Hi all, new here and still trying to get answers. I want to tell you a little about my story so I will try and be as brief as I can lol. I am about 2 years into my journey. When I first started getting symptoms I was referred to a Neurologist who did the tests he thought was needed. I had a head and neck MRI which then led them to do a lumbar puncture. I was then diagnosed with IIH and Cervical Spine Stenosis. It made sense at the time but after this my symptoms progressed and I started getting new ones that didn’t correlate with my diagnosis’. In the meantime my neuro retired so I was sent to a different one who, to put it bluntly, was rude, arrogant, dismissive and gaslit me into thinking I was mad. His diagnosis…migraines! I asked for another opinion and was referred again to another neuro, who the first one got to choose , same story… migraines! I paid private to see a neurosurgeon who again, had no idea what was wrong with me.
I have now paid privately for a CT scan bcos I cannot carry on being treated this way and having to put up with these horrible symptoms. Of course, the CT has come back clear! To me, I have always felt that my IIH was secondary to something else. I have read and read and read up on different things that could be causing my symptoms which obviously led me here! My symptoms front the start and up until now - head and face pressure, pressure behind the eyes, blurry and distorted vision, vertigo, dizziness, brain fog and confusion, anxiety, neck pain, jaw pain, ear pain, full ear feeling, ear leaking, pulsating tinnitus that is worse with head and neck movements, headaches for the last 5 months continuously, swallowing difficulties, feeling of food stuck, strangulation feeling, tender SCMs, tingling and numbness in my face, lips, tongue and back of head, intolerance to heat and body temperature changes, cramping and tightness in my calves, heavy weighted legs, extreme pain at base of skull. I’m sure there are more but these are the ones I can think of.
I would really appreciate your thoughts on my scan as I second guess everything now. Thank you in advance
Hi & welcome!
Sadly you’re not the only one who’s been gaslit, ignored, dismissed etc about your symptoms, but I’m glad that you’ve been able to do your own research and to find out a diagnosis for yourself!
Your symptoms of swallowing difficulty, strangulating feeling, things getting stuck are classic ES symptoms, numbness & tingling indicate maybe the trigeminal nerve or facial nerve being compressed. Pain in the base of skull is common, it could potentially be the occipital nerve being compressed by tight muscles, or maybe from the styloids? The vagus nerve can be compressed, I’m not sure if that could cause the heat intolerance etc. The styloids shouldn’t affect the legs, but other members have found strange symptoms in the lower back & below…
Obviously we’re not doctors, but looking at your scans there’s clear compression of the IJV on your left side between the styloid and the C1 process. Also on the right, it looks as though the left is maybe the dominant, larger IJV so compression of that would have more of an impact. The styloids are longer than average, quite wide at the top, & both quite pointy at the bottom end so all those factors can cause symptoms. Your left side looks like there could be a bit of calcification on the stylo-hyoid ligament making it longer, although whether it’s that or a long styloid doesn’t matter… The hyoid bone can’t be seen very clearly, but in the image of your right side it does look as if it could be quite close to blood vessels so could cause symptoms- the strangulating feeling is often seen with hyoid bone syndrome or calcifications on the lower end of the stylo-hyoid ligament. I can’t see enough of your neck to judge whether you have military neck- a loss of the normal curve of the neck- it looks a little straight on image 3523 but that could be the angle it’s taken…
As for what to do next, that’s a tricky one! Obviously the NHS waiting times are long- are you able to afford private consultations or treatment? I did go through the best UK doctors in @Blodyn 's post, here’s a link:
But certainly I think you’re on the right track with ES!
Hi Jules, thank you so much for replying! It is so validating for someone to listen and believe you. I did send you a message earlier bcos I was having trouble finding where to post so please ignore that!
With regard to the doctors, do they go off of how bad it looks on imaging or how bad your symptoms are? I only ask bcos to me, the compression doesn’t look that bad compared to others I have seen, although my symptoms are. I am so fearful of going to a specialist in case I am rejected or made to feel mad again. It has caused me so much paranoia now and I get so anxious at appointments.
Although the compression is on the left, my Pulsatile tinnitus is on the right. Is this bcos the right side is working harder bcos of the compression? Or I do wonder if there could be compression on the right also as the space between the veins and Styloid/C1 is very narrow and my symptoms are worse when I move my head in certain positions.
Have you come across anyone that has leaking from there ears? This is another symptom I have and was concerned I could have a CSF leak due to the IIH. If this is a symptom of Eagles, however, then that would make sense! Also, do you think the headaches could be due to the compression? They seem to relieve when I lay down which is why I thought of a leak but could it be bcos of the compression?
I do have Bupa so could see a doctor privately. I did read your post you sent me the link to and it looks as though Axon doesn’t deal with C1 or Hyoid, is that right? If there is calcification on the Hyoid ligament, that might explain another symptom I have which is my neck is very very itchy from my jaw bone down to the Hyoid. So much so that it is really red and sore. Not sure if this connected or just a coincidence. If there is calcification of the Hyoid ligament, would this mean I would need to see one doctor for the Styloids/compression and another for the Hyoid problem or would that likely resolve with removing the styloids?
