New Here ... not diagnosed yet UK

[Natty04]

Thank you for your kind words. Until I speak with mr axon I don’t think I will believe it just because I’ve had so many dead ends

Once I had my Skype session,
Kjetil wrote me some notes with the findings. I then passed it on to dr Ellis who looked at my imaging again and agreed with findings of optic nerve sheath dilation etc

I then explored the jugular vein compression from Kjetil’s findings and that’s when I came across eagles and mr axon etc

I have spoken to Dr Carroll via email before.
He is a very nice man. Gave me some opinions on my images.

Good luck and keep on going

[Natty04]

Hey @Isaiah_40_31 I don’t know why but I discount the left side as normal and just focus on the right side. But yes you are right both sides are thick and causing bilateral compression. Although right side is definitely worse and also being my dominant jugular I’m hoping he would remove that side first.

I also have some suspicious cranial leak/bony defect areas from my scans. Not going to mention this to Mr Axon yet as want to sort the jugular stuff out first.

I’m so glad it’s water under the bridge now and they are out

[Peony]

thanks Natty, so when you took the notes to Dr Ellis, he was fine that you had found this second opinion yourself, and he ’ approved’ of the source ie Kyetil, no problems?
Yes, someone had mentioned CSF leaks and the link for Dr carroll, amazing how he gives his email at the end of the talk! and so passionate to help people, really restored us to know there are some wonderful practioners in the world. Good to know you thought he was lovely, it doesnt seem the problem we have at the moment, but worth knowing about. Do you get more headache lying flat? hard one if you have csf as that can help flat, but vascular es would be worse flat??

[Peony]

Natty have quite a few questions if you dont mind, am so interested how did you find Kjetil, was it a recommendation on another forum or yourself researching? also how did you come across Dr Carroll, through the csf leak forum? Another member on the headache group posted a link to his video which I watched, and thought he was so inspiring, particularly that he was working on imanging not seeing all the leaks he was getting from the POTS clinic.

So was it on Kjetil’s imaging that your leaks were seen? How did you get to Dr Ellis, your own research and asked to go to him? So interesting that Dr Ellis agreed with Kjetil and your neurol about your optic dilating, but the opthalmology didnt!

You asked if my daughter is better lying down, NO! that has been one of the worst symptoms, she hasnt been able to lie flat since her headache began, sleeps literally sitting up with bean bag sausage wrapped round to keep her up; also never been able to bend forward; any exertion ( so has had to walk slowly) all made her headache like going to burst, this all went even worse a year ago, (after going to the dentist for a checkup)and she started to get pain turning her head and feels sick, struggled to walk up stairs, even walking really slowly now is terrible, so something started to go worse and has really stuck there. She also developed really bad back ache, after her headache started, they havent got to the bottom, at the moment saying ’ central sensitisation’ due to chronic headache. We are waiting for a rhuematology appointment.

Interestingly after looking in the resources here, how the styloids might crystalise? there was a reference to systemic conditions …( some medical word I can’t remember) I clicked through and it came to ankolysing spondylatis as a possible systemic cause of crystalising, . AS is an arthiritis of the spine, hips more common in boys, but is in girls also and can start in your teens, so be very interested to see if that( or likely others we have not heard of) can be considered. She has to have a boiling hot water bottle all the time on her back, just to cope.
Our thinking possibly is, thinking out of the box; could be a virus( she had about 6 months before her headache, then started aching in joints which has stayed)so it could have set off this arthritis; and if she has ES vascular, then the vagus nerve could be suffering, which has let alot of inflammation happen and run riot, and given the persisitng headache, as well as pinching a vein/ artery of the ESV.
So the more we find, it actually means we can think back wards, up to now everyone seemed to focus on the headache, and she just isnt getting better, and medicines giving more headache, but not taking all the other symptoms and seeing if they are linked - until this prof neurology we now have who is starting to try and join up
So grateful of all of you, and all insights trully welcomed
Here’s hoping …

[Mod_support]

Hey Peony,
I’m Merl from the Modsupport team. You’ve been given some great information here by all the members involved, but I have to agree wholeheartedly with something Jules has said above “…be prepared to go through the whole story again I’m afraid…I wrote down all my main symptoms, plus all the testing…”

For those of us unlucky enough to have to manage a rare condition this repeating, repeating and rep… happens a LOT. I have learnt to keep my own records of symptoms, medications, tests, scans, medical treatments, ‘alternative treatments’ with every dr, professor and wizard I’ve seen and their reports. Document it all. Sometimes our verbal information is seen as hearsay, if it’s documented, it’s no longer hearsay. It can also help show a pattern over time, if there is one.

