New ENT appointment advice

[Isaiah_40_31]

Hi Mafre,

Glad you have an appt. coming up. A year is a long time to wait only to find the computer system is down, & there’s no help or advice forthcoming until after another long wait. Very frustrating!

Both symptoms you’ve described seem to come with vascular ES, (IJV internal jugular vein) compression in particular, & some of our members have experienced both symptoms. Of those who’ve reported back several months after surgery, all had some to full resolution of those symptoms. Recovery does take time though as the IJV needs to re-open (sometimes the vein is ballooned after the styloid is removed to help it reopen & in other cases a stent may be required to help it stay open). Often when the IJV is compressed, the C-1 vertebra is part of the problem. The IJV gets squashed between the styloid & transverse process of C-1 thus C-1 can require modification to take pressure off the IJV as well, or sometimes the IJV is moved a bit to the side to give it more space. This scenario is an unknown until the surgeon actually sees what’s going on during surgery. This is why it’s important to see a surgeon who is familiar with ES & experienced with the surgery. External surgery (vs intraoral) is required for successful vascular decompression surgery.

Two bits of advice: Read the new Patient Self Advocacy section on our home page:

Patient Self Advocacy

Read the two posts written by Jules regarding ES symptoms. Much of the information she provides is backed up w/ links to medical research papers (which should make them more credible to your doctor):

ES Information: Common Symptoms And Possible Explanations For Them

ES Information: Common Symptoms And Possible Explanations For Their Causes: Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and patient! The sources used…

ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular

Eagle Syndrome Information: Background- Including Anatomy, Classic or Vascular?, Length Vs Angulation: Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and…

Finally, you’ll need to do a bit of homework & read through, or at least read the abstract & conclusion, of some of the research papers which discuss IJV compression caused by ES. Print out any that mention your symptoms & take them with you to give to your doctor.

Research Papers

You can also click on the magnifying glass icon & type jugular compression or vascular compression into the search box, & many threads will come up on that topic.

I hope you feel good enough to do some reading to help you advocate for yourself.