't know that this doctor knows my daughter has adimple either, so we'll definitely bring it up today). I'm looking through past posts but don't see any very recent ones on the topic. Any info that anyone can share with me would be so appreciated. > > > > Thanks, > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 Randee, thank you for your words of encouragement! The pediatrician indicated that the urologist would do a urodynamics study. Not sure if a urodyamics study would be the same thing whether done by a urologist or a neurologist? I think this may be one of the things the urologist did about 10 years ago when we went b/c I seem to remember he did a sonogram of her full bladder, had her void and then sonogrammed again to make sure she completely emptied her bladder. He did say at that time that she had a fairly small bladder. Thanks again for your support. > > What a good Mom you are to follow up on this. My daughter has had just a couple of episodes of nighttime incontinence of urine but we do know she is tethered. Regardless of what the MD says, I would suggest going to see a neurosurgeon or two and getting urodynamics studies. The latter I would do for sure. If she is 17 and has no other issues, this is a good place to start. If she is tethered, surgery will be a call you will have to make putting together MD's opinions (more than one ) and your own research etc etc. But you are taking the right first step (again ) and I would follow with the urodynamics and then the neurosurgeon. Please keep us posted. Hugs from one Mom to another. Randee > > > Randee Shenkel, PhD > > > > > TSC & Bedwetting? > > > > > My 17-year old daughter and I are headed to the doctor this afternoon to discuss the bedwetting that she has had her whole life and still has occasionally. She won't bedwet for many months and then suddenly it happens twice in a week. > > I can't believe I've never stumbled across info on TSC before now and made any possible connection. When she was born, the doctor noticed the dimple at the base of her spine and they did a test (MRI? CT Scan?) and determined that it was not tethered. But as I read the info on it, I'm wondering if this might have something to do with her bedwetting? ' > > Would it make sense that she would have zero issues w/being wet during the day and then wet the bed at night if TSC is the culprit? And why would it come and go so much? Is it possible that, despite the test that showed the spinal cord was not tethered, maybe it really is and this is what's causing her bedwetting? She has no other neurological issues. I understand that this can be a severely debilitating problem, and I do realize that if she does have a TSC and bedwetting is her only issue, we are incredibly fortunate. > > My doctor is very willing to hear ideas, but she's never mentioned this to me before (but I don't know that this doctor knows my daughter has adimple either, so we'll definitely bring it up today). I'm looking through past posts but don't see any very recent ones on the topic. Any info that anyone can share with me would be so appreciated. > > Thanks, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 Yay. YOu are starting in the right place I would think which is urodynamics by a urologist. Pls tell us the findings. Randee Randee Shenkel, PhD TSC & Bedwetting? > > > > > My 17-year old daughter and I are headed to the doctor this afternoon to discuss the bedwetting that she has had her whole life and still has occasionally. She won't bedwet for many months and then suddenly it happens twice in a week. > > I can't believe I've never stumbled across info on TSC before now and made any possible connection. When she was born, the doctor noticed the dimple at the base of her spine and they did a test (MRI? CT Scan?) and determined that it was not tethered. But as I read the info on it, I'm wondering if this might have something to do with her bedwetting? ' > > Would it make sense that she would have zero issues w/being wet during the day and then wet the bed at night if TSC is the culprit? And why would it come and go so much? Is it possible that, despite the test that showed the spinal cord was not tethered, maybe it really is and this is what's causing her bedwetting? She has no other neurological issues. I understand that this can be a severely debilitating problem, and I do realize that if she does have a TSC and bedwetting is her only issue, we are incredibly fortunate. > > My doctor is very willing to hear ideas, but she's never mentioned this to me before (but I don't know that this doctor knows my daughter has adimple either, so we'll definitely bring it up today). I'm looking through past posts but don't see any very recent ones on the topic. Any info that anyone can share with me would be so appreciated. > > Thanks, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 ,When I first fell I had an MRI a year later, 2 years after that I demanded a repeat and an open MRI showed the cord clearly tethered. They did another one when I saw my neurosurgeon because they did not like the open