Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 Yes, I've had a CT/Myelogram before. It wasn't too bad. What are your concerns? > > Just wondering if anyone else has had a CT Scan w/a myleogram? I have > a leak again and the new Neuro wants to do this test. I don't want to > do it. Isn't there any other way they can find the leak? I've had 4 > MRI's but that only shows the fluid collection, not actually where the > leak is. This new neuro if he does the surgery has a plastic surgeon > also help him. The plastic surgeon takes my back muscles and bring > them towards my spine to further strengthen the area where the leak > is. Has anyone ever heard of that?? > - S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 I guess I just don't like the fact that a needle with dye is going into my spine and CSF. Then all the risks about what if the dye gets into your head? I had a really bad experience with an MRI and the dye with my other leak. So, now I guess I am a little gun shy. Subject: Re: CT Scan w/Myleogram To: tetheredspinalcord Date: Thursday, July 24, 2008, 7:49 PM Yes, I've had a CT/Myelogram before. It wasn't too bad. What are your concerns? > > Just wondering if anyone else has had a CT Scan w/a myleogram? I have > a leak again and the new Neuro wants to do this test. I don't want to > do it. Isn't there any other way they can find the leak? I've had 4 > MRI's but that only shows the fluid collection, not actually where the > leak is. This new neuro if he does the surgery has a plastic surgeon > also help him. The plastic surgeon takes my back muscles and bring > them towards my spine to further strengthen the area where the leak > is. Has anyone ever heard of that?? > - S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 , has had 4 Myleograms. Two were done going in the C1 C2 area. The other 2 went in the Lumbar area, and caused a huge leak. Tommi www.caringbridge.org/visit/amandapeters From: shovels_without_ shoes <snaumannhiwaay (DOT) net> Subject: Re: CT Scan w/Myleogram To: tetheredspinalcord@ yahoogroups. com Date: Thursday, July 24, 2008, 7:49 PM Yes, I've had a CT/Myelogram before. It wasn't too bad. What are your concerns? > > Just wondering if anyone else has had a CT Scan w/a myleogram? I have > a leak again and the new Neuro wants to do this test. I don't want to > do it. Isn't there any other way they can find the leak? I've had 4 > MRI's but that only shows the fluid collection, not actually where the > leak is. This new neuro if he does the surgery has a plastic surgeon > also help him. The plastic surgeon takes my back muscles and bring > them towards my spine to further strengthen the area where the leak > is. Has anyone ever heard of that?? > - S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 Tommi - That is what I'm afraid of. My daughter is freaking out enough about me having to have another surgery. Muchless having to worry about me not coming home from another test because I can't stand up due to another leak. I just don't like this idea of sticking a long needle into my spine. They said they can knock me out but then I get more freaked out thinking what if something happens and the dye gets to my head and I have a seizure?? Ugh!!! From: shovels_without_ shoes <snaumannhiwaay (DOT) net> Subject: Re: CT Scan w/Myleogram To: tetheredspinalcord@ yahoogroups. com Date: Thursday, July 24, 2008, 7:49 PM Yes, I've had a CT/Myelogram before. It wasn't too bad. What are your concerns? > > Just wondering if anyone else has had a CT Scan w/a myleogram? I have > a leak again and the new Neuro wants to do this test. I don't want to > do it. Isn't there any other way they can find the leak? I've had 4 > MRI's but that only shows the fluid collection, not actually where the > leak is. This new neuro if he does the surgery has a plastic surgeon > also help him. The plastic surgeon takes my back muscles and bring > them towards my spine to further strengthen the area where the leak > is. Has anyone ever heard of that?? > - S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2008 Report Share Posted July 27, 2008 Im confused, if hey are putting it in your spinal cord, how could it not get to your head? Doesn't the spinal cord fluid circulate up through the brain and back down again? I have had brain MRI's with dye and my only complication was that it seemed to " irritate " my central nervous system a bit. I actually went on steroids before to help that some. I would be concerned about a needle in my back because it can cause arachnoiditis. Before I was properly diagnosed when they didnt realize I had TC they tried steroid injections in my lumbar area....I