Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Hi everyone, I'm curious...would you say that TCS is often missed on MRI's? I know that with chiari malformation (type I) it is almost ALWAYS missed if it is a borderline case. I guess with TCS, there is no such thing as a " borderline " case....either it's tethered or it's not. But, would you say that it is also true of TCS that it can easily be missed by radiologists and neurologists on mri's? Also, I assume you guys (and gals :-) are very familiar with what TCS looks like on an mri. Well, I looked at several images online and am just not sure if I see anything similar on my own mri (from 2 yrs ago). Is anyone interested in taking a look and giving me an opinion? I'm off to NY this coming Wednesday for a consultation with my doctor about this. I'll keep you all posted... Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 In a message dated 2/19/2006 12:15:34 AM Eastern Standard Time, amandamariebaker@... writes: I'm curious...would you say that TCS is often missed on MRI's? I know that with chiari malformation (type I) it is almost ALWAYS missed if it is a borderline case. I guess with TCS, there is no such thing as a " borderline " case....either it's tethered or it's not. But, would you say that it is also true of TCS that it can easily be missed by radiologists and neurologists on mri's? I wouldn't say that it is OFTEN missed, but there are a category of people for whom the cord looks like it ends in the normal range, but are still tethered. The spinal cord can end normally between the top of L1 to the bottom of L2, but for someone whose cord SHOULD have been at top of L1, and it is at bottom of L2, it IS being pulled down low for that person, it just LOOKS normal because it is in the range of normal, and can be read as not tethered. At that point, you have to go on symptoms. This happened to the son of a friend of mine. His cord LOOKED normal level on MRI, but he had worsening bladder/bowel issues, and tightening of his heel cords and his calves/back of knee tendons. They ended up going in, and he was definitely tethered. Unfortunately for him, the damage to his legs was already done and didn't reverse, but his other symptoms stabilized at least. Connie Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5 (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula imperforate anus (repaired 5/00), single kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most beautiful smile ever) conni60640@..., _http://members.tripod.com/conni60640-ivil/_ (http://members.tripod.com/conni60640-ivil/) TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_ (http://health.groups.yahoo.com/group/LMC-TCS/) Congenital scoliosis support group _http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_ (http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/) S. Jersey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Hi, I'm Judy. Right after I was diagnosed they rushed me in for MRI of the head. What are the symptoms of Chiara? I have never had a dr that was familiar with TCS, so I have to check into everything myself. Any info would be appreciated. Also, I was told I would have to go to NYC if I needed more surgery. Would mind telling me the name of your dr? >From: Joffrexel@... >Reply-To: tetheredspinalcord >To: tetheredspinalcord >Subject: Re: how often missed on mri? >Date: Sun, 19 Feb 2006 01:52:36 EST > >, > It's interesting you are asking about this now. I just >had >two MRI's done this week. One was of my head and today was of my spine. I >wonder if my doctor is going to say what I already suspect, tethered cord. >As you >may or may not know I told people on the list, that I was supposed to have >the operation for the tethered cord, about five years ago, but I chose not >to >at the last moment. My symptoms have gotten worse, so I'm practically >looking >forward to the surgery. I also wonder if he is going to mention anything >about Chiari malformation. I was never directly told I had this, but as >I've >come to realize from reading about the symptoms on the list, I'm pretty >sure I >have it. If he confirms that I have it, will he suggest the operation for >that. I hope that it wasn't mentioned because it is borderline. I'm >getting older >and the last thing I need is to have more pain and be slowed down by >worsening symptoms of TCS. Anyway, it will be interesting to see what the >doctor in >NY says. By the way, I live in NYC, where are you going to see this >doctor? >What hospital? >P.S. It's going to be bleepin cold, so make sure you wear a few layers. > > Jeff - NYC > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 I don't know, but my husband had at least 6 lumbar MRIs and none of the over one dozen doctors who looked at them ever noticed it. That includes neurosurgeons and neurologists who were supposedly at the top of their field. We even went to the Hospital for Special Surgery in NYC. At The Chiari Institute they saw it immediately on even the oldest and poorest quality MRIs that we brought (they ordered new ones to be sure). how often missed on mri? Hi everyone, I'm curious...would you say that TCS is often missed on MRI's? I know that with chiari malformation (type I) it is almost ALWAYS missed if it is a borderline case. I guess with TCS, there