Time to get serious

[north]

Hello all!

I’ve been a silent observer of this forum for nearly a year. I’ve finally come to a point where I need to figure out if my elongated styloids are the root cause of the issues I have been having.

Quick story time…

A little over 10 years ago I began experiencing a number of extreme symptoms that seemed to appear out of nowhere. I was in graduate school for engineering and had been spending huge amounts of time studding and living in a hunched over position working problems. One day during my second semester like a light switch I began experiencing intense waves of brain fog, dry eye, pressure behind my eyes and forehead, light headiness and dizziness. At first these symptoms came and went for a couple weeks, mostly triggered by stress or the need to focus. Then came visual disturbances, as if my vision progressively became blurry and pixelated. Simultaneously I started experiencing insomnia where my heart beat kept me awake at night (felt like my pulse was going to beat through my chest). As time went on the fog became a permanent feature of everyday life that never left but only cycled up and down through the day depending on my stress, excitement or physical activity. I felt as though my brain was shutting down.

During this time I saw numerous doctors and specialists who all seemed to come to the same conclusion “this was in my head”. For a long time I lived with the assumption that this was a self manufactured issue and I need therapy and self help time. Short story, none of that worked. I was even placed on SSRIs to no avail.

I had all but given up until a little over a year ago when I went to see an upper cervical chiropractor and was identified as having an elongated set of styloids (longer on the right side). Since then I have noticed that I have a slight persistent soreness on the right side of my neck below my ear. Its almost like my body filtered out the soreness until I became aware of the styloid.

10 years after the onset of symptoms, all but the insomnia remain. Daily life is a constant struggle against chronic pain… The fog/memory problems are the worst and without them life would be amazing.

After learning about the styloid I pushed my primary Dr to order a CTA. The report doesn’t indicate anything abnormal, however when I load the file into Slicer the styloid shows clear as day. I will post some images below…

At this time I have no Drs that support my suspicion of the IJV/nerve compression by the styloid. My neurologist said it couldn’t possibly be the issue and was happy to slap the label of “migraine without headache” as my diagnosis.

I’m located in New Mexico and there doesn’t appear to be any Drs here that have experience with styloid surgery or even basic IJV compression assessment. From my reading on this site I would be very interested in a discussion with Dr. Hepworth in CO. What would be the recommendation to best go about trying to get an appointment? I wont have any sort of referral given none of my Drs have any interest in this as a possible cause.

Thank you for taking the time to read this post.
Jesse

Edit* I would be happy post more pictures or share the scan files with anyone willing to look in further detail.

[Leah]

Welcome and so sorry that you had to join the club. Sounds like you’ve been through a really rough go and I’m so sorry for your suffering. Your styloids are long and your C1 transverse processes on both sides appear quite close to your styloids which would mean very likely your IJVs are compressed. But I can’t tell from these images and will look at tomorrow and send tips.

I did not use Dr. Hepworth, so others will chime in on that. Info might be within the forum if you search for him. His office was not taking new appointments for a while and I don’t know if he’s opened the schedule back up yet.

[Isaiah_40_31]

Hi @north -

Welcome to our forum! Great job on the 3D images of your CT scan. Your styloids are both very thick & as @Leah noted, that decreases the space the IJV has to pass between the styloids & transverse processes of C-1. It looks to me like your right IJV may be compressed (see how the IJV narrows near C-1 & the styloid?). The left side doesn’t narrow at the top like the right does.

The best way to get started with Dr. Hepworth is to call his office & ask when he’ll start taking new patients. At last count, our members were being told to call back in Dec. or Jan. & appts will be schedule in the spring next year. I recommend calling once a week to check back in about getting an appointment. The office is not great about calling back when you leave a VM so it’s best to call till you get a live person to talk to. First thing in the morning (office is open 8-5, I think) the phone lines will be busy so call late morning or early to mid afternoon.

I think the CT scan with contrast you have shows adequate evidence of potential IJV compression so you probably don’t need to get anything else done prior to getting an appointment w/ Dr. Hepworth.

Sleeping w/ your head elevated can be helpful in reducing brain fog. Dr. Hepworth often Rxes a blood thinner such as Plavix or Brillinta prior to surgery which is also useful in reducing brain fog. You may be able to get your PCP to give you a prescription for one of those.

Finally you’ve lost the lordotic curve in your cervical spine probably from looking down for hours a day doing computer work. Since you’ve lurked here for a long time, you’ve probably read this is called military neck. Working toward restoring your cervical curve can also be helpful in reducing vascular symptoms.

There are simple exercises you can do to work on this but if they begin to flare your symptoms, please stop doing them for the time being. The easiest is to lie on your back on the floor or on a yoga mat on the floor (knees bent or legs straight - which ever is more comvy). Gently press the back of your head directly into the floor. Eyes & nose should be pointing directly at the ceiling. You’ll feel the muscles on the back of your neck tense slightly. Hold for a slow count of 5 then relax for a slow count of 5. Repeat this 5-10x once or twice a day to start.

Hopefully others who are better versed in reading CT scans will also offer opinions on the images you’ve posted.

