Hi all, thanks for letting me in to this community, it has been very helpful browsing around. I’ve come to this a little backwards, I was being assessed for other structural problems due to headaches, neck pain & dysautonomia & by happen chance “elongated styloid processes” was noted on my CT by the neurosurgeon.
I have noticed that most folks have a exacerbation when turning their head? If one does NOT get this does it mean that Eagle’s is likely NOT the culprit? I understand that a good percentage of people can have elongated styloid but be asymptomatic. I don’t have the typical throat, tongue issues. And things do not get worse w/ turning my head to the side. Symptoms do get worse w/ valsalva.
@Amy07 I’m looking into Dr P- we have family in Jax & it is just a 3 1/2 hour drive. Does he strike you as being one that is familiar with the vascular/vagus involvement or is he strictly looking for typical symptoms?
No, you don’t have to have pain/ worsening symptoms when you turn your head; that’s one of the typical symptoms, like pain swallowing, feeling of lump in the throat. In the Newbies Guide section there’s a thread ‘ES Info- common symptoms & what might cause them’, you could have a look at that & see if there’s any other symptoms you might have & not realise it could be ES. There’s also a link to a survey a member did about common symptoms.
Unfortunately it can be difficult to tell what symptoms can be down to ES; some members have had a steroid/ lidocaine injection into the tonsillar fossa area, doctors sometimes use this as a diagnostic tool to see if it’s ES or not, but it doesn’t always help, so isn’t fool proof!
Do you have other symptoms other thsn hwad & neck pain?
These are the symptoms I think might be related to either vascular or vagus nerve compression:
headaches/eye pain that fit with my Intracranial hypertension (no papilodema) diagnosis that did not respond to Diamox thus making me think it is structural.
whooshing pulsatile tinnitus that comes & goes
POTS (this could have to do with either vascular or vagus nerve)
Possible vagus nerve involvement based on the various dysautonomias:
Wow!! @Jules, I just read your post on the possible symptoms & causes you referred me to.
I forgot to mention I also have bad classic TMJ symptoms that could also be down to ES. I have the “hat” type headache. I also have sore throat & glands but they seem to be related more to an aberrant immune system, they come with low grade fevers in the afternoons- typical of ME/CFS. I have the shoulder pain & weakness in arms.
From what I’ve read so far, if a patient has such low qol as I do & this radiological finding is clearly there then it’s better to get those suckers out & see what sx clear up.
But, if Drs don’t really recognize these as being classically associated with ES how does one convince them & insurance of medical necessity?
I didn’t start with symptoms exacerbated by turning my head or position changes, but it eventually progressed to that for sure.
I chose to be self-pay to get treatment so insurance wouldn’t dictate my care. I know that’s not possible for everyone, but not having the 3rd party involved sure seemed to make my surgery more on mine/my drs terms. Then only the dr needs to see it as medically necessary.
Lots of members have struggled to convince doctors, we usually suggest that you print out a research paper or 2 which support your symptoms- for example there are several about jugular compression causing IH symptoms, links in the Newbies Guide topic about Vascular ES, & JustBreathe posted one titled Styloidogenic Jugular Venous Compression Syndrome: Clinical Features & Case Studies you could look up- & take with you to show the doctors. Going to a doctor familiar with ES should help too.
Hope this helps!
Thanks @premedmom. I wish that could be an option for us but we are relying heavily on meeting our maximum &then not having to pay anything more for the rest of the year. (Our insurance year runs Aug-July) I’ll be having a lot done this year. Hope styloid removal will be one of those.
Thanks @Jules for those suggestions, I’ve been saving quite a few back, I’ll have to pair them down to the best 2 or 3. But good idea!
Hi!
So much of your story above strikes a familiar chord with mine! After a long chase for a motorneuron disease i was diagnosed with ME/CFS, all of the symptoms you listed above. I was even taken as one of the few to participate in the NIH 10 day “viral onset ME/CFS” study a few years ago. My search took a turn with finding a skull base CSF leak and then ES. When I am able to keep the leak sealed I have massive decrease in my symptoms (as you listed above) with the exception of the reflexive valsalva much like a Cushing Reflex (obviously not that specifically because I am still alive
I am just over 3 months out from my first styloidectomy and venoplasty…this alone reduced the valsalva reflex by 50% which I now see has been the link to my failed leak repairs related to post op IIH. I hope to have the other side removed in the next few months to completely address this reflexive response and hope for long term resolution for my leak. I share my story to point out some parallels in yours. ME/CFS is a diagnosis of exclusion… and there is a lot to exclude as you have learned and the rest of the ME/CFS population is coming around to as well. I will say however that it is a very real disease but think there is huge potential for structural dysfunction that in turn causes ME/CFS in a convoluted way.
As for your question about symptoms with turning your head. I did not notice this as a major player until after I had the styloidectomy (one training wheel has been removed which is leaving the remaining styloid side the leeway to increased compression of the vagus/IJV with head and neck flexion and rotation) Do you loose visual acuity with looking down? This has been noted in the literature and paper Jules mentioned about by the Barrow Neuro Inst. and is a big symptom of mine both before the styloidectomy and now. BTW nor have i ever had the typical throat pain many mention but do have dysphasia (delayed pharyngeal reflex) with common aspirations and the “lump in the throat” related to double crush of the vagus nerve (brain stem and peripherally from styloid at the foramen and C1 tubercle). This stumped everyone at the NIH and my ME/CFS doc, now it makes sense.
I am so sorry for your suffering and I understand. I hope you can find the right surgeon, one who is open to listening and learning and who has experience with this enough to address potential vascular and nerve compromise. It has changed my life for the better without question. Push on for your answer, I will wait with you
Thank you for this @JustBreathe! It feels like stabbing in the dark sometimes with all these crazy symptoms. But it’s so encouraging that you’ve found some improvement. Especially since we have come down similar roads. Hope I can find that improvement as well soon. Thanks for all the support here, this is great!
Just came across this yesterday. It is a post by Jennifer Brea (outstanding advocate for ME/CFS) Which you might be interested it. In this blog she has the link to a study discussing ME/CFS and intracranial hypertension, ES is listed in her blog along with other possible craniocervical obstructions as a culprit.
I had a very difficult time finding a doctor to believe I had ES. My pain was never in my throat or my neck. It was the entire left side of my face. My jaw, cheeks and head. My Styloid was only 3.1 cm. My surgery said he would only do surgery if it was over 3cm. I had to beg him. After he externally removed part of the Styloid he said it was not typical. It was sharp and poking under my chin. I’m 7 months post surgery and I am HEALED . Yes I have twinges and a tiny bit of aching but from what was to what is I am healed. My doctor in Scottsdale Az was incredible. He even prayed with be before surgery. Dr. John M. Milligan, MD. I pray for those who suffer. I hope this post helps someone
Have you had a CT scan of your neck between skull base & hyoid bone yet? That will be your best bet toward getting a diagnosis. Once you have the CT scan, you can send it to Dr. Samji or someone else on our doctors’ list for an opinion & have a phone consult if traveling to the office isn’t convenient.
. Yes I have twinges and a tiny bit of aching but from what was to what is I am healed. My doctor in Scottsdale Az was incredible. He even prayed with be before surgery. Dr. John M. Milligan, MD. I pray for those who suffer. I hope this post helps someone 
