New member, surgery in september

Hello all
i just want to take a moment to say hi.
i have found the site doing some research on Dr Hepworth and couldn’t be happier with the support and wealth of infomation provided by the members.
Well to start with i was involved in a rear end collision motor vehicle accident in mid 2017,
severe whiplash and “Armlash” (if there is such a thing) my driver seat was partially ripped from the vehicle
althought i was treated and released the same day at ER, all was very quick and was told i would be sore tomorrow and to follow up with my primary care doc.
I had a neck and back CT at the time that was determined to be negative,

The days that followed the head aches and sensitivity to light and sound became insane,
Initial docs thought i had a concussion and mtbi, as slurred speach and word finding problems, adding words together to make new words , saying cat when i ment dog, loss of memory (kids birth days and things i should know) confusion, terrible neck and mid-back pain, and crazy base of scull pain

This led me first to a cranial sacrial DO doc that specialized in head aches, he did soft adjustments that seemimgly were not helping. i began to have a terrible smell in my nose, maybe like a burning smell and this had lasted for about three months, the other many symptoms were progessive and depession and anxiety and panic attacks became more and more frequent, i began to isolate as much as possible,
i could not drive and even being driven by others triggered major outburst and panic attacks from what i percieved as iniment accident on every turn, the fear of crashing, being crashed into.

I was finally referred to a neurologist for head aches and thought finally we would get answers.
First visit was a joke and it seamed that waiting the month to see him, was not getting any info as to the cause of the symptoms.
He suggested ssri meds to feel better, although he could not give clear answers to these symptoms, he suggested post concussion syndrome and depression. he also got a brain Mri that was unclear and did not show any usefull info.
when i reserched the ssri meds, it was clear there was a suicide risk as a side effect as well as others that were concerning.this was not a risk i was willing to take

Fast forward one year my doc says treatment is not working and maybe i should get a neck and back Mri.
these had these had shown c5 disc bi lateral herniation, c2 minor bulge,c7 minor bulge, t7 disc rupture with central canal stenosis, t8 and t9 bulges
My then first Nero-surgeon suggested c5 disc relacment with mobi-c artifitial disc, and to just wait out the t7 related pain untill i just cant handle it.

This was all a shock to me and I was told I would never be able to lift more that 35 lbs if i chose the surgery or if i did not.

I went down the rabbit hole of conservative options and therapy , covid then happened to us all and time passed with no solid improvements,

Last year all of a sudden things became worse
i woke one morning with crazy ache and pain in my s/c joint and neck that moved to my shoulder joint, and then the following days my arm had pain ache in forearm and wrist grip hand grip became quite weak.
My tinnitus then became different from the" normal every once in a day or two i would get a high pitch noise that would come and then go in about a minute or less" to a constasnt noise that was different.
it gets louder and sometimes it pulses static like or sometimes its like water running other times it is like
gang gang gang gang… pulsing. my base of scull on the right was crazy sore . all could do was to ice it and isolate from peolpe
i also developed a burning feeling, maybe like sand paper being dragged across skin,on my temple on the right
I then found the name pulsitive tinitus during reserch and was able to describe this to my new neurologist as increasing in frequency as well. i had previosly called it whooshing.

This is were i first met Dr Hui.
My first visit brought me to tears.
Dr Hui made me feel like he was actively listening, he believed me when i explained these crazy symptoms and told me he understands.
He said that the other docs were just not trained in this area and they all probably mean well.

This was the first time that i felt a doctor was taking my problems seriously.
I was so so happy, he made me cry first then laugh, then immerse myself in research the minute i got home.
From there we did catheter based dynamic veinogram that showed major compression of the left IJV at c1 and styloid ,neutral and with head turn complete occlusion and back flow out to the right side from other veins,
we have also done ctv that was not showing as much blockage , but nurse did head tilt instaed or head turn , and would not do head turn after i asked what about turn? “to much radiation”
Mrv was some what inconclusive