think they injected them into my cord or something because I had a really bad reaction and wound up in ER for hours. I would never get steroid injections again, they also caused a lot of scar tissue as well. From: shovels_without_ shoes <snaumannhiwaay (DOT) net> Subject: Re: CT Scan w/Myleogram To: tetheredspinalcord@ yahoogroups. com Date: Thursday, July 24, 2008, 7:49 PM Yes, I've had a CT/Myelogram before. It wasn't too bad. What are your concerns? > > Just wondering if anyone else has had a CT Scan w/a myleogram? I have > a leak again and the new Neuro wants to do this test. I don't want to > do it. Isn't there any other way they can find the leak? I've had 4 > MRI's but that only shows the fluid collection, not actually where the > leak is. This new neuro if he does the surgery has a plastic surgeon > also help him. The plastic surgeon takes my back muscles and bring > them towards my spine to further strengthen the area where the leak > is. Has anyone ever heard of that?? > - S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2008 Report Share Posted July 27, 2008 During the CT/myleogram I have to keep my head in the " looking up " position during the test so the dye won't go to my head...so they say??? Just keeping it in the position for 20 min. kills me I honestly can't imagine keeping it that way for an hour. Ugh! From: shovels_without_ shoes <snaumannhiwaay (DOT) net> Subject: Re: CT Scan w/Myleogram To: tetheredspinalcord@ yahoogroups. com Date: Thursday, July 24, 2008, 7:49 PM Yes, I've had a CT/Myelogram before. It wasn't too bad. What are your concerns? > > Just wondering if anyone else has had a CT Scan w/a myleogram? I have > a leak again and the new Neuro wants to do this test. I don't want to > do it. Isn't there any other way they can find the leak? I've had 4 > MRI's but that only shows the fluid collection, not actually where the > leak is. This new neuro if he does the surgery has a plastic surgeon > also help him. The plastic surgeon takes my back muscles and bring > them towards my spine to further strengthen the area where the leak > is. Has anyone ever heard of that?? > - S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2008 Report Share Posted July 27, 2008 Also, the dye can remain in your spinal fluid and cause a build up...plus, my last release surgery was also to remove a dermoid tumor. The NS said the tumor could have been caused when they did all the myleograms and a skin cell was pushed in by the needle...then they grow and become quite painful. Re: CT Scan w/Myleogram To: tetheredspinalcord@ yahoogroups. com Date: Thursday, July 24, 2008, 7:49 PM Yes, I've had a CT/Myelogram before. It wasn't too bad. What are your concerns? > > Just wondering if anyone else has had a CT Scan w/a myleogram? I have > a leak again and the new Neuro wants to do this test. I don't want to > do it. Isn't there any other way they can find the leak? I've had 4 > MRI's but that only shows the fluid collection, not actually where the > leak is. This new neuro if he does the surgery has a plastic surgeon > also help him. The plastic surgeon takes my back muscles and bring > them towards my spine to further strengthen the area where the leak > is. Has anyone ever heard of that?? > - S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 I had a Myleogram/CT Scan done last November. The procedure itself wasn't that bad. But by the time I got home after they released me, I started getting a headache (this was on a Thursday). Friday, I spent most of the day in bed, dealing with the most horrific headache I have ever experienced. I went to the emergency room on Saturday; they did a " blood patch " to fix the leak. It worked until Monday, the headache returned. My Doctor's appointment was Tuesday, they sent me back to the hospital for another " blood patch. " The second " blood patch " worked, I had immediate relief. To top it all off, I probably didn't need to have this procedure. I am still trying to confirm whether or not I really have a tethered cord. My second & third opinions believe I have a rare form of muscular dystrophy. I have to have a muscle biopsy done to confirm this diagnosis. > > > > Just wondering if anyone else has had a CT Scan w/a myleogram? I have > > a leak again and the new Neuro wants to do this test. I don't want to > > do it. Isn't there any other way they can find the leak? I've had 4 > > MRI's but that only shows the fluid collection, not actually where the > > leak is. This new neuro if he does the surgery has a plastic surgeon > > also help him. The plastic surgeon takes my back muscles and bring > > them towards my spine to further strengthen the area where the leak > > is. Has anyone ever heard of that?? > > - S. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 Yes, I have........3 actually. Sometimes it is necessary, but should be used as a last resort. I really didn't want to do it either, but I had to.........tell them your fears, any good Dr. will give you something to relax you, and numb the area on your back. Even though I wouldn't be surpised if you wanted to be, don't expect them to knock you out for it, they shouldn't do it, it isn't wise. You need to be aware during the procedure. If you've had it done already, since this is a late response, I hope all went well, and answers were found.........if you haven't had it done yet......good luck, I know what it is like. Brande mymocha@... > Just wondering if anyone else has had a CT Scan w/a myleogram? I have > a leak again and the new Neuro wants to do this test. I don't want to > do it. Isn't there any other way they can find the leak? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2008 Report Share Posted October 17, 2008 Neither do I.........it does put fear into you, which I think is normal. If they do it right, they will have you on a Tilt Table to prevent the Dye from doing that. Somtimes things need to be done, even though there is fear. I do totally understand about being " Gun Shy " !! I do feel for you. Hope all is going well now. Brande mymocha@... I guess I just don't like the fact that a needle with dye is going into my spine and CSF. Then all the risks about what if the dye gets into your head? I had a really bad experience with an MRI and the dye with my other leak. So, now I guess I am a little gun shy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2008 Report Share Posted October 17, 2008 During a Myelogram, the Needle doesn't or shouldn't go into your Spinal Cord. It is suposse to go into the space before it. Sorry, I can't remember the name right off the bat. Yes, that is how the CSF circulates. They don't really use Oil Based Dyes now during a Myelogram........which is what caused alot of problems with them before. Brande mymocha@... Im confused, if hey are putting it in your spinal cord, how could it not get to your head? Doesn't the spinal cord fluid circulate up through the brain and back down again? I have had brain MRI's with dye and my only complication was that it seemed to " irritate " my central nervous system a bit. I actually went on steroids before to help that some. I would be concerned about a needle in my back because it can cause arachnoiditis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2008 Report Share Posted October 18, 2008 I was given conscious sedation with all of my myelograms due to the extreme pain I experienced with the epidural cortisone injection. With conscious sedation, you are awake and can follow commands, but you don't remember the procedure (when done correctly). The MD wrote the orders for my first myelogram with sedation. When I showed up and made it to the procedure room, I kept wondering when my sedation was coming. Then the MD with a HORRIBLE bedside manner said that he does not use sedation and that any MD that did was committing malpractice because you have to be able to move for them and be aware so that you can answer their questions. I asked him why he did not 1) contact the ordering MD and question his order, and/or 2) tell me before going into the procedure room during the consultation with him before the procedure. He didn't have a good answer. He went ahead and tried, but I kept hyperventilating and twitching my foot (when I could) - that is what I do in severe pain. So he aborted and I went to a different hospital that was happy to follow my ordering MDs orders and I didn't have a problem with either myelogram I've had. It's something to ask about. Jenn From: tetheredspinalcord [mailto:tetheredspinalcord ] On Behalf Of Brande Sent: Thursday, October 16, 2008 3:45 PM To: tetheredspinalcord Subject: Re: CT Scan w/Myleogram <<<SNIP>> any good Dr. will give you something to relax you, and numb the area on your back. Even though I wouldn't be surpised if you wanted to be, don't expect them to knock you out for it, they shouldn't do it, it isn't wise. You need to be aware during the procedure. <<SNIP>> Brande mymocha@... <mailto:mymocha%40charter.net> > Just wondering if anyone else has had a CT Scan w/a myleogram? I have > a leak again and the new Neuro wants to do this test. I don't want to > do it. Isn't there any other way they can find the leak? Quote Link to comment Share on other sites More sharing options...
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