one.. and the closed showed TCS. In my case I started having walking problems and severe pain. This was a progression. So month 1 after fall I felt some pelvic burning, then month 2 pelvic and buttock burning.. progressed to leg pain in July 2010. So June 2010 I was fine, July I started having weird leg pain. I think the tampon made me relax my muscles too much..  on top of the TCS I have some pelvic issues.. I was told I have most likely had them forever, but after my fall they intensified and had pelvic PT. I hope both of you get to the bottom of things, I know how frustrated both of you must be. I do think the urodynamic study is a good idea, as is a new MRI if it has been a while. (esp if she has had falls etc) Does she have any pain, including pelvic pain? Subject: Re: TSC & Bedwetting? To: tetheredspinalcord Date: Wednesday, October 26, 2011, 1:27 PM  Hi , Thanks for your response. She did have an MRI of her lower back for a different issue 4 years ago. We're getting a copy of that so we can see if the base of her spinal cord was included in the MRI so that they could take another look at it. Our doctor seems to think that my daughter would have other issues (daytime wetness, constipation, etc.) if the bedwetting were caused by a tethered cord. Meanwhile, she's suggesting that we see a pediatric urologist, but I am definitely following up on the MRI issue. She's definitely a deep sleeper, so maybe that's just the reason for teh bedwetting and she'll have to deal with it. Hopefully between MRI and urologist tests we'll have answers. And never TMI when it comes to medical issues...you never know what you might share that will help someone else. It's interesting that you say that, b/c we have noticed that she will sometimes be wet when she's having her period. Not sure what the connection is there, but it's interesting. Thanks again for your input, and I'm glad that surgery helped you! > > > Subject: TSC & Bedwetting? > To: tetheredspinalcord > Date: Tuesday, October 25, 2011, 1:10 PM > > > > > > > > > > > > > > > > >  > > > > > > > > > > My 17-year old daughter and I are headed to the doctor this afternoon to discuss the bedwetting that she has had her whole life and still has occasionally. She won't bedwet for many months and then suddenly it happens twice in a week. > > > > I can't believe I've never stumbled across info on TSC before now and made any possible connection. When she was born, the doctor noticed the dimple at the base of her spine and they did a test (MRI? CT Scan?) and determined that it was not tethered. But as I read the info on it, I'm wondering if this might have something to do with her bedwetting? ' > > > > Would it make sense that she would have zero issues w/being wet during the day and then wet the bed at night if TSC is the culprit? And why would it come and go so much? Is it possible that, despite the test that showed the spinal cord was not tethered, maybe it really is and this is what's causing her bedwetting? She has no other neurological issues. I understand that this can be a severely debilitating problem, and I do realize that if she does have a TSC and bedwetting is her only issue, we are incredibly fortunate. > > > > My doctor is very willing to hear ideas, but she's never mentioned this to me before (but I don't know that this doctor knows my daughter has adimple either, so we'll definitely bring it up today). I'm looking through past posts but don't see any very recent ones on the topic. Any info that anyone can share with me would be so appreciated. > > > > Thanks, > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2011 Report Share Posted November 16, 2011 We saw the urologist and I wanted to update everyone. As we all expected, it is not TSC (despite the fact that she has a dimple at the base of her spine, she's perfectly healthy. The urologist did hear what I had to say about it and reviewed the MRI done in 2007, but reassured me that any radiologist should be able to pick up a tethered spine even if it's not what they were looking for...although from some of the things I've seen other people write on this board, maybe that's not the case). Anyway, even though I know it's a bit off-topic, I'll include some details in case someone reads the posts later and my info can help them. Basically, my 17YO daughter has always wet the bed at night. A lot (3-4 nights per week) when she was younger, and then tapering off as she's gotten older (as she hit adolescence and the teenage years, it would happen only every couple of few months and then only once every several months as she's become an older teenager). She saw the urologist when she was 6 and they found no issues, but we went back since the bedwetting hasn't completely stopped. They did a sonogram of her bladder and her kidneys and there are no issues there. She's able to completely empty her bladder too. We were reassured that just bc she still has this issue at 17 (going on 18), this does not mean that she will suffer with it her entire life...just that she hasn't completely " outgrown " it. A few things the