is no such thing as a " borderline " case....either it's tethered or it's not. But, would you say that it is also true of TCS that it can easily be missed by radiologists and neurologists on mri's? Also, I assume you guys (and gals :-) are very familiar with what TCS looks like on an mri. Well, I looked at several images online and am just not sure if I see anything similar on my own mri (from 2 yrs ago). Is anyone interested in taking a look and giving me an opinion? I'm off to NY this coming Wednesday for a consultation with my doctor about this. I'll keep you all posted... Thanks, Not Medical Advice. We Are Not Doctors. Need help with the list? Email kathy@...,michelle@..., rick@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 was found muttering these words: I think it is difficult to spot TCS in retethering situation. The cord is already stretched out, so you can't use that as a clue. My retethering was spotted via a flip/flop MRI -- a series taken on my back then another taken while I was on my stomach. Gravity should cause the cord to move if it is not tethered. >>Hi everyone, >> >>I'm curious...would you say that TCS is often missed on MRI's? I know >>that with chiari malformation (type I) it is almost ALWAYS missed if >>it is a borderline case. I guess with TCS, there is no such thing as >>a " borderline " case....either it's tethered or it's not. But, would >>you say that it is also true of TCS that it can easily be missed by >>radiologists and neurologists on mri's? >> >>Also, I assume you guys (and gals :-) are very familiar with what TCS >>looks like on an mri. Well, I looked at several images online and am >>just not sure if I see anything similar on my own mri (from 2 yrs >>ago). Is anyone interested in taking a look and giving me an opinion? >> >>I'm off to NY this coming Wednesday for a consultation with my doctor >>about this. I'll keep you all posted... >> >>Thanks, >> >> >> >> >> >> >>Not Medical Advice. We Are Not Doctors. >>Need help with the list? Email kathy@...,michelle@..., rick@... >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 Good luck in NY! Is that Dr. Bolognese that the rest have talked about? I think the issue is often a matter of interpretation. On the more subtle cases (tight filum terminale) you could have many different interpretations depending on the radiologist, neurosurgeon or neurologist, etc. In the more obvious cases, you'd hope no one would miss it but like Dr. Yamada told me, the MRI is simply a tool to make the diagnosis in conjunction with the clinical data since TSC is a clinical diagnosis and there are even cases with supposed normal MRIs (very rare). AG how often missed on mri? Hi everyone, I'm curious...would you say that TCS is often missed on MRI's? I know that with chiari malformation (type I) it is almost ALWAYS missed if it is a borderline case. I guess with TCS, there is no such thing as a " borderline " case....either it's tethered or it's not. But, would you say that it is also true of TCS that it can easily be missed by radiologists and neurologists on mri's? Also, I assume you guys (and gals :-) are very familiar with what TCS looks like on an mri. Well, I looked at several images online and am just not sure if I see anything similar on my own mri (from 2 yrs ago). Is anyone interested in taking a look and giving me an opinion? I'm off to NY this coming Wednesday for a consultation with my doctor about this. I'll keep you all posted... Thanks, Not Medical Advice. We Are Not Doctors. Need help with the list? Email kathy@...,michelle@..., rick@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 That's cool, flip flop MRI, good idea. As far as other studies as you all might have heard...NCS/EMG can be normal or not, SSEP sometimes picks up data. It all boils down to having a good doctor with good listening and clinical skills that knows what to be alert about. Just keep asking questions for all of you out there! AG Re: how often missed on mri? was found muttering these words: I think it is difficult to spot TCS in retethering situation. The cord is already stretched out, so you can't use that as a clue. My retethering was spotted via a flip/flop MRI -- a series taken on my back then another taken while I was on my stomach. Gravity should cause the cord to move if it is not tethered. >>Hi everyone, >> >>I'm curious...would you say that TCS is often missed on MRI's? I know >>that with chiari malformation (type I) it is almost ALWAYS missed if >>it is a borderline case. I guess with TCS, there is no such thing as >>a " borderline " case....either it's tethered or it's not. But, would >>you say that it is also true of TCS that it can easily be missed by >>radiologists and neurologists on mri's? >> >>Also, I assume you guys (and gals :-) are very familiar with what TCS >>looks like on an mri. Well, I looked at several images online and am >>just not sure if I see anything similar on my own mri (from 2 yrs >>ago). Is anyone interested in taking a look and giving me an opinion? >> >>I'm off to NY this coming Wednesday for a consultation with my doctor >>about this. I'll keep you all posted... >> >>Thanks, >> >> >> >> >> >> >>Not Medical Advice. We Are Not Doctors. >>Need help with the list? Email kathy@...,michelle@..., rick@... >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 