I’ve been reading all your posts for many months now, and am very grateful for such an open, informative and supportive group. Thank you all for being here.
Like many of you, I’ve suffered from various and difficult to define issues for over a decade now, but finally made my way through the medical jungle and have been diagnosed by Dr. Hepworth with bilateral jugular compression due to fat and elongated styloids, and muscular entanglement on my left side. This was done via a CT scan (with contrast) and bilateral jugular ultrasound. I’ve been on his surgery schedule for a few months now, and just got lucky enough to be moved up to November 30th for a full left side styloidectomy. Dr. Hepworth said he’s 90% confident that if the left side surgery is successful that I won’t need a second surgery on my right side, even though I have elongated and thickened styloids compressing my jugular vein on both sides. He also said that 80% of his patients like me see at least a 50% improvement after surgery.
This week an appointment I scheduled over 8 months ago with Dr. Birlea, the head of the UC Health Neurology department, also came through and I did a video call with him. After reviewing my CT scan (with contrast) and discussing my symptoms, Dr. Birlea said he isn’t convinced that I need a styloidectomy, and that my issue may be partially a CSF leak (especially considering that I am hypermobile and my neck has straightened so there’s no curve anymore), and he recommended a full spine MRI with contrast, as well as seeing an optometrist to determine whether there’s any pressure behind my eyes. At the same time he confirmed that my symptoms don’t exactly track with typical CSF leak, nor with “typical” Eagles Syndrome. When I asked him if he thought the potential benefits of a styloidectomy outweigh the risk, he said he’s 50/50.
When we got into more detail, Dr. Birlea made it clear that if I do have a CSF leak, and they patch that leak, then my symptoms could get significantly worse due to the jugular compression. He thought that’s probably why Dr. Hepworth is recommending the styloidectomy prior to any further investigation of a possible CSF leak. Nevertheless, Dr. Birlea felt he can’t recommend surgery until more diagnostics for potential CSF leak are done.
I just had a short call with Dr. Hepworth’s PA, Alison Love and asked about this differing opinion, and she confirmed that their office regularly deals with CSF leaks, and are aware of that as a potential issue in my case. However, she stated that there was no point in worrying about a potential CSF leak at this point in time, because the jugular compression needs to be dealt with first. She also said that if they can fix the jugular compression issue, and I do have a CSF leak, there’s a good chance that my body would repair the CSF leak without intervention once normal blood flow is returned.
From what I’ve read here, it seems like I should trust Dr. Hepworth and go ahead with the surgery in a couple weeks, but I’d love to hear all your informed opinions as many of you seem to have dealt with competing opinions from different doctors in your journeys.
To give a little more context, the majority of my symptoms seem to align with the issues caused by jugular compression, but not all of them are very clear. My symptoms are:
Vision blackening with position change
Word finding difficulty and memory problems
Heart beat audible and rapid in my ears with minor exertion
Occassional muscle weakness in legs/arms
Significant changes in blood pressure with position change (20 point drop between sitting and standing)
Crackling in my ears with jaw movement (not popping or snapping. Sounds like shrimp eating underwater)
Very slight tinnitus that comes and goes
Low grade constant headache
Exertion induced headaches
Severe menstrual headaches
Severe headaches that wake me from sleep, usually around 3am and are significantly worse laying down than sitting or standing.
Headaches that come on in the evening and worsen throughout the night
Severe cramping in calves as a precursor to nighttime headaches
Advil has always been somewhat effective at stopping most of my pain, but it leaves me groggy, exhausted and unfocused, especially when taken at night. It’s also started to cause some nausea and stomach issues as I’m taking it at least 2x a week at this point. Dr. Hepworth put me on blood thinners, which have made it so I occasionally get 2-4 good days before a severe headache event. A different neurologist prescribed nortriptyline, which has gotten rid of the radiating pain from the base of my skull forwards, but otherwise doesn’t seem to have much effect.
I’m certainly desperate for relief and a return to being a fully functioning human, but of course surgery is scary and has it’s own risks. So, my questions for all of you are:
- Is there any negative effect of not having styloids? (not including inherent risks of surgery)
- Does it track with your experience that jugular compression should be addressed prior to CSF leak?
- Has anyone else seen both Dr. Hepworth and Dr. Birlea? Any opinions on which to trust in this case?
- Does being hypermobile positively or negatively effect outcomes of a Styloidectomy?
- Should I bother with the full spine MRI with contrast prior to or after my Styloidectomy?
- Are any of the symptoms listed NOT possibly caused by jugular compression?
- Are any of the symptoms listed specifically related to CSF leak? (My preliminary research indicates the opposite, especially for the headaches that are worse laying down)
Thank you all for reading and I look forward to your replies.