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About GasconAlex

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    South West France

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  1. @Sushi I wear them during the day when I'm up but when I've been hospitalised and forced to stay absolutely horizontal all day (try eating and drinking lying on your back without being able to turn to your side) they insisted I must have the stockings (thigh) 24 / 7 along with the anti clot injections. @Delta The problems started when I was away on holiday normally I take pills and spend most of the day vertical but on holiday I was forced to use my wheelchair all the time. Because of the peripheral vascular disease ( sort of super Raynaud syndrome that affects the feet, hands and lower leg) I ended up with lower leg damage and open sores by the time I got back. The doctor then said that the tights (full leg version) would help if I was forced to stay sitting for long periods and also help my legs get better. Now, after 3 months, my legs are better (mostly) and I'm trying not to wear them all the time ( the doctor says she'd prefer it if I wore them every day but it is only important if i end up sitting for long periods). The tights are professionally fitted. Once over my ankles (which some days I need help with) I can get them on, the feet and ankles are really difficult though. My doctor has some issues with the heart rate (50bpm increase on the TTT) but would rather I didn't take beta blockers as my bp is really quite low anyway. She suspects it's all to do with the cranial CSF leak which combined with connective tissue problems means neurological problems with hypertonal muscles and too many drugs anyway. e
  2. Do you become dependent on compression garments? I've had to restart using these because of blood pooling in my lower legs caused significant damage. Now as the damage is mostly repaired I am reducing their use but have found that my heart rate variation is much worse without the garments but I got no corresponding improvement when I started wearing them again initially. I would prefer not to use them (except when I'm not mobile) as it complicates an already fairly difficult life.
  3. @bombsh3ll the pots symptoms are just ridiculous heart rate changes. I feel pretty awful being vertical and it gets worse the longer I'm up. After the operation (5 days absolutely flat including eating, toilet) felt much better. Then had a month mostly flat no effort. When I started being up more it hurt more, but I don't want to be horizontal all day so take pain pills for the headaches and when too much lie on floor / bench or recline wheelchair. ( I have balance issues and mobility issues). The leak was right sided, now left sided so is new. The surgeon has little expectation that the patch will be lifelong as 'I have very little bone there', if / when it leaks again on that side I can look at other options but in absence of definitive imagery he operated to look and fix rather than having all the repair options available. Neurologists in particular seem to be very compartmentalized, the headache neuro looked at only the headaches, the movement ones ignored the headaches, the dysautonomic one showed the mild dysautonomic dysfunction but that's all. The local general neurologists are approaching retirement and not interested in 'new' stuff. I found a goodish one but since he cannot see the link between leak fixed - rapid improvements, leaking again problems restarting (he see's only the improvement so carry on.....) and why should a CSF leak cause odd neuro dysfunction? At that point gave up as a bad day and will speak to my nice gp. The great thing about it being leak related as it isn't neuro degenerative - which when I cannot think clearly is a great help! Hope you find a solution but it's taken 3 years for the leak diagnosis even when I'd already had a CSF leak surgically proven. The difficulty in my view is that with better imagery many doctors look at the pictures and not the patient.
  4. @bombsh3ll the treatment helped, but never touched the POTS. I think I always had this but was never symptomatic, again a history of a connective tissue disorder but I have it mildly (my boys are showing much more in the way of symptoms) After some success now I am more vertical I am leaking again, but from a different point. I do have a little nasal discharge but mostly only after I've done way too much. I have a metallic taste issue, orthostatic headaches and muscular rigidity and tremors. The skull base surgeon is leaving it 3 months, then he'll do an MRI, then try to fix this new different leak. The MRI is expected to show nothing as the leak is intermittent and much better when lying down. So lying down in the MRI means the leak is very unlikely to be active. Looking around there is quite a bit of stuff that shows cranial leaks can go unremarked with no exterior signs or images (like my first CSF leak) and suffer from the same headaches etc. as spinal leaks.
  5. 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.
  6. @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.
  7. 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).
  8. @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.
  9. 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.
  10. 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.
  11. @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.
  12. 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).
  13. 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.
  14. 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.
  15. You may want to 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 in my experience 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.
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