Why do I feel so incapacitated? Why do I feel so exhausted all the time? Why does my head and neck feel so weird. Is this how people really feel? So, so sick. Practically bedridden. I’m at a loss. I need hope. I need healing. Finally, the nueroradioligst who diagnosed me is going to have a zoom meeting with me and the ENT who sent me to him. How can they not help me. How come they didn’t help me in the beginning? Can Eagle alone make you feel so awful or is something else going on? Could I have a CSF leak? I’m barely functioning. I know I’m just venting but I’m so scared and have absolutely no idea what to do. My PCP is useless, she won’t even refer me to neurology…I had an appointment with Dr.Annino in Monday but they had to reschedule because he has an emergency surgery he needs to do. I have to wait until December. This is so, so hard right now, living like this. I sent my records and images to Dr.Fargen. I’m going to do the same for Dr. Hackman. I guess Hepworth is backed up. Such a BS existence. Rant over.
Sunflower - I am so sorry your appt with Dr. Annino was postponed. Hopefully it’s rescheduled for early in Dec I’m also sad about how awful symptoms & hopelessness you’re feeling. What you’re going through seems somewhat typical for our members who have severe vascular compression - whether IJV or ICA. The symptoms are the result of either a lack of oxygenated blood getting to the brain (ICA compression) or too much deoxygenated blood in the brain (IJV compression) or perhaps both.
I expect it makes sense to you that the oxygen deficit in your brain, plus potentially extra pressure from too much old blood, would cause brain fog & exhaustion. The pain/weird feelings in your neck can be both from vascular compression & nerve irritation caused by your styloids.
Unfortunately, unless the neurologist you talk to about this is familiar with ES, you may not get much help or support. A vascular doctor who’s aware of potential vein & artery compression by the styloids might be more helpful.
We have many research paper links listed under the Research Papers tab on our home page. If you print off a couple, especially any that mention the types of symptoms you have, to share with the doctors you talk to, that can be helpful.
So sorry that you’re feeling so awful…unfortunately for some people ES can be that debilitating, and if it is ES surgery can help. But it can be a slow process healing, so prepare yourself that it might be a long job, but there is light at the end of the tunnel, there are many success stories on here There are good doctors out there, and you’re being proactive in sending your scans to them. Waiting is hard, but hope that you can see someone soon.
These guys on here are supportive and I ce ranted a few times, I so feel for you, life is tough at the moment and it’s hard to function, you’re not alone, so please take some comfort and strength from that.
I am still on my journey but a recent kicking is the total lack of support from GP who wants me to go down the mental health route, I think others have trodden that road and been judged and gaslighted many times
I’m sorry to hear that happened to you, @Mcwelly. It’s so awful when our very real symptoms get diagnosed as psychosomatic!!
It’s crazy & so frustrating, especially when you have evidence on scans! Sending you a hug
Well, my scans made no mention whatsoever of the styloids - the very reason for having them! No mention of C2 problems or ES. Mr Hughes. Wants me to see a spinal surgeon for an opinion on c4-7 problems. When pressed, thought left styloid was 37mm and the right 42 mm (was 39 mm 2 years ago).
So no further forward and £2k down the Swanee! I’ll speak to radiology dept to ask why nothing in report!
This happened to me as well. We dealt with it with our hospital system here and were refunded the 2K+. Dr. Costantino had to call the radiologist and specifically tell him what he needed, but it was written on the order.
If it was clearly written on your order, hopefully you can get some attention. So sorry. Clearly we are all on our own fighting to get help. (((
I know this will be another battle for you to fight, but you should get what you paid for & not be passed over because of radiologist negligence. Did Mr. Hughes order the scan? If he did, but didn’t order it correctly, then some blame falls on him as well. Additionally, If Mr. Hughes didn’t look at the scan himself, but only the report, that doesn’t seem very professional & you should have some recourse there as well. It should have been obvious to him by viewing the scan that your styloids are not normal lengths.
Yes, I think he only looked at the report! He then briefly looked at the ct image whilst I was on the phone, I don’t think he even remembered me!
Very sorry about your radiology problems. A huge ongoing problem in UK & so totally frustrating. I just got another useless radiology report from Queens Sq NHS. Reports are so lacking in scientific data and specific factual information needed. I still await results consult. Consultants then rely on these reports. I have asked for copy of scan images & plan to look myself. If anyone knows good UK radiologist can they say so. Know Mr Nick Higgins at Cambridge is away unwell. Hope you get help you need. D
Hang in there. Never give up. . I been there. Find the right Dr 's . It can get better