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GasconAlex

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About GasconAlex

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  1. At last a neurologist who listened, and did a thorough exam too. Unfortunately he has a strong suspicion of Corticobasal degeneration, which frankly isn't great news. He is not convinced that the tumor, CSF leak, skull base problems and meningitis fit some of the neuro symptoms (although the headaches may well be - hoping the operation in July works) so he is arranging a brain scintigraphy to see if this turns up indications. So a mixed day overall.
  2. Prism glasses can help, even if they aren't perfect. The other option is an eye patch. An orthoptist (OK I didn't know it was a thing before I was sent) is usually someone dealing with squints and the like. They are a bit like physio for the eyes and this can help. However having your vision split by various prisms to 'exercise' the eye muscles is surprisingly tiring and headache inducing. It does help some people. My orthoptist did several tests with different prisms over several sessions before deciding what compromise would work best for me. I never wore glasses before and had plain glass (with slight astigmatism adjustment) made with prisms. They help a bit.
  3. Try an orthoptist for your diplopia. They have lots of headache inducing tests and some people respond to the reconditioning they can do. Don't plan on driving straight afterwards as having your vision split really does your head in. Prismatic glasses can also help and the orthoptist should be able to add this to a current prescription, and if you don't have a prescription you can always have just the prism.
  4. Neurology Reviews. 2017 March;25(3):23-24 Imaging of patients with CSF leaks often initially is read as normal, and MRI is not an adequate evaluation in the high clinical suspicion of a leak, Dr. Carroll said. “It is a good place to start, because if you see a leak on your MRI, maybe you do not have to get a CT myelogram,” he said. “But if you have a clinical suspicion of a leak … you should pursue that in the face of your radiologist telling you that there is nothing.”
  5. CFS leaks are tricky, and the MRI is no way definitive on this, except for huge leaks. Smaller and intermittent leaks are missed. The headache neurologist I saw was 100% confident in the MRI, even though I had a confirmed CSF leak (by surgery) and the MRI 3 days before suggested there were no problems. She dismissed any possibility of a leak because of the new MRI. The only headache relief that worked was a blood patch, this worked for 36 hours before stopping abruptly. During that time I was still orthostatically intolerent with some bp issues - but no headache. The ENT who is now treating me believes that I have another CSF leak from a different skull base defect and will (hopefully) be operating in July. They however said that 20-30% of nasal CSF leaks do not show up on the MRI. They are also not considering any neuro or pots symptoms for their diagnosis only ent ones. I (and some of my doctors) are considering that there may well be an underlying problem, probably eds that is causing repeated problems. So even if the next leak gets fixed the pots might well still be there. But if fixing the leak fixes the headaches that would be great. There is a huge disagreement on this within the professions, the neuro surgeon believed the symptoms justify a blood patch (hurts but not hugely risky) and if that makes things better then his view was that is confirmation. Some neurologists say only a spinal leak can cause the headaches, some believe cranial leaks cause problems but not by low pressure. There are many opinions so look at your case carefully and don't necessarily accept the first assurance you come across - it depends on your particular symptoms. If you can get an opening pressure reading from a lumbar puncture / blood patch that can help. I've never had this despite numerous lumbar punctures and blood patches, but some doctors say it is useful in CSF leak diagnosis.
  6. Not entirely sure exactly what they are proposing as this gets explained just before the operation at the same time as I have the anesthetic consultation (about a week or so before the op.) The only information I have is that they need the MRI for the surgery to act as guidance. This specialist is a 'nose' guy who based on symptoms, and a cone beam (type of CT scan), and the fact that a couple of years ago the MRI said no leak and intact dura a couple of days before the surgeon had to stop because the dura was leaking and had collapsed into my ear, is convinced the last MRI (January) is not definitive and there is another, different leak from the nose. Several of the specialists have said that the MRI can miss 20-30% of cranial leaks so they cannot be taken as definitive. I'm 'lucky' in that I have several areas of 'defects' in my skull base visible on the CT scans, so they think this could explain some of the symptoms, but with a family history of eds it may well be that the leak just pushed me over the edge from coping with symptoms to being unable to fight through all the issues. The only thing that really helped my headaches was a blood patch which worked perfectly for 36 hours - no pain meds at all and about 5 hours out of hospital feeling human (still unstable and unable to walk unsupported but able to stand without headaches). They only tried the blood patch because of several lumber punctures I had with the meningitis. Shortly afterwards I had a consultation with the regional headache specialist neurologist who, unfortunately, is of the opinion if a leak isn't visible on the MRI then there isn't a leak. After that consultation they were unwilling to retry another blood patch. Cranial CSF leaks are notorious for being difficult to detect in those with spontaneous leaks so it might well be worth pushing down that road as at least there is a chance things might get better for you if this is your case.
  7. After a fair bit of telephone work I have at least had some progress. The latest update is I get to have yet another cranial MRI (this makes 11 on the current problems) followed by consultation and surgery a couple of weeks later. (Early summer) The MRI is for a roadmap, they are not expecting the expected CSF leak to be visible. It would appear that a large portion of my skull base is defective with confirmed leaks (confirmed by surgery) and my brain dropping slightly out of its cavity. They currently believe I have a leak into the sinus area, the previous leak was into the ear. Not sure if this will change the dysautonomic problems, really hoping it solves the headaches.
  8. Unfortunately MRI only shows so much, and often in neurological problems shows very little. In my case I have had repeated MRI's ( 10 in the last 3 years) and they have only shown expected damage and no explanations for my problems. Unless there is a largeish physical problem it is unlikely to help, but it is worth checking even so.