dr. reminded me of that I wanted to share: 1) Always urinate every couple of hours thru the day as this keeps the bladder relaxed (vs. the myth of holding it as long as you can bc this method makes the bladder spasm and you're more likely to bedwet if it spasms); 2) Make sure your child isn't constipated bc this can put pressure on the bladder and lead to bedwetting; and 3) Avoid caffeine later in the day bc it's a diuretic (I'd forgotten this one, so I'm sure the chocolate milkshakes I often make for dessert don't help!). The dr. reminded my daughter that even if she needs to take the DDAVP to ensure she's dry every night at college in the Fall, that it is a totally safe medication. We feel relieved that there is no other issue going on with my daughter. We just want it to be over once and for all though! Thanks to everyone for your support. I have been reading the other posts and can tell that you're a very loving, supportive community! > > > > What a good Mom you are to follow up on this. My daughter has had just a couple of episodes of nighttime incontinence of urine but we do know she is tethered. Regardless of what the MD says, I would suggest going to see a neurosurgeon or two and getting urodynamics studies. The latter I would do for sure. If she is 17 and has no other issues, this is a good place to start. If she is tethered, surgery will be a call you will have to make putting together MD's opinions (more than one ) and your own research etc etc. But you are taking the right first step (again ) and I would follow with the urodynamics and then the neurosurgeon. Please keep us posted. Hugs from one Mom to another. Randee > > > > > > Randee Shenkel, PhD > > > > > > > > > > TSC & Bedwetting? > > > > > > > > > > My 17-year old daughter and I are headed to the doctor this afternoon to discuss the bedwetting that she has had her whole life and still has occasionally. She won't bedwet for many months and then suddenly it happens twice in a week. > > > > I can't believe I've never stumbled across info on TSC before now and made any possible connection. When she was born, the doctor noticed the dimple at the base of her spine and they did a test (MRI? CT Scan?) and determined that it was not tethered. But as I read the info on it, I'm wondering if this might have something to do with her bedwetting? ' > > > > Would it make sense that she would have zero issues w/being wet during the day and then wet the bed at night if TSC is the culprit? And why would it come and go so much? Is it possible that, despite the test that showed the spinal cord was not tethered, maybe it really is and this is what's causing her bedwetting? She has no other neurological issues. I understand that this can be a severely debilitating problem, and I do realize that if she does have a TSC and bedwetting is her only issue, we are incredibly fortunate. > > > > My doctor is very willing to hear ideas, but she's never mentioned this to me before (but I don't know that this doctor knows my daughter has adimple either, so we'll definitely bring it up today). I'm looking through past posts but don't see any very recent ones on the topic. Any info that anyone can share with me would be so appreciated. > > > > Thanks, > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2011 Report Share Posted November 16, 2011 I'm so happy to hear that the urologist gave your daughter a relatively clean bill of health (its happening, but no serious cause to be concerned about). And everything he said is absolutely right for a happy, healthy bladder. For people with SCI/D who do not have sensation when they need to urinate, they do so on a schedule. Every 4-6 hrs (6 hours is considered the absolute longest interval). Even though I am paralyzed below T12, I (fortunately) still have some sensation below that level that I (technically) shouldn't have, including the sensation when I need to urinate (although I'm unable to and have to cath). My uro has told me that even if I don't feel like I need to go, if 6 hours have passed, I should go ahead and cath. It decreases the spasticity and also helps prevent UTIs (especially in women). My uro calls it allowing the urine to get " stale. " If you are frequently emptying the bladder, if there are nasty bacteria in there, emptying it frequently doesn't allow them to multiply as easily because you are eliminating them with the waste. The only real bone of contention I have with your daughter's uro is about any radiologist being able to easily identify and tethered cord. This is ABSOLUTELY NOT the case. Dx a TC is particularly difficult when it is tethered by a tight filum (that isn't fatty or thickened) and when the cord ends at the appropriate level. A standard MRI can look completely normal - and can only be Dx with a CINE or flip flop MRI that notes the cord does not move. There have been people on this list who had a dimple and neuro symptoms and a wholly normal MRI. But, when nothing else could fix the problems, they basically had exploratory surgery that found TC. TC is not that easy to Dx when there are no other