By then my blurred vision episodes were getting more frequent, my ears were always sore more on the right than left, the tinnitus was changing to poly-tonal (be booo be booo be boo, with some chan chan chan chan… driving me nuts, felt as if i was going cross eyed and the pressure head aches were tremendous,
Referred to neuro optimologist for work up for papiledema
requested lumbar puncture, and started diamox meds
At first the diamox was a “god send” as it had helped with the head pressure head aches and my eys slowly stopped feeling bulggy and sore my ears started to feel better,
my head aches then began to change over time ? weeks to months… my eye pain became increasing ly different and a sharp pain developed every time i turned my eyes to look left or right, i became lethargic
moody snappy increasingly depressed , i was out of meds on a friday and could not refill, over the week end my newr symptoms got better , i could think a little more clear, i decided to stop taking diamox as maybe it was some how making thing worse or different
Met with DR H to explain the latest and suggest ed to take it every other day and maybe that would help.
A week or so after i started again i had a kidney stone episode and ended up in ER again. yeeesh
Doing more research showerd a correlation with diamox and kidney stone formation. i then stopped again

My Lp was yeesh. some what painful during initial poke, the doctor doing the Lp remarked that there was a very low opening pressure of " lets call it a three" and was unable to get more that a small amount of csf “one ml” if i remember correctly
The LP was done about two weeks after my starting diamox and it is unknown if these meds have had an effect on the LP readings.
After the procedure i went to a waiting room to rest, i was told i could lay there for two hours, but was let out early as they felt i was good to go and was told i could got to work or do what ever just no lifting or straining.

I went home to rest but the days to follow be came inceasingly painful, my head felt like it was going to explode and the only thing i could do was lye down on my back with ice on the base of scull over and over. when i tried to get up I had the worst type of head pain to date. i finally called Dr Hui’s office to ask for help and was told that i most likey have a csf leak and that the blood patch had not held. At the time i said ok lets schedule to do another patch, but with in another couple hours it was apperent that i could no longer take it and went to ER for emergecy patch.
Again with in two days the patch had failed and i was then on my way for a third blood patch, I went home again before two hours of rest at hospital and just did bed rest for two days with minimal getting up.
Met with Dr Hui again to discuss options and he felt there was only a few doctors that could do a procedure to open up the IJV , He also started me on Plavix.

While i waited for the appoinment with Dr Hepworth that changes i felt on plavix were extraordinary,
during my first week i had started to think clearly again, as the brain fog is so debilitating, i wrote lists organized my things work tasks, my depression panic and rage had gotten much better and i felt some what more normal than i had in years( since the accident). although it has helped for the time being it was by far the best intervention, in the last couple months i have had to switch brands of generic plavix, and it had a huge effect negatively, increasing head pressure and pain, depession panic and anger increase, after a week got new meds , somewhat better but still in flux, then switched to plavix brand not sure if there is a difference as i still have constant flux up and down,
I wonder if there is just a point at which the meds can help but after that, only allowing normal flow back threw the IJV will be back to normal.

I truly Feel that up to this point Dr Hui and his intervention has saved my life as the depression and head pain was increasing and unbearable (with out hope).
He has given me hope and although i am scared about the procedure there is light and life to live at the end of this all
Evaluation with Dr Hepworth went well and he said i have VES affecting left IJV between styloid and C1, also the CTV showed that on the right side my IJV is being blocked lower down the neck with head turned to right, by my omahyoid muscle, and we will also detach or clean up any scare tissue or adhesions that may be contributing to the right turn blockage. He said my styloid are not long but I have the calcified styloid ligament
i Have yet to see a 3d image that shows the styloid as i have seen here on the site,
but Dr hepworth did go over the CTV to show the areas of compression, that he would be able to help with.
We are scheduled for this coming September for op.

I am probably missing more to the story but am exhausted from all this typing lol

I just want to thank all you folks for making this site
It brings me to tears how great full I am for all the support i have read from members, info and stories, and Hugs, i feel at home here
I finally can talk to people that have gone threw this or dealing with it now and that in itself is giving me hope.



WOW!! What an ordeal you’ve been through, @mekanX!! I was rear-ended on the freeway when I was in college & also ended up w/ whiplash which I think is what ultimately caused my ES development, but it was 35 years before I began having symptoms. I am so sorry for how you’ve suffered, but very thankful you landed in the capable hands of Drs. Hui & Hepworth (a God thing, I think!) & that your surgery is coming up soon.

