Don’t let my difficulties put you off as I had CCI & vES. Many members have earlier success or better outcomes. I always knew my right side was the worst. D
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I hope your healing journey turns a corner soon, & you start feeling noticeably better, @PatientD. 
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Thank you. Briefly the facial physio team at QS said last week my facial symmetry is fixed now. Still have some physio to continue. Mention this to reassure others that facial wonky smile etc from moving facial nerves does fix with time. First bite syndrome remains for now. D
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The good news about First Bite Syndrome is that it gets less intense over time & also less frequent. Hopefully yours goes away entirely, @PatientD. I’m really glad your facial symmetry has recovered. That’s a giant step in a positive healing direction!!
Very pleased for you that the facial nerve has settled!
As Isaac advised would happen, the frequency and severity of first bite syndrome has lessened now at month 3 post surgery. Not gone but definitely improving. My greater auricular nerve pain (moved for styloid removal) is improving too. Greater occipital nerve blocks across back of head today again painful/worse on post operative side behind ear but should reduce pain levels across back of head for 2 months so worth it. Sharing to confirm that nerve pain levels after op do improve with time. D
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Thanks for the update, very pleased for you that some of the pain is lessening…any improvement on your vascular symptoms? Hope that the nerve blocks help
Thanks Jules. Await CTV scan results in Dec at QS. (Mr Watkins away on extended health break). My sense is am making progress, just much more slowly at month 3 than I would like. But some progress is better than none & hoping for at least a small progress on IJV width. Symptoms suggest won’t be increase of one third in width, like in 2022 after ops. Staying upright is easier for longer now. Right JV post op is clearly open now when upright & supine. QS told me JVs should open when upright if spinal drainage not working 100%. D
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It sounds like you’re getting all around good recovery, even if progress is slow @PatientD. Expect more of that as the months continue to pass. I hope your CTV shows better results w/ your IJV width than you expect.
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Good that there’s some recovery even if it is slow
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Hi, am going to UCLH NHS ENT in London on Dec 8 - as part of my 2 year (so far failed mission) to see Mr Hughes for follow up in his NHS practice. As had no meaningful ENT help yet (Axon won’t help) I will take the opportunity to find out if they can help Eagles patients there, incl VES,!or not. If any useful info will try to post it here. D
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While remember I will post that contrast used in recent CTV took away bad sense of pressure & tightness in head for a while. Told contrast is iodine & dilates veins. Was same outcome for CTV in 2022. Makes me wonder if vasodilation meds or taking more iodine via supplements could reduce head pressure/tightness. Problem is can’t just get for head only, so whole body effects to consider from vasodilation but will ask medics about this at CTV results session. May experiment with iodine supplements carefully a bit. Not sure if others have tried vasodilation before? D
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Others have mentioned blood thinners helping, but not sure about the vasodilation…would be good if you get the chance to discuss this! Hope your appt goes well
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Niacin (vitamin B3) is a natural vasodilator as well but I think its effects occur shortly after consumption unless a time-release version is available.
Hi @akc, my brain fog & vision problems don’t allow me to keep up with everything as I’d like so you’ll probably get more complete info from others more up to speed but generally the UK neurosurgeons don’t seem to respect the NSs doing the CCI surgeries for EDS & ME patients. Then MR.T started doing them privately, I think initially I have heard without traction and now is doing traction. Dr.G has always used traction. I have no idea why mr.T won’t see me bc of being Dr.Gs patient, it seems bizarre to me as you think they would want to help. Dr.G is specialist in CCI but is always good to get multiple opinions with rare conditions. He will screen for compression issues but openly says it isn’t his specialty and to seek a vascular surgeon for more advice. Sorry if that doesn’t read to well I’m super foggy! Hope your friend gets the help they need x.
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@Hema that’s super positive news! Great to hear of more doctors willing to listen, how have you gotten on? Did you get the injection? X
@PatientD thats really encouraging to hear! I have left side facial droop of unknown cause atm… but to hear a positive story of facial physio helping someone is really good! So pleased for you and thank you for all your posts they are so helpful, i cant reply to them as much as would like but just thank you! PS I am possibly having ICP bolt as queens square… is this where you had yours ? Any tips / advice? Is it really horrible?
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Hi, yes I had ICP monitoring at Queens Sq in early 2022 over a 48 hour period. I was at my very worst health then just before my operations For fusion & JV decompression began. Head turn caused big ICP monitor spikes which they did not know happened & asked me if they could publish. I spent some time with research team doing movements with monitor in place so they could learn. It was hard but I felt it might help future patients.
The ICP monitoring is much less scary than you think. That is true of most things at Queens Sq. Being stuck on ward all day & night is worst thing. My top tips are to wear clothes that you do not need to put on/take off over your head as tube goes from front skull to machine. It’s a pain to use bathroom, shower etc carrying machine & not getting it wet as it’s electric. A bag to carry it around on your shoulder could be useful. Take things to entertain you as can be boring. Good luck. D
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@LivvySheep - I’m very sorry about your doctor situation. Have you asked Dr. G if he would send a referral for you to Mr. T? If he would be willing to do that, Mr. T might see you. You’ve been dealing with this situation for quite awhile now, & I hope you’re able to get in to see whomever will be the most help to you ASAP!
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Hi Isaac, by way of background on Mr T I know he has taken a decision that he will not treat patients who have already had treatment at Barcelona. Mr T did carry out some revision surgeries on patients from Barcelona in the past and patient outcomes from revisions were difficult. Hence the current policy he has. Fusion of C1/C2 is still very controversial topic amongst UK neurosurgeons & sadly most CCI patients are just given pain meds, told they are just anxious or given label of “functional neurological disorder” - shorthand in my opinion for “medics don’t know”. Wish I could paint a more positive picture of CCI in UK but I can’t. I’d try Queens Sq maybe for help. Getting JVs decompressed is almost as difficult but maybe a possible with time, determination and probably money (NHS help scarce).
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