gjensen Posted March 3, 2014 Report Share Posted March 3, 2014 I am getting a spinal tap today. Then injected with dye and CT scan. Anyone know what this is like? Anything I should know? Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted March 3, 2014 Report Share Posted March 3, 2014 The ct scan dye makes you feel very warm all over and raced my heart a little. Hope all goes well keep us posted. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 3, 2014 Report Share Posted March 3, 2014 Haven't had a spinal tap. The CT with dye contrast is no big deal....you just have to lie there. Some dye will make you feel like you have to urinate but you won't really lose control....but they usually warn you about that sensation. Willing be sending positive vibes your way. Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 3, 2014 Report Share Posted March 3, 2014 Tyler has had this done. After it is over, you will need to lay on your back for several hours. Then you can go home and lay around some more. Be careful about getting up and don't fall or roll off the bed. Tyler had to have a blood patch one time because headache increased and very sick to stomach 36 hours later. Quote Link to comment Share on other sites More sharing options...
Confusedguy Posted March 3, 2014 Report Share Posted March 3, 2014 The Spinal Tap is a bit annoying, nothing more. They numb the area so you don't feel much. Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 4, 2014 Report Share Posted March 4, 2014 Yesterday is over. How are you feeling? Just remember to move slow and easy. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted March 4, 2014 Report Share Posted March 4, 2014 Wondering how you're doing, too... I hope everything went well Quote Link to comment Share on other sites More sharing options...
gjensen Posted March 4, 2014 Author Report Share Posted March 4, 2014 Thanks guys. I did not think much of the procedure. It was barely uncomfortable. Only discomfort was from laying on my side which I have trouble with, but still do not know why. They did not end up looking for a leak, because my pressure was high. 22.5, and normal maxes out at 20. They did add and take away to see where my tolerance was. A few ml gave me a pretty nasty headache up and I am not sure where I was on the other end. They did a draw for testing. 14ml? That gave me a headache, and it is worse now than yesterday. What I think is interesting is this is the same head symptoms that I get in spells. The ones that put me down, with the sound sensitivity etc. This doctor thinks that my head issues is CSF leaks as a result of high CSF pressure. I do not know if she is right or not, but after the procedure and in their "recovery room", my sound sensitivity went up and the same general feeling was there. Because of the similarities in the symptoms, I wonder if she is not right. I also wonder if I am not leaking now from the procedure. Low CSF pressure can cause many POTS symptoms, but not high pressure. This would be no fix for me, but if my head symptoms could be resolved, the whole thing would be manageable for me. Everyone knows the head symptoms is what puts me down and keeps me down. I started thinking about what would cause high CSF pressure, and will look into it. I wonder if it is not compensatory for something else. Everything is a pretty precise balance concerning the brain. Could a lack of blood flow to the brain, stimulate CSF production? I am thinking the CSF pressure is maintained by volume? Anyways, sorry for the babbling. I am not real sharp right now. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 5, 2014 Report Share Posted March 5, 2014 Have you been evaluated for chiari? That can cause high or intermittently high csf pressures. And actually, my geneticist (prior to being reminded that I have a sulfa drug allergy) wanted me to try Diamox which is a diuretic that seems to target reducing csf based on my symptoms including my dysautonomia symptoms. So I think high pressure may be able to cause some pots symptoms as it can put pressure on the right places of the brain stem and spinal cord. I'm glad your procedure went well. Quote Link to comment Share on other sites More sharing options...
gjensen Posted March 5, 2014 Author Report Share Posted March 5, 2014 Katy. I was prescribed the same thing. I have not filled it yet. She wanted me to take it when I had my head symptoms. It is more to see if high pressure was causing anything. I will have it filled tomorrow and play along. I have to admit that I am skeptical. What has moderated my skepticism is that they triggered exactly what gives me the most grief. It did not and has not gotten as bad as I have experienced. This is on the low pressure side though. When they added fluid, and instigated head pain, it was a much different pain than I get. I was evaluated by two Duke neurologist concerning a Chiari Malformation. They both have ruled that out. I have never had an upright MRI, so is it really ruled out? Katy, as far as I know, my high pressure is normal for me. I will cooperate, because whatever my head problems are is the most debilitating of my symptoms. When it comes, it puts me down for a week or so and I cannot even lift my head. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 5, 2014 Report Share Posted March 5, 2014 From what my neuro and my EDS geneticist have told me, as well as what I have read in the last 3 years on this forum and my EDS forum, chiari can only truly be ruled out by an upright mri. The force of gravity on the position of your brain supine vs. upright is significant. Your brain can sit in your skull properly while lying down but can then fall into the dropped chiari position when you sit up, so regular mri wouldn't necessarily detect chiari. Even xrays wouldn't show enough resolution to clearly detect a problem with the soft tissue. Quote Link to comment Share on other sites More sharing options...
gjensen Posted March 5, 2014 Author Report Share Posted March 5, 2014 That makes sense to me Katy, and thought so before I started hearing it. I have not felt confident in the answers that I have gotten. I have not been especially concerned with the possibility, because it would not explain the neuropathy etc. that I have. But . . . as usual, I am not confident in anything. All of this stuff is very difficult for a patient to discern. I can theorize all day long, and it amount to nothing. I need to feel confident in my doctors, because even if I do know (which I don't), I do not have the ability to prove anything. I needed to add that I mentioned 20 as high normal, and was wrong. It is 18 that is their high normal cut off. Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 5, 2014 Report Share Posted March 5, 2014 The high normal number is interesting. My son has had several spinal taps and his opening pressures were aiways above that number like 27, 24. 26. The doctors took fluid off but my son could never tell a difference in his headache pain levels. We had thought about a shunt but since the spinal taps did not help, we saw no reason to have that procedure done. Glad the procedure went well. Quote Link to comment Share on other sites More sharing options...
gjensen Posted March 5, 2014 Author Report Share Posted March 5, 2014 The high normal number is interesting. My son has had several spinal taps and his opening pressures were aiways above that number like 27, 24. 26. The doctors took fluid off but my son could never tell a difference in his headache pain levels. We had thought about a shunt but since the spinal taps did not help, we saw no reason to have that procedure done. Glad the procedure went well. Rachel, what did they call normal? I am finding 15 now. Doesn't seam to be a solid consensus. 27 is pretty high, and probably would cause pain. I am hesitant to make too much of it myself. I can't find it again, but earlier on, I could swear that I read of a relationship between CSF pressure and our vasculature, especially concerning cerebral perfusion. I am looking for it, but all I am finding now is some vague comments on it. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 5, 2014 Report Share Posted March 5, 2014 sorry you had to do this. You may have a Spinal Headache from the spinal tap. Easy to tell. If the headache goes away when you lie down and comes right back when you stand, you can be sure its a spinal headache. Two treatments: time and fluids and sometimes caffeine helps. Or the blood patch. That will fix it right up but involves another procedure-very minor. Good luck. I've had all that and the headache was the worst. Also I take care of pt's with the epidurals all the time so I see this a lot. Don't rule out the other ideas on here though and be well.June Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted March 6, 2014 Report Share Posted March 6, 2014 Have you heard of pseudotumor cerebri? It's main symptom is headaches due to high CSF. Normally the headache will be worse when laying down and will cause your optic nerve to swell, have you gotten your eyes checked recently? Quote Link to comment Share on other sites More sharing options...
gjensen Posted March 6, 2014 Author Report Share Posted March 6, 2014 I think right now it is low CSF. Awful to. My bed is raised so . . . I think my high CSF is from impaired blood flow to the brain. I believe CSF production compensates to maintain balanced pressure. I may be wrong, but I wonder how may POTS patients have CSF pressure on the higher end. I think what I get is leaks, leading to low pressure. Probably from high pressure. I have a number of derviculi on my spine. They are prone to leaks. I would not be surprised a bit to find out that I leak because of high pressure, because of impaired blood flow. This feeling I have now is the feeling (but worse) that they gave me from the procedure. It is the exact same feeling that I have whined like a baby on here about. When it gets bad, I cannot even lift my head. The feeling that they gave my from high pressure was much different. A sharper all over pain. This a duller numbing pain that radiates into my face, and gives me an icky feeling. They want to check my pressure again when I flare to test this. I want to wait until the next one though. This one, if low, could be attributed to the tap. That would not help my cause. I will wait this one out like I have all the others. Really the truth is, what can they do? Seal all 12 CSF sacs? I doubt it. Then what about the high CSF? I can take diuretics, but if it is compensatory? Then what? I think I am heading nowhere on this one. What I want to do is improve the blood flow to the brain. I have wanted to try florinef, but if they know any better, that will not happen. Personally, I would like to take it when I knew that I was low, but they might not go for it. I am going to run out of options soon. Quote Link to comment Share on other sites More sharing options...
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