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Thread: Cisternogram & Myelogram- Any success finding your leak with these tests?

  1. #1

    Question Cisternogram & Myelogram- Any success finding your leak with these tests?

    I am scheduled for a cisternogram and myelogram at the same time. One puncture, two dyes, two tests. Smart approach by my neuro.
    Has anyone successfully located their leak with either of these tests? Also, any tips or advice for before, during or post procedure?

    Hoping everyone is finding a way to cope with this debilitating problem. I find that there are good days and bad days. It helps very much to have this forum where people understand the enormity of this situation. It is difficult for family and friends to imagine this pain.

  2. #2
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    Default CT Myelo

    Lumbarlady,

    Yes. The neuroradiologist that did my CT Myelo saw some evidence of my leak on a spinal MRI that had been previously done. With the CT Myelo, the neuro located my leak at T9-10. The images taken on the day of the CT Myelo did not show the leak. The neuro had me come back the next day for delayed imaging without any needle and it was the delayed images that showed the leak, not the images taken when the first day when the needle was in. On that second day, my back was a little sore from the needle but it wasn't too painful. I did not have a cisternogram.

    For the procedure, I took a Diazepam, which is the generic Valium. It helped reduce my anxiety.

    Good luck with your procedure.

    LeakingnHissinginPotomac

    Quote Originally Posted by Lumbarlady View Post
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    I am scheduled for a cisternogram and myelogram at the same time. One puncture, two dyes, two tests. Smart approach by my neuro.
    Has anyone successfully located their leak with either of these tests? Also, any tips or advice for before, during or post procedure?

    Hoping everyone is finding a way to cope with this debilitating problem. I find that there are good days and bad days. It helps very much to have this forum where people understand the enormity of this situation. It is difficult for family and friends to imagine this pain.

  3. #3

    Default

    Dear LeakingnHissinginPotomac,

    Thanks so much letting me know about your experience. It sounds like it is not as painful as a bloodpatch. That took me days to recover from. I'm so glad they were able to locate your leak. I have a slow leak and perhaps that is the reason my recent surgery was unable to locate the leak. The dye needs time to get there. I hope that you have been fixed and are pain-free now. My headache, stiff neck and pain between my shoulder blades is constant. It immediately gets better as soon as I am horizontal. We can all be hopeful. Thanks again.

  4. #4
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    Default

    I have a slow leak too. I was very happy that my leak was located. But the two blood patches I've had did not fix me. I still have headaches and tinnitus. The headaches are reduced when I am horizontal; not so the tinnitus.

    For me the pain from the procedures varied based on the specific location where the needle was inserted. For my CT Myelo and my second blood patch, it is my understanding that the neuro located the needle through the lumbar area, which is relatively large and easy to access. The neuro only needed to adjust the needle several times to locate it at the specific spot. The first blood patch was in the thoracic area, which I am told is relatively small and difficult to access. It took many adjustments to locate the needle at the specific spot in the thoracic area. So for me the amount of pain from the procedure itself was a matter of the number of needle adjustments that were required. Also, I did not take a pain med for the CT Myelo and the first blood patch but did for the second blood patch. I should mention that my blood patches were done by the neuro under CT guidance.

    I had a strong reaction to my second blood patch, which involved a higher volume of blood than my first (20 cc's vs 10 cc's). A couple of days after the procedure, I had soreness in my back and difficulty walking, which went away after a day or so. Two days after the second blood patch procedure, I had excruciating headaches that lasted for a couple of days. Based on posts and an article that I read, I believe that this was the result of the higher volume of blood that was injected. I have been told that blood is an irritant and can cause some real pain as it is being absorbed. I don't think this applies to the CT Myelo since blood is not injected for that procedure.

    Let us know how things go with your combined cisternogram and myelogram procedure.

    LeakingnHissinginPotomac

  5. #5

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    It has been over a month now and I will finally have the cisternogram and myelogram next week. I have been basically laying flat all this time. If I start to do to much by running errands or chores, the next day I cannot move due to stiff neck, headache, burning between shoulder blades and nausea. My neurologist at Mount Sinai is terrific. He spent many hours, if not days with the nuclear and radiology departments and my insurance company to get this done at the same time. One lumbar puncture, two dyes, two days of scans. He said it is best for the patient; to combine these-need to keep additional holes in the dura to a minimum and it will offer the best resolution. I will post the results. Wishing anyone who has this horrible condition peace and pain-free moments or positive outcomes. It would be great to hear more success stories on this forum.

