@Jules xx
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On GCA pls insist you get PET scan of your affected temple- it is the definitive test
They can do biopsy but that is oainful & can be hit & miss.
If GP does not sort then see a consultant (nhs ir private) who can refer you. Ask for urgent referral as gca
If not gca what is it?
I advise you visit opthomologist asap for eye tests. You can go to walk in nhs clinics at Westin Hospital on A40 near Baker St or Prince Charles Eye clinic in Windsor for urgent free diagnostic tests.
If its both brain & eyes involved then see neuro opthomology experts at Moorfields- either on nhs or privately.
Doing this shoukd help you get a rapid/accurate diagnosis I hope. Take care.d
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Hi @Isaiah_40_31 and @Jules - saw neuro surgeon yesterday and things not great, c1 and 2 now have no gap plus large bone spur on back of them. He wants me to have a SPECT scan and as wait long in nhs, will have to go private to London. Feeling worse each day and odd attacks not just of the unbearable pain which is always there, but cotton wool rising into my head feeling, unsteadiness and my SAO2 drops to 82 and pulse rises, like no O2 in my head. AE as usual no help other than ruling out a clot or bleed. I’ll keep you updated. Feeling very let down with our local services and how I’ve been poo pooed for so long to get to this level of deterioration.
@Mcwelly - Your symptoms sound awful & the O2 saturation drops must be very uncomfortable as well as a bit scary. I experienced a similar symptom before my styloidectomies but felt like it was a blood pressure drop (more likely O2 drop). When that happened, my heart would race to try to get more O2 into my brain which would make me feel like I was going to pass out. I’d forgotten about that until you just mentioned your symptoms. I blamed my vagus nerve as the instigator, but it could have had a vascular component.
The feeling in your head sure sounds like it could be related to IJV compression. With the new scan information you have & diagnosis, have you tried to get another appointment w/ Mr. Hughes or Mr. Axon? I know they both “blew you off”, but you’re more “armed & dangerous” now & have a solid case they can’t deny.
I hope you can get the SPECT scan soon. It’s ashame that those who’ve worked in the medical field in the UK seem to get worse treatment than others who haven’t. I just don’t understand that!
I will pray for you w/ your new diagnosis. Hoping you can get that scan soon & can get the ES help you should have had a couple of years ago. 
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Well, at least the Neuro didn’t fob you off, but so frustrating to need another scan and to be feeling so rough , I feel for you. I’m sorry, I can’t remember but did we ever talk about blood thinners, have you tried those? If it is IJV compression it might help? Sorry if it’s been suggested before!
Do you have to travel far for the scan, I’ve not heard of that before, & costly too, no doubt 
Praying you’ll get some answers and treatment, & sending you hugs :pray
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Hi @Jules - yes expensive and to be honest,!I can’t afford to wait 6 mths! I’m getting some other very horrible symptoms which may or may not be wholly or partly caused by both ES and the severe inflammation of c1/2. The neurosurgeon is a highly skilled skull base surgeon and one of few who go in at c/1/2 so at the moment all I can hope for is at least some pain relief after the scans reveal what’s what. I have wasted or had wasted so much of my time and health locally, restricted, gaslighted, poo pooed, missed etc so I’m hoping and praying 
. Without this support group I would never have known where to start, how to look at scans and even what abnormal styloids looked like- for that,‘I am thankful indeed
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Will be good to have another knowledgeable surgeon to add to our list if he’s helpful…see how it goes…love & hugs to you, thinking of you
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I will go to London, not too far and train services are good. I’ve not tried blood thinners or been offered any but I’ve started Korean ginseng which I believe may have slight blood thinning properties? I asked gp about other pain killers used for say migraines, but he said no they wouldn’t work! I manage on topical ibuprofen, CBD balm, heat pads and opiates and paracetamol.
Have you tried lidocaine patches, @McWelly? They come in both OTC & Rx strengths. Quite a number of our members have found them helpful in reducing pain.
Can you request an Rx for a blood thinner? Plavix & Brillinta have been most often mentioned in the US.
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Isaiah_40_31 https://forum.livingwitheagle.org/u/isaiah_40_31
March 2Have you tried lidocaine patches, @McWelly
https://forum.livingwitheagle.org/u/mcwelly? They come in both OTC & Rx
strengths. Quite a number of our members have found them helpful in
reducing pain.Can you request an Rx for a blood thinner? Plavix & Brillinta have been
most often mentioned in the US.hi @isaiah_40_31 - over here we can’t usually ask for anything!