anomalies, especially when the cord ends at a normal level. In these cases, even a MD that is VERY experienced in Dx TC can have a hard time seeing it on the scan. IMO, just to be sure (if you haven't done so already), I would contact one of the MDs that are experts in TC (such as Dr. Frim in Chicago, or Dr. Fuchs @ Duke in NC) and have them take a look at her scans. You don't have to physically take her there for an appointment. You can contact their offices and get them her medical records and films (CDs now days) and have him take a look. I think that would be a good idea - just to be sure. These MDs are more likely to be able to pick up TC that most others would miss. Quite honestly, none of my MDs have ever relied on the radiologist to read the films. They are not thorough enough, nor are they specialists in that area of the body. A neurosurgeon will be able to pick up something very subtle on a scan because they have seen those scans when preparing for a surgery, and know what they see when they are inside with surgery versus what is on the scan. Any time I have had a scan, my MDs have me hand carry it straight to their office. This is not to disparage radiologists. They are skilled. I think (and my MDs have thought) that a neurosurg is better able to pick up a very subtle difference in a scan better than the radiologist. It won't cost you anything to have a TC expert review her scans and records just for piece of mind and a more secure certainty. Just MHO... But I'm glad that odds are, everything is fine with her. Its always nice to hear good news on the list! Jenn > ** > > > We saw the urologist and I wanted to update everyone. As we all expected, > it is not TSC (despite the fact that she has a dimple at the base of her > spine, she's perfectly healthy. The urologist did hear what I had to say > about it and reviewed the MRI done in 2007, but reassured me that any > radiologist should be able to pick up a tethered spine even if it's not > what they were looking for...although from some of the things I've seen > other people write on this board, maybe that's not the case). Anyway, even > though I know it's a bit off-topic, I'll include some details in case > someone reads the posts later and my info can help them. > > Basically, my 17YO daughter has always wet the bed at night. A lot (3-4 > nights per week) when she was younger, and then tapering off as she's > gotten older (as she hit adolescence and the teenage years, it would happen > only every couple of few months and then only once every several months as > she's become an older teenager). She saw the urologist when she was 6 and > they found no issues, but we went back since the bedwetting hasn't > completely stopped. They did a sonogram of her bladder and her kidneys and > there are no issues there. She's able to completely empty her bladder too. > We were reassured that just bc she still has this issue at 17 (going on > 18), this does not mean that she will suffer with it her entire life...just > that she hasn't completely " outgrown " it. A few things the dr. reminded me > of that I wanted to share: 1) Always urinate every couple of hours thru the > day as this keeps the bladder relaxed (vs. the myth of holding it as long > as you can bc this method makes the bladder spasm and you're more likely to > bedwet if it spasms); 2) Make sure your child isn't constipated bc this can > put pressure on the bladder and lead to bedwetting; and 3) Avoid caffeine > later in the day bc it's a diuretic (I'd forgotten this one, so I'm sure > the chocolate milkshakes I often make for dessert don't help!). The dr. > reminded my daughter that even if she needs to take the DDAVP to ensure > she's dry every night at college in the Fall, that it is a totally safe > medication. > > We feel relieved that there is no other issue going on with my daughter. > We just want it to be over once and for all though! Thanks to everyone for > your support. I have been reading the other posts and can tell that you're > a very loving, supportive community! > > > > > > > > > > What a good Mom you are to follow up on this. My daughter has had just > a couple of episodes of nighttime incontinence of urine but we do know she > is tethered. Regardless of what the MD says, I would suggest going to see a > neurosurgeon or two and getting urodynamics studies. The latter I would do > for sure. If she is 17 and has no other issues, this is a good place to > start. If she is tethered, surgery will be a call you will have to make > putting together MD's opinions (more than one ) and your own research etc > etc. But you are taking the right first step (again ) and I would follow > with the urodynamics and then the neurosurgeon. Please keep us posted. Hugs > from one Mom to another. Randee > > > > > > > > > Randee Shenkel, PhD > > > > > > > > > > > > > > > TSC & Bedwetting? > > > > > > > > > > > > > > > My 17-year old daughter and I are headed to the doctor this afternoon > to discuss the bedwetting that she has had her whole life and still has > occasionally. She won't bedwet for many months