was found muttering these words: >>That's cool, flip flop MRI, good idea. >>As far as other studies as you all might have heard...NCS/EMG can be normal or not, SSEP sometimes picks up data. >>It all boils down to having a good doctor with good listening and clinical skills that knows what to be alert about. Yeah, I have a lot of confidence in this doctor. With diastematomyelia, multiple tetherings often rule the day -- but we are going to try a minimum of 4 days on my abdomen after surgery to allow the surgical area to heal. Even if scarring does take place, the spinal cord will not be lying on the column and hopefully this technique will work for others as well. My surgery is March 1! >> >>Just keep asking questions for all of you out there! >> >>AG >> >> Re: how often missed on mri? >> >> >> was found muttering these words: >> >> I think it is difficult to spot TCS in retethering situation. The cord is >> already stretched out, so you can't use that as a clue. >> >> My retethering was spotted via a flip/flop MRI -- a series taken on my back >> then another taken while I was on my stomach. Gravity should cause the >> cord to move if it is not tethered. >> >> >> >>Hi everyone, >> >> >> >>I'm curious...would you say that TCS is often missed on MRI's? I know >> >>that with chiari malformation (type I) it is almost ALWAYS missed if >> >>it is a borderline case. I guess with TCS, there is no such thing as >> >>a " borderline " case....either it's tethered or it's not. But, would >> >>you say that it is also true of TCS that it can easily be missed by >> >>radiologists and neurologists on mri's? >> >> >> >>Also, I assume you guys (and gals :-) are very familiar with what TCS >> >>looks like on an mri. Well, I looked at several images online and am >> >>just not sure if I see anything similar on my own mri (from 2 yrs >> >>ago). Is anyone interested in taking a look and giving me an opinion? >> >> >> >>I'm off to NY this coming Wednesday for a consultation with my doctor >> >>about this. I'll keep you all posted... >> >> >> >>Thanks, >> >> >> >> >> >> >> >> >> >> >> >> >> >>Not Medical Advice. We Are Not Doctors. >> >>Need help with the list? Email kathy@...,michelle@..., rick@... >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Wow, good luck. HOw do you feel now? Who is your doctor? AG Re: how often missed on mri? >> >> >> was found muttering these words: >> >> I think it is difficult to spot TCS in retethering situation. The cord is >> already stretched out, so you can't use that as a clue. >> >> My retethering was spotted via a flip/flop MRI -- a series taken on my back >> then another taken while I was on my stomach. Gravity should cause the >> cord to move if it is not tethered. >> >> >> >>Hi everyone, >> >> >> >>I'm curious...would you say that TCS is often missed on MRI's? I know >> >>that with chiari malformation (type I) it is almost ALWAYS missed if >> >>it is a borderline case. I guess with TCS, there is no such thing as >> >>a " borderline " case....either it's tethered or it's not. But, would >> >>you say that it is also true of TCS that it can easily be missed by >> >>radiologists and neurologists on mri's? >> >> >> >>Also, I assume you guys (and gals :-) are very familiar with what TCS >> >>looks like on an mri. Well, I looked at several images online and am >> >>just not sure if I see anything similar on my own mri (from 2 yrs >> >>ago). Is anyone interested in taking a look and giving me an opinion? >> >> >> >>I'm off to NY this coming Wednesday for a consultation with my doctor >> >>about this. I'll keep you all posted... >> >> >> >>Thanks, >> >> >> >> >> >> >> >> >> >> >> >> >> >>Not Medical Advice. We Are Not Doctors. >> >>Need help with the list? Email kathy@...,michelle@..., rick@... >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 I wouldn't say it was a common problem, but it does happen. What happens is that the Dr. looking at the Scan just doesn't see it, because that's not what they're looking for, and that Dr. might not know much about it, so it doesn't get picked up. I would say it's similar to the situations as to why Chiari doesn't get picked up all the time. Hope that made sense. Me Nebraska, USA mymocha@... would you say that TCS is often missed on MRI's? I know > that with chiari malformation (type I) it is almost ALWAYS missed if > it is a borderline case. I guess with TCS, there is no such thing as > a " borderline " case....either it's tethered or it's not. But, would > you say that it is also true of TCS that it can easily be missed by > radiologists and neurologists on mri's? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 I don't think it's just because the Cord is already stretched out, although that could be one of the factors. Another is that it will always look Tethered, in reality, because it is (because of Scar Tissue), and they need to use a Scanning Tool, such as a CINE MRI, to see " how " Tethered things are, how the flow is.......etc. Me Nebraska, USA mymocha@... > > I think it is difficult to spot TCS in retethering situation. The cord is > already stretched out, so you can't use that as a clue. > > Quote Link to comment Share on other sites More sharing options...
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