  6. #6

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    Good luck - Do you know which 2 dyes you are getting? I think there may actually be 3 different types. 1 for nuclear, 1 for CT, and one for MRIs. Will they be imaging your spine and head? (Or maybe your doctors think that this is most likely a spinal leak?) Will they be doing a pressure check? If your pressure is very low, is there any plan to add fake CSF to bring your volume up? I am glad you get relief by laying flat. Good luck!
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  7. #7

    Default

    Thank you very much. I believe one dye is for the nuclear test and the other for the CT. They will be imaging both head and spine over a two-day period. Not sure if they will do a pressure check. Last pressure was a "9". Had a bloodpatch in July with no positive result. I had endoscopic sinus surgery (ESS) in July with Intrathecal fluorescein dye and they were unable to locate leak in sinuses. I do have an intermittent very salty drip from nose and down back of throat, so it may very well be in my head just not in my sinus area.

  8. #8
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    Lumbarlady --

    I hope you are still monitoring this thread, as I have some questions, if you don't mind. I had a spinal leak caused by a botched cervical epidural in September, 2008, and have been trying for relief from multiple daily spinal headaches since then. 3 separate BPs were done in 2008, actually making me much worse.

    The headaches are now increasing in frequency and intensity, so I am trying a neurosurgeon in my area, Long Island, to get options. Duke wants to do fibrin glue patching rather than BPs again, but I am reluctant to put my poor body thru that trauma again. However, your game plan sounds better --- perhaps 2 days of imaging, and some solid bed rest will relieve these ridiculous headaches!
    Where did you have your testing done? I like the idea of 2 days of imaging - it makes so much sense.

    I had an LP and myelogram in December, 2010 at Duke University, NC, and BP at 3 leak sites, with no change in my headaches. I was told to get up immediately after the procedures, and to resume my activities - which caused immediate motion sickness and pressure headaches (as prior to the BPs). I flew home to NY 3 days later, and I was actually worse off for the 4 months following the procedures.

    I agree with your comment on how difficult it is for our family and friends. After 3 years, my loved ones alternately try to forget or agonize over my situation - and both reactions are upsetting! It's just very frustrating to not have answers, so I thank God for this site and support from fellow sufferers.

    I wish everyone who reads this a speedy resolution to their problems --- Good luck.
    Best -
    Marianne
    Last edited by paradice15; 10-06-2011 at 01:34 PM.

  9. #9

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    Hi Marianne -
    The 2 days of imaging is done when nuclear imaging is ordered. This technique is considered good at diagnosing small leaks, but poor at locating the exact leak location. Rob was offered this testing right at North Shore University Hospital. I am sure you could request this anywhere. Normally the 2 days is not done at the hospital the whole time. Patients go home and come back for imaging.
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  10. #10

    Default

    Dear Marianne,

    Of course I am still monitoring this forum. It is all I have at the moment. I was surprised to read that they wanted you to get up after your bloodpatch. I've had several and always needed to lay flat for 24 hours.

    I wish I had good news to report, but unfortunately, I have hit a dead-end. A leak was not located on the myelogram or cisternogram. Two very difficult days back and forth to Mount Sinai. The myelogram was only done on the first day. I was scanned for two days with the cisternogram. Blood was taken every few hours and pledgets were placed for 24 hours (not fun) Both of my doctors were extremely surprised and upset with the test results and are referring me to Dr. Schievink at Cedars Sinai. I asked the neuro-radiologist if he had experience with leaks during the myelogram and he said he has never seen one. This kind of problem is even rare for even some teaching hospitals. I am hoping once Dr. Schievink reviews my scans, he will be able to locate the leak. After all, how would one find a leak if they are not experienced and don't know what they are looking for? My headache and neck and spine pain (between shoulder blades) is extremely bad and I have trouble functioning. I have good moments, not days just moments lately. I spend most of the day horizontal. My husband is not very supportive about the idea of going to Cedars Sinai because he is so frustrated with the situation. I told him I will go to the end of the earth if I need to to feel normal and pain-free again if I have to! I can't live life laying down.

    Marianne, you may want to consult with Dr. Schievink. It may be worth a call at least.

    I pray that everyone will be able to locate their leaks and be pain-free again. If you can't locate it, you can't really fix it.

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