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Eagle Syndrome - Online Support Group

Sound familiar?

Does anyone with internal jugular vein compression suffer with these symptoms?

woozy spacey head. Feels empty almost numb. Floaty head feeling like I’m separated from everything and high
derealisation
eyes feel like they are being sucked in
pulsing vision upon exertion
blocked popping ears
pulsatile tinnitus/whooshing like a Doppler
tv static tinnitus
transient hearing loss (mute beeep)
bouts of pulsing head pain on the slightest movement
visual snow
visual vertigo
visual disturbances
presyncope episodes

Nose leaking Clear fluid intermittently

I could go on :cry::woman_facepalming:t2:

I had pulsatile tinnitus, I felt like I was a bit drunk all the time; off balance, struggled to follow conversations, head & ear pressure, so some similar symptoms. Fluid leaking from your nose sounds like a CSF leak, you need to get that checked out if you’re not already (sorry, I know you’ve posted already, can’t remember quite where you’re up to!). The visual disturbances too- the optic nerve can get compressed when intracranial pressure gets high, & can get permanently damaged if not treated. An optician can check your eye pressures easily.
Hopefully if you’re able to get styloid compression confirmed, & have surgery the symptoms will resolve, mine improved alot after the first surgery, & went almost completely with the second. My doctor initially consider getting the Intracranial pressure checked & possibly lowering the pressure, but when he saw the compression of the veins he was happy to do the surgery as it was obvious what was causing the problem.

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Hi Jules.

Thanks for your message. Yes we sound bey similar.

These symptoms are hurrendous. I’m just so happy you saw so much improvement after your surgeries :heartbeat:

I have had my eyes checked a few times and although I don’t have paplidema, my neurologist has noted that my optic nerve sheaths are dilated.

I spoke to him the other day and he suggests after my Ctv having a nuclear scan with pledge lets to try and detect a cranial leak. However as my leak is intermittent, it may not show during that test.

My only worry is if my c1 is also involved in the compression. But hopefully the ctv will give a clearer picture of what’s going on

I did comment on another discussion back to you, you might not have seen it yet, but Mr Axon works with another consultant & between them they have treated at least one other member who had compression due to ES & an elongated C1 process. So if you see him & that is the issue, he’ll be able to refer you.

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Hi! I am so relieved to hear your neurologist is forward thinking with all of this for you. Just saw your comment about a potential Pledget study. Do you have the clear fluid from your nose at least once a day or every other day? If so it may be worth having the test. If you do not have fluid this often it might not.

My experience with that study is that it lasts for 3 full days with nuclear med imaging every day and the they remove the pledgets to be sent to lab. The imaging scans your entire torso (and head) to catch any CSF that you may be swallowed your throat vs coming out of your nose. Not sure what the test protocol is where you are.

If you do chose to go this route be sure to spend lots of time doing things that will provoke the fluid from your nose. It is a bit of a rough go but can be worth it if you and your neurologist agree you are a good candidate. The pledget study is the gold standard for best isolating a skull base CSF leak if it can not be visualized with in office scope by your ENT or by CT imaging for the sinus to identify bone thinning/loss. :purple_heart:

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JustBreathe,

Thank you, as always, for the great information you share w/ our forum members.

:blush:

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Thanks Jules. He works closely to dr Higgins.

I’m going to have to have the ctv done privately as they said it’s non life threatening, so nhs waiting list will be very long.

Hey Nicole.

Thanks for your lovely message and information.

Since cutting out caffeine and sleeping on a bed wedge my nose has hardly leaked. It was leaking at least once a day and has been leaking for around 18 months.

Under my specialist at their hospital they only do the nuclear test for 4 hours. So seems like a waste as even he said if your not actively leaking within that time frame, we won’t catch it.

I am aware sometimes in the night, like I’m swallowing fluid and left ear crackles and feels wet.

Is there anyway of possibly finding a skull base hole on a ct scan?

Thanks again

Natalie

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Good morning @Natty04

I would agree the Pledget would not likely yield much with your symptoms as they are now if the test is only 4 hours.

From my experience, having had many CT imaging testing for this, you need to work with a very experienced ENT and radiologist. My surgeon has been treating CSF leaks for 2 decades and has developed a specific sinus CT protocol in conjunction with a specific radiologist he has trained with. Many radiologist reading general CT sinus scans are not trained to look for this and indeed that was the case with me. The general CT I took to my surgeon the first day we met showed the hole but was not reported, which he pointed out in office. He immediately referred me for another CT and confirmed this as a more extensive defect…who you see matters.

Has Dr. Axon looked in your ears/nose with an in-office scope? Your symptoms with swallowing fluid and ear crackling/wet really sounds suspicious for a skull base leak.
Hopefully addressing the styloid/IJV will decrease the IIH enough for this to heal on its own. It is encouraging to hear the wedge and no caffeine has helped!

I feel for you in this, hang in there. Keep searching until you find the right doctor!

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Thanks Nicole as always! You are super supportive and helpful.

I agree with the nuclear test, 4 hours just isn’t enough.

Well Mr Axon and Dr Higgins are meant to be the best in this country, so hopefully they will be able to help me.

I have to have ctv private hopefully this month, as nhs waiting lists are extremely long currently. I will get copies of my ctv for further opinions.

Thanks once again :heartbeat:

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I did post on your other discussion, but in case you don’t see it I’ll repeat it- I wouldn’t pay privately for the VCT, as Mr Axon is quite specific about how he likes the CT to be done, & it’s a different view from the usual way. You don’t want to be paying for a test that he’ll want to repeat…

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Hi Jules. Thank you. The ctv I’m actually going to pay for is at Addenbrookes under Dr Axon and Dr Higgins :grin:

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