I have EDS and was diagnosed with a cranial CSF leak. My symptoms were crippling. In doing further work up before surgery I was found to have Vascular ES and a jugular aneurysm. The ES needs to be addressed first because the aneurysm is putting pressure on my eye and I am at high risk for an optic stroke. I will be having surgery with both my head/neck surgeon, who will remove my calcified styloid and a vascular surgeon who will have to do a graft on my jugular. When I’m all healed from that I will have my CSF leak fixed.
Does anyone have any experience with this type of procedure? Any words of wisdom here? Any information or experience you could relate would be helpful, I am feeling helpless.
Welcome to this wonderful forum! You do have some serious health challenges, & I’m glad you’ve found doctors you feel comfortable with to help address them. The type of ES surgery you’ll need for sure would be the external approach as I don’t think the area where the jugular vein is located can be accessed via the intraoral approach (but I’m not a doctor so could be wrong). At any rate, where vascular issues are concerned, external ES surgery is the safest because there is opportunity to monitor nerves & see vascular tissues which is not the case w/ the intraoral approach. It would be optimal if your surgeon could remove the styloid process at the skull base & also remove the stylohyoid ligament to prevent any future possibility of its calcifying & causing more problems for you.
I will tell you that since you have EDS & your jugular vein will be having major work done on it, you will probably be looking at a longer recovery time. ES surgery without your complications takes 6-8 weeks for basic recovery & up to a year for nerve healing. I’m not saying this to scare you but to prepare you for what to expect. If you can tolerate prednisone & opioid pain meds (Percocet historically causes less gastrointestinal issues than Vicodin), then make sure your doctor prescribes a course of these for you post op. Since opioids are constipating, you’ll also want a laxative & stool softener on hand to start taking as soon as possible after surgery.
You can use the magnifying glass at the top of this page to search for any topic about which you’d like more information. The Newbies’ Guide is also tremendously helpful.
If you feel your surgeon does a good job with your ES surgery, we’d love to add his name to our US ES Doctors’ List as we don’t have anyone from your state in our directory at this time. You would need to ask his permission first though.
Please keep us posted as to how your situation progresses. I will be praying for you!
There’s useful info about what to expect after surgery in the Newbies Guide section as Isaiah says, including a link I think to a shopping list (if it’s not there you can search for it), which suggests things like wedge pillows as you won’t be able to lie flat, stuff for smoothies as you may well not be able to chew very well, ice packs to help with possible swelling…
There’s also info about possible risks, like nerve damage which could temporarily affect your tongue, smile or shoulder/ arm. There have been a few members who’ve experienced this, but it generally improves with time. I’m sure that your surgeon will discuss this with you.
I couldn’t drive for 3 weeks after surgery because it was painful to turn my head, others have been okay to drive earlier, so hopefully you’ll have help?
Sewmomma has had surgery recently & has posted about her recovery, so if you read her posts it’ll give you an idea.
Hope that all goes well for you, sounds like you have alot to deal with…
Thank you for your reply. It makes sense about the longer recovery time because of the EDS (I have had surgical wound dehiscence in the past). I cannot have my CSF leak repaired until I’ve completely healed from the ES repair. I will definitely update this and pass on my surgeon’s name if things go well…it would be great to be of any help to anyone. Thanks again!