“…doctors can be intimidating…” to the extreme. Some people tend to place some dr’s on a pedestal and some dr’s think they deserve that pedestal, placing themselves above the rest of us. In the past I have questioned their attitudes (which they do not like), they do deserve respect, but so do we the patients. Due to this I tend to stand my ground. We are not in the position we are by choice, so the idea they can pass judgement because we choose to be here is arrogance personified and I won’t play that game anymore. Initially, sure, I was ‘Yes sir. No sir…’ following every word they said, but after many years of medical drama I gave up playing their game. I deserve respect too… …in fact, no. I demand it. Just like they do.

Merl from the Modsupport Team

[Peony]

Thank you so much Merl for popping up and sending this, its absolutely what we need a the moment. We were really thinking where have we gone wrong, why are we being dismissed so readily by so many. We will straighten up again, and take our place as you say - none of us are because we chose to, we unfortunately are by happen chance and genes more likely… thanks so much for these words of strength

[Peony]

thank you Merl!

[Natty04]

Hi Peony

i am on a lot of groups for csf leaks, cranial leaks and others. So over the years of researching and speaking to people i have been recommended Dr Ellis and mr Axon etc

A few people i know have used Larsen when they keep getting “normal” imaging results as he is known for finding the subtle clues and creating the clinical picture. Kjetil said to me that he saw suspicious leak sites in the cranium however they are secondary and i must address the venous outflow issues first, other wise with high pressure the leak will keep opening up. He said there is a good chance that once the pressure issues are addressed, that the leaks should hopefully heal by themselves. That is not always the case thou and further intervention is necessary

I am no medical professional but seems like your daughter is in high pressure, given the fact that she feels more comfortable sleeping elevated and the spine pain can also be from high pressure. Would they consider doing an lumbar puncture to check her opening pressure?

Its not ideal but may give more of an idea of what is going on

I am still fairly new to eagles syndrome myself and as i said i didnt even know what styloids were nevermind that i had quite elongated/thick one’s causing compression

As the others have said i have also had to repeat my whole story each time to each new consultant. But it is important for them to gain the whole picture from the horses mouth so to speak

Keep digging and you will get there

[Peony]

thanks Natty, lumbar puncture is tricky as her head is so bad, it can make it worse, and also she has central sensitisation, so even acupuncture, she had to stop too painful. So interesting he could see the possible leaks, and makes such sense to sort the high pressure from the venous out flow,
goodness, we are miracle wonders, the human body - we used to take all this for granted! Our neurol emailed this afternoon - even on his leave week! to check how the upright mri booking is going feel very blessed for having him stand by us, was amazed to hear from him today

[Natty04]

im sorry to hear that! Ive never had an LP and hoping i dont have to have one.

I would definitely recommend Kjetil if you come to a dead end but hopefully not.

That is so nice to hear that you have a good neuro backing you. That is exactly what we need the emotional support and compassion as well as the medical stuff.

As i said my mri was reported on as normal and my mrv was unremarkable. At this point i had lost all hope so booked with Kjetil who said it is far from normal, you have signs of high pressure and quite significant jugular vein compression. There was no mention of this in any of my reports. My advice would be to keep getting second, third opinions if needs be. One consultant or radiologist saying everything is normal isnt the gold standard. And if i had listened and accepted my fait of these awful symptoms i would never of found out about my styloids etc

[Isaiah_40_31]

Hi Natty04,

The gaps in your skull are interesting. Has anyone suggested they might be problematic? If not, your body has likely lived w/ them so long, it doesn’t recognize them as abnormal, & I wouldn’t worry about them. We have a saying in the US - “If it ain’t broke, don’t fix it.” There’s much to be said for that approach, however, if there’s any possibility they’re somehow contributing to your symptoms, that would be worth looking into. A maxillofacial surgeon might be the specialty to explore the issue with. That said, I do agree that dealing with one thing at a time is the best approach. See what you learn from Mr. Axon regarding ES & take care of that then on to the next thing.

[Natty04]

Thanks Isaiah. I feel broken all over and too late to be fixed! Ha ha just having a down day. So exhausted from this now and having two little energetic boys is just to much and working. Having a feeling sorry for myself day

So I leak clear fluid intermittently from my nose. So I was looking for any areas or bony defects to explain it. Will deal with the jugular compression first.

I have a question. With both of my jugulars being compressed by styloids and c1 can it cause a lot of symptoms? Can the symptoms get worse and new symptoms start to establish if left untreated. For instance my eyes never pulsed to begin with, my nose didn’t start leaking for the first 6 months or the whooshing or my sucked in head and eyes with my brain feeling numb and pulled in.

I kind of just hope that this is it and I don’t have any other issues going on. I am praying that once/hopefully good blood flow has been restored that I will feel human again and not so spaced out.

So sorry to vent it’s just one of those days where I feel scared that I’m going to be stuck like this forever

[Isaiah_40_31]

Hi Natty04,

I can’t imagine having to parent young children + a job & having to deal w/ ES & a potential CSF leak. You’re pretty amazing as your posts seem to indicate you’re managing all this pretty gracefully. Please vent here! We all understand.

