has anyone heard of this CSF functional flow? With this lumbar puncture and cystograph, I asked the radiologist what were they testing for with this particular test and the above was his reply. Has anyone out there heard of this or of this that could be found if they know (which I doubt) about this hydrocephalus ex vacuo.
Thanks in advance for your help. All of you are the BESTEST in the whole wide WORLD
Mke
Ok just finished the 72 hours testing of the functional flow. Overall I think it went well outside of some major pain in/around the injection site. But a random thought came to mind while I was on the way home. Please let me know if you have had any experience with the following situation.
I was wondering if the doctor when he ordered this test that the metal artifacts (post decompression) would make it difficult to evaluate the CSF flow. Any suggestions experience etc.?? With the metal could the cine MRI be effected? Again suggestions experience or anything. I have not found anything one the net yet but I am still looking.
Michael Hope all went well for you! I have to ask if for this test were you hospitalized? Did they withdraw fluid from you over this period of time. I am having lots of confusion from my Dr. and his staff on different things. They mentioned several weeks ago, inserting a catheter, keeping me in the hospital for 3 days while they drained fluid to watch my symptoms. I had a Lumbar infusion study several weeks ago, they inserted the needle 2 times under fluoroscope but was unable to do the test as he couldn't get any fluid to come out. ( I have had multiple lumbar surgeries). My question is, if it is the same test..If they couldn't do the lumbar infusion how are they going to do this one. Anything you can provide about what you had would be great. Thanks and best of luck...Lily
Michael Salasky said:
Ok just finished the 72 hours testing of the functional flow. Overall I think it went well outside of some major pain in/around the injection site. But a random thought came to mind while I was on the way home. Please let me know if you have had any experience with the following situation.
I was wondering if the doctor when he ordered this test that the metal artifacts (post decompression) would make it difficult to evaluate the CSF flow. Any suggestions experience etc.?? With the metal could the cine MRI be effected? Again suggestions experience or anything. I have not found anything one the net yet but I am still looking.
Lily,
I am going to try this again, due to an accidental mouse click and a temperamental computer I lost what I responded to you. Oh well no use crying over lost data. Anyhow they did not hospitalize me during any time of the procedure or offer any pain relief (due to pain center rules and meds I am on). What they did on the first day the radiologist inserted a catheter under fluro for the dye to be injected, injected dye, and pulled out the catheter. The nuclear med tech came in and said to return to the hospital at X time, I really do not remember. All I know it was 5 to 6 hours later. Came back they did their scan and sent me home with time to come back in 24 hours which I did. They did that again after the second scan. so 3 scans of the same area over time and not having results is frustrating to say the least.
I asked the radiologist about measuring CSF fluid pressure and he said that the script did not contain to do that. I was asking him about the testing to see if it could rule out normal pressure hydrocephalus. I wish he could have drawn some fluid and measured pressure, it would put my mind at ease but hey as a doctor once told me ~ that is why it is called a practice.
I do not know if this will help you or not but if it does great if not sorry. If you need help with anything else please feel free to ask.
Mike
Mike;
You actually did help clarify your study and also give me someone to talk to about Normal Pressure Hydrocephalous.
I had a Cine MRI that showed as the radiologist put in his report Symptomatic Chiari I with good flow, prior to the MRI the surgeon attempted to do a Lumbar Infusion on me. Unfortunately because I have had multiple lumbar surgeries he tried 2 x under fluoroscopy to place the needle, got it placed but no fluid came out.
I have pulmonary hypertension and some minor heart issues so was sent to an electrophysicist for evaluation. While I was with him, he asked if I had a Lumbar puncture, and I thought he was thinking MS so said no but my MRI showed no signs of MS. He then told me that he wasn't talking about MS but the NPHI had never heard of it before then. While being a cardiologist, he could not DX the NPH but did put in his notes that I had multiple neurological issues going on and needed additional workup by my neurologist.