and then suddenly it happens > twice in a week. > > > > > > I can't believe I've never stumbled across info on TSC before now and > made any possible connection. When she was born, the doctor noticed the > dimple at the base of her spine and they did a test (MRI? CT Scan?) and > determined that it was not tethered. But as I read the info on it, I'm > wondering if this might have something to do with her bedwetting? ' > > > > > > Would it make sense that she would have zero issues w/being wet during > the day and then wet the bed at night if TSC is the culprit? And why would > it come and go so much? Is it possible that, despite the test that showed > the spinal cord was not tethered, maybe it really is and this is what's > causing her bedwetting? She has no other neurological issues. I understand > that this can be a severely debilitating problem, and I do realize that if > she does have a TSC and bedwetting is her only issue, we are incredibly > fortunate. > > > > > > My doctor is very willing to hear ideas, but she's never mentioned > this to me before (but I don't know that this doctor knows my daughter has > adimple either, so we'll definitely bring it up today). I'm looking through > past posts but don't see any very recent ones on the topic. Any info that > anyone can share with me would be so appreciated. > > > > > > Thanks, > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2011 Report Share Posted November 16, 2011 Thanks for your input, Jenn. That's very interesting as the doctor actually said " that's radiology 101 " and told me that even though the MRI was not done to check for TSC, it still covered my daughter's lumbar area and the radiologist would most definitely have seen if it was tethered. In addition, she said that there is no thickening of the bladder wall or any other symptom to indicate TSC. Now you've got me wondering if I should have someone else look at the scan though. I'm curious what you mean when you say it won't cost me anything to have someone else read the scan. Surely they'd require some sort of " appointment " (whether we're physically there or not) and charge? TSC & Bedwetting? > > > > > > > > > > My 17-year old daughter and I are headed to the doctor this afternoon to discuss the bedwetting that she has had her whole life and still has occasionally. She won't bedwet for many months and then suddenly it happens twice in a week. > > > > I can't believe I've never stumbled across info on TSC before now and made any possible connection. When she was born, the doctor noticed the dimple at the base of her spine and they did a test (MRI? CT Scan?) and determined that it was not tethered. But as I read the info on it, I'm wondering if this might have something to do with her bedwetting? ' > > > > Would it make sense that she would have zero issues w/being wet during the day and then wet the bed at night if TSC is the culprit? And why would it come and go so much? Is it possible that, despite the test that showed the spinal cord was not tethered, maybe it really is and this is what's causing her bedwetting? She has no other neurological issues. I understand that this can be a severely debilitating problem, and I do realize that if she does have a TSC and bedwetting is her only issue, we are incredibly fortunate. > > > > My doctor is very willing to hear ideas, but she's never mentioned this to me before (but I don't know that this doctor knows my daughter has adimple either, so we'll definitely bring it up today). I'm looking through past posts but don't see any very recent ones on the topic. Any info that anyone can share with me would be so appreciated. > > > > Thanks, > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2011 Report Share Posted November 16, 2011 , I would say the Dx of TC is pretty far from " radiology 101 " in a lot of cases. I mean, I have no external signs on my back. I grew up pretty much symptom free (there were a few little things that now I know, or at least have a high degree of suspicion, that they were caused by my TC. Such as, incontinence with crazy laughing, heavy coughing, and sneezing, my right foot is 1/2 size smaller than my left, my shoes always wore VERY oddly, walked funny in flip flops, when I had to have a BM, I had to do it right then. But, nothing that interfered with my life. I ran, worked in a very physical career with a lot of heavy lifting, was in marching band, etc...) But, once I became symptomatic (after a car accident) and once I finally got a MRI, a high school student could tell there was something wrong. I have SBO and diastematomyelia (with 2 hemicords distal from the bifurcation. My cord was tethered to the piece of cartilage that was splitting my cord). And my cord didn't end until L5. All pretty abnormal and wouldn't take a radiologist to know there was a problem. There are also different causes of TC - diastematomelia, thickened and/or fatty filum, tight filum, lipomyelomenengiocele, lipomenengeocele, etc. Some of those causes, like mine, are Radiology 101. There is obviously something there that shouldn't be. The