Brief back story/symptoms

Hi .
I am new. I have attached my panoramic xray earlier.

I was in a high speed whiplash accident 3.5 years ago.

3 months later I had a sudden episode of intense neck stiffness, bilateral occipital head pain and a feeling of being pulled or a balloon being filled up with water at the middle base of my skull.I could not move neck at all. I had gone to a chiro about a week before the onset of this. I went again after the onset and was told I had Occipital Neuralgia. Which I know now was not accurate.

I have not once had a day without pain since.

At the beginning of this I could lay down and my symptoms and pain would go away almost 100%. This component ended about 3 months into it and I no longer was able to obtain relief.

I also started with tinnitus which after a year and a half was accompanied with pulsatile tinnitus. It is miserable. Sounds like a flying saucer with my heart beat along with the normal 24/7 crickets and frying bacon sounds.

I have had episodes of extreme vertigo and I have some level of dizziness or instability every day.

I have been told by neurologist that I have chronic migraine, sudden onset daily migraine, myofascial pain syndrome, and of course the blanket ANXIETY!

I do not have a migraine! I have never described this as a migraine. It is a pain in my head and it is very effected my movement… a very strong cause and effect component.
About 8 months ago I started with extreme pain with I look up or side to side and when I lay down. I am miserable.

Went to new neuro… gave him all my symptoms, histology and timeline and what does he order? A sleep study. Unreal.

At the beginning of this painful journey my original neuro worked my up for a CSF leak which was the standard mri w/wo contrast. It was read normal… About 20-30 percent of folks with CSF leaks show negative on mri but my neuro just changed the diagnosis the the mentioned above.

I have had terrible reactions to meds and injections in my head which have done nothing for me. The only time that I have had a migraine is when I had a nerve block in my right occipital. Never again.

Now I have been reduced to a behavior issue as I do not want to take all of the meds… And I have a boat load… Meds are no substitute for appropriate differential diagnosis…

I was scheduled for a non targeted blood patch to see if any symptoms were relieved… about 4 days before the patch appointment my symptoms changed from feeling of low pressure to high pressure in a big way.

I called the Interventional Neuro radiologist and told the NP what had happened and we decided to cancel. The low pressure type symptoms came back about 3 months later.

I have always voiced my gut feeling that I do not have a leak but more like a blockage.

I got my old imaging out and there in an old MRV was a noted narrowing straight sinus. These images are not 3 years old. I have made another appointment to have another one done to see if stenosis or something else is going on. That is what it feels like…

Every morning my tinnitus screams at 3 am and I am up out of bed due to the annoying sound as well as the pain is just too much.

I have not heard of Eagles Syndrome before a couple of days ago and the symptoms seem to line up more than any condition I have researched to date… close tie with IIH.

When I asked my neuro about IIH she told me that I could not have it because I did not have papilledema … which is not accurate. Many people have IIH in the absence of paplilledema.

The worst symptom this week is when I try to look up for anything I get a jarring nerve pain at the base of my skull… a shock and its effects last for a long while…

I have many more symptoms… I am so tired of saying the same story to new doctors … I wrote everything down with the help of a friend as my cognitive abilities are very diminished… It amazes my how providers just do not read and or will not keep what I have written on file.

I feel like a am in a bowl of jello… more than a bobble doll.

This is scattered I know. It takes me every thing I have to write,

I cannot pick anything up off of the floor with out extreme pain, nor can I have a bowel movement or look down or up.

Thanks for reading… would be so happy to get some feed back… does this sound like ES??

Goose

Hi Goose,

I am so sorry for what you’ve gone through. Ignorant doctors can be unwittingly cruel. Your symptoms sound horrific & your symptoms absolutely point to vascular ES. The doctor to contact is Dr. Hepworth in Denver. He WILL help you. You may need to be persistent in trying to get through to his office to get an appt. as we’ve heard the office is currently short staffed. Unfortunately, the initial visit is in person w/ his NP, but he follows up w/ a video call not too long after your in person visit. If you do make an appt. w/ Dr. Hepworth, please ask to be put on his cancellation list. A number of our members have gotten their appts. moved to an earlier date that way.