I bet this has taken a toll on your family life. They will be happy to “have you back” once you’ve recovered from your surgery. We’re here for you all along the remainder of your ES journey & beyond. I’m glad you found us. :hugs:


@mekanX It is with a heavy but hopeful heart that I “welcome you to the club”. I too was brought to tears with my diagnosis after years of being brought to my knees (and put in bed) in a parallel story, only it was Dr Hepworth who pulled me back to life. Your tenacity and perseverance has brought you this far and will sustain you for what is to come. You have an incredible team and are a great advocate for yourself. Thank you for sharing your story, we are all in this mess together. Let September come quickly for you, hang in there!


Hi & welcome to the site, although as @JustBreathe says, sorry you have to be here…I had a whiplash injury nearly 30 years ago & have had neck issues since, nothing like as severe as yours though! (I had bilateral IJV compression from the styloids, IH symptoms, but no C1 compression. Mine resolved quickly after surgery as it was a less complicated case) Very glad that you’ve found Dr Hui & Dr Hepworth, and that the Plavix is helping for now.
Just be prepared that this might be only a part of the journey, but I’m sure for you any improvements will be worth it…let us know a definite date in September so we can wish you well in your surgery & pray for you. Well done for not giving up & for fighting for answers :hugs:


Yes it has taken a toll on family life for sure
If not for them and there support…
My family is everything to me and I want my life back
i thank God for ending up in Dr Hui office and now on the path of recovery. I understand that this is not over by a long shot and that some big hurdles are ahead. I have been so scared of potential new problems after or during the procedure, it has really been this last week just reading from the site that has given me some kind of peace with it all ,
You folks are great
I missed some much of my young growing kids lives, I will Never get the time back ,I want to be there for them and give back huge,
The unconditional love and patience and support of my family has been the saving grace up to this point
I really don’t know what god wants me to learn yet from all this but I have grown considerably
Thanks again for the kind words prayers and welcoming me to the group


Thank you
I love the name , I frequently tell my mother to just breathe when she get anxious
This story sounds all to familiar and I am happy to be in the care of Dr Hepworth and Dr Hui, it has been a big turn for the better in my care and I can see the light ahead :call_me_hand:

@Jules thank you
It is good to be here
although I hear a lot about the struggles of recovery I am willing to go though more pain to find peace and return to family life
time will tell
I heard to be carful what I ask god for, as when I ask for strength and wisdom he gives me opportunity to grow stronger and opportunities to behave wisely, has not been the easy road but I feel I am finally growing to the man I once aspired to be.
Hugs :hugs:

Thank you folks for staying with the site and providing so much direction and support to the community :call_me_hand:


Your response about missing your children’s young lives cuts deep for me. The day I woke up and could not get out of bed my children were in 7th and 8th grade. Now, 8+ years later one is graduated from college and the other will follow next year. I missed their entire middle school, high school, and college years being bedbound, only leaving for medical appts. Literally my husband was a single dad, taking them everywhere, even to college, while I was home.

This is an unspeakable cross to bear, yes. But it is not only that. There was a priceless gift given to our children, one that brought us closer as a family and gave them unbelievable tools of compassion for those who have been given a rough go in life. I see this now as their young adult lives are blooming. They are more independent than they may have been otherwise and roll with the punches of life with more grace.

I never tried to hide what was going on, even in the hardest of times and there were many of those. We had countless “family meetings” in our bed and celebrated Thanksgiving dinner on the floor of our bedroom (me in bed). Life is hard. God does not protect us from anything but unexplainably sustains us in ALL things. I hear your understanding of this from your message.

I hope this help make life a tiny bit softer for you.

I pray for your complete healing in the most expedited way possible, for continued Grace and loving support for your beautiful family. You never know where Love will go, just roll with it and know you are not alone. And yes, breathing does help :wink: you are a good son to your mother!
Dr Hepworth and I have been through a lot together. Feel free to message me directly at any time.


What incredible insight & wisdom you’ve provided @JustBreathe! Thank you so much for sharing your heart w/ us.

I continue to pray for your complete healing as well. :hugs: :heart:


You’re an inspiration! Praying for you & @mekanX :hugs: :pray:


@JustBreathe @mekanX Your thoughts remind me of what is perhaps my favorite poem.

“Even in our sleep, pain which cannot forget
falls drop by drop upon the heart
until, in our own despair, against our will,
comes wisdom through the awful grace of God.”

I have often spoken and written about “the awful grace of God,” because many of us, who have suffered and are continuing to suffer, gain a certain kind of wisdom that we (and in some cases close family members) would have otherwise never gained, but for the awful experience of suffering.

I, too, frequently think about what I’ve lost over the course of many, many years because of this illness and its myriad debilitating symptoms. And on the other hand, I also think about important lessons it has taught me not only about myself but others as well as society, the universe, and above all my faith in a greater good.

I hope that at some point everyone on this forum, who has cried tears of pain and despair, will ultimately come out on the other end with the blessing of wisdom and will have the grace to share it with those who come after, likewise seeking solace, support, and answers.

Thank you both for sharing your stories.


@mekanX We have so much in common where the mild brain injury/post-concussion syndrome are concerned. That coupled with VES is to the majority of doctors like a complaint written in hieroglyphics. There is little to nothing in their training or experience to help them decipher what on earth is going on in a head like yours and mine and many others here on this forum. I had been so gaslit by doctors that it wasn’t until I came across a book, The Ghost In My Brain, that I knew without a doubt something was truly and terribly wrong. The book was written by a university professor, who had a minor fender bender on his way to class and was discharged from ER the same day with whiplash. Little did he know the extent of the damage done to his brain when he was allowed to walk out of that hospital.

I went through cognitive rehab, had useless MRIs, and was sat in outpatient full-day group therapy that I barely managed to sit through for one week. I knew all the talking in the world wasn’t going to put a dent in depression secondary to a physical injury. However, I did not refuse the anti-depressants. They shut down the nihilistic chatter in my brain and allowed me to finally find and connect with a doctor (like one described in the book), who confirmed a mild brain injury and began a meaningful course of treatment. With the help of her curiosity, diligence, and empathetic support, I was later also diagnosed with ES and arrived here at this forum.

I am relieved that you found a caring, compassionate provider in Dr. Hui and that you found this forum too. Like the others here have said, I will be praying that you have the best possible outcome following your surgery with Dr. Hepworth.

Wishing you peace and wellness…


Well spoken, @CoHDa - both of your posts. I love the poem you shared. I have one I cherish as well, but it’s a bit longer:

Poem - WHAT GOD HAS PROMISED.docx (131.5 KB)


We are all here for you!!!

Please reach out if there is anything I can do to assist you.

I have had days where I thought dying was the best outcome to the 10+ years of excruciating pain I experienced. I didn’t plan it or have suicidal ideation, but I definitely didn’t fear death as I believed it would give me the relief that no mortal could provide.

Fast forward, and I am doing better than I have in 10+ years. As I met my son’s fiancé for the first time this weekend and see the excitement in their faces with their upcoming wedding plans, I am reminded that I would have missed all of these new memories we are creating if I departed too soon.

Don’t give up!! We are here for you!!! There is the potential to reduce your symptoms and when you reach that momentous day, you’ll sit back like me and smile - a real smile, not the ones I would always show others to avoid anyone asking me “are you feeling okay?” I am feeling amazingly well and so can YOU!!!

Prayers and support coming your way!



@Isaiah_40_31 The poem is so beautiful and so true. Thank you for sharing.

I forgot to mention the poem I shared comes from the trilogy The Oresteia written by Aeschylus, known as the father of Greek tragedy. If the poem is any indication, he certainly earned the title!


@JustBreathe thank you for sharing this part of your struggle, this has been the hardest to deal with for me.
Your are an inspiration and I look forward to sharing and learning more with you and the others
Yes I believe your are right as my kids have had to deal with this on there own with mom, as there was no guidance as to how to deal with the new dad , no clear answers.
I just love them all so much and am so thankful they did not give up on me and recovery.
Thank you for the support and prays of recovery
After I saw your post I just broke down and have had a hard time coming back to the computer, everyone’s input and support is just so awesome and overwhelming,
Much love to all you folks,


@CoHDa