Sorry for long post lol. I am just so desperate for answers now. It’s been a really difficult time. This page is amazing though and how much you help people
I think you do have compression on your right too, so that could explain the pulsatile tinnitus on that side…I think the doctors who are knowledgeable with ES probably would look at the scans & evaluate your symptoms too, I would hope! The leaking ears does sound as if it could be CSF, some members have had leaks from high pressure. Apparently you can get it tested to see if it is if you can collect it! Headaches are common with intracranial hypertension, yes, but also those & migraines are common with ES too. If you haven’t tried sleeping propped up at night then see if you can, it helps with the pressure…unusual that they are relieved laying down, but it could be that you’re alternating between high & low pressure- high pressure causing a leak, then because of the leak you go into slightly low pressure giving you a headache? Other members have experienced this. Rotten for you
Not sure about the itchiness on your neck! Maybe a weird nerve thing? Have a look in the past discussions, here’s a link to one mention I found: Continue to have symptoms 2 years after - #17 by mikeg
Great that you have BUPA ! I’m not sure which of the doctors you’d be able to see with that; Mr Axon is very good & experienced with IJV compression, plus has done lots of research into pulsatile tinnitus so is very interested in that. But no, he doesn’t do C1 shaves or remove the ligament if it’s calcified, I can’t see any calcification on yours apart from the bit connected to the styloid which wouldn’t be an issue…The hyoid might not be an issue, can’t see enough to know…
If none of the doctors on our list are available with Bupa, maybe search for a head & neck neurovascular surgeon as they’re used to working in the same area? You could always ring their secretary to see if they are aware of ES?
Unfortunately there isn’t enough for me to collect
The headaches I am experiencing are different to the pressure type headaches I get with the IIH. As you said, that would always feel worse when laying down, however, I do wonder if I am in low pressure due to it feeling better when I am flat. Unless it is due to the compression and the jugulars opening up when I lay down I have requested an MRI to check for any evidence of a leak but I am aware that it doesn’t always show up on imaging. I have read up a little on Rupert Obholzer who seems to have a speciality in CSF leaks but you don’t mention him much on here. Is he also a specialist ES surgeon like Axon?
Ah yes that makes sense! I did wonder if the itching could be nerve related bcos it almost feels like a crawling feeling under my skin. Very annoying! Lol.
I think from looking previously that all 3 surgeons do accept Bupa which is reassuring. I do think I may need my C1 shaving though from the images it looks to be quite involved. Would that have to be Mr Timothy? I think I saw him mentioned on your post to another member.
Thank you again for replying. It’s really helpful and is so nice to be heard!
@Anon280107 - I agree with everything @Jules has said about what she sees in your scan images. I’ve annotated two of them. It seems you know what your looking at but just in case…
@Isaiah_40_31 thank you for confirming it’s very helpful. I second guess everything now after being treated like I’m crazy or a Hypochondriac! My symptoms do get worse when I turn my head or look up and down. I’m just trying to work out who would be the best person to see as my C1 is involved!
@Isaiah_40_31 also looking at the images, my C1 seems to be higher and closer to the skull on the right side than the left. I’m wondering if it might be misaligned slightly. I do have Stenosis of the Cervical Spine also.
Hi Anon, so sorry you’re having all those symptoms and difficulty medically getting to the bottom of it all. It seems one of those areas where various specialities cross-over & being rarer conditiont there are far fewer doctors knowledgeable to get to the nitty gritty of it all and be capable of solving things.
I’m also in the middle of trying to have things properly assessed, but - on your point about the awful heads and pressure (including eyes, numbness and all that) - I had about 18 months of very similar symptoms (on top of the rest) including episodes coming on by simply, say, bending over, or carrying something, or tiny exertions, where the legs would go weak as if about to collapse, head awful about to explode, tachycardia way up & feeling like having a thrombo or stroke (well, as I’d imagine it). Nothing was diagnosed. I still have minor episodes, but not those worst ones and not the sledgehammer headpains and bad head pain in the night etc. In my other ramblings recently on here, I’d wondered if it was to do with the styloid (or hyoid) compressing on the carotid, maybe partly dissecting it and causing those symptoms, and then it re-healing itself, which they say can happen… Who knows, but does sound as if you have various compressions going on. Wish there were clear answers and obvious specialists to act on them! Your symptoms sound awful, worse than mine, though to me mine feel bad enough! Also have IJV compression between C1 and right styloid (having MRA scan to check arterial situation soon too) & suspecting hyoid issue & possible cervical instability, but the mind wanders a bit on, whatever the situation, if it needs attention, then Who to do What, Where and When & if more than one procedure needed and all that. All a bit convoluted. Thankfully, I don’t have leakage etc. Sincerely hope you can progress with things and get the right answers and solutions. It’s great we’re on this forum to share everything and learn more & have moral support too - it really is wonderful. All the very best. Hope to hear you back here with some positive developments, go well
Since you are requesting an MRI see if you can convince them you need a Fiesta, fiesta -c, or 3d Ciss. I know it is the UK but you should at least try to make a case for it. You could have a tangled mess in there especially near the jugular foramen.
