Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Hi, My name is Donna and I am 37 years old. I was diagnosed with a tethered cord this past November. I have been asymtomatic up until this past summer. I did a lot of bicycling and didn't think anything was wrong with my legs except that they were just sore from biking. I also didn't think anything of it when co-workers started noticing that I was limping, because I didn't hurt and really didn't notice the limp myself. I thought I better look into the limping issue after the biking season was through and family members noticed that I was still limping. I just thought that my back was out of place causing me to limp, so I started with a chiropractor. The chiropractor had me see a general practitioner before starting treatment. The GP had me do all sorts of things. When he asked me to stand on my tippy toes, I was shocked when I couldn't even get up on my toes. The GP referred me back to my family doctor. My family doctor ordered a MRI. She saw evidence of a tethered cord and " fatty infiltration " in my lower back. She referred me to a neurologist, who looked at my report and immediately sent me to a neurosergeon. The neurosergeon wasn't confident that I truely had a tethered cord and had me do physical therapy after doing an EMG on my legs (that hurt like hell). The PT helped with the tight muscles, but didn't help with the limp. He then ordered a meylogram. The meylogram, according to him, conclusively shows a tethered cord. He recommends surgery. My last appointment with the neurosergeon was not very productive as I was suffering with a headache from the meylogram. The only thing I got out of that meeting was that I had a tethered cord and need surgery. My next appointment is in February and I was hoping you all could guide me on what questions I should be asking. Also, I want to get a second opinion and was wondering if any of you know of a doctor in the Omaha, Nebraska area that specializes in this. Thanks in advance for any advice, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Donna: You might have to travel to get a great TSC doctor- P. Falci M.D. is the Chief Neurosurgical Consultant for Craig Hospital-click on the link below http://www.craighospital.org/SCI/rehabNeurosurgery.asp With that said-- I live in NJ and my Lite speed bike has been dusty since my last and final surgery done by Dr Barth Green in Miami. (Goggle him) I always suggest never to have surgery-----you will see many different opinions, and everybody reacts different but the net is that the body will always create scar tissue and after 2 years you will be worse then before----keep biking, exercise and if need be medication- ---5 surgeries over 20 years----trust me avoid at all cost > > Hi, > > My name is Donna and I am 37 years old. I was diagnosed with a > tethered cord this past November. I have been asymtomatic up until > this past summer. I did a lot of bicycling and didn't think anything > was wrong with my legs except that they were just sore from biking. > I also didn't think anything of it when co-workers started noticing > that I was limping, because I didn't hurt and really didn't notice > the limp myself. I thought I better look into the limping issue > after the biking season was through and family members noticed that I > was still limping. > > I just thought that my back was out of place causing me to limp, so I > started with a chiropractor. The chiropractor had me see a general > practitioner before starting treatment. The GP had me do all sorts > of things. When he asked me to stand on my tippy toes, I was shocked > when I couldn't even get up on my toes. The GP referred me back to > my family doctor. My family doctor ordered a MRI. She saw evidence > of a tethered cord and " fatty infiltration " in my lower back. She > referred me to a neurologist, who looked at my report and immediately > sent me to a neurosergeon. The neurosergeon wasn't confident that I > truely had a tethered cord and had me do physical therapy after doing > an EMG on my legs (that hurt like hell). The PT helped with the > tight muscles, but didn't help with the limp. He then ordered a > meylogram. The meylogram, according to him, conclusively shows a > tethered cord. He recommends surgery. > > My last appointment with the neurosergeon was not very productive as > I was suffering with a headache from the meylogram. The only thing I > got out of that meeting was that I had a tethered cord and need > surgery. My next appointment is in February and I was hoping you all > could guide me on what questions I should be asking. Also, I want to > get a second opinion and was wondering if any of you know of a doctor > in the Omaha, Nebraska area that specializes in this. > > Thanks in advance for any advice, > > Donna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Hi Jenn - I am sorry your surgeries were unsuccessful. I am just curious as to what type of tethered cord you originally had? I have a tight filum and have been told that is much easier to surgically treat than other types? Thanks, Dee To: tetheredspinalcord@...: jlbobin@...: Sun, 20 Jan 2008 03:13:20 -0500Subject: Re: Re: Newly Diagnosed bmcateer (I didn't see your signature at the end of your message),I couldn't agree with you more. I have had 3 surgeries and not one of themmade me better. Scar tissue developed and required a second. A syrinxdeveloped and I required a third. The only bike I'm using now is a handcycle!I have heard good things about Miami and have recommended it for a long timeas an option (they house the Miami Project, afterall). But I have neverknown anyone who actually had their surgery there. How was the facility? Iguess you thought it was good enough to recommend. Thanks if you're willingto share your experience.JennOn Jan 19, 2008 8:23 PM, bmcateer wrote:> Donna:>> You might have to travel to get a great TSC doctor- P. Falci> M.D. is the Chief Neurosurgical Consultant for Craig Hospital-click> on the link below>> http://www.craighospital.org/SCI/rehabNeurosurgery.asp>> With that said-->> I live in NJ and my Lite speed bike has been dusty since my last> and final surgery done by Dr Barth Green in Miami. (Goggle him) I> always suggest never to have surgery-----you will see many different> opinions, and everybody reacts different but the net is that the> body will always create scar tissue and after 2 years you will be> worse then before----keep biking, exercise and if need be medication-> ---5 surgeries over 20 years----trust me avoid at all cost>> > >> > Hi,> >> > My name is Donna and I am 37 years old. I was diagnosed with a> > tethered cord this past November. I have been asymtomatic up> until> > this past summer. I did a lot of bicycling and didn't think> anything> > was wrong with my legs except that they were just sore from> biking.> > I also didn't think anything of it when co-workers started> noticing> > that I was limping, because I didn't hurt and really didn't notice> > the limp myself. I thought I better look into the limping issue> > after the biking season was through and family members noticed> that I> > was still limping.> >> > I just thought that my back was out of place causing me to limp,> so I> > started with a chiropractor. The chiropractor had me see a> general> > practitioner before starting treatment. The GP had me do all> sorts> > of things. When he asked me to stand on my tippy toes, I was> shocked> > when I couldn't even get up on my toes. The GP referred me back> to> > my family doctor. My family doctor ordered a MRI. She saw> evidence> > of a tethered cord and " fatty infiltration " in my lower back. She> > referred me to a neurologist, who looked at my report and> immediately> > sent me to a neurosergeon. The neurosergeon wasn't confident that> I> > truely had a tethered cord and had me do physical therapy after> doing> > an EMG on my legs (that hurt like hell). The PT helped with the> > tight muscles, but didn't help with the limp. He then ordered a> > meylogram. The meylogram, according to him, conclusively shows a> > tethered cord. He recommends surgery.> >> > My last appointment with the neurosergeon was not very productive> as> > I was suffering with a headache from the meylogram. The only> thing I> > got out of that meeting was that I had a tethered cord and need> > surgery. My next appointment is in February and I was hoping you> all> > could guide me on what questions I should be asking. Also, I want> to> > get a second opinion and was wondering if any of you know of a> doctor> > in the Omaha, Nebraska area that specializes in this.> >> > Thanks in advance for any advice,> >> > Donna> >>> >[Non-text portions of this message have been removed] _________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Jenn, Thanks for all the good information! Yes, I used to be able to stand on my tippy toes with no problem, that is why I was surprised that I couldn't do it. I have lost some calve muscle function in both my legs, with my left suffering more loss than my right. The loss occured over the summer, while I was doing some hard cycling. I thought that my legs would recover from the cycling once the season was over. I didn't realize that I had lost any function until I went to the doctor and he did some muscle testing. I would say that my progression has stablized. The only pain I have is when I'm on my feet for long periods of time. I don't seem to have any other symptoms related to TSC. > > > Hi, > > > > My name is Donna and I am 37 years old. I was diagnosed with a > > tethered cord this past November. I have been asymtomatic up until > > this past summer. I did a lot of bicycling and didn't think anything > > was wrong with my legs except that they were just sore from biking. > > I also didn't think anything of it when co-workers started noticing > > that I was limping, because I didn't hurt and really didn't notice > > the limp myself. I thought I better look into the limping issue > > after the biking season was through and family members noticed that I > > was still limping. > > > > I just thought that my back was out of place causing me to limp, so I > > started with a chiropractor. The chiropractor had me see a general > > practitioner before starting treatment. The GP had me do all sorts > > of things. When he asked me to stand on my tippy toes, I was shocked > > when I couldn't even get up on my toes. The GP referred me back to > > my family doctor. My family doctor ordered a MRI. She saw evidence > > of a tethered cord and " fatty infiltration " in my lower back. She > > referred me to a neurologist, who looked at my report and immediately > > sent me to a neurosergeon. The neurosergeon wasn't confident that I > > truely had a tethered cord and had me do physical therapy after doing > > an EMG on my legs (that hurt like hell). The PT helped with the > > tight muscles, but didn't help with the limp. He then ordered a > > meylogram. The meylogram, according to him, conclusively shows a > > tethered cord. He recommends surgery. > > > > My last appointment with the neurosergeon was not very productive as > > I was suffering with a headache from the meylogram. The only thing I > > got out of that meeting was that I had a tethered cord and need > > surgery. My next appointment is in February and I was hoping you all > > could guide me on what questions I should be asking. Also, I want to > > get a second opinion and was wondering if any of you know of a doctor > > in the Omaha, Nebraska area that specializes in this. > > > > Thanks in advance for any advice, > > > > Donna > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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