•Dr. Edward Hepworth, IMMUNOe, 3150 E 3rd Ave, Denver, CO 80206 (303) 224-4711 http://www.immunoe.com

If you want to see someone in your state who may be more helpful than the doctors you’ve seen, you can try

•Dr. Peter Nakaji, 755 East McDowell Rd., Phoenix, AZ, 602-521-3201, Works w/ vascular ES, has also done a research paper about shaving C1 process as well as styloidectomy

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Thank you.

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Poor you, sounds grim & so hard to keep being fobbed off by doctors…
The symptoms sound like they could be from ES, although can’t say definitively without seeing a CT to look at the angle & length of your styloid processes…It certainly sounds like IH symptoms, & you’re right that not everyone has papilledema.
It might be an idea to try & get a CT done, with contrast ideally as you have vascular symptoms, and as @Isaiah_40_31 says, a referral to Dr Nakaji perhaps. If there is suspicion that it might not be vascular ES but possibly a stenosis elsewhere then Dr Hepworth’s team would be good to see. Perhaps any of the members who’ve seen him & been referred for further testing to look at possible other stenosis’ could chip in with doctors names…
I hope you can get some help soon, sending you a hug :hugs:

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Julies,

Thank you for answering… commenting.

Can a stenosis cause the pain at the base of the skull?

Thank you,

Goose

The skull base pain is most likely coming from your styloids. They can cause problems even if they aren’t elongated. Your whiplash injury could have caused a shift in the position of your cervical spine which in turn could change the position of your skull i.e. tipped more to right/left or anterior/posterior. Since the styloids extend from the mastoid process (part of the temporal bone) of the skull, any shift in skull position could place your styloids where they could be causing the symptoms you’re having.

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@Goose , we’re very empathetic about your pain. I have been diagnosed a year ago with eagle syndrome, the vascular type, stenosis bilaterally of the IJV. I have all the symptoms of IIH, was sent to an eye specialist, no papilledema, so was told I must have a chronic migraine condition also…
Still awaiting styloidectomy in Toronto.
Are there any recent papers/ articles regarding IIH without papilledema? Does anyone know?

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Hi and thank you.

Yes there are quite a few articles on IIH in the absence of papilledema.

I have past issues with my optic nerve and retina damage so I have an ophthalmologist. already in my corner.
My ophthalmologist has told me that he sees it many times people come in with classic IIH symptoms with no evidence of papilledema on exam.

There is an international organization on IIH. They have many many articles on this. If I can find it quickly, I will forward. Otherwise, i will send later this afternoon.

https://ihrfoundation.org/

This has a lot of articles about this topic.

Hang in there,

G

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Thanks for that link @Goose, I’m sure it’ll be really useful :smiley:

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@Goose, thanks for the info!

Goose!!!

Gosh sounds like you’re in a tough spot. Know what always floored me after leaving the countless doctor’s appointments… just how unoriginal their responses were. Ringing in the ears and pain in the neck? OK if its not a tumor you’ll just have to live with it. NEXT!

Oh your styloids are almost at your hyoid bone. Hmm interesting. Here’s some Xanax to take your mind off things. NEXTT!

Like common guys… do some digging. Do some research. HELP US.

It’s my view that the ones who don’t go the extra mile are the ones that survived Med School, Residency and the Boards based off book smarts alone with no real creative or empathy gene included in their biological configuration.

My Take:

From the outside looking in. It sounds like you have some pressure issues that might be caused by either some compression or deflation (stenosis). Stenosis is just a fancy word for blockage. This can be from a magnitude of causes internally and externally. Such as plaque buildup, poor or accelerated velocity, or even (you guessed it) a styloid pressing up against it from the outside!

You also seem to exhibit some form of neuropathy. Nerve damage so to say. That’s probably what those lighting bolts are. There are treatments for that that aren’t in pill form such as minimally invasive thermal surgery and laser treatments.

