It’s been almost a month since my last post; I continue to struggle with symptoms, the pain being the hardest to manage. I’ve been taking pregabalin but it doesn’t seem to help much.
Dr. Samji requested a new scan as he said he was unable to get the information he needed to evaluate with the scans I provided. I am waiting to hear back about the referrals to ENT’s, and the doctors request to have all my scans reviewed for a 2nd opinion and my styloid processes measured. If I don’t hear something soon, I am going to just go ahead with the private scan, I am struggling to stay above water.
My regular GP keeps canceling my appointments, I still haven’t heard back on referrals he requested back in April - our “free” health care system is beyond frustrating. I don’t know what else I can do, I’m in limbo again, waiting for a doctor, any doctor to believe me and be willing help. Sorry for my “feeling sorry for myself post”, every day is a struggle, I am frustrated and angry
I AM SO SORRY! I wonder what was wrong w/ the scans that Dr. Samji couldn’t see what he needed to. I totally understand your frustration especially w/ the medical system in your country not being very cooperative. ES pain can be very debilitating even when we try to have a good mindset. No one understands it & many think we’re just whiners - especially friends & family just when we need them most!
Be a “squeaky wheel” & keep calling till you get the appointments you need. I’d push for that appt w/ your PCP as he should be able to Rx the revised CT scan. What you need is a bilateral scan of the area from skull base to hyoid bone. I’ll privately email mine to you (if I haven’t already). You can print them to take w/ you to show your doctor &/or the radiologist what you’re looking for.
Take some deep breaths for 5 min. (these have been shown to be relaxing). Knowing that you’re being heard here will hopefully give you some comfort. I’ll pray for pain relief in the interim for you.
I don’t know what may have been wrong with the scans with Dr. Samji, maybe that they were dated back in 2016/2017 - Lauren said the most recent pano I had done and sent, they could not open the file (?). I am going to put on another disk and resend it to Dr. Samji - I was able to open it no problem. Thank you, I received your scans and will take them so I get what I need. Thank you for your support, I really do feel alone most of the time, although I realize family and friends can’t possibly understand if they can not experience it themselves. Trying to stay strong.
Soo frustrating, I know how you feel…most of us on here have had struggles to get diagnosed and/ or treated, so we do know how you feel. It’s fine to vent when you’re having a difficult time! It sounds like you’re doing all you can to get this pushed through, you’ve just got to keep plugging on! There are other nerve pain medications which can help, it may be you need to try something different- if you can get in to see your PCP!
Thinking of you…
Thank you Jules, I have an appointment booked for June 27th - assuming he does not cancel on me again. I’m pushing in every direction but seem to be getting nowhere or it just seems to be taking so long to get anywhere. I’m seriously thinking about going to emergency for the pain, not sure they would be able to help me either, I just get looked at as if I am a crazy person. Thank you for your support.
If you are really having that much pain, it’s probably good to visit the ER. I’ve been there a few times already for my ES. They can give you medicine that will help the pain.
@BlueRiver - thank you, I am very close. I usually only experience the really bad pain for a couple of days at a time; this time it’s lasting longer and I’m not sure how long I can handle it. If things don’t improve in the next day or so I will go; I try to tough it out as long as I can, maybe that is my downfall.
Show my scans to your family/friends & tell them this is what’s happened inside your neck so they have a visual. Even though yours will look different, it may help them understand why you’re having the nasty symptoms you are. Let them know that several cranial nerves run through that area & the jugular veins & carotid arteries. Tell them when the styloids grow so long &/or the s-h ligaments calcify, they tangle w/ the nerves & can compress the jugular or carotids. Those situations produce the symptoms you have. If they have further questions make them do their homework & have them Google the cranial nerves (trigeminal, facial, hypoglossal, glossopharyngeal, vagus, accessory are the primary ones affected) & vascular tissues in question to see what body functions they influence. Maybe then the picture will become very clear.
Thank you @Isaiah_40_31 that’s good advice. I appreciate your insight, I have my own scans I can share to help explain what I am going through. This is nasty stuff, as you all know, I really appreciate the support when feeling so alone.
Hi All, I finally had one of my scans from 2017 reread, I am being told that my styloid processes on both sides are 2.6 cm, so not fitting the criteria of Eagles Syndrome. Now I have to decide if I want to get a private scan for more up to date information and measurements or cease my pursuit for an answer. I am not imaging all this, my life has turned for the worst in these last few months. Is it possible to have shorter measurements and still have ES, I am a very petite person (5ft with small bone structure)? I am still waiting to hear on a referral to the new ENT sigh. If it’s not ES it has to be something…so frustrating!
Weezie65,
I am not the expert here by any means but I do know that it is not always the length of the styloid that is the problem. The base of mine are very thick up high in my neck near my skull and is causing compression of the internal jugular vein and vagus nerve near to where they exit the skull. Maybe another scan or atleast another read of your old one with that in mind might help?
Sending you all good!
It’s possible that they have grown more in that time, so a new scan will show that. The angle of the styloids can cause symptoms too- there’s research papers which show that. And as JustBreathe says, the thickness can make a difference too, so it will be interesting to look at scans to see that. 2.5cms is the ‘average’, so if you think about that in a 6ft tall chap, they won’t have much impact potentially, but on us shorties, it can make a bigger impact! But try getting an ENT to think that way…
Let’s see what the scan shows & take it from there!
Thank you @Jules, I appreciate your thoughts. I am still waiting on the new ENT referral, I continue to add thoughts to my list to share with the ENT when I see him. I have the request for a private CT which I hope to have done shortly; so frustrating trying to get doctors who know nothing about ES to listen. I’m sure my medical file has been flagged as “crazy person”, I am even starting to doubt myself! I will not stop until I have this resolved be it ES or not, I am not imagining these symptoms - I want my life back. Again, thank you for all your support and advice, it really has been my lifeline.
You know your body better than anyone - and you know when something is not right. There is no such thing as “crazy” in medicine now…that is an old school thing (and if you find someone who tells you that feel free to update them in a kindly sort of way . Keep being your own advocate until you find the right person who will listen, really listen…and you will, it just might take a bit of searching. Take the good and leave the rest behind…thinking of you!
Another note to add to all the good info you’ve already been given above - styloid lengths are sometimes mis-measured so they are actually longer than a given report says. Additionally, if the stylohyoid ligaments are at all calcified (they can look like little dashed or dotted lines in a CT scan) then can also affect nerves & vascular tissues. A lot of people don’t think about the s-h ligaments unless they’re fully calcified, but they don’t have to be to cause or contribute to ES symptoms.
. Keep being your own advocate until you find the right person who will listen, really listen…and you will, it just might take a bit of searching. Take the good and leave the rest behind…thinking of you!