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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.

 

 

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@GasconAlex - congratulations!!! I am very happy for you that the leak got fixed and the headaches etc are gone, I hope it stays that way!!! -- Regarding the worsening POTS - that is to be expected after surgery and especially after that long period of bedrest. What has proven effective for me in that situation is always SLOW reconditioning. I get up frequently for short periods of time but avoid extended periods of being upright AT FIRST and I often do reclined exercises until the HR no longer gets quite that high, then I increase my activities slowly. Sometimes this can take up to 8 weeks until I am back to my normal tolerance. I just had to do that whole frustrating process of reconditioning after having 2 back-to-back bad infections that caused my POTS to flare but I am back to normal, I hope it will improve for you as well. Just be patient with yourself!!!! Good luck - hang in there!!!

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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.

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I am so pleased your surgery was a success & hope you continue to improve! Don't be discouraged by your heart rate changes, for one this can be induced in healthy volunteers following bedrest studies, & secondly HR changes are a poor marker of POTS severity & often do not correlate well with symptoms. If you can sit up comfortably, that is a win!

B xxx

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@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.

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Thanks! It is interesting your MRIs showed nothing. I was so convinced I had found the answer to my problems when I learned about the connection between CSF leaks and POTS, especially since I was completely healthy until a forceful Valsalva. 

Can I ask if you ever had your intracranial pressure measured either with LP or intracranial bolt, and if so was it low?

B xxx

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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).

 

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On 7/11/2019 at 9:45 PM, GasconAlex said:

If you are thinking of opening pressure measurement can this be combined with a blood patch?

I had never thought of that, I doubt I would be able to access that but it is a good idea & I will certainly ask when I see the neuroradiologist who specializes in disorders of intracranial pressure & flow next week. 

Can I ask, with a confirmed CSF leak I know you had terrible orthostatic headaches like me, but did you also have the fainting/precyncope/cerebral hypoperfusion?

B xxx

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@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. 

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16 minutes ago, GasconAlex said:

I knew I could not remain vertical and conscious so perhaps that counts as presyncope. 

Yes, that is presyncope, and describes me to a t. I just wanted to check whether someone with a confirmed CSF leak had it. I think presyncope is probably difficult for people to articulate, if they do not know the medical term & have not actually fainted, they don't necessarily identify that the way they are feeling is how someone feels right before they faint. This is probably why so many people with dysautonomia complain of or are labelled with "fatigue" - yes, they need to lie down, but it is due to cerebral hypoperfusion/presyncope not tiredness. 

Has that improved since your surgery?

B xxx

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