Tinnitus is an absolute jerk. He hangs around my part of town as well. I feel like the cure for it is always “just around the corner” but always fails to come to fruition sort of like Fusion Energy. Wait a second… we did just demonstrate Fusion Energy was possible a few months back! Maybe Tinnitus will be next. It goes Fusion Energy, who shot JFK, then Tinnitus. Wait wait. It goes Fusion Energy, Hair Restoration, then Tinnitus. Yeah.

Hope you feel better! (how many times have you heard that.)

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Thank you for your humorous post, @Loumango! With all the pain that fills up our posts, it’s always fun to have someone who can see a lighter side to all of this heavy stuff.

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Amen to that!

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Hey Goose,
My name is Merl, I’m a member of the modsupport team here on Ben’s Friends and IH is something I have LOTS of experience with. And I have to say your experiences with being misdiagnosed, given pseudo diagnosis and eventually it all being labelled as anxiety sounds eerily familiar. In other words, me too.

It took over 20years of increasing symptoms before they took it all seriously. I’m driving down the road one day and the lights went out, I couldn’t see. They did a scan and came out with the line ‘Ohh, look what we found…’ as if it was all something new. I wanted to scream. I’d been telling them ‘somethings just not right’, but it was easier for them to label me ‘crazy as a box of frogs’ than to admit they really had no clue.

I was given a diagnosis of IIH too, but the idea it was idiopathic was another pseudo diagnosis in my view, so I went investigating. At the time CT was the only intracranial scan publicly available. MRI was all very new and very few specialists had the authority to order one. The CT showed an anomaly, excess fluid, but not the cause. There were a few theories thrown around, one was a condition called chairi, which, in VERY basic terms is when the base of the brain blocks the aqueduct. But the scans did not support this theory. Another was an absorption issue. The brain produces around a pint (600ml) of CSF/day, if the body, brain and spinal cord don’t use or absorb it all, it builds up and can cause a condition called hydrocephalus (Water on the brain). The problem I had was that the hydrocephalus wasn’t the cause of my issues but rather a symptom of a bigger issue.

I was then referred to a bigger specialist, one with the MRI authority. The MRI showed that I had aqueductal stenosis or a narrowing of the aqueduct, but again my question was ‘what caused the stenosis?’ In my case it turned out that they found a growth, putting pressure on the wall of the aqueduct thus causing the narrowing and restricting the flow completely.

I completely agree. Often our information is simply taken as hearsay. As one Dr stated to me “Oh , well, that (my symptoms) just can’t be happening…” but it was. I started to document EVERYTHING, every scan, every test, every specialists. My medications, my symptoms and the time they occurred, my activity, etc. EVERYTHING. I showed the specialists all of the paperwork and they simply took no notice. Now, if another specialist documented those same symptoms, they listened then, Dr to Dr, but my word was hearsay. Another thing I found was that if they had a scan/images/test results confirming an issue, they would agree with each other, but otherwise they were very sceptical.

I’d also like to comment about your low/high pressure type symptoms returning. There is a condition often referred to as ‘positional hydrocephalus’. When I was laying down the CSF could drain somewhat, but when standing and gravity was pushing everything down, blocking the flow and allowing the pressure to build, then I’d become symptomatic, needing to laydown. This would allow the pressure to decrease, lessening my symptoms only to then build again as I stood up. I was going high, low, high, low… It was like a seesaw of symptoms. I tried to explain all of this to the medicos and the Dr looked at me as if I’d been partaking in hallucinogenic substances or something. Disbelief.

I must say when it comes to rare conditions such as ES, Chairi or hydrocephalus etc, etc it really can be a case of trial and error to find answers. Medicos often have a lot of information on the more common conditions but for anything outside of ‘common’ it can be a battle to find appropriate answers. We know this because we’ve lived it too, so come talk to us.

Merl from the Modsupport Team

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I just saw this message. Thank you for your feedback… It makes a lot of sense. There is so much to learn…

God bless!
G

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