filum tethers, however, can be more difficult to diagnose. Especially if the filum is not especially thickened. Now, if the cord clearly ends below L2, yes, that is Radiology 101 that there may be a problem. However, there are cases where the filum is not thickened (therefore, nothing thicker than normal to be seen on MRI) The cord can be tethered and end at the appropriate level. These are the cases that take a very trained eye to spot. If the cord ends at the proper level, and the filum is not thickened, there may not really be anything to see on the scan. When there is an external sign (such as your daughter's dimple) coupled with some urological involvement (her persistent incontinence), then it might be worth taking a closer look. First by a neurosurgeon that is VERY experienced with TC. He may want to order a CINE or a flip flop MRI (the flip flop MRI is exactly what it sounds like. The MRI is done normally where the patient is on their back, and another one is done after they flip over on their stomachs and scanned again). In a normal person, the cord floats freely within the spinal canal. So, a MRI done with the person laying on their stomach and then on their back, should show the cord moved. In someone with a very tight cord, it will not move no matter what position they are in. Even a thickened filum can be difficult to Dx to a MD (be it radiologist or neurosurgeon) that is no experienced in Dx TC. There are some MDs that do charge to give opinions of films. But as far as I know Both Dr. Fuchs @ Duke and Dr. Frim in Chicago do not. You can contact their office and explain your daughter's situation (I think they would scoff if you told them that her MD said that Dx TC was " Radiology 101 " ) and get the information to send her films/CD and pertinent records to for him to evaluate. He will then tell you if he thinks an appointment is warranted. At that point, if he thinks she should go see him (if he thinks there is something he can do for her), then you would have to pay. Back in 1997, I was Dx with a brain tumor (turned out to be a mis-Dx). I saw the partner of the MD who Dx me and he said I should see this radiation onc @ Emory because they had a new Tx that might work for it. When I saw him, he said it was not a cancerous tumor, but a vascular malformation. I wanted to be sure. I didn't want to leave a cancerous tumor alone because this new MD said it was something different, so I set out to get opinions. I contacted UAB and told them my situation and sent him my records and films and he wanted to see me because he thought I might need treatment. I also sent my info to a neurosurg in NJ and a rad onc @ Duke (both of these MDs names I got from members of a listserv similar to this one, but for brain tumors - there were no groups for the type of vascular malformation I had back then). The MD in NJ called me back after evaluating my records and films (they weren't on CDs back then - I was FedEx-ing 50+ pages of films around) and told me to leave it alone and just have regular MRIs to monitor it. The rad onc @ Duke actually paged ME (this shocked me, but he paged me and waited for me to call back). He told me that it wasn't cancer, and he had shared my file with his colleague that was a neurosurgeon that specialized in brain surgery to see if he felt I needed surgery and he said it didn't. I never paid a cent (well, to the MDs at least. FedEx got a lot of my $). When I was looking for the MDs I wanted to evaluate my films, I wanted ones that had a lot of experience with vascular tumors (even though I didn't know for sure what it was, the one thing I did know is that it was vascular, because it had hemorrhaged). I really wanted Dr. Spetzler to review my films at Barrow in AZ (he has operated on some well known people with vascular tumors and vascular malformations and is one of the best when it comes to these problems). When I contacted his office, they wanted $500 just to look over my films. Then I realized that there is no need to pay. You can get other top neurosurgeons that will review for free. They only charge if they think they have Tx to offer you and you go to them for a F2F consult. Anyway, the point of my long winded answer is that, no, you don't have to pay them for them to review your films. I know there are several people on this list who have had their surgeries done by these two MDs. There are also people on the list who have had them review their info. Last I heard, still no charge for the review. If you are interested in contacting either of them, hopefully those members will chime in and fill you in on the process (giving you contact numbers and the like). Please know I'm not trying to scare you or to make you think your daughter has TC. This route is just MHO. As you can see from my own Hx, I don't like to leave a stone unturned. I just want to KNOW for SURE one way or the other. Another reason, had I followed this same process when I was finally Dx with TC, I may never have had my first surgery. Unfortunately, I didn't find this list until I was stuck at home recovering from my