  9. A problem with lists is that you list everything the neuro says it's psychological as you have a laundry list - but when you don't have a list they say why didn't you tell me about xyz. I take a list and start on the major stuff then bring up other stuff if it looks like it might be relevant. Unfortunately I have 'issues' with my local hospital general neuros who keep sending me for hyper specialist neuro assessments who come back with there are neurological issues but these are not my specific corner. I end up no further on. Hopefully you hit a good neuro who can help you.
  10. Treatment for CSF leaks is (in the first place) staying horizontal for a few weeks to allow the membranes to heal. In lots of cases this apparently works. Another option is the blood patch. This is where your blood is taken and then injected into your spinal column. For me this worked perfectly for the headaches, 100% gone with no pain pills necessary for 36 hours. No headaches when vertical at all. (You can have this done if you are a Jehovah's witness by the way - I'm not but it came up when I was researching the treatment) But this is where it gets complicated for me, my gp, neurosurgeon think it is a leak that cannot be seen on the MRI (if he can't see it, or where it might be he can't fix it) on the otherwise the neurologists who can't agree but the one who is responsible (and did the patch last time) disagrees and doesn't want to retry. Without definite proof no one else wants to contradict him.
  11. Because the headaches became utterly ridiculous I take slow release tramadol all the time. With this I can be vertical for up to 120 minutes before it gets too bad. If I have vibrations (like car trips) it makes the headaches much much worse. Then I take more tramadol and also paracetamol until I have real problems. By that time I might need 12 to 36 hours flat. It's not perfect but the chronic pain people think it's better to be able to be vertical (and yes it doesn't get rid of the pain) than to decondition myself.
  12. Voted yes but after about 3 years they are much less orthostatically sensitive. Now I take more pills and spend more time vertical.
  13. @bombsh3ll never had a myelogram, did have a full spinal MRI looking for leaks. This took over 50minutes in the MRI (from image timestamps) nothing relevant found. Family has HEDS, but no genetic testing done. Some suggestion of Marfan's, from a range of doctors for different family members but consensus moving towards eds. (Last year I had an angio ct looking for aortic dilation the neuro came back with 'sorry signs of dilation' cardio said ' yes but 'just' within normal so not worrisome') I have quite a lot of dystonia, so no longer showing flexibility! @StayAtHomeMom depends on the leak. Constant high volume leaks are more obvious, intermittent lower volume leaks are much more difficult. http://dizziness-and-balance.com/disorders/central/csf-leak.html Has some interesting stuff but also quotes that no imaging is particularly useful. They look for diffuse symptoms but these are not definite. To really look you have to examine each area closely. I remember the neuro intern saying ' ah we'll need an MRI' Head neuro saying 'of what?' Intern - 'the head' HN - 'you can't say that, you need to look for something' @bombsh3ll if some of your stuff gets fixed, you can probably live with the rest. Its what I'm hoping for. Sorry this is a bit disjointed, I broke a rib on Monday and this has made life even more difficult.
  14. The confirmed leak was spontaneous, but linked to an ear tumor. Since then the family has confirmed eds with pots which means the rest of us have looked at the symptoms. I'm fairly certain eds is there but the doctor wants to sort out the neuro deficits and severe headaches before looking into this - which might be the underlying cause. The otologist who examined me last was not sure where the fluid he found by rhinoscope was coming from, so needed to check. That is when the bony defects in the sinus were found. I have the next MRI in December to check, but the imaging is often not conclusive in leaks. He strongly suspects another (different) spontaneous cranial leak. The blood patches were tried because of the lumber punctures I've had, these were fairly difficult due to low bp. The neuro who did them is now chief neuro at the local hospital, he didn't want to do the patches and only did when told to do so by his now retired boss. This makes having another try difficult to say the least. My point is that even with issues and specialists thinking there might well be a leak, because the MRI's are not clear it is difficult to progress. I'm doing better this year, still have lots of problems but no inpatient stays so far this year. That's a lot better than the 25 ish days last year and 142 in 2016. It's certainly easier for my kids.
  15. Very difficult getting a leak confirmed. Looking towards my 10th MRI and still no general signs visible. The problem being that I was operated on 3 days after an MRI, which they were sure meninges were still intact- they weren't- and I had a leak confirmed surgically (along with some brain herniation) this meant that operation wasn't successful. After meningitis still have problems, including postural headaches etc. However now have disagreements about causes. Neurosurgeon convinced is still leak, some neurologists think maybe, some no. The Neurotosurgeon thinks not because other than the tegmen tympani being mostly missing nothing else shows. The ENT has just run a new cone beam but that shows the ears fine but large bony bits missing in the brain / sinus border. This is with a very slow nose drip that increases when the hr goes into overdrive by standing up. Have had a few blood patches that work for a day or two (during which time my nose runs more) then stop. My gp is convinced its organic, some of the local neuros think might be related to eds, some say psychological - psychiatrist says organic. So my case is a little complex, I'm leaning towards the problems of pots and eds always being there and I thought this was normal (physio says partial dislocation of jaw if do move too far is not normal) but the other problems and leak just put it over the edge. If you have visible signs on the MRI it's easy to show a leak, if not you run around the houses again and again. The pots (from ttt) was easy to show, although the cardiologist here think pots should be an instant acceleration on standing not gradual over 2 or 3 minutes. Good luck on trying, I'm hoping at least some of my problems are sortable.
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