[Jules]

I agree with @Leah & @Isaiah_40_31 , they’ve given you good opinions and advice so can’t really add anything to that! It’s so frustrating that you’ve been fobbed off by doctors for so long…
Dr Hepworth sounds like a great surgeon, so worth trying to see him, although if you can’t wait that long, there are other skilled surgeons who can remove to skull base which would hopefully be enough to reopen the IJV…
I hope that you can get some treatment soon

[steve1]

I can highly recommend seeing Dr. Ryan Orosco at UNMH in Albuquerque. I saw him after the ENT docs at the Presbyterian and Lovelace hospital systems would not even see me .Keep in mind I was on the medical staff at both hospitals for over 40 years

Dr. Orosco has treated patients with Eagle during his residency In SD, Ca. He is young and well trained. That would be my next step!

[north]

This community is incredible. I’ve already had more support here after one post than 10 years of dr visits.

I’ve been super hesitant to proceed down this path. I have the fear that the styloid isn’t the cause of my symptoms and surgery would do more harm than good. I guess I just need to speak with one of these drs who has experience with eagles and see what they think.

I’ll have to check out this dr. Orosco. I had no idea anyone’s locally has experience in this. Thanks for the tip!

[Isaiah_40_31]

@steve1 - Thank you so much for sharing your experience. I will add Dr. Orosco’s name to our Doctors List so we now have a doctor to whom we can refer our NM members.

Did you end up having ES surgery & if so, did Dr. Orosco do your surgery(ies)? Also, ify you had surgery, how was your outcome?

I’ve added Dr. Orosco to our Doctors List.

[Isaiah_40_31]

Thank you for your comment, @north! Responses like yours confirm that we are accomplishing what we’re here for.

[steve1]

I did not have surgery. We did a 7 day course of steroids. The third day I was able to eat and off pain meds.Day 5 normal eating . We then cancelled surgery and took a wait and see approach It took 3 weeks for my ear to feel normal. That was 6 months ago and not a problem0ver that time period.I am due to return for a contract CT next month. I am sorry for the delay in responding!

Steve Cito

[Isaiah_40_31]

Great to hear you haven’t needed surgery yet, @steve1! Steroids can be miraculously helpful. The great help they can give lasts longer for some people than others. I’m glad you’ve gotten better than average results!

Please let us know what you learn from your next CT scan.

[north]

Just posting a follow up. It has taken months and many many phone calls, but I finally have an appointment scheduled with Dr. Orosco on Feb 26th. I will keep the thread updated after my appointment.

[Henrik]

@north

Your story made me shed a tear, it is very similar to what we all have been trough.

Rejection, self doubt and loss off hope.

Proud off you to pick up the fight again and again !

Keep going!

• Henrik

[Isaiah_40_31]

Your perseverance has paid off! Good work, @north! I’m glad the appt. isn’t too far off now. We will look forward to hearing what you find out. I certainly hope Dr. Orosco can help you after all the effort you’ve gone to, to get an appt. w/ him!

[Jules]

Hope it goes well

[north]

Update - Last week I met with Dr Orosco over at UNMH. Overall Id summarize the meeting as extremely positive. As @steve1 said, Dr Orosco is young but really seems to have a good understanding of vascular eagles. He noted that he has up to this point conducted 5 styloid removal surgeries. The first of which was while he worked out in SD.

He reviewed my scans and indicated that I may have some level of jugular compression. He did comment that without his prior experience with ES he would not have made note of it (probably why so many Drs overlook this as a diagnosis). After explaining my symptoms, he agreed that they do align with possible intercranial hypertension due to jugular stenosis.

As for the next steps… He would like further validating evidence before recommendation of a styloidectomy. He has put in a referral for me to receive a jugular catheter angiogram. My understanding is that the catheter will be used to probe the pressure of the upper and lower sections of each jugular vein. The difference between each upper and lower measurement will provide a quantification of the theorized rise in cranial pressure (this was the method he has used in the past to make a positive diagnosis).

My takeaway from this proposed test is that a net positive pressure is indication of an imbalance between the inflows (arterial) and outflows (jugular and collateral veins). A positive value combined with some level of visual jugular compression would lead to the conclusion that collateral vein capacity is not sufficient to supplement the loss due to stenosis of the jugular vein.

I am wondering if anyone in the community has had experience with this test being used to positively confirm a vascular ES diagnosis?

Jesse

[Isaiah_40_31]

We have a number of members who’ve had their level of IJV compression confirmed via a jugular catheter angiogram. This can also be done, but perhaps slightly less accurately by an ultrasound of the jugular using the valsalva maneuver at several points along the IJV between the skull base & collar bones. Dr. Hepworth has a specific protocol for the US approach but he also orders angio/venograms for more precise information.

I’m really glad you’re experience w/ Dr. Orosco is good. It would be great to be able to add him to our list if you do have him do your surgery & your outcome is good.

[Jules]

I’m glad that Dr Orosco was helpful, it would be great to have another doctor on our list as @Isaiah_40_31 says… I hope that the tests show what’s going on and that you can get surgery!