Iâm sorry that youâre feeling so bad & have had to give up work for nowâŚbut very good that you know Kjetil Larsen, he has helped quite a few members! It sounds sensible to go along with having a new MRI before embarking on more surgery, if he (and you) think that it could explain symptoms.
I have had a prolapsed disc C5-C6, Iâve had physio for this and it seems to be okay at the moment as long as I do the exercises. I believe that the prolapsed disc perhaps altered the positions of structures in the neck as it was at the same time I started getting vascular symptoms & then found I had bilateral IJV compression. Just my theory from my experience though- I had started doing alot of cycling at the time which I think caused the prolapsed disc, not anything to do with the ES, although I had a bad whiplash injury 25 years ago & have had neck pain ever sinceâŚ
I hope that your Neuro friend can offer you some words of wisdom!
Iâm sorry that youâre feeling so rough stillâŚhave you been back in touch with Dr Hepworth?
It did sound at the time that you were feeling terrible before surgery, and it didnât seem like you had alot of choice but to try it, itâs so hard that it hasnât helped you, but when we have complicated medical issues itâs hard to work out whatâs causing what ⌠trying whatever is needed to alleviate what seems to be the most likely worst one is all we can do, step by step. Praying for healing for you, and I hope that you can get some help from Mayo, please let us know how you get onâŚ
Thanks for your recommendations. Itâs true, itâs better to be safe and not make hasty decisions. I used to be an avid cyclist for several years and enjoyed long rides because I was into medium-distance triathlons. One December day, over four years ago, I experienced a horrific panic attack while riding back home after covering 80 km. I think it was because I was in an aerodynamic position for too long, and that day I quit cycling altogether.
After that, I couldnât find much pleasure in swimming, partly because the head rotation during the stroke hurt my neck. I was left with just running, but the last time I participated in a race was in March this year. I was registered for 21 km, but due to my symptoms, I only wanted to run 10k. At 9.5 km, I felt an overwhelming sense of impending doom, tunnel vision, tachypnea, and an inexplicable, horrible feeling that made me stop running altogether.
It wasnât until four months ago that I tried jogging again, but I experienced the same sensation just 300 meters in. Since then, Iâve had to give up sports, work, and a normal life.
I had a tele conference with him last week. To be honest, it was rather a downer. He was concerned at how bad my symptoms have gotten since the surgery. I am having new vertigo and dizziness constantly that I didnât before.
I can barely stand at times. He did not offer much hope that this worked. I was supposed to go back in January, but because I am so much worse, he wanted me to go back out there in mid December for testing, etc. But I think I am done. This was pretty much my only shot. Out of money, strength and hope. I am supposed to go to MAYO on Monday, as Hepworth also thinks I have at least one leak in my spine. I have also been through all of the CSF tests and treatments, so if that is what it is, it is game over for me. I wonât do those again.
@Misael - Those are some nasty looking disc bulges. I also notice in this image how straight your cervical spine is which could have contributed to the disc problem. Getting an updated MRI, as suggested, & an opinion from your neurosurgeon friend, of course, will help give you information that should be instrumental in helping you know what your next steps might be. PT to get the lordotic curve back in your neck may help, too.
Itâs really tough when there are several challenging issues to deal with all at once. You may be suffering from symptoms caused by both problems - the discs & elongated styloid, but thanks to Kjetil Larsen, the discs do seem like they could be the bigger problem at the moment.
@harrisonboy Iâm so sorry that you canât do the testing in December, and that Dr Hepworth couldnât give you any hopeâŚI am praying for you 
@Misael your exercise experiences sound grim, I hope that you can get some answers & treatment, for you tooâŚ
I am so sorry to hear you both @Misael and @harrisonboy are still in so much pain/vertigo.
Interesting you talk about disc damage. I too have C5-C6 disc bulging which I believe to actually be caused by the ES. Iâve noticed through my imaging over the last 10 years (X-rays, mris, ct) that it has become more apparent, which I believe to be caused by the limitations of my head position due to the elongated styloid. Iâve also noticed the curve of my neck (which wasnât great 10 years ago) has also got much straighter with almost no curve now.
Iâm wondering if anyone has had any damage to there sacral bone or finds discomfort in this area. I had an injury here when I was very young and am wondering if my pelvic tilt limitations could have affected where my head and neck position themselves in space .
All in all, this is horrible though right. Crazy that we donât quite understand (due to lack of research) why this comes about so we know what to fix âfirstâ. Hoping for good outcomes for everyone and hopefully together we can help push our understanding of this crazy thing along.
It is amazing how one boney or muscle problem in a part of the body can have consequences elsewhere! @vdm posted a list of his favourite resources and link to research you can have a look at if youâre interested, and I think it was maybe @TheDude posted in between some of his surgeries about how he was finding muscular issues in the lower half were affected by the top halfâŚcanât find that discussion though.