With ES there are good days & bad days. Yes, symptoms can change over time with some getting more intense & others dropping to the background. The longer the styloids are impacting nerves & vascular tissues, the more likely new symptoms are to occur &/or change. That’s not to scare you but to explain what you’ve noticed. I had the same experience when I had ES.

The way you’re feeling today is how many of our members feel as they await diagnosis especially when their journeys have been long & complex like yours has. Having your styloids removed should make a very positive difference in how you feel. Good blood flow will make so much difference!

It will take time after each surgery for you to “get back on your feet” & for symptoms to subside, but your energy & vitality will most likely return completely. That was my experience, & I’m so thankful.

I so hope & pray you’ll get your diagnosis & a surgery date when you see Mr. Axon. What is your appointment date again? I’ve forgotten if you mentioned it. I’m so glad you’re able to see him.

Sending a gentle hug

[Jules]

You’re amazing- I felt rough enough, but not as bad as you, & was lucky not to have to work, my boys were older too, I couldn’t have done it! I’m sure that once the styloids go & the jugular veins can return to normal then things will improve quickly. Just having my worst side done helped me enormously, so hang in there & hope you don’t have to wait too long. Thinking of you…

[Peony]

thanks so much Natty for the sharing of Kjetil - have looked at his site and absolutely fascinating, never heard of Thorasic syndrome…
we re going to get him to look at all the scans, so so grateful you shared this -
I posted in my small headache group and a few members are sending theirs!
We all need to help each other, huge thankyou

Can I ask how did you broach the scans with your neuro from him, was your neuro at all skeptical of out of England place / ’ quack’ clinic’ in any way ?

[Natty04]

Thank you so much @Isaiah_40_31 for your words of comfort

Yesterday was a bad day, i have picked myself up again and brushed myself off. I have realised that when i have the children at home, lifting my youngest and picking things up from the floor and toys under the sofa etc and being a mother in general all the moving, cooking etc makes my symptoms so much worse. They are both in nursery and school today and i have worked from home, but just limiting my neck movements have helped

Its just the chronicity of it all day in day out, wears you down physically and emotionally. You have been here so i know you can relate.

I am so happy that you are eagles free now and still stick around with @Jules to help and support others. Its truly remarkable

Thank you for the advice on surgeries and hopefully like you say, once sufficient blood flow has been restored to my noggin lol i will start to feel better over time

I have been put on the nhs list by Mr Axon now to discuss results and next steps. From his letter he seems keen to help me, so fingers crossed.

Thank you for all of your support as always

[Natty04]

aww thanks Jules, i really appreciate it. Yes unfortunately this couldnt of come at a worse time in my life. Having such young dependant children, bless them. They just want their active, lively mother back but i have to keep saying no i cant play football or i cant wrestle with you ugh

Im glad that your children were older and you didnt have work to worry about. Luckily i have a very supportive husband who is very hands on with his boys.

[Natty04]

my pleasure, i know several people who have arranged for him to look at their scans. Like i said i would never of known any of this if it wasnt for him

So my neuro took on board his feedback from my mri, he then checked and came back to me. He said i have looked at your mri again and i am in agreeance that you do infact have optic nerve sheath dilation.

Good luck and keep us posted on his feedback. I will help with any information or questions that you have, to the best of my knowledge. I know how desperate this feels to just be better or see your loved one’s not suffering anymore. x

[Mod_support]

Hey Natty,
Personally I have absolutely no experience with ES and 2 of the most knowledgeable community members, Jules and Isaiah have much more information and personal experience on the subject.
BUT
A possible CSF leak? Ahh now those I have had and do know about. In some cases, with head trauma, they can be a ‘once off’ and naturally close up themselves. But it sounds like your leak is continuing and that’s a little more concerning. Depending on the location of the leak they can also use what is known as a ‘blood patch’. Where they take your blood and inject it into the location. The blood clots and the clot seals the leak. There is also another procedure where your own cartilage can be used as a patch, but this all needs to be assessed by a neuro. I say a neuro because those symptoms of “…the whooshing or my sucked in head and eyes with my brain feeling numb and pulled in…” those are some of the classic neurological symptoms I have experienced.

A CSF leak can be serious, as an infection can travel via the leak and can have some major neurological effects. I understand your wish to have the ES dealt with first, but a leak, if left untreated can have some life altering effects.

Now in saying all of this, I’m not a dr and this all needs to be assessed by professionals in conjunction with each other for both the ES and the leak. Location and size of the leak can play a huge role in any treatment, but at least by having an assessment and having a professional’s opinion you will have a better idea of treatment options.

Merl from the Moderator Support Team

[blossom]

Merl, my understanding just from reading members here who have had both CSF leaks and Eagles…If you fix a CSF leak and continue to have high head pressure due to Eagles (styloid compressing the veins) then the leak can reopen and you’re back to square one. Also correct me if I’m wrong, Natty, but I think she already has had a blood patch.