Guest guest Posted November 15, 2007 Report Share Posted November 15, 2007 Good morning, I am wondering if you all know of any doctors in the Northeast that dx occult tethered cords when the conus is in at normal level. Feel free to email me off list. My daughter was dx. at TCI in September, and yesterday had the horrible unprofessional experience of a doctor spending time in the appointment bashing TCI- big time. I do not doubt the good doctors at TCI, but there are insurances issues to deal with and she was hoping to find a doctor in-network that would concur with their dx of her problems. Not sure why doctors have to act so unprofessionally, this guy merely bashed TCI and then did NOT give her a dx as to why she has her back pain, bladder issues, numb soles of feet. Why spend time going to doctors if the appointments are going to be like this!! Very disgusted at this point. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2007 Report Share Posted November 15, 2007 , I'm sorry your daughter had such an awful time. I had that experience with an orthopedic doctor when my daughter had a sports injury. He was way more interested in telling me how he treats Penn State athletes and yelling at my daughter for having her tongue pierced than he was at looking at the 30 degree curve in her spine. It was horrible. He tried to tell me that she must have had that curve all along and that I just hadn't noticed. She was C shaped - had walked onto the field standing upright and walked off crooked. We found another doctor. Unfortunately for everyone, doctors are human. Some of them can't keep their opinions to themselves even when it's in the best interest of the patient. I think it's okay for doctors to not agree with each other, but it isn't their job to share that disagreement with patients. Where are you located in the northeast? --- noswetham wrote: > Good morning, I am wondering if you all know of any > doctors in the > Northeast that dx occult tethered cords when the > conus is in at normal > level. Feel free to email me off list. My daughter > was dx. at TCI in > September, and yesterday had the horrible > unprofessional experience of > a doctor spending time in the appointment bashing > TCI- big time. I do > not doubt the good doctors at TCI, but there are > insurances issues to > deal with and she was hoping to find a doctor > in-network that would > concur with their dx of her problems. Not sure why > doctors have to > act so unprofessionally, this guy merely bashed TCI > and then did NOT > give her a dx as to why she has her back pain, > bladder issues, numb > soles of feet. Why spend time going to doctors if > the appointments are > going to be like this!! Very disgusted at this > point. > > Check out my blog: http://princessmatildalovestostamp.blogspot.com ________________________________________________________________________________\ ____ Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. http://mobile.yahoo.com/sports;_ylt=At9_qDKvtAbMuh1G1SQtBI7ntAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2007 Report Share Posted November 15, 2007 My daughter is located in Rhode Island. It is easy for her to get to Boston, or NYC. It is her BC/BS that is the issue currently. I think she is a member if this group, and she might add a reply here, but she does not have access to a computer while she is at work like i do, so I am starting the search for her. -- In tetheredspinalcord , Weaver wrote: > > , > > I'm sorry your daughter had such an awful time. I had > that experience with an orthopedic doctor when my > daughter had a sports injury. He was way more > interested in telling me how he treats Penn State > athletes and yelling at my daughter for having her > tongue pierced than he was at looking at the 30 degree > curve in her spine. It was horrible. He tried to > tell me that she must have had that curve all along > and that I just hadn't noticed. She was C shaped - > had walked onto the field standing upright and walked > off crooked. We found another doctor. > > Unfortunately for everyone, doctors are human. Some > of them can't keep their opinions to themselves even > when it's in the best interest of the patient. I > think it's okay for doctors to not agree with each > other, but it isn't their job to share that > disagreement with patients. > > Where are you located in the northeast? > > > > > > > --- noswetham wrote: > > > Good morning, I am wondering if you all know of any > > doctors in the > > Northeast that dx occult tethered cords when the > > conus is in at normal > > level. Feel free to email me off list. My daughter > > was dx. at TCI in > > September, and yesterday had the horrible > > unprofessional experience of > > a doctor spending time in the appointment bashing > > TCI- big time. I do > > not doubt the good doctors at TCI, but there are > > insurances issues to > > deal with and she was hoping to find a doctor > > in-network that would > > concur with their dx of her problems. Not sure why > > doctors have to > > act so unprofessionally, this guy merely bashed TCI > > and then did NOT > > give her a dx as to why she has her back pain, > > bladder issues, numb > > soles of feet. Why spend time going to doctors if > > the appointments are > > going to be like this!! Very disgusted at this > > point. > > > > > > > > > > Check out my blog: http://princessmatildalovestostamp.blogspot.com > > > ________________________________________________________________________________\ ____ > Be a better sports nut! Let your teams follow you > with Yahoo Mobile. Try it now. http://mobile.yahoo.com/sports;_ylt=At9_qDKvtAbMuh1G1SQtBI7ntAcJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2007 Report Share Posted November 15, 2007 , My 2.5 year old son had TC surgery last year at TCI. Based on his symptoms, they felt that TC was his issue. Sure enough, during surgery they saw that his cord was tightly tetherd and had virtually no CSF flow. (His pre-surg. MRI revealed a normal level of the conus as well) The experience and knowledge gained from the sheer volume of Chiari/TC patients they encounter made the difference for me. I have no doubt that they do the " right thing " for there patients. Good luck, Henry ---- noswetham wrote: > Good morning, I am wondering if you all know of any doctors in the > Northeast that dx occult tethered cords when the conus is in at normal > level. Feel free to email me off list. My daughter was dx. at TCI in > September, and yesterday had the horrible unprofessional experience of > a doctor spending time in the appointment bashing TCI- big time. I do > not doubt the good doctors at TCI, but there are insurances issues to > deal with and she was hoping to find a doctor in-network that would > concur with their dx of her problems. Not sure why doctors have to > act so unprofessionally, this guy merely bashed TCI and then did NOT > give her a dx as to why she has her back pain, bladder issues, numb > soles of feet. Why spend time going to doctors if the appointments are > going to be like this!! Very disgusted at this point. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2007 Report Share Posted November 15, 2007 , I'm so sorry to hear about your experience. Like said, docs are human, and they all have personalities -- some good and others, well.... not so good. I've heard some people sing the praises of TCI. But you have to be able to afford it. I think you can get quality care from someone on your insurance plan, it just might take some work to find them. I kind of equate it to film review. There are tons of docs out there that will review your films free of charge and let you know if they can help you or not. There are a few that want you to pay hundreds of dollars up front for their impression of your films. I stay away from them because I think you can get an equally qualified impression/opinion from someone who will not charge you until you go to see him/her. I wish I had advice about specific docs in the NE, but GA is a bit far. The only doc I know of that a lot of people have gone to on the list and my own neurosurg recommended is Dr. Frim in Chicago. But again, probably not on your daughter's insurance. Unless she has out of network benefits. At least then they will pay, but at a lower rate. But here are some ideas to find a neurosurg that will work with your daughter. * Has she called her primary care and asked for a referral to someone her PCP knows and trusts? * Do you have a children's hospital referral network/referral line? For example, in Atlanta, Children's Healthcare of Atlanta has a referral number you can call to find a doc for anything. * Is there a local SB chapter in your area? If so, contact them and see who parents and adults in your area are using. Most local SB chapters also have parents or adults that are willing to talk to newly Dx people in their area (like a Mentor or buddy program). They can tell you about their experiences with certain docs and maybe give you the " rumor " about certain docs. Who knows, maybe the doc you guys saw is notorious for behaving the way he did and no one sees him in NTD circles for that reason. If there is not a local chapter, contact national. They might be able to do the same thing. * If there are only a few adult and pedi neurosurgeons in her insurance book (and she does not have out of network benefits), then call them and ask to schedule an appointment with them to interview them. Docs should be willing to be interviewed about their practices, their treatment philosophy, a tour of their office, to see if your demeanor " clicks " with theirs, that kind of thing. Perhaps you could have a phone interview with the RN, or meet with his/her RN and at least " meet " the doc as far as saying " hi " and I'm interested in using you, but I've had a bad experience and I wanted to just meet you first. They should be willing to do that. You should also contact the pedi neurosurgeons on her plan and even see if they are willing to treat adults. Many will not even touch adults. You can rule those out right away. * See if there is a MSCIC (model spinal cord injury center) close to her. I think Kessler is up there. People with SCIs can develop TSC too, and TSC and the surgery to fix it can cause paralysis so they are familiar with the surgery and rehab for it. You might want to check into the MSCICs close by and the neurosurgeons that are there. While not a " NTD " specialist, they operate on TSC on post-SCI all the time. And to qualify as a MSCIC, is very difficult. These facilities are top notch. Just because they have " SCI " in their name does not mean they treat only injuries. They also treat paralysis and other neurologic problems caused by spinal cord disease (such as NTD, MS, MD, those kinds of things -- so don't let the SCI throw you). If you would like to look into the MSCIC route, you can find them here: http://www.mscisdisseminationcenter.org/ I do not go to an SB center for my care. Or even the model SCI center down the street (they are set up like SB centers with all your treatment under one roof). I kind of piece together my " team. " I think you can get quality care that your insurance will cover. It just might take some additional work to search out the best, get the referrals (if required). Hopefully some people will be able to recommend specific docs, but if not, I hope these suggestions will be able to help you find some on your own that will work for you. Jenn > Good morning, I am wondering if you all know of any doctors in the > Northeast that dx occult tethered cords when the conus is in at normal > level. Feel free to email me off list. My daughter was dx. at TCI in > September, and yesterday had the horrible unprofessional experience of > a doctor spending time in the appointment bashing TCI- big time. I do > not doubt the good doctors at TCI, but there are insurances issues to > deal with and she was hoping to find a doctor in-network that would > concur with their dx of her problems. Not sure why doctors have to > act so unprofessionally, this guy merely bashed TCI and then did NOT > give her a dx as to why she has her back pain, bladder issues, numb > soles of feet. Why spend time going to doctors if the appointments are > going to be like this!! Very disgusted at this point. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2007 Report Share Posted November 16, 2007 Just curious... what is TCI? Amber > > Good morning, I am wondering if you all know of any doctors in the > > Northeast that dx occult tethered cords when the conus is in at normal > > level. Feel free to email me off list. My daughter was dx. at TCI in > > September, and yesterday had the horrible unprofessional experience of > > a doctor spending time in the appointment bashing TCI- big time. I do > > not doubt the good doctors at TCI, but there are insurances issues to > > deal with and she was hoping to find a doctor in-network that would > > concur with their dx of her problems. Not sure why doctors have to > > act so unprofessionally, this guy merely bashed TCI and then did NOT > > give her a dx as to why she has her back pain, bladder issues, numb > > soles of feet. Why spend time going to doctors if the appointments are > > going to be like this!! Very disgusted at this point. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2007 Report Share Posted November 16, 2007 The Chiari Institute in NYC. They did my tethered cord surgery. They spealize in Chiari so if you do not have that I do not know if they would take you, but I do not know. Sent from my Verizon Wireless BlackBerry Re: Occult tethered cord Just curious... what is TCI? Amber > > Good morning, I am wondering if you all know of any doctors in the > > Northeast that dx occult tethered cords when the conus is in at normal > > level. Feel free to email me off list. My daughter was dx. at TCI in > > September, and yesterday had the horrible unprofessional experience of > > a doctor spending time in the appointment bashing TCI- big time. I do > > not doubt the good doctors at TCI, but there are insurances issues to > > deal with and she was hoping to find a doctor in-network that would > > concur with their dx of her problems. Not sure why doctors have to > > act so unprofessionally, this guy merely bashed TCI and then did NOT > > give her a dx as to why she has her back pain, bladder issues, numb > > soles of feet. Why spend time going to doctors if the appointments are > > going to be like this!! Very disgusted at this point. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 TCI ( The Chiari Institute) has accepted my daughter as a patient, and she doe snot have Chiari or Syringomyelia, " just " a thered cord. How have you been since your surgery? What symptoms did it help? Thanks!! > > > Good morning, I am wondering if you all know of any doctors in the > > > Northeast that dx occult tethered cords when the conus is in at normal > > > level. Feel free to email me off list. My daughter was dx. at TCI in > > > September, and yesterday had the horrible unprofessional experience of > > > a doctor spending time in the appointment bashing TCI- big time. I do > > > not doubt the good doctors at TCI, but there are insurances issues to > > > deal with and she was hoping to find a doctor in-network that would > > > concur with their dx of her problems. Not sure why doctors have to > > > act so unprofessionally, this guy merely bashed TCI and then did NOT > > > give her a dx as to why she has her back pain, bladder issues, numb > > > soles of feet. Why spend time going to doctors if the appointments are > > > going to be like this!! Very disgusted at this point. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 Hi I'm sorry you guys had a hard time with your recent doctor visit. Unfortunately tcs is a very controversial/gray area in medicine that like every change in medicine takes a while to get around. I try to remind myself that everyone laughed when penicillin came out. TCS from open spina bifida has been recognized for ages but the more hidden forms have only been recognized and treated fairly recently. Doctors can disagree with each other but it should be presented in a professional form, just stating that in their opinion, they can't make the same diagnosis with current data is usually sufficient, no need to bash others. I do feel there is a fair amount of competition amongst neurosurgeons which seem more open to bashing each other than other specialties. I had tcs surgery 2 years ago, I sent my scans all over the country and met with 6-7 neurosurgeons and 2 neurologists from well known centers that all gave me different answers (and all ended up being wrong), so I can give you my brief list of people I think might be able to help and hopefully you can save time, money and emotions if you find the right person. It's very stressful as a parent to be treated like that b/c you want to do wants best for your child. I am also now dealing with all this with my 4 year old that has chiari and now possible tcs but " fortunately " the " silver lining " of my tcs is to have my experience with it in order to help my son. I have to say that in 2 years there has been a lot more papers and knowledge about more occult forms of tcs So here's my list, asides from TCI: Dr. Jerry OAkes (AL) Dr. (TX) Dr. Frim (Chicago) Dr. Iskander in WI, not sure if he sees kids. I think MIami might have some one. Some centers seems like they would take a case like this if they had tests to help confirm such as urodynamic abnormalities, etc. My surgeon (Dr. town University) was great, he is mainly an adult surgeon but sees kids. He is not necessarily just doing chiari/tcs like at TCI but really helped me. What symptoms does your daughter have? Best wishes AG > > Good morning, I am wondering if you all know of any doctors in the > Northeast that dx occult tethered cords when the conus is in at normal > level. Feel free to email me off list. My daughter was dx. at TCI in > September, and yesterday had the horrible unprofessional experience of > a doctor spending time in the appointment bashing TCI- big time. I do > not doubt the good doctors at TCI, but there are insurances issues to > deal with and she was hoping to find a doctor in-network that would > concur with their dx of her problems. Not sure why doctors have to > act so unprofessionally, this guy merely bashed TCI and then did NOT > give her a dx as to why she has her back pain, bladder issues, numb > soles of feet. Why spend time going to doctors if the appointments are > going to be like this!! Very disgusted at this point. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 -She is 24, and is " still my baby " -but she is happily married and lives in Rhode Island. She has an assortment of symptoms: Low back pain,hr back has been an issue for years, recently it is quite severe at times, she retains 100cc of urine after voiding according to urodynamic study (we have been told that 150cc is significant, 100cc - not so much) , leg pains, mild scoliosis, numb soles of feet, lots of gastro issues of indigestion and nausea, and makes kidney stones. One of her renal scans shows hydronephrosis of one of her kidneys, but the doctors at TCI feel that is due to the stones, not the rentenion, as it would be on both sides then. She also has a cervical rib, but no one seems concerned about this, just an odd thing I guess. We are not sure what is related or not, TCI doctors feel it is a TC, and I guess foolishly, we were hoping for a confirmation of this, after all, it is spine surgery. We went to TCI as her aunt has syringomyelia and her older brother has a brain cyst at the base of his skull (but that is a different Yahoo group). Related-who knows, I am no longer sure what to think........ -- In tetheredspinalcord , " alexgmd " wrote: > > Hi > I'm sorry you guys had a hard time with your recent doctor visit. > Unfortunately tcs is a very controversial/gray area in medicine that > like every change in medicine takes a while to get around. > I try to remind myself that everyone laughed when penicillin came out. > TCS from open spina bifida has been recognized for ages but the more > hidden forms have only been recognized and treated fairly recently. > Doctors can disagree with each other but it should be presented in a > professional form, just stating that in their opinion, they can't make > the same diagnosis with current data is usually sufficient, no need to > bash others. I do feel there is a fair amount of competition amongst > neurosurgeons which seem more open to bashing each other than other > specialties. > I had tcs surgery 2 years ago, I sent my scans all over the country and > met with 6-7 neurosurgeons and 2 neurologists from well known centers > that all gave me different answers (and all ended up being wrong), so I > can give you my brief list of people I think might be able to help and > hopefully you can save time, money and emotions if you find the right > person. It's very stressful as a parent to be treated like that b/c you > want to do wants best for your child. > I am also now dealing with all this with my 4 year old that has chiari > and now possible tcs but " fortunately " the " silver lining " of my tcs is > to have my experience with it in order to help my son. > I have to say that in 2 years there has been a lot more papers and > knowledge about more occult forms of tcs > So here's my list, asides from TCI: > Dr. Jerry OAkes (AL) > Dr. (TX) > Dr. Frim (Chicago) > Dr. Iskander in WI, not sure if he sees kids. > I think MIami might have some one. > Some centers seems like they would take a case like this if they had > tests to help confirm such as urodynamic abnormalities, etc. > My surgeon (Dr. town University) was great, he is > mainly an adult surgeon but sees kids. He is not necessarily just doing > chiari/tcs like at TCI but really helped me. > > What symptoms does your daughter have? > > Best wishes > > AG > > > > > > Good morning, I am wondering if you all know of any doctors in the > > Northeast that dx occult tethered cords when the conus is in at normal > > level. Feel free to email me off list. My daughter was dx. at TCI in > > September, and yesterday had the horrible unprofessional experience of > > a doctor spending time in the appointment bashing TCI- big time. I do > > not doubt the good doctors at TCI, but there are insurances issues to > > deal with and she was hoping to find a doctor in-network that would > > concur with their dx of her problems. Not sure why doctors have to > > act so unprofessionally, this guy merely bashed TCI and then did NOT > > give her a dx as to why she has her back pain, bladder issues, numb > > soles of feet. Why spend time going to doctors if the appointments are > > going to be like this!! Very disgusted at this point. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 Oh good, they are wonderful. My biggest symptoms were hip and low back pain, incontinence, and numbness in legs, and difficult walking. All my symptoms disappeared for the most part, except when I did a squat in therapy I got low back pain, but it is getting better. No regrets from the surgery and no side effects. Let me know if you have any other questions. Good luck and God bless. Sent from my Verizon Wireless BlackBerry Re: Occult tethered cord TCI ( The Chiari Institute) has accepted my daughter as a patient, and she doe snot have Chiari or Syringomyelia, " just " a thered cord. How have you been since your surgery? What symptoms did it help? Thanks!! > > > Good morning, I am wondering if you all know of any doctors in the > > > Northeast that dx occult tethered cords when the conus is in at normal > > > level. Feel free to email me off list. My daughter was dx. at TCI in > > > September, and yesterday had the horrible unprofessional experience of > > > a doctor spending time in the appointment bashing TCI- big time. I do > > > not doubt the good doctors at TCI, but there are insurances issues to > > > deal with and she was hoping to find a doctor in-network that would > > > concur with their dx of her problems. Not sure why doctors have to > > > act so unprofessionally, this guy merely bashed TCI and then did NOT > > > give her a dx as to why she has her back pain, bladder issues, numb > > > soles of feet. Why spend time going to doctors if the appointments are > > > going to be like this!! Very disgusted at this point. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 Thanks! We will find out soon enough the extent of Ky's neurological issues! Amber > > > Good morning, I am wondering if you all know of any doctors in the > > > Northeast that dx occult tethered cords when the conus is in at normal > > > level. Feel free to email me off list. My daughter was dx. at TCI in > > > September, and yesterday had the horrible unprofessional experience of > > > a doctor spending time in the appointment bashing TCI- big time. I do > > > not doubt the good doctors at TCI, but there are insurances issues to > > > deal with and she was hoping to find a doctor in-network that would > > > concur with their dx of her problems. Not sure why doctors have to > > > act so unprofessionally, this guy merely bashed TCI and then did NOT > > > give her a dx as to why she has her back pain, bladder issues, numb > > > soles of feet. Why spend time going to doctors if the appointments are > > > going to be like this!! Very disgusted at this point. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 The Chiari Institute on Long Island, NY Re: Occult tethered cord Just curious... what is TCI? Amber > > Good morning, I am wondering if you all know of any doctors in the > > Northeast that dx occult tethered cords when the conus is in at normal > > level. Feel free to email me off list. My daughter was dx. at TCI in > > September, and yesterday had the horrible unprofessional experience of > > a doctor spending time in the appointment bashing TCI- big time. I do > > not doubt the good doctors at TCI, but there are insurances issues to > > deal with and she was hoping to find a doctor in-network that would > > concur with their dx of her problems. Not sure why doctors have to > > act so unprofessionally, this guy merely bashed TCI and then did NOT > > give her a dx as to why she has her back pain, bladder issues, numb > > soles of feet. Why spend time going to doctors if the appointments are > > going to be like this!! Very disgusted at this point. > > > Quote Link to comment Share on other sites More sharing options...
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