Lignocaine patches? I’m not sure if we have them as patches in the UK but
funny enough, I buy Anbusol liquid (local lignocaine used for oral and
mucosal mouth ulcers etc and put it into a small spray bottle to spray into
the tonsil area plus rub it into cheek and occiput area. The main
ingredient is alcohol - 96% so not much lignocaine I know but better than
nowt! Patches gave to be put in the area of pain? My whole occiput and
head plus deep inner ear pain are worse, how would a patch work?
https://forum.livingwitheagle.org/t/post-surgery-vision-issues/16973/69
Visit Topic
@McWelly - It might be worth asking your neurosurgeon about the patches. If they’re available, he should know where you can get them or perhaps could Rx them for you as well as a blood thinner if you’re able to suggest you know of others w/ a similar diagnosis who’ve benefitted from that?
Yes patches need to be put in the area of pain so wouldn’t help your inner ear but could be useful for your cheek & occiput. Have you tried heat on your ear to see if that helps relieve the pain at all? If you get the lidocaine/lignocaine patches, you could always try putting one on your ear to see if it helps at a deeper level than just superficially.
That’s a good bit of advice @Isaiah_40_31 - don’t know for sure I have compression but I suspect it. Once I’ve had the scan, I guess I’ll have another appointment with neurosurgeon to discuss treatment plan and I can ask him about various other options (if any) for headaches in particular. I’m not sure why gp so adamant that migraine meds no good? I did read that paracetamol (tyelenol) and lidocaine can gave an interaction with haemoglobin bring affected, have you heard of this? I did read have some macro anaemia despite being on b12 injections.
@PatientD posted about getting blood thinners in the UK:
Plavix Prescription UK - Symptoms and Treatments - Living with Eagle
So it is possible if the neuro thinks it’s possibly helpful. She did try aspirin too, that may help a bit but obviously you’d need to be careful if you have stomach issues at all, & check any drug interactions…
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Hi @Jules - just saw these posts so thank you for that. I can’t take any NSAIDs due to reflux and aspirin also contra indicated. I’ll ask the consultant as gp just sits on the fence and suggests the same old meds that didn’t work/couldnt take the first time round! ie amitriptyline which even they admit doesn’t work for 1 in 10. I can ask about lignocaine patches too as my solution of using Anbesol liquid as a spray is not its normal use.
When I get my “funny” turn? Cotton wool head, my SA02 drops to 75-84% and HR is erratic for a short while - vagal involvement?? Is this a sign of compression?
Unfortunately lidocaine patches are exclusively a US product. I haven’t come across them anywhere else in the world and that’s what a pharmacist told me. Boo hiss.
Some places you can get Emla cream, which is also a numbing agent and is often available over the counter. It’s worth experimenting because it is a very strong product, and depending on the area of use it is said to be stronger than lidocaine. You rub some on the skin and cover it with a dermal patch.
Why haven’t I tried this forJC’s FBS!? Off to the pharmacy…
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@Mcwelly - Your “cotton/wool head” can be a sign of compression, but since it only occurs when you get the O2 drops & erratic HR, I’d guess it’s more vagal in origin. Again, I had a similar symptom which stopped after I had my first styloidectomy. It took a few months, but it did eventually go away.
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@Val7426 - Interesting about the lidocaine patches. I had no idea. I thought I recalled some of our UK members had gotten them there, but I’m could be wrong.
I hope the Emla cream REALLY helps reduce JC’s first bite pain.
To be fair I haven’t checked the UK and it was a Canadian pharmacist, so upon reflection the chances for error are high. I was told they don’t like to compound lidocaine and the US was one of the only unregulated places where you could get more than 2% (?) over the counter. Maybe they were mistaken. Might be worth asking again, or even ordering some patches to WA and driving down to pick them up.
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@Val7426 - Here you go! Amazon.com : lidocaine patches
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Good morning @Isaiah_40_31 - yes you could be right - vagal - as could account for other weird things like sudden wheezing, vasovagals, GI issues (including reflux?).
I found this article on natural anti coagulants/ anti platelets interesting as many of these are taken in our normal diets and supplements. I could try some ginkgo and dong quai? Anyone else found benefit?
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