first surgery. Ya know, and even if she does have TC.... she is almost 18. She has reached her full height. With the symptom you describe (just the incontinence), then odds are you'd probably decide to leave well enough alone anyway and treat the incontinence medically. But at least she would know and be extra careful to avoid back trauma/injury. She would be more aware to watch for subtle changes. Because of her incontinence they may want to do a urodynamic study and/or renal u/s every couple years just to catch any neuro decline early or development of a neuro bowel/bladder. But as I said, this is just me. I guess because of what I've been through, I'm one of those who wants to know as close to 100% as I can without a surgeon going in there to take a look. So, if you are interested in the review, hopefully, those who have gone through the process can help you through it. Jenn > ** > > > Thanks for your input, Jenn. That's very interesting as the doctor > actually said " that's radiology 101 " and told me that even though the MRI > was not done to check for TSC, it still covered my daughter's lumbar area > and the radiologist would most definitely have seen if it was tethered. In > addition, she said that there is no thickening of the bladder wall or any > other symptom to indicate TSC. Now you've got me wondering if I should have > someone else look at the scan though. I'm curious what you mean when you > say it won't cost me anything to have someone else read the scan. Surely > they'd require some sort of " appointment " (whether we're physically there > or not) and charge? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2011 Report Share Posted November 16, 2011 It couldn't hurt to have a neurosurgeon look at the films. Especially after reading more about how TC can be hard to diagnose and it also seems that many people have found they have it only after an accident, etc. I would be very interested to know if anyone has any info on contacting Dr. Frim or Dr. Fuchs for a review of the MRI. Thanks in advance for any assistance you can offer. Re: TSC & Bedwetting? , I would say the Dx of TC is pretty far from " radiology 101 " in a lot of cases. I mean, I have no external signs on my back. I grew up pretty much symptom free (there were a few little things that now I know, or at least have a high degree of suspicion, that they were caused by my TC. Such as, incontinence with crazy laughing, heavy coughing, and sneezing, my right foot is 1/2 size smaller than my left, my shoes always wore VERY oddly, walked funny in flip flops, when I had to have a BM, I had to do it right then. But, nothing that interfered with my life. I ran, worked in a very physical career with a lot of heavy lifting, was in marching band, etc...) But, once I became symptomatic (after a car accident) and once I finally got a MRI, a high school student could tell there was something wrong. I have SBO and diastematomyelia (with 2 hemicords distal from the bifurcation. My cord was tethered to the piece of cartilage that was splitting my cord). And my cord didn't end until L5. All pretty abnormal and wouldn't take a radiologist to know there was a problem. There are also different causes of TC - diastematomelia, thickened and/or fatty filum, tight filum, lipomyelomenengiocele, lipomenengeocele, etc. Some of those causes, like mine, are Radiology 101. There is obviously something there that shouldn't be. The filum tethers, however, can be more difficult to diagnose. Especially if the filum is not especially thickened. Now, if the cord clearly ends below L2, yes, that is Radiology 101 that there may be a problem. However, there are cases where the filum is not thickened (therefore, nothing thicker than normal to be seen on MRI) The cord can be tethered and end at the appropriate level. These are the cases that take a very trained eye to spot. If the cord ends at the proper level, and the filum is not thickened, there may not really be anything to see on the scan. When there is an external sign (such as your daughter's dimple) coupled with some urological involvement (her persistent incontinence), then it might be worth taking a closer look. First by a neurosurgeon that is VERY experienced with TC. He may want to order a CINE or a flip flop MRI (the flip flop MRI is exactly what it sounds like. The MRI is done normally where the patient is on their back, and another one is done after they flip over on their stomachs and scanned again). In a normal person, the cord floats freely within the spinal canal. So, a MRI done with the person laying on their stomach and then on their back, should show the cord moved. In someone with a very tight cord, it will not move no matter what position they are in. Even a thickened filum can be difficult to Dx to a MD (be it radiologist or neurosurgeon) that is no experienced in Dx TC. There are some MDs that do charge to give opinions of films. But as far as I know Both Dr. Fuchs @ Duke and Dr. Frim in Chicago do not. You can contact their office and explain your daughter's situation (I think they would scoff if you told them that her MD said that Dx TC was " Radiology 101 " ) and get the information to send her films/CD and pertinent records to for him to evaluate. He will then tell you if he thinks an appointment is warranted. At that point, if he thinks she should go see him (if he thinks there is something he can do for her), then you would have to pay. Back in 1997, I was Dx with a brain tumor (turned out to be a mis-Dx). I saw the partner of the MD who Dx me and he said I should see this radiation onc @ Emory because they had a new Tx that might work for it. When I saw him, he said it was not a cancerous tumor, but a vascular malformation. I wanted to be sure. I didn't want to leave a cancerous tumor alone because this new MD said it was something different, so I set out to get opinions. I contacted UAB and told them my situation and sent him my records and films and he wanted to see me because he thought I might need treatment. I also sent my info to a neurosurg in NJ and a rad onc @ Duke (both of these MDs names I got from members of a listserv similar to this one, but for brain tumors - there were no groups for the type of vascular malformation I had back then). The MD in NJ called me back after evaluating my records and films (they weren't on CDs back then - I was FedEx-ing 50+ pages of films around) and told me to leave it alone and just have regular MRIs to monitor it. The rad onc @ Duke actually paged ME (this shocked me, but he paged me and waited for me to call back). He told me that it wasn't cancer, and he had shared my file with his colleague that was a neurosurgeon that specialized in brain surgery to see if he felt I needed surgery and he said it didn't. I never paid a cent (well, to the MDs at least. FedEx got a lot of my $). When I was looking for the MDs I wanted to evaluate my films, I wanted ones that had a lot of experience with vascular tumors (even though I didn't know for sure what it was, the one thing I did know is that it was vascular, because it had hemorrhaged). I really wanted Dr. Spetzler to review my films at Barrow in AZ (he has operated on some well known people with vascular tumors and vascular malformations and is one of the best when it comes to these problems). When I contacted his office, they wanted $500 just to look over my films. Then I realized that there is no need to pay. You can get other top neurosurgeons that will review for free. They only charge if they think they have Tx to offer you and you go to them for a F2F consult. Anyway, the point of my long winded answer is that, no, you don't have to pay them for them to review your films. I know there are several people on this list who have had their surgeries done by these two MDs. There are also people on the list who have had them review their info. Last I heard, still no charge for the review. If you are interested in contacting either of them, hopefully those members will chime in and fill you in on the process (giving you contact numbers and the like). Please know I'm not trying to scare you or to make you think your daughter has TC. This route is just MHO. As you can see from my own Hx, I don't like to leave a stone unturned. I just want to KNOW for SURE one way or the other. Another reason, had I followed this same process when I was finally Dx with TC, I may never have had my first surgery. Unfortunately, I didn't find this list until I was stuck at home recovering from my first surgery. Ya know, and even if she does have TC.... she is almost 18. She has reached her full height. With the symptom you describe (just the incontinence), then odds are you'd probably decide to leave well enough alone anyway and treat the incontinence medically. But at least she would know and be extra careful to avoid back trauma/injury. She would be more aware to watch for subtle changes. Because of her incontinence they may want to do a urodynamic study and/or renal u/s every couple years just to catch any neuro decline early or development of a neuro bowel/bladder. But as I said, this is just me. I guess because of what I've been through, I'm one of those who wants to know as close to 100% as I can without a surgeon going in there to take a look. So, if you are interested in the review, hopefully, those who have gone through the process can help you through it. Jenn > ** > > > Thanks for your input, Jenn. That's very interesting as the doctor > actually said " that's radiology 101 " and told me that even though the MRI > was not done to check for TSC, it still covered my daughter's lumbar area > and the radiologist would most definitely have seen if it was tethered. In > addition, she said that there is no thickening of the bladder wall or any > other symptom to indicate TSC. Now you've got me wondering if I should have > someone else look at the scan though. I'm curious what you mean when you > say it won't cost me anything to have someone else read the scan. Surely > they'd require some sort of " appointment " (whether we're physically there > or not) and charge? > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.