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GasconAlex

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About GasconAlex

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    South West France

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  1. I disliked my first blue badge, even though I use a wheelchair. I have disability but hate applying for it. It's hard having medical assessments that say you're not really functional, but I try to do as much as possible. It's good news to have stuff fixed, and maybe you will get better - it is always possible.
  2. @bombsh3ll I'm not sure about fainting or pre syncope as the only time I am sure I fainted was in hospital waiting for an xray on my shattered and visible kneecap. This happened hours after the injury and was chalked up to significant blood loss. Sometimes (even with taking lots of painkillers) the headaches were so intense that I had to lie down before falling down. I knew I could not remain vertical and conscious so perhaps that counts as presyncope.
  3. I haven't had lumber puncture opening pressure done (even though I pushed for it when being tested for chronic meningitis), but after my first lp which I cannot comment on as I had meningitis at the time I've found that whenever they took a sample I have the exact same headache but even more intense than normal. When they tried blood patches it helped the headaches, the best one was 36 hours headache free. But the neurologist have always gone with the radiologist and he was wrong. I have the full scans, CD and cover letters. I've got to contact several neurologists with these and the surgical report as dismissing a diagnosis which (according to ent doc) the MRI is incorrect 20-30% of the time is not a acceptable dismissal %'tage. One quite enthusiastic but now retired neurologist believed cranial leaks should not give headaches as back when his old boss took cranial CSF out with a huge caliber cannula so he was certain a leak would need to be lower down the spine. I have lost a lot of confidence in neurologists, the neurosurgeon had it spot on 30 months ago but as he said MRI doesn't show everything (but a surgeon cannot fix it if he cannot see it), and to regard it as a tool not an Oracle. If you are thinking of opening pressure measurement can this be combined with a blood patch? That way you don't risk adding a leak source for no benefit as you also try a blood patch. They hurt quite a lot - but for me the 36 hours was worth the pain (as I have difficult veins the blood for the patch was extracted, after multiple failures, from the front base of my thumb).
  4. @bombsh3ll Thanks. I can stay seated all day at the moment no problems, which is really great. I also lost a whole host of secondary neuro symptoms in the two or three days after the operation - I have fine motor control again and can do alternating movement. My point with the POTS is I think I had it before but it never affected me. I'm not too concerned about POTS if it is asymptomatic for me. I have other fairly serious issues that need sorting. My gp is concerned with either Marfan's or EDS for my boys who both have more symptoms than me but I and one side of my family is marfanoid so I'd guess there is a genetic connective tissue issue (relatives have been DX' d) This is my second confirmed cerebral CSF leak with loads of top grade MRI's all saying absolutely no signs of a leak or communication between ear / nose and brain. However the specific CT scans showed significant bone loss in both areas, suggesting communication. Luckily I found a surgeon who didn't believe in the all powerful MRI and was willing to operate to investigate the overwhelming clinical suspicion of a leak. Hope you get fixed too, spending a life horizontal is no fun for you or your kids.
  5. Thanks @Pistol, I really hope the headaches have been mastered now been 24hrs + with no pain meds which is really really good. I don't 'feel' my heart rate it's the doctor who worries! In one of the post op problems I suffered heart rate was over 160 whilst horizontal - I don't feel this - I was obviously a little stressed at not being able to breathe. Ruined the doctors Saturday night spending an hour or so clearing my throat properly.
  6. Back home after the operation and 8 days (mostly absolutely horizontal only on back - no turning to side allowed) in hospital (not fun in an older non air con hospital at 38°C/100F) but there you go. Firstly a recap I've had a CSF leak and serious ear/brain work on the left in 2016 including meningitis. For that, and since that, I've had 11 Cranial MRI's (and a full 3 Tesla complete brain/ spine MRI - about 1 hour in machine time). None of those, particularly those tasked with looking for a leak, have given any indication of any CSF leak. One radiologist (who helps define the national protocols for cranial MRI) who has personally done 5 of these scans said on the last CT scan report 'Is it really necessary to do another MRI?'. They were not sure they couldn't see the leak but no associated signs were present either. But I also had the traditional orthostatic headache, which over the years moved to being an all the time headache which got slightly better lying down when the huge number of pills could not drown out the headache. The neurologists all (relying on all those MRI) said no leak possible, therefore medication misuse /psychological or other factor. End last year one of my ent guys actually looked when I complained of still having a slight right sided nasal drip. The ent guys I see are all specialist ear guys and don't do noses. He immediately ordered a none classic cone beam (CT scan) and sent me to a nose guy (doesn't do ears....) With my symptoms he was certain there was a leak and believed the CT which showed bone defects would be proven correct. In the operation he confirmed a 'large' break and 'significant CSF leak' with very little bone present. He then tried to patch this. Since then I've had a couple of issues, but most of the patch is holding. So far: My normal headache has gone! I've got a small sinal headache, but it comparison it is nothing. The hospital kept trying to offer extra pain meds but have basically stopped. I was taking a *significant* amount of tramadol every day and a couple of times when I had colds I was upped onto morphine / fentanyl. I can spend all day sitting - no problems. A lot of my fairly difficult neurological muscle problems just disappeared instantly. I have lost the salty metallic taste. But : The POTS is actually worse. Instead of a relatively slow increase my pulse really jumps on standing the cardio didnt like my 24hr holter for pots as the change was not abrupt enough, but the TTT got a 50bpm increase to 145bpm (ish) so well into POTS.
  7. @bombsh3ll I know you have the headaches too, I was really surprised at how little faith in the MRI he had compared to the CT scans - normally it's the reverse. That said MRI scans have little risk (with the macrocyclic gadolinium contrast) which is why I keep having them, the CT scans (especially the ones I've been having) have the xray risks so I try to minimize the number I have as I have already had a few... Hopefully I will be released in about 5-7 days, but that's what they said in 2016 when it took 142 days before they were comfortable releasing me from hospital and rehab. At least my kids are a little bit older now so the absences are easier to manage.
  8. Finally had the consultation with the ENT nose guy. After yet another MRI he is going to operate next week. The MRI does not show any CSF leak (none of mine ever have - even the one a few days before a surgically confirmed leak), however one of my problems is with the skull base. The skull base is a bit of a surgical battleground between various groups of neurosurgeons and different factions of ENT surgeons. Even though the problems are in basically the same bone and are a few centimeters apart the surgery is done a different way (endoscopic rather than microscopic) by different surgical teams and, in my case, in a different site of the hospital. For those with classic CSF leak symptoms (including POTS) the surgeon (specialist rhino skull base) said some interesting stuff. Firstly that I have a definite problem visible on the cone beam (type of CT scan) that is not visible at all on the MRI. In these cases the scanner is almost always correct and the MRI is a false negative, he is more than willing to discard the MRI as it misses smaller or intermittent leaks. Secondly, with my symptoms he would be absolutely astounded if there was not a leak, so seeing as it is not fixing itself he will try to repair the damage. Notwithstanding the other neuro problems (which may be caused by other stuff), hopefully this sorts the continual headaches (started as really orthostatic, over the years (!) have become constant with orthostatic worsening).
  9. 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.
  10. 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.
  11. 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.
  12. 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.”
  13. 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.
  14. 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.
  15. 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.
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