To do this you may have to educate Doctor to what kind of scan it is which will take some research. I give you about a 5 percent chance of being successful with this but you might get a miracle order.
Also, because you are dealing with a vascular issue use it as an excuse to try to get quicker treatment.
The other thing to look into is if you can find a place to self order if you pay or if Dr will order if you pay. Then search for one of these affordable MRI places. the affordable cheap ones near me dont do it but there are places in my locale that do the scan. I am going to push for one. I am in a little holding pattern at the moment.
It would be interesting to ask Dr Hepworth how many people who have vascular Eagles end up not having nerve entanglement issues. I would think most have a tangled mess. I will ask him that question when i eventually get an appointment.
Good that you can chose to see any of the doctors with Bupa…re Dr Obholzer, his name has been mentioned on here, I think someone had heard about him through a FB ES group, but I don’t think any of our members who have had surgery with him. One of our members saw him last summer, (privately) but he would only do surgery if his radiologist I believe confirmed it by doing an injection into the area, presumably lignocaine, as this is often used to diagnose ES. She was not put forward for surgery, so up to you whether you see him or not!
As far as I’m aware Mr Timothy doesn’t do the ES surgery, but has done C1 shaves, it might be worth ringing his office to confirm that though?
@Anon280107 - Regarding position of your C1, it’s hard to tell whether it’s the position of your head in the images that makes it look like C1 is slightly tilted or if it actually is. Seeing an image that shows more of C1 would be helpful, but you may not have that if your CT was all done from the front. I had a CTA that showed my C1 from behind, & it was visibly shifted to the left. I believe this happened as the result of a cycling accident where I went over my handlebars & landed on asphalt on the right side of my face. I didn’t have vascular symptoms prior to the cycling accident but didn’t get the scan till almost 7 years later so can’t say definitively that’s what caused my C1 to shift.
@Isaiah_40_31 Thank you for sharing your image that’s helpful. Sounds very painful tho! Have you had any surgery to correct it?
Yes mine was done from the front, the only image I have is below, I cannot see this in 3d though. To me, my head/neck looks offset but I don’t really know what I’m talking about with all this!
@Blodyn Thank you for your reply. I am sorry to hear you have had such a tough time too. It just feels like no one has a clue about any of it doesn’t it lol. Have you managed to get any answers for any of your symptoms? Are you diagnosed with any thing yet?
Are you UK based? I was concerned that if it was my C1 more involved then my Styloids, than an Eagle specialist might not see me so a little confused at where to go next
I have contacted one today who is going to have a look at my scans and let me know if they are able to help me. I’m hoping the leaking isn’t a ‘leak’ lol, I don’t really want to have that surgery if it is needed
Thank you. I will keep people informed and hopefully a good outcome I wish you all the best too and I hope your MRA goes ok and you get the answers you are looking for
@JugularEagle I haven’t a clue what that is I have never heard of that scan before. What does it look at, the nerves?
I agree with you about the tangled mess. I have so many different nerve pains in different places so like you said, I think most people with it would likely have a lot of nerve compression/issues.
It’s good that you are seeing Hepworth. I’ve heard lots of positive things about him. How far along are you in your journey? Have you had surgery?
@Jules yes I did hear that about the injections being used as a diagnostic tool. I think I was just drawn to him bcos of his speciality in CSF leak repair. If I do end up seeing him, I will let you know how it goes
Thank you for your recommendation of Mr Timothy, I will definitely bear him in mind if i end up needing the C1 shave
I see what you mean about your head being off center. I think there are a number of us who tend to lean our heads slightly to one side or another. I don’t think that has to do w/ ES as much as it’s a muscle imbalance as I see it’s not uncommon when I look at people in public places & on the internet.
I haven’t had anything done about my C1 but I did just have my left IJV decompressed because the C1 shift to the left caused IJV compression on that side. My C1 has been shifted for at least 9 years so I’m not sure it would be a good idea to try to move it back in place now as it might cause new problems & not help that much.
, same story… migraines! I paid private to see a neurosurgeon who again, had no idea what was wrong with me.
I have requested an MRI to check for any evidence of a leak but I am aware that it doesn’t always show up on imaging. I have read up a little on Rupert Obholzer who seems to have a speciality in CSF leaks but you don’t mention him much on here. Is he also a specialist ES surgeon like Axon?
Have you had any surgery to correct it?
I wish you all the best too and I hope your MRA goes ok and you get the answers you are looking for