I called my neurologist, they did an EEG on me ordered a neuropsych eval on me and also sent me to the neurosurgeon for eval. I have problems with memory recall. When I am talking I have trouble using or getting the words that I want. I can see what I want to say but can't think of what it is. I majorly screwed up our checking account by adding a deposit in 2 times several days apart and forgot to deduct items. I had trouble balancing the checkbook couldn't focus on it and finally with my husbands help we found it. I have balance problems, I feel like I am falling backwards and when I stand to talk with someone and not moving I feel my neck and head tighten up and then feel like I am going to fall. I have fallen several times once in the shower. A few of the falls I can account for but some I can't. I do have a leg length discrepancy and a foot drop that I have had for 10 years and know how to deal with it so that is not my problem. I have a mild peripheral neuropathy in my legs from mid calf down but do not loose feeling in them unless I have stood or sat too long so I know my falls are not coming from that. When I talk and can't find the word my husband usually says what I mean, finishes the sentence for me. I know he is helping but it is more frustrating for me. I am 59, so this is all a bit scary. I know some of the problems have been around for a while but I just put them off. Now with the memory and head pain I can no longer do that. My head pain isn't "pain per sea" it is this horrible pressure in the back and top of my head. Worse when standing and bending. When the Drs. Nurse practioner called with the results of my MRI, I asked what was next and she said that the Dr. would probably send me back to the neurologist for further eval. I asked her about the lumbar study and she said that he would do it again if I wanted to rule out NPH but didn't think I had it. He is going to review my past Lumbar MRI and see if he can do the infusion again or I can go into the hospital for 3 days and they will put a catheter in me in a surgical procedure and monitor the CSF fluid and my symptoms for 3 days. My gait is really bad, but I don't have the magnetic gate that is part of the NPH but I don't think it is far from it. Sometimes my right side of my face gets numb. I had a complete workup by my neurologist with a MRA angiogram and all my arteries are open. The neurosurgeon said that my Chiari I is not pressing on the brain stem and the flow is good so that is not what is causing my symptoms. The electrophysicist thought I had the NPH but Neurosurgeon says he doesn't think it is and the Neurologist says it isn't. I have thought about it and think that I am going to tell them tomorrow to skip the lumbar infusion study as we did it already and I don't want to waste the Neurosurgeons time. I think it would just be best to go for the 3 day in hospital study to be sure. The physiologist that did the neuropsych eval wrote that my head pressure is psychosomatic because I think about it all the time and cause the head pressure by doing it! I have other medical problems and she said that I think about all of them negatively and that is what causes the pain. I was in a car accident in 2004 that was very severe and developed the need for bilateral knees,, hips and shoulders to be replaced in addition to my spine issues. I don't sit home dwelling on this, I get up and go with the other members of our community and don't sit and watch tv all day long I do not believe I am causing this due to my health issues...I have tried for so long to be positive. the only thing I am frustrated about is having this pain and balance issues and nobody finding our what it is. Can you tell me what your symptoms are if you don't mind. Did someone tell you that you have chiari or NPH? If you don't mind sharing I would be interested in hearing your story.
Thanks Mike
Lily
Michael Salasky said:
Lily,
I am going to try this again, due to an accidental mouse click and a temperamental computer I lost what I responded to you. Oh well no use crying over lost data. Anyhow they did not hospitalize me during any time of the procedure or offer any pain relief (due to pain center rules and meds I am on). What they did on the first day the radiologist inserted a catheter under fluro for the dye to be injected, injected dye, and pulled out the catheter. The nuclear med tech came in and said to return to the hospital at X time, I really do not remember. All I know it was 5 to 6 hours later. Came back they did their scan and sent me home with time to come back in 24 hours which I did. They did that again after the second scan. so 3 scans of the same area over time and not having results is frustrating to say the least.
I asked the radiologist about measuring CSF fluid pressure and he said that the script did not contain to do that. I was asking him about the testing to see if it could rule out normal pressure hydrocephalus. I wish he could have drawn some fluid and measured pressure, it would put my mind at ease but hey as a doctor once told me ~ that is why it is called a practice.
I do not know if this will help you or not but if it does great if not sorry. If you need help with anything else please feel free to ask.
Mike
Hi,
Sorry if this doesn't make sense, there is over a month post-op that I do not remember and have put together from information I received. They did my craniotomy on an emergent basis following an MRI. I had an abnormally rough reaction post surgery so they did a lumbar puncture to check CSF flow. It turned out that I got spinal meningitis from the surgery. Additionally, my CSF was leaking both into my brain (fluid on the brain caused many seizures) and out of my spine. They conducted one unsuccessful spinal patch followed 2 weeks later by a successful one which left me pain free for a glorious 2 weeks. I was told that it is just a very small percentage of patients who have these issues. I am brand new to the site so I am looking through all of the discussions. I see that this post is older, but I hope your pain on the site has decreased if it hasn't gone away completely by now.
Michelle