I have had debilitating pain for 3 years. I have seen 20 different doctors and had 23 scans. After seeing mostly ENTs and Neurologists, I found an immunologist who tested me for many things and diagnosed me with a neuro-immune condition, MCAS, POTS, and HEA. I also have EDS, which I’ve known all my life, but never understood, and a spinal CSF leak.
That Doctor recommended Dr. Hepworth. After his scans, we learned that I have ES, 3 CSF leaks, a compressed jugular vein, vagal nerve, and military neck. Dr. Hepworth was the first specialist who took the time to actually look at my scans and explain them to me. The others just went by the report and told me I had gas, or looked at me like I was crazy. I have postponed my surgery because a few doctors have said that I could have a stroke or nerve damage from it, and still have this pain. My dad had a stroke at 47, and I don’t want to put my family through that. I love them so much. Meanwhile, I am in so much pain that I can’t do much at all. I haven’t been back home to see my family in 3 years. My hyperacusis, pain, pressure, numbness, nausea, vertigo, ice pick in ears, noise distortions, tinnitus, eye pain/visual disturbances, fever, blood pressure spikes, and profuse sweating prevent me from having a life outside these four walls. Driving is extremely painful, and getting to appointments is the worst, especially in the beginning when they could’t find anything.
I haven’t read on this fantastic website if anyone else has been warned against having the surgery. Maybe I haven’t dug deep enough, or maybe it isn’t even a thing. I am SO desperate that I am ready to take the risk… if it were just me, that would be one thing, but it’s about my wonderful husband and family…
@darcyl - Welcome to our forum! I’m sorry you felt the need to put your surgery off since I know it’s tough to get a surgery date w/ Dr. Hepworth. Have you talked to Dr. Hepworth about the stroke risk? If not that should be your next step. He’s an extremely experienced, skilled, & knowledgeable surgeon, & I believe he would have let you know if he felt the surgery posed a risk for you beyond what’s normal.
We’ve learned on here that strokes with ES, & especially from ES surgery, are extremely rare. They predominantly occur if there is carotid artery compression or damage to the carotid by the styloid. If your carotids (common, internal & external) are not being impacted by your styloids or the greater horns of your hyoid bone, then your risk of a stroke is almost non-existent.
I understand your concerns about your family if you were to be further disabled, but I have to ask these questions - Did the doctors who suggested you’d be at risk from a stroke if you had surgery look at your imaging prior to drawing that conclusion, or did they speak off the tops of their heads w/o having good knowledge about ES & your overall situation?
I’m sorry you felt the need to postpone your surgery & are continuing to suffer rather than starting to heal, but I think Dr. Hepworth’s opinion is the one you need to rely on, not that of doctors who aren’t involved in the ES aspect of your care.
I’m sorry too that you put off your surgery, & agree with what @Isaiah_40_31 says- did the doctors who advised you against having surgery know anything about ES? It sounds as if you have very quality of life how you’re living right now- there are obviously risks with the surgery, but most of us get to the point where our lives are being affected so badly by ES that it’s worth taking that risk. It is also a possibility, depending on your styloids & especially with vascular ES, that you could be at risk if you leave the styloids in. I don’t want to worry you or make you more anxious, as this is a very rare possibility, but we have had a couple of members who have experienced this. If you have IJV compression which is causing raised intracranial pressure, as well as being very miserable, this can cause CSF leaks because of the build up of pressure, possibly damage to the optic nerve causing vision issues, and also long term some cognitive effects. So this is something to take into account as well, it’s important to make an informed decision whatever you decide to do.
Sending you a hug as it’s not a decision to take lightly 
My advice to you, and I strongly encourage it, is to get 2 additional opinions from the other specialists that are recommended. Costantino does telahealth and I believe a couple of others do. It will take a while. Do not rush into this surgery. Its a complex condition with many co morbidities. If the other specialists agree that you are a surgical candidate, it will make this decision much easier. Also, get all procedures and testing done before surgery to make you feel at peace. By the way, many people have military neck, I do. Its the world we are in. I also have EDS. Be sure to get the venogram done in the hospital to find out more data.
@darcyl - The next closest doctor to you who does the surgery you need is Dr. Nakaji in Scottsdale, AZ. As @Brandy mentioned, it would be good to get another opinion or two to help you settle in your mind that this surgery is your best next step.
Here’s the contact info for Dr. Nakaji & Dr. Costantino:
•Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .
Thank you so much for taking the time to respond to me in such a caring and sensitive way. Just to have someone understand what I am going through means the world to me!
It is so encouraging to hear that strokes are rare, and yes, that was the strict warning from the doctors who don’t believe in ES. It was enough to terrify me to the point that I would decide to try and live with this. I was at the point where I was asking God to “heal me or take me home, but please don’t let me live another day like this”. The doctors are so persuasive, and with my experience with my dad…
As you said, Dr. H is super booked out. I have an appointment next month and then the pre op in June.
Thank you again for your compassion and advice!
Thank you SO much for this! I will call today! Peace of mind is so valuable! You are amazing!
Thank you so much Brandy for the great advice! You are right about being cautious… the risks should definitely be understood! Thank you, also for the advice about the venogram! I so appreciate you taking the time to reply to my post! It means a lot to me!
Thank you so much Jules! This forum is so incredible! I keep taking deep breaths of relief and comfort knowing that there are other people who have been on this journey too! You all are so compassionate and helpful! Thank you for the valuable information! I feel like I have had a squadron of negativity against my one Lone Ranger, who is confident, experienced, and trustworthy, so that should be enough… I am so glad I found you so I can educate myself about this condition that is not very well known. Dr. H mentioned, as you have, that he believes my CSF leaks are due to the build up of pressure. My insurance is willing to cover my CSF leaks but are not willing to cover the styloid/jv part, but Dr. H says that is what is causing them and all the other things as well.
I can only imagine how much time and effort it takes for you all to encourage us and educate us! I am overwhelmed with relief and comfort knowing that I am not alone in this. It is so hard to manage this, especially when people think you’re crazy. Thank you a million times over!!!
You are welcome!! We are in this together!
@darcyl - We’re all here for you & are happy that the information you’ve received has been a comfort & encouragment. Please feel free to “lean on us” as you continue toward surgery. I will pray for you to have wisdom about which doctor to do your surgery if you decide to get a second opinion before having surgery.
I’m glad that you’ve found the site helpful, praying for peace for you as you wait for surgery 