An update: after expecting nothing and usually not being disappointed on that score; I had a max fax appointment yesterday following the mri head with contrast I had done a couple of weeks before. Amazingly something was found and I feel kind of vindicated and relieved to have it accepted that it is not all in my mind or psychosomatic. Basically, on BOTH sides of my head, blood vessels are too close to the trigeminal nerve and are pressing on it causing terrific pain. After 3 years I have, at least a partial answer.
To complicate things a bit more, I asked about the CT petrous bones I had had done under ENT, the one where the results that there was nothing wrong with my ears, came to me by magic before the scan had even been reported on! Me cynical?
The max fax surgeon brought this briefly up on the screen and admitted the styloid processes (both sides) looked elongated but there was nothing else said about that or their length or condition. I could see they were elongated in that brief peep at the screen. Meanwhile the copies I asked for of all my above-neck scans are still awaited. I also have quite bad degenerative changes at C2. All of these alone or in combination are probably muddying the waters.
So dear community, I may or may not have Eagle but I will hang around with you for a bit longer until I have some more answers such as why the fevers, rigors, sore throat etc get better on antibiotics (more than coincidence after 12 courses). I suspect that the elephant in the room here is my old back left molar - or should I say tusk .
So for now, I await my scans, await referral to a neurosurgeon for further opinion, will try gabapentin to see if I can at least tolerate it.
Good that your appt was fairly productive, even if no definite answersâŚlike you say, some other things added in to a possible ES diagnosisâŚI can find out the name of a Neurosurgeon if you do want to look further into the Trigeminal Neuralgia, my aunt has just had surgery for this at Southampton or Bournemouth hospital, heâs supposed to be really good? Hopefully the Gabapentin will help, if not there are other medications which can help. One of our members @1speechpick had MVD surgery after being diagnosed with the same & has had a bit of a bumpy journeyâŚ
We are very glad to have you here for a bit longer though! I hope that things improve for you soon
Thanks Jules, it is Southampton where Iâm being referred as Bournemouth and Poole do not do neurosurgery. Iâve tried tegretol recently and was unable to tolerate even a small dose so I am sceptical but will try anything! Someone we know had MVD surgery at Southampton with great success but he is only in his thirties (his trigeminal neuralgia was difficult to diagnose for a while). X
Iâve got hold of the CT report, pic of it here- seems the CT cervical spine I had done last year, DID shown elongated styloids but this was not reported on as they were concerned to exclude a # of C2. I canât think they would have shortened over the year, only stayed the same or got worse. The ENT consultant is now offering to refer me to a more experienced colleague as he is acknowledging Eagle syndrome.
All this leaves me with a dilemma: is it Eagle, is it the bilateral compression of the trigeminal nerve, is it both? Surgeries for both are not without risk! I also have severe degeneration at C2 so am left with more questions and a probable dilemma. Itâs a relief to get some answers other than psychological or psychosomatic fob offs for the diabolical pain.
Not what Iâd call mildly elongated, at nearly 4cms! But very glad that youâve been vindicated with this & the TN issueâŚ
It is a difficult decision as to what to pursue first, as both the blood vessels compressing the TN and/ or the styloid could both cause the pain⌠@1speechpick I think I mentioned had MVD surgery but has had a very rough time after being diagnosed similarly to you. You could try sending a private message? Equally I remember a while back one of our members opting for MVD surgery & it didnât help at all, so she went on to have the styloids removed. The issues with C2 degeneration are difficult too, I donât know if it would affect you but some of the members with Cervical instability have found this can worsen after ES surgery.
Have you asked who to be referred to? Given Mr Axonâs wait times, it might be an idea to see Mr Hughes in London? And hopefully you wonât have too long a wait to see the Neuro near you for the TN? I think this is the chap who my aunt had surgery for her TN with; she speaks highly of him & the surgery she had does seem to have helped (after a rough recovery) Mr Vajramani is a neurosurgeon, with sub-specialty interests in functional neurosurgery and spinal neurosurgery. - University Hospital Southampton (uhs.nhs.uk)
Praying that you make the right decisions for your care
Thank you so much Jules- I cannot make any decisions until I have more information and the ent/max fax/radiology communicate with one another. I donât even know if the same surgeon does both MVD and Eagles. Itâs been like pulling hensâ teeth trying to get information up until now.
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