CT Myelogram next week

[eman]

Hi guys,

I've read a little bit about this, but I thought I read somewhere that they scan you at intervals over a few hours. Is this not the same test? I'm wondering if I should request the Cisternogram as well. Can they do them both at once? I will definitely take the advice on other posts and try to move around to get the dye moving. Any tips would be greatly appreciated. Thanks so much,

eman

[waterlover]

Hi eman,

Good luck with your test. Yes, you can have both the cisternography and ct/myelogram in the same lumbar puncture.....one less needle hole.....but you will be busy shuffling from dept. to dept. This method was done to me.

The Ct/myelogram takes thinly sliced pictures of your spine trying to find the leak. And yes moving around between pictures, even doing valsavalvar maneuvers or whatever works to promote the leak may help. The cisternogam is a nuclear medicine scan and ideally should be performed over 24 hours. Different department to take these pictures. My cisternography was done only over 6 hours and then stopped because since no tracer was found in my bladder they believed there was no leak (this was as I could barely stand up). The real reason they stopped was because it was July 3rd and they had a skeleton crew and didn't want to hospitalize me overnight or have come back on July 4th, the holiday. One of my neurologists later told me they should have continued the test at least over 12 hours. This test will not pinpoit the leak site but can confirm an area that is leaking.

Also, just regarding the actual administration of the lumbar puncture, although this might seem obvious, but because communication amongst hospital personal is not always what it should be, perhaps just reinforce to your doctors that for whatever reason you may not be healing these holes quickly, and so for them to follow all of the optimum techniques regarding needle bevel, size etc. to minimize the hole and enable it to heal quickly. Also, if you have Ehlers-Danlos Syndrome or one of the known connective tissue conditions they should take all precautions to minimize the hole. My experience is that neuroradiologists seem to be the most proficient at performing these lumbar punctures and reading the results. Just be sure it is someone who has performed a lot. I've only had two ct/myelogram and one cisternography....so I suspect others on here with more experience can add more. Best of luck --Waterlover

[horizontal handmaiden]

A cheery Thursday to you, eman!

I know that Dr. Schievink conducts some CT/Myelograms using four-hour delayed imaging. After the LP and the initial myelogram imaging followed by CT (scans), you are sent to another floor where you lie in bed, sit on bed or stand up and walk around that particular section -- all this to keep that dye moving around to enhance imaging results -- and then you return for a final round of scans. As waterlover pointed out, the cisternogram uses the same LP to send in the nuclear potion (!), with the Nuclear Medicine imaging repeated in various short sessions over, say a 24-hour period.

And please don't be discouraged if this particular imaging -- or brain or spinal MRIs for that matter -- are deemed negative or inconclusive. As you have experienced, your orthostatic symptoms have been present despite supposedly negative imaging results; this contradiction is not always understood by every neuroradiologist and every neurosurgeon (in my experience), but Dr. S. is one of those that has witnessed it, many times over. eman, If you choose to submit yourself to further imaging, I hope you and your body will be tended to kindly and with dignity.

h.h.

[guineapig]

eman,

tell me, did Wouter counsel you to go ahead with the LP? i am hard pressed to understand with my remaining three neurons what possibly could be gained by undergoing a ct myelogram when your original symptoms were caused by an LP to begin with? waterlover well knows the cost of an LP. and we have been listening to her babble on about it almost as long as i can remember; which is a bit less than i have babbled on about my own complaints and special soreness: the evilness of doctors.
i just don't get it! am i missing something? seems rather intuitive that if your symptoms came from a certain procedure, you don't repeat the same procedure to find out if you can find the cause of the same symptoms! i've confused myself :eek: , somebody, waterlover, please help me! oh, no, it's ok, i have only just wet myself, i mean, i just leaked a little more cs fluid. well, plenty more where that came from. thank God my kindneys still work, oh, i mean my choroid plexus; ahh phoeey, same thing.
guineapig

[Concerned Gal]

Guinea,

I can understand your frustration but on the other hand, I can see what could be gained through another myelogram. If someone didn't heal after the last one, it can be assumed that they have a "healing' problem or a weakness in the dura, therefore you could assume that there could/will be other weaknesses (leak sites) which could be detected by myelogram and possibly surgically repaired. I can hear what you are saying, but having been so sick that you would try anything as a last resort to get some relief I can see why someone would go there again to try and move forward when it feels like you can't go anymore backward.

But again, totally see where you are coming from.

[eman]

Yes,

we did the Myelogram. It found a leak, but probably the leak caused by the Meylogram. Concerned Gal, I see it both ways. I don't know exactly what's going on, but I do have a fact timeline. I had the LP, 2 blood patches that worked for 24 hours each. After that 2nd blood patch, my left side of my head started having probs. Either that LP was still leaking, or I popped a spontaneous leak at that instant. My logic would lead me to the LP causing the problem being that I had it two days prior. 5 mo later, my symptoms resolved. 8 mo later, a flu brought them back, pretty much the same symptoms as before, so I'm also assuming I'm having the same slow leak from the LP. I would think that a spontaneous leak would bring on some very very different symptoms, maybe much more intense. The more and more I think about it, I start getting lost. Does anyone know of any stats on the Fibrin Glue vs Surgery? Dr Louie told me that when your MRI findings are negative, blood patches only have a 10% success rate, which is humbling. I'm praying that surgery will be the answer. If my LP is still leaking, this can be fixed by surgery, right? I'm also assuming that when a surgeon opens you up, they can see the leak, even though CT-Myelogram may have been negative. Any info is appreciated.

[Concerned Gal]

Eman,

Can only share my opinion. I haven't heard wonderful things about the fibrin glue. I don't know of anyone that it has worked for (i mean the incision of fibrin glue without actually surgery) - but that doesn't mean it hasn't. Spontaneous leaks don't automatically result in immediate symptoms. I've read that it can be up to a month before symptoms become obvious. I think that with a spontaneous leak the symptoms probably come on later than what would have after a trauma (say a LP). As for the intensity, i'm not sure how it compares. all i know is mine was spontaneous and I was in a whole world of trouble.

So re your results, you say that they found a leak. Where was it? Also is it from where they put the LP this time? or last time? (ie did they go for different vertebrae so they could see the difference. I think on my myelogram they also saw a bit of dye at L4/5 where they put the LP but that is to be expected really and was dismissed as being from the LP to put the dye in. Was the leakage extensive, or small?

When they do the surgery they often don't see the leak. My neuro said they sometimes chance seeing a bit of fluid lying around/oozing a bit but don't often see the actual leakage site. They tend to do what they can do on instinct. But having said that i know of someone when they opened her up the tear was extremely obvious (a spontaneous leak) and she was told it would never had healed without surgery (being so obvious).

Having a bad memory moment, but I take it your MRI didn't show meningeal enhancement? This can often make treatment difficult. If it was me I would be trying another blood patch (where they think they found leak) and minimal movement for a month before looking at other options. Best of luck.

[waterlover]

Eman,

Though Guinea Pig's point is well taken, my experience is that the medical world frequently does not assume the obvious. In my case I had two epidural shots that caused my leaks, therefore the holes were inadvertant (aka -a big mistake). However, few doctors in the beginning believed the epidural caused my symptoms. They gave a huge benefit of the doubt to the anesthesiologist who performed them....vs. me the patient with the 10-story house on my head who progressively couldn't not stand up ---and who had no significant headache history. Many were more apt to believe that I sustained a spontaneous leak at the same time I received the epidurals (which is is probably less likely than getting hit by lightning), than the anesthesiologist making an error. Also, epidural needles are larger and may take longer to heal and the incidence of spinal HA with epidurals is as high as 30-40 %.....especially with women with low Bmis. Anyway, you had a definite,intentional hole put in you, so they can't question it, though it was with a smaller needle and theoretically should be easier to heal. If you are slow to heal, their search may be worthwhile to be sure you are not leaking elsewhere too. But I wouldn't have too many LP's....at this point for me, my most recent neurologists strongly suggest avoiding them. And also with the blood patches to be shore they are done under fluroscopy. For them to see the previous LP hole on the ct scan seems to show the obvious, you're not closing the hole. I'd go for the blood patch before surgery for as small a hole as an LP......Ask about the risks of creating more leaks with surgery.--Best of luck waterlover