Guest guest Posted September 9, 2006 Report Posted September 9, 2006 Hi If stable, you mean it's contained under the skin and not leaking to the outside (we're talking about a leak that occurred after surgery right?) After my first untethering, I ended up with what looked like a nerf football under my incision. It never leaked to the outside, but it did gave me massive spinal fluid headaches. Eventually the pain from the head pains and grossness of this fluid filled sac (which grossed me out to no end...brand new to this condition and the thoughts of having corrosive spinal fluid floating around where it didn't belong, did nothing for me...) Anyway, it was apparent after three months that the leak wasn;t stopping, not going away on it's on and that I wanted it gone. My nsg went in and four hours later, found the leak and did his best to contain and seal it. It worked and the leak disappeared. However, I was told by my nsg a consult in Boston that I did have the choice of living like that pretty much forever - as long as I desired. It could go away on its on three months later or years later it could finally stop. But, not for me. After my third or fourth untetethering, another leak and this one was not contained to under my skin. Leaked to the outside for three months and I had to lie flat for 53 days....not getting out of bed for a thing. It continued to leak though and finally they agreed to reoperated to try to find the leak...they did... Does she have any side-effects from the leak? Kathy Stable CSF Leak Hello Everyone, Our hospital stay is over, and hopefully she will be home for a long time now!!!! But, what they did find was a stable csf leak. Does/did anyone have this, and if so what did they do?? Thanks, Tommi 's (13), Mom Chicago IL. Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote
Guest guest Posted September 9, 2006 Report Posted September 9, 2006 Side effects are horriable headaches,her neck hurts,the light hurts her eyes, she has no apetite, and she feels lightheaded everytime she gets up. She is miserable, but the NSG said he did think she needed surgery. She was inpatient for a week on a lot of fluids. Then when they released her she was told to wear the abdominal binder for the next three months all of the time. If she is not feeling better in a reasonable amount of time, we should follow up with the neurologist, and see what he has to say. We are also going to followed by cardiology because they think the headaches might be caused by the clonodine patch, causing her blood pressure to be to low! I do have to say so far the clonodine has worked better then anything else for her neuropathic pain, and she really had a great couple of weeks post op! I feel like we are justing getting the run around, and feel very very frustrated! I feel like I did 4 years ago when I found this list!!! I don't know if we should get another opinon, or just do as the NSG wants us to do. It was pretty comical in the hospital he asked if she was just trying to get out of school, and that is why she was there. I thought she was going to break down in tears.....She told him do you think I am faking?? I guess her reaction shocked him, he said he was only kidding! I feel like we have hit another bump in the road! WOW, I haven't vented like that in a lonnnng time, it felt pretty good. Thanks for listening.... Any ideas, comments or suggestions are welcomed..(Leave them at the door on your way out!!) Thanks for listening!! Tommi 's (13) Mom Chicago, IL. --- Moulton wrote: > Hi > > If stable, you mean it's contained under the skin > and not leaking to the outside (we're talking about > a leak that occurred after surgery right?) > > After my first untethering, I ended up with what > looked like a nerf football under my incision. It > never leaked to the outside, but it did gave me > massive spinal fluid headaches. Eventually the pain > from the head pains and grossness of this fluid > filled sac (which grossed me out to no end...brand > new to this condition and the thoughts of having > corrosive spinal fluid floating around where it > didn't belong, did nothing for me...) > > Anyway, it was apparent after three months that the > leak wasn;t stopping, not going away on it's on and > that I wanted it gone. My nsg went in and four > hours later, found the leak and did his best to > contain and seal it. It worked and the leak > disappeared. > > However, I was told by my nsg a consult in Boston > that I did have the choice of living like that > pretty much forever - as long as I desired. It could > go away on its on three months later or years later > it could finally stop. > > But, not for me. After my third or fourth > untetethering, another leak and this one was not > contained to under my skin. Leaked to the outside > for three months and I had to lie flat for 53 > days....not getting out of bed for a thing. It > continued to leak though and finally they agreed to > reoperated to try to find the leak...they did... > > Does she have any side-effects from the leak? > > Kathy > Stable CSF Leak > > > Hello Everyone, > Our hospital stay is over, and hopefully she will > be > home for a long time now!!!! But, what they did > find > was a stable csf leak. Does/did anyone have this, > and > if so what did they do?? > Thanks, > Tommi > 's (13), Mom Chicago IL. > > Tommi > 's Mom > Chicago, IL. USA > > __________________________________________________ > Quote
Guest guest Posted September 9, 2006 Report Posted September 9, 2006 Dear Tommi, I, m sorry for not reading all the posts before my last message to you. It sounds like your daughter has just recently had surgery. Robby had a CSF leak after his second surgery, and they watched it for a little while. His incision became inflamed, and began leaking after we got home, so it was back in the hospital. He ended up with a staph infection and had to have more surgery to repair the leak. I think his headaches disappeared pretty quickly after the repair. But it is just horrible to watch them go through the pain of those horrible headaches. I am shocked to think that the neurosurgeon would imply that your daughter was trying to ditch school.Maybe he was joking, but completely inappropriate as far as I am concerned. I think I would try for a second opinion. The problem that we have here in the Detroit Area is that peds neurosurgeons are pretty scarce, so we are always looking for a good one out of state at this point. My family and I will say a prayer for your daughter and your family. Take Care, BarbR > > Hello Everyone, > Our hospital stay is over, and hopefully she will be > home for a long time now!!!! But, what they did find > was a stable csf leak. Does/did anyone have this, and > if so what did they do?? > Thanks, > Tommi > 's (13), Mom Chicago IL. > > Tommi > 's Mom > Chicago, IL. USA > > __________________________________________________ > Quote
Guest guest Posted September 9, 2006 Report Posted September 9, 2006 Barb, Who is your nsg? I also live in the Detroit area, I think I have a great doctor, but would love to hear who other people are using. Thanks Carol -- In tetheredspinalcord , " brbrrss " wrote: > > Dear Tommi, > > I, m sorry for not reading all the posts before my last message to > you. It sounds like your daughter has just recently had surgery. > Robby had a CSF leak after his second surgery, and they watched it > for a little while. His incision became inflamed, and began leaking > after we got home, so it was back in the hospital. He ended up with > a staph infection and had to have more surgery to repair the leak. > I think his headaches disappeared pretty quickly after the repair. > But it is just horrible to watch them go through the pain of those > horrible headaches. I am shocked to think that the neurosurgeon > would imply that your daughter was trying to ditch school.Maybe he > was joking, but completely inappropriate as far as I am concerned. I > think I would try for a second opinion. The problem that we have > here in the Detroit Area is that peds neurosurgeons are pretty > scarce, so we are always looking for a good one out of state at this > point. My family and I will say a prayer for your daughter and your > family. > > Take Care, BarbR > > > > > > Hello Everyone, > > Our hospital stay is over, and hopefully she will be > > home for a long time now!!!! But, what they did find > > was a stable csf leak. Does/did anyone have this, and > > if so what did they do?? > > Thanks, > > Tommi > > 's (13), Mom Chicago IL. > > > > Tommi > > 's Mom > > Chicago, IL. USA > > > > __________________________________________________ > > Quote
Guest guest Posted September 9, 2006 Report Posted September 9, 2006 Hi Tommi, Just wanted to give you my experience with my own CSF leak. Mine happened after detethering #2 when the sutures from my duraplasty broke. It was pretty apparent what was happening because the spinal headaches were torturous and I had a massive, spongy, internal pseudomenigocele under my incision. My neurosurgeon said he didn't want to reoperate to close it despite my pleas because " most CSF leaks close up on their own. " Perhaps so, but certainly not mine. My leak went on for two years and caused me numerous problems before I FINALLY prevailed and got him to operate to close it. The leak caused me spinal headaches almost every day, I had two trips to the ER as a result of it (one of which involved a spinal tap for meningitis), and the formation of tons of pseudomeningoceles of spinal fluid, which, I believe, caused me to retether. The pseudomeningoceles eventually grew so numerous that they crowded the space around my spinal column and forced the dura into the spinal cord (I've seen the MRI first hand and have seen that I'm retethered exactly where the mass of pseudomeningoceles was.) I'm glad your hospital stay is done, but I'm so sorry to hear about this complication with . If they're refusing to deal with her leak now and are hoping it will close up on its own, ask what their timeline is for that. For example, if it's not closed on its own in three months, will they look at intervening in the new year with perhaps a blood patch procedure? If that doesn't work, will they consider surgery? (IF that's what and you want.) After I learned a blood patch was not possible in my case, I was desperate for them to close mine surgically. Mine just went on and on and on and never seemed to get better. Since they closed my leak surgically in January of this year...no problems and no spinal headaches. Is having headaches at the moment? If so, it helps to lie flat on her back. Drinking something with caffeine also helps. This increases the CSF in the brain. Best of luck. Please keep us posted, Debbie 2a. Stable CSF Leak Posted by: " tommi " tommigrl1@... tommigrl1 Date: Fri Sep 8, 2006 6:04 pm (PDT) Hello Everyone, Our hospital stay is over, and hopefully she will be home for a long time now!!!! But, what they did find was a stable csf leak. Does/did anyone have this, and if so what did they do?? Thanks, Tommi 's (13), Mom Chicago IL. Quote
Guest guest Posted September 9, 2006 Report Posted September 9, 2006 I also had a CSF leak after surgery, it leaked outside the dura and external stitches. My nsg put in a drain tube attached to an external bag. The nurses dumped about 450 ml per day. Amazingly, at that rate, I had no headaches. After about 10 days the drainage turned from brownish-red to clear and the nsg just pulled the tube out (without warning!) during a daily checkup visit. The tube gave the incision time to heal and seal, there was no stitches or anything to close the area where the tube went in. No more CSF leak, been fine since. I remember reading posts on here years ago where people have had CSF leaks for up to a year. Search the archives for CSF leak. Rick Quote
Guest guest Posted September 9, 2006 Report Posted September 9, 2006 Kathy, Thanks for the reply!! Today is another miserable day! She hasn't left her room, and has taped her blanket over the window to keep the light out! How fun!! But, I am so glad, and praise this list all of the time, I truly feel blessed that I have found this list!! Thanks Thanks Thanks AGAIN, I think I have said that a million times to you!! Tommi --- Moulton wrote: > Hi Tommi > > My nsg is wonderful, empathetic and sympathetic and > if it wasn't for his prodding and help with > disability, I don't know if I would have been able > to leave work as quickly as I did. Saying that > though, I want you to know that I had to beg him > practically, both times, to get my CSF leaks fixed. > They don't like to reoperate, not because they don't > want to, but because it isn't always successful. > These leaks are very difficult to find and it they > reexplore and don't find where the leak is coming > from, you risk meningitis, and all the other things > that you just risked with the untethering, plus > either making another leak or making this leak > worse. > > I was lucky both times, they found my leak, fixed it > and it worked. Ask why he won't reoperate now where > she is miserable: Having horrible pains, sensitive > to light and especially, especially missing school > and the beginning of school...why does he feel it's > worth waiting? What % of leaks does he see that > correct themselves? What % has he reoperated on and > corrected? (If it's not high enough then maybe > think about finding someone who is good at detecting > where the leak could be coming from and fixing > it...do they use glue and material and do a pressure > test before sealing the incision?) > > The nsg I saw in Boston, the head of pediatric nsgy > at MGH, was the only nsg that ever admitted to me > the amount of leaks he's seen in his own practice > after he operated and the amount he sees from other > nsgs who don't want to touch the leak for whatever > reason. All other nsgs I had seen when I asked > about leaks, always said yeah, it's a risk, but very > small. I always remembered what that nsg told me > ... " it's part of the beast. " > > I guess because I've felt as your daughter is two > times, had to wait and know what it's like, I'm > writing stronger than I usually do. > > It is miserable to feel that miserable all the > time...but, I believe wore than band also. he > did it because her incision wouldn't heal (she > visited me while her incision was open and I don't > know how she did it.) She may be able to help you > as far if these bands work. My doctor never > recommended this or brought it up...first leak as I > said was contained and I was able to do anything I > was able to do (which wasn't much at all...) But, > again, because it was contained, I was told by my > nsg and another one that I could live that way > forever if I so chose. (Unbelievable to me > still...) The other leak to the outside, they made > me wait even longer because by that time my back was > like hamburg as far as trying to get the muscle or > tissue to sew up...my nsg said it was just horrible > back there when he tried to open and seal. So, this > may be why also...maybe it's too soon and they feel > if the tissue can heal more? > > Let us know how she is and what you will be doing. > We'd all be happy to give you questions, and help > you feel you are doing the right thing. Only you > and your daughter know what is right, whether that's > wait and see, or let's get this out of the way now. > Oprah said something yesterday that really resonated > with me- you always know the right thing to do, > there is always a voice inside you telling what is > right/wrong if you just listen to it (not a direct > quote at all...very paraphrased.) > > Kathy > Stable CSF Leak > > > > > === message truncated === Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote
Guest guest Posted September 9, 2006 Report Posted September 9, 2006 Rick, Thanks for the reply....We had a leak before. And, it needed surgery for repair. They did not use an external drain, like you spoke of they just used a patch. Thanks, Tommi --- Rick wrote: > I also had a CSF leak after surgery, it leaked > outside the dura and > external stitches. My nsg put in a drain tube > attached to an external > bag. The nurses dumped about 450 ml per day. > Amazingly, at that rate, I > had no headaches. After about 10 days the drainage > turned from > brownish-red to clear and the nsg just pulled the > tube out (without > warning!) during a daily checkup visit. The tube > gave the incision time > to heal and seal, there was no stitches or anything > to close the area > where the tube went in. No more CSF leak, been fine > since. I remember > reading posts on here years ago where people have > had CSF leaks for up > to a year. Search the archives for CSF leak. > Rick > > > > Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote
Guest guest Posted September 9, 2006 Report Posted September 9, 2006 Tommi, Rob had his first surgery when he was 5, then 2 more a year later. One to untether, and one to repair CSF leak. BarbR > > > > > > Hello Everyone, > > > Our hospital stay is over, and hopefully she will > > be > > > home for a long time now!!!! But, what they did > > find > > > was a stable csf leak. Does/did anyone have this, > > and > > > if so what did they do?? > > > Thanks, > > > Tommi > > > 's (13), Mom Chicago IL. > > > > > > Tommi > > > 's Mom > > > Chicago, IL. USA > > > > > > __________________________________________________ > > > Quote
Guest guest Posted September 10, 2006 Report Posted September 10, 2006 Yep, I wore a abdominal binder after my surgery for a couple of months, trying to get the edges of the wound to stay together. They wouldn't. It was terribly uncomfortable & would have been worse if I had any skin sensation in my lumbar area. V Quote
Guest guest Posted September 10, 2006 Report Posted September 10, 2006 Kathy, I ran all that advice past , now if she listens that will be another thing.....you being a teenager 13, and all you know I know nothing!! I guess I will give it to Thursday, and if she is not better I will call the NSG again!! Thanks, Tommi --- Moulton wrote: > Hi Tommi > > My heart goes out to your daughter. I didn't have > the light sensitivity, but the head pains are so > overwhelming and painful it's amazing your daughter > isn't crawling to the nsg to be him to reoperate. > How old is she again? (Sorry .. can't remember.) > Please let her know, from me and others on the list > that have gone through this, that we understand how > horrible this pain is and the time seems to go by so > slow when you have this type of pain, but if she can > remain calm (hard to do when you want that leak > fixed), but the calmer you remain, the better you > feel. Tell her with thinking of her... > > At any rate, I was thinking last night of the things > that made me a little more comfortable and although > they're really just normal things, here it goes: > Standing very slowly ... any change in position > would bring the pressure right to my head. Laying > down almost flat, which in my own thinking, made the > fluid pressure more even and allowed it to drain > from my head. And of course, no straining. There > were times when just lifting a gallon of milk would > knock me down for two-three hours. > > Good luck...and no thanks necessary. > > Kathy > Re: Stable CSF Leak > > > > > > Side effects are horriable headaches,her neck > > hurts,the light hurts her eyes, she has no > > apetite, > > and she feels lightheaded everytime she gets up. > > She > > is miserable, but the NSG said he did think she > > needed > > surgery. She was inpatient for a week on a lot > of > > fluids. Then when they released her she was told > > to > > wear the abdominal binder for the next three > > months > > all of the time. If she is not feeling better in > a > > reasonable amount of time, we should follow up > > with > > the neurologist, and see what he has to say. We > > are > > also going to followed by cardiology because > they > > think the headaches might be caused by the > === message truncated === Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote
Guest guest Posted September 11, 2006 Report Posted September 11, 2006 Has she ever been checked for migraine? I get migraines and the light sensitivity thing is a real tip off. With both my surgeries, I had killer " leak " headaches, from loss of spinal fluid during the surgery, not from an actual after-the-fact leak. Movement caused great pain, any strain killed me, but light sensitivity sounds like a migraine. It would be quite coincidental, but it certainly isn't impossible. Has she hit puberty? I have had headaches all my life, but the migraines started right after I hit puberty and they put me out of commission many times before a doctor finally recognized what they were. They have some wonderful medications to stop migraine. You might want to have that checked so if it is migraine, she can get some relief. Hugs to her. I know how horrible headaches are, and no child deserves to have them. --- tommi wrote: > Kathy, > I ran all that advice past , now if she > listens > that will be another thing.....you being a teenager > 13, and all you know I know nothing!! > I guess I will give it to Thursday, and if she is > not > better I will call the NSG again!! > Thanks, > Tommi > > --- Moulton wrote: > > > Hi Tommi > > > > My heart goes out to your daughter. I didn't have > > the light sensitivity, but the head pains are so > > overwhelming and painful it's amazing your > daughter > > isn't crawling to the nsg to be him to reoperate. > > How old is she again? (Sorry .. can't remember.) > > Please let her know, from me and others on the > list > > that have gone through this, that we understand > how > > horrible this pain is and the time seems to go by > so > > slow when you have this type of pain, but if she > can > > remain calm (hard to do when you want that leak > > fixed), but the calmer you remain, the better you > > feel. Tell her with thinking of her... > > > > At any rate, I was thinking last night of the > things > > that made me a little more comfortable and > although > > they're really just normal things, here it goes: > > Standing very slowly ... any change in position > > would bring the pressure right to my head. Laying > > down almost flat, which in my own thinking, made > the > > fluid pressure more even and allowed it to drain > > from my head. And of course, no straining. There > > were times when just lifting a gallon of milk > would > > knock me down for two-three hours. > > > > Good luck...and no thanks necessary. > > > > Kathy > > Re: Stable CSF Leak > > > > > > > > > Side effects are horriable headaches,her neck > > > hurts,the light hurts her eyes, she has no > > > apetite, > > > and she feels lightheaded everytime she gets > up. > > > She > > > is miserable, but the NSG said he did think > she > > > needed > > > surgery. She was inpatient for a week on a lot > > of > > > fluids. Then when they released her she was > told > > > to > > > wear the abdominal binder for the next three > > > months > > > all of the time. If she is not feeling better > in > > a > > > reasonable amount of time, we should follow up > > > with > > > the neurologist, and see what he has to say. > We > > > are > > > also going to followed by cardiology because > > they > > > think the headaches might be caused by the > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > __________________________________________________ > Quote
Guest guest Posted September 11, 2006 Report Posted September 11, 2006 Thanks , But we have already ruled out mirgranes, because she feels better when she lies down. A couple of years ago when she had a pseudomengicele, her headache was the same! But, I guess we will give this time and see where it takes us! She really is miserable though. Thanks again!! Tommi --- Weaver wrote: > Has she ever been checked for migraine? I get > migraines and the light sensitivity thing is a real > tip off. With both my surgeries, I had killer " leak " > headaches, from loss of spinal fluid during the > surgery, not from an actual after-the-fact leak. > Movement caused great pain, any strain killed me, > but > light sensitivity sounds like a migraine. > > It would be quite coincidental, but it certainly > isn't > impossible. Has she hit puberty? I have had > headaches > all my life, but the migraines started right after I > hit puberty and they put me out of commission many > times before a doctor finally recognized what they > were. They have some wonderful medications to stop > migraine. You might want to have that checked so if > it is migraine, she can get some relief. > > Hugs to her. I know how horrible headaches are, and > no > child deserves to have them. > > > > --- tommi wrote: > > > Kathy, > > I ran all that advice past , now if she > > listens > > that will be another thing.....you being a > teenager > > 13, and all you know I know nothing!! > > I guess I will give it to Thursday, and if she is > > not > > better I will call the NSG again!! > > Thanks, > > Tommi > > > > --- Moulton wrote: > > > > > Hi Tommi > > > > > > My heart goes out to your daughter. I didn't > have > > > the light sensitivity, but the head pains are so > > > overwhelming and painful it's amazing your > > daughter > > > isn't crawling to the nsg to be him to > reoperate. > > > How old is she again? (Sorry .. can't > remember.) > > > Please let her know, from me and others on the > > list > > > that have gone through this, that we understand > > how > > > horrible this pain is and the time seems to go > by > > so > > > slow when you have this type of pain, but if she > > can > > > remain calm (hard to do when you want that leak > > > fixed), but the calmer you remain, the better > you > > > feel. Tell her with thinking of her... > > > > > > At any rate, I was thinking last night of the > > things > > > that made me a little more comfortable and > > although > > > they're really just normal things, here it goes: > > > Standing very slowly ... any change in position > > > would bring the pressure right to my head. > Laying > > > down almost flat, which in my own thinking, made > > the > > > fluid pressure more even and allowed it to drain > > > from my head. And of course, no straining. > There > > > were times when just lifting a gallon of milk > > would > > > knock me down for two-three hours. > > > > > > Good luck...and no thanks necessary. > > > > > > Kathy > > > Re: Stable CSF Leak > > > > > > > > > Kathy, > > > Thanks for the reply!! Today is another > > miserable > > > day! > > > > > > She hasn't left her room, and has taped her > > > blanket > > > over the window to keep the light out! How > fun!! > > > > > But, I am so glad, and praise this list all of > > the > > > time, I truly feel blessed that I have found > > this > > > list!! > > > Thanks Thanks Thanks AGAIN, I think I have > said > > > that a > > > million times to you!! > > > Tommi > > > > > > --- Moulton wrote: > > > > > > > Hi Tommi > > > > > > > > My nsg is wonderful, empathetic and > > sympathetic > > > and > > > > if it wasn't for his prodding and help with > > > > disability, I don't know if I would have > been > > > able > > > > to leave work as quickly as I did. Saying > that > > > > though, I want you to know that I had to beg > > him > > > > practically, both times, to get my CSF leaks > > > fixed. > > > > They don't like to reoperate, not because > they > > > don't > > > > want to, but because it isn't always > > successful. > > > > > > > These leaks are very difficult to find and > it > > > they > > > > reexplore and don't find where the leak is > > > coming > > > > from, you risk meningitis, and all the other > > > things > > > > that you just risked with the untethering, > > plus > > > > either making another leak or making this > leak > > > > worse. > > > > > > > > I was lucky both times, they found my leak, > > > fixed it > > > > and it worked. Ask why he won't reoperate > now > > > where > > > > she is miserable: Having horrible pains, > > > sensitive > > > > to light and especially, especially missing > > > school > > > > and the beginning of school...why does he > feel > > > it's > > > > worth waiting? What % of leaks does he see > > that > > > > correct themselves? What % has he reoperated > > on > > > and > > > > corrected? (If it's not high enough then > maybe > > > > think about finding someone who is good at > > > detecting > > > > where the leak could be coming from and > fixing > > > > it...do they use glue and material and do a > > > pressure > > > > test before sealing the incision?) > > > > > > > > The nsg I saw in Boston, the head of > pediatric > > > nsgy > > > > at MGH, was the only nsg that ever admitted > to > > > me > > > > the amount of leaks he's seen in his own > > > practice > > > > after he operated and the amount he sees > from > > > other > > > > nsgs who don't want to touch the leak for > > > whatever > > > > reason. All other nsgs I had seen when I > asked > > > > about leaks, always said yeah, it's a risk, > > but > > > very > > > > small. I always remembered what that nsg > told > > me > > > > ... " it's part of the beast. " > > > > > === message truncated === Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote
Guest guest Posted September 11, 2006 Report Posted September 11, 2006 Did a neurologist see her about her headaches (one that doesn't also follow her TCS)? My migraines are atypical, meaning they don't follow the normal pattern of a migraine. I don't get an aura. What happens to me is I feel a bit confused, can't listen to loud music, background noise bothers me, and I get irritable. Sometimes I recognize it and get the meds into me before the pain starts. Usually though I don't recognize it because of the confusion and several hours later, I get a migraine. Once the pain starts, lying down in a dark room with no noise and no smells makes me feel better. The pain goes away as long as I lie perfectly still. Movement causes thumping pain. Smells make me sick to my stomach and cause my head to thump. Light KILLS me. But as long as I can lie still in dark and quiet, I don't hurt. I also have pain bilaterally. And I know all that isn't normal for a migraine, but my headaches ARE migraines and the oddities of them are probably why it took me until I had been having them for more than a decade before they were diagnosed and treated properly. It's just something you might want to push for having checked. It's easy to tell if they're migraines. If she takes the migraine meds and the pain goes away, you got yourself a winner. Because of the way triptans work, they won't kill any other type of headache. I know with the doc I first had for headaches, he blamed EVERYTHING on my TCS. I know it might be a long shot, but it is possible and since the meds work pretty well, it's worth it to try. Oh, my 14 year old gets atypical migraines too. The doctor told me they couldn't possibly be migraines because he doesn't bury his head under the covers when he gets one. He just lies still and they go away after a few hours. Turns out, he has migraines and the triptans allow him to not waste 4 hours lying perfectly still. Go figure. And for interest's sake, there are things called silent migraines, you get all the symptoms of a migraine (confusion, light and sound sensitivity, etc.) but you never feel pain. I get those too. They are lovely and taking a triptan will stop the symptoms. --- tommi wrote: > Thanks , > But we have already ruled out mirgranes, because she > feels better when she lies down. A couple of years > ago > when she had a pseudomengicele, her headache was the > same! But, I guess we will give this time and see > where it takes us! She really is miserable though. > Thanks again!! > Tommi > > --- Weaver wrote: > > > Has she ever been checked for migraine? I get > > migraines and the light sensitivity thing is a > real > > tip off. With both my surgeries, I had killer > " leak " > > headaches, from loss of spinal fluid during the > > surgery, not from an actual after-the-fact leak. > > Movement caused great pain, any strain killed me, > > but > > light sensitivity sounds like a migraine. > > > > It would be quite coincidental, but it certainly > > isn't > > impossible. Has she hit puberty? I have had > > headaches > > all my life, but the migraines started right after > I > > hit puberty and they put me out of commission many > > times before a doctor finally recognized what they > > were. They have some wonderful medications to stop > > migraine. You might want to have that checked so > if > > it is migraine, she can get some relief. > > > > Hugs to her. I know how horrible headaches are, > and > > no > > child deserves to have them. > > > > > > > > --- tommi wrote: > > > > > Kathy, > > > I ran all that advice past , now if she > > > listens > > > that will be another thing.....you being a > > teenager > > > 13, and all you know I know nothing!! > > > I guess I will give it to Thursday, and if she > is > > > not > > > better I will call the NSG again!! > > > Thanks, > > > Tommi > > > > > > --- Moulton wrote: > > > > > > > Hi Tommi > > > > > > > > My heart goes out to your daughter. I didn't > > have > > > > the light sensitivity, but the head pains are > so > > > > overwhelming and painful it's amazing your > > > daughter > > > > isn't crawling to the nsg to be him to > > reoperate. > > > > How old is she again? (Sorry .. can't > > remember.) > > > > Please let her know, from me and others on the > > > list > > > > that have gone through this, that we > understand > > > how > > > > horrible this pain is and the time seems to go > > by > > > so > > > > slow when you have this type of pain, but if > she > > > can > > > > remain calm (hard to do when you want that > leak > > > > fixed), but the calmer you remain, the better > > you > > > > feel. Tell her with thinking of her... > > > > > > > > At any rate, I was thinking last night of the > > > things > > > > that made me a little more comfortable and > > > although > > > > they're really just normal things, here it > goes: > > > > Standing very slowly ... any change in > position > > > > would bring the pressure right to my head. > > Laying > > > > down almost flat, which in my own thinking, > made > > > the > > > > fluid pressure more even and allowed it to > drain > > > > from my head. And of course, no straining. > > There > > > > were times when just lifting a gallon of milk > > > would > > > > knock me down for two-three hours. > > > > > > > > Good luck...and no thanks necessary. > > > > > > > > Kathy > > > > Re: Stable CSF Leak > > > > > > > > > > > > Kathy, > > > > Thanks for the reply!! Today is another > > > miserable > > > > day! > > > > > > > > She hasn't left her room, and has taped her > > > > blanket > > > > over the window to keep the light out! How > > fun!! > > > > > > > But, I am so glad, and praise this list all > of > > > the > > > > time, I truly feel blessed that I have found > > > this > > > > list!! > > > > Thanks Thanks Thanks AGAIN, I think I have > > said > > > > that a > > > > million times to you!! > > > > Tommi > > > > > > > > --- Moulton wrote: > > > > > > > > > Hi Tommi > > > > > > > > > > My nsg is wonderful, empathetic and > > > sympathetic > > > > and > > > > > if it wasn't for his prodding and help > with > > > > > disability, I don't know if I would have > > been > > > > able > > > > > to leave work as quickly as I did. Saying > > that > > > > > though, I want you to know that I had to > beg > > > him > > > > > practically, both times, to get my CSF > leaks > > > > fixed. > > > > > They don't like to reoperate, not because > > they > > > > don't > > > > > want to, but because it isn't always > > > successful. > > > > > > > > > These leaks are very difficult to find and > > it > > > > they > > > > > reexplore and don't find where the leak is > > > > coming > > > > > from, you risk meningitis, and all the > other > > > > things > > > > > that you just risked with the untethering, > > > plus > > > > > either making another leak or making this > > leak > > > > > worse. > > > > > > > > > > I was lucky both times, they found my > leak, > > > > fixed it > > > > > and it worked. Ask why he won't reoperate > > now > > > > where > > > > > she is miserable: Having horrible pains, > > > > sensitive > > > > > to light and especially, especially > missing > > > > school > > > > > and the beginning of school...why does he > > feel > > > > it's > > > > > worth waiting? What % of leaks does he see > > > that > > > > > correct themselves? What % has he > reoperated > > > on > > > > and > > > > > corrected? (If it's not high enough then > > maybe > > > > > think about finding someone who is good at > > > > detecting > > > > > where the leak could be coming from and > > fixing > > > > > it...do they use glue and material and do > a > > > > pressure > > > > > test before sealing the incision?) > > > > > > > > > > The nsg I saw in Boston, the head of > > pediatric > > > > nsgy > > > > > at MGH, was the only nsg that ever > admitted > > to > > > > me > > > > > the amount of leaks he's seen in his own > > > > practice > > > > > after he operated and the amount he sees > > from > > > > other > > > > > nsgs who don't want to touch the leak for > > > > whatever > > > > > reason. All other nsgs I had seen when I > > asked > > > > > about leaks, always said yeah, it's a > risk, > > > but > > > > very > > > > > small. I always remembered what that nsg > > told > > > me > > > > > ... " it's part of the beast. " > > > > > > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > __________________________________________________ > Quote
Guest guest Posted September 11, 2006 Report Posted September 11, 2006 , She does see a Neurologist for headaches, and he has decided that they are positional. Because has kept headache diaries. Plus he said it is not normal for headaches to come everyday, and then to be able to lie down, and have them disappear. But, the suggestion was great. Plus, the neurologist, who by the way is the doctor who diagnosed her what feels like ages ago!! But, he is almost convinced that they are headaches due to low pressure. Plus when she gets the headaches, the only thing that helps is to lie down, mostly in the dark. But, noises never bother her. She lays in the dark, with no music or tv because she is trying to get to sleep. Also, I was told they don't think the headaches are migranes, because they come and go everyday! Thanks, Tommi --- Weaver wrote: > Did a neurologist see her about her headaches (one > that doesn't also follow her TCS)? My migraines are > atypical, meaning they don't follow the normal > pattern > of a migraine. I don't get an aura. What happens to > me > is I feel a bit confused, can't listen to loud > music, > background noise bothers me, and I get irritable. > Sometimes I recognize it and get the meds into me > before the pain starts. Usually though I don't > recognize it because of the confusion and several > hours later, I get a migraine. > > Once the pain starts, lying down in a dark room with > no noise and no smells makes me feel better. The > pain > goes away as long as I lie perfectly still. > Movement > causes thumping pain. Smells make me sick to my > stomach and cause my head to thump. Light KILLS me. > But as long as I can lie still in dark and quiet, I > don't hurt. I also have pain bilaterally. And I > know > all that isn't normal for a migraine, but my > headaches > ARE migraines and the oddities of them are probably > why it took me until I had been having them for more > than a decade before they were diagnosed and treated > properly. > > It's just something you might want to push for > having > checked. It's easy to tell if they're migraines. If > she takes the migraine meds and the pain goes away, > you got yourself a winner. Because of the way > triptans work, they won't kill any other type of > headache. I know with the doc I first had for > headaches, he blamed EVERYTHING on my TCS. > > I know it might be a long shot, but it is possible > and > since the meds work pretty well, it's worth it to > try. > Oh, my 14 year old gets atypical migraines too. The > doctor told me they couldn't possibly be migraines > because he doesn't bury his head under the covers > when > he gets one. He just lies still and they go away > after > a few hours. Turns out, he has migraines and the > triptans allow him to not waste 4 hours lying > perfectly still. Go figure. > > And for interest's sake, there are things called > silent migraines, you get all the symptoms of a > migraine (confusion, light and sound sensitivity, > etc.) but you never feel pain. I get those too. > They > are lovely and taking a triptan will stop the > symptoms. > > > > --- tommi wrote: > > > Thanks , > > But we have already ruled out mirgranes, because > she > > feels better when she lies down. A couple of years > > ago > > when she had a pseudomengicele, her headache was > the > > same! But, I guess we will give this time and see > > where it takes us! She really is miserable though. > > > Thanks again!! > > Tommi > > > > --- Weaver wrote: > > > > > Has she ever been checked for migraine? I get > > > migraines and the light sensitivity thing is a > > real > > > tip off. With both my surgeries, I had killer > > " leak " > > > headaches, from loss of spinal fluid during the > > > surgery, not from an actual after-the-fact leak. > > > > Movement caused great pain, any strain killed > me, > > > but > > > light sensitivity sounds like a migraine. > > > > > > It would be quite coincidental, but it certainly > > > isn't > > > impossible. Has she hit puberty? I have had > > > headaches > > > all my life, but the migraines started right > after > > I > > > hit puberty and they put me out of commission > many > > > times before a doctor finally recognized what > they > > > were. They have some wonderful medications to > stop > > > migraine. You might want to have that checked > so > > if > > > it is migraine, she can get some relief. > > > > > > Hugs to her. I know how horrible headaches are, > > and > > > no > > > child deserves to have them. > > > > > > > > > > > > --- tommi wrote: > > > > > > > Kathy, > > > > I ran all that advice past , now if she > > > > listens > > > > that will be another thing.....you being a > > > teenager > > > > 13, and all you know I know nothing!! > > > > I guess I will give it to Thursday, and if she > > is > > > > not > > > > better I will call the NSG again!! > > > > Thanks, > > > > Tommi > > > > > > > > --- Moulton wrote: > > > > > > > > > Hi Tommi > > > > > > > > > > My heart goes out to your daughter. I > didn't > > > have > > > > > the light sensitivity, but the head pains > are > > so > > > > > overwhelming and painful it's amazing your > > > > daughter > > > > > isn't crawling to the nsg to be him to > > > reoperate. > > > > > How old is she again? (Sorry .. can't > > > remember.) > > > > > Please let her know, from me and others on > the > > > > list > > > > > that have gone through this, that we > > understand > > > > how > > > > > horrible this pain is and the time seems to > go > > > by > > > > so > > > > > slow when you have this type of pain, but if > > she > > > > can > > > > > remain calm (hard to do when you want that > > leak > > > > > fixed), but the calmer you remain, the > better > > > you > > > > > feel. Tell her with thinking of her... > > > > > > > > > > At any rate, I was thinking last night of > the > > > > things > > > > > that made me a little more comfortable and > > > > although > > > > > they're really just normal things, here it > > goes: > > > > > Standing very slowly ... any change in > > position > > > > > would bring the pressure right to my head. > > > Laying > > > > > down almost flat, which in my own thinking, > > made > > > > the > > > > > fluid pressure more even and allowed it to > > drain > > > > > from my head. And of course, no straining. > > > There > > > > > were times when just lifting a gallon of > milk > > > > would > > > > > knock me down for two-three hours. > > > > > > > > > > Good luck...and no thanks necessary. > > > > > > > > > > Kathy > > > > > Re: Stable CSF Leak > === message truncated === Tommi 's Mom Chicago, IL. USA __________________________________________________ Quote
Guest guest Posted September 12, 2006 Report Posted September 12, 2006 -HI Tommi, I,m sorry to hear that your girl is still having those darn headaches! I know that when Robby had the leak they were encouraging him to drink caffiene ( coke,pepsi, MT. dew, his drinks of choice)as it helped to replenish the spinal fluid. Lying flat also seemed to help him. Rob is starting the 7th grade, and I homeschool him and my other boy who is 10. It works for us because he was missing so much school, and middle school was not very accomodating with his health situation. Take care, BarbR -- In tetheredspinalcord , " brbrrss " wrote: > > Tommi, > > > Rob had his first surgery when he was 5, then 2 more a year later. > One to untether, and one to repair CSF leak. > > BarbR > > > > > > > > > > Hello Everyone, > > > > Our hospital stay is over, and hopefully she will > > > be > > > > home for a long time now!!!! But, what they did > > > find > > > > was a stable csf leak. Does/did anyone have this, > > > and > > > > if so what did they do?? > > > > Thanks, > > > > Tommi > > > > 's (13), Mom Chicago IL. > > > > > > > > Tommi > > > > 's Mom > > > > Chicago, IL. USA > > > > > > > > __________________________________________________ > > > > Quote
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