Guest guest Posted September 10, 2006 Report Share Posted September 10, 2006 Hi Kelli I'm sorry I can't help you with your questions...I was diagnosed with Lipomingocele as an adult (had some symptoms as a kid but back 44 years ago they didn't have MRIs or astute neuro doctors like they do now.) I was curious though - you said below that one of your issues for your baby is pain. What type of pain does she have? How do you know? (I raised four children and have a granddaughter just one month younger than your baby) and I'm trying to picture how you would know if your baby has pain. I ask because there are a lot of adults that have come and gone on the list (and are still here), that have said they grew up thinking pain was a normal thing that everyone experienced until some point in their lives when they realized that others didn't have chronic pain also as a part of every day life. I've always thought how horrible that must be - to have pain at such a young age and think that everyone is like that and that's how life is. I think it's amazing and fantastic that you are able to see this issue with your child, but just curious how you know (even though my grandbaby has no signs of a neural tube defect, I can't help but watch her so every closely when she's with us to see if there are any signs we're missing.) Welcome to our list and although I'm so very sorry your daughter may have tethered cord, I'm glad you found us! Kathy co-owner, co-moderator New to group f a fatty filum and what the outcome was. We're so=20 eager to find some relief for our little girl. Thanks so much! ------=_NextPart_000_0009_01C6D4F3.4CE8BB60 Content-Type: text/html; charset= " ISO-8859-1 " Content-Transfer-Encoding: 7bit Hi, everyone, I just thought I'd take the opportunity to introduce myself and my daughter. I just found out last week that my 13 month old daughter, Alison, has a fatty filum and possible tethered cord. She was already being followed by a pediatric neurosurgeon because of external hydrocephalus, but it was actually her gastroenterologist who ordered the MRI of her spine because of intractable constipation that has yet to respond well to any medications. Her neurosurgeon has ordered a urodynamic study to assess nerve involvement (I think?), and then we will go from there. There are concerns because of the constipation, chronic pain issues, delays in gross motor milestones, and the fact that she won't even try to walk. I'd love to hear if there is anyone else out there who has had surgery because of a fatty filum and what the outcome was. We're so eager to find some relief for our little girl. Thanks so much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 Hi , I'm the grandmother to a 26 month old girl, Mackenzie, who just had her second untethering in August. She has also had constant problems with constipation since birth. She has been on Miralax (spelling?) since she was about 6 months old; my daughter has become very adept at judging how much she should get each day by keeping track of her bowel movements. Kenzie was discovered to have left sided ureteral reflux with an enlarged kidney and had a ureteral reimplantation done after having many, many urinary tract infections. She has had several urodynamic tests done. After her first untethering it was discovered that she was refluxing on the right side and the right kidney was now enlarged while the left side was starting to go down. She had deflux paste done in May and we have not had testing done since then because of the retethering and her gait problems. Her reflux had gotten so bad it was decided she had to have the untethering done within the month or else risk losing her kidneys and being on dialysis. She has done very well after both of her surgeries, but she has the added advantage of being a twin who seems to be completely normal in every way. Her early childhood teacher thinks without her having a twin she would be very far behind developmentally. She is having some speech issues now along with some sensory problems and of course she is weak after her surgery. If you having any other questions, please let me know. Hugs, Diane V. dvstitch@... New to group Hi, everyone, I just thought I'd take the opportunity to introduce myself and my daughter. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2007 Report Share Posted October 29, 2007 Hello, My daughter was in a car accident 2001 and was ejected from the vehicle. She has been through several surguries from the accident. She has been in chronic pain since. Upon received a third MRI on her lower back we were told she has tsc! Wow what a shock so many thing add up though! She was born with a severe dimple in her lower spine in which the physician told me " be blessed she doesn't have spindal bifida this is Gods way of closing the spine. " Three test came back while I was pregnant with her she had spinal bifada or downs syndrome. I had a amnio while pregnant with her to rule out this it all came back negative. She remained for the most part in life no symtoms until the accident. We are new at all this...just wanting any advice or opinion. We live in Houston, Texas. I want to see my daughter out of pain and functioning in life she is only 20 years old. ANY advice would be helpful. We went to a neurosurgeon on Friday. She has another MRI on brain for migraines and neck on Monday. We lost our son who was sixteen year old through all this so life has been unbearable at times. I am not sure what I would do with out her. I hate seeing her like this. We have been through three neurosurgeon opinions. It seems like many just want to give pills and mdicate the situation. Her cord is stretched to the fullest she is 5'9 " it is amazing she grew that tall. Don't mean to ramble but I am at a loss. HELP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2007 Report Share Posted October 31, 2007 Rande, It's been my experience that neurosurgs generally recommend surgery for newly Dx TSC in adults regardless of the symptoms (unfortunately). Then again, I think that is not neurosurgeons alone - I think surgeons of any kind are kind of " surgery happy " and will recommend surgery. Some of them seem to be changing their tune ever so slowly, but they seem to be in the minority. It also seems that every newly Dx adult I meet online who just had surgery had pain as their only symptom. Then there is the issue of all the neurosurgs recommending " prophylactic " untetherings for asymptomatic children. The surgery they do may cause more problems than the initial tether & generally doesn't save the child from future untetherings. Its a shame the results of official medical studies lag so far behind things people have been saying on this list and others like it for years. I'm glad to hear that someone is beginning to see changes in the attitudes of the medical community with regard to Tx of TCS. It's encouraging. Jenn > > Dear . > I know all of our hearts go out to you. I would not proceed with surgery > if > the only symptom is pain no matter how painful it is. That is just my > opinion having put our daughter when she was 14, 15 and 16 through > surgeries when > her initial symptom was pain and due to the subsequent scar tissue she now > has numbness and weakness along with the pain. I think most NSG would not > suggest surgery for an adult for pain alone and I would love to have done > it > differently. Having said that, I cannot imagine seeing my child in severe > pain > constantly and understand your so wanting anything to make it better. > Hugs from a Mom to a Mom > Randee > > > > In a message dated 10/28/2007 11:43:04 P.M. Eastern Daylight Time, > twerring@... writes: > > > > > Hello, > > My daughter was in a car accident 2001 and was ejected from the > vehicle. She has been through several surguries from the accident. > She has been in chronic pain since. Upon received a third MRI on > her lower back we were told she has tsc! Wow what a shock so many > thing add up though! She was born with a severe dimple in her lower > spine in which the physician told me " be blessed she doesn't have > spindal bifida this is Gods way of closing the spine. " Three test > came back while I was pregnant with her she had spinal bifada or > downs syndrome. I had a amnio while pregnant with her to rule out > this it all came back negative. She remained for the most part in > life no symtoms until the accident. We are new at all this...just > wanting any advice or opinion. We live in Houston, Texas. I want > to see my daughter out of pain and functioning in life she is only > 20 years old. ANY advice would be helpful. We went to a > neurosurgeon on Friday. She has another MRI on brain for migraines > and neck on Monday. We lost our son who was sixteen year old > through all this so life has been unbearable at times. I am not > sure what I would do with out her. I hate seeing her like this. We > have been through three neurosurgeon opinions. It seems like many > just want to give pills and mdicate the situation. Her cord is > stretched to the fullest she is 5'9 " it is amazing she grew that > tall. Don't mean to ramble but I am at a loss. HELP. > > > > > > > > > > > ************************************** See what's new at http://www.aol.com > > > Quote Link to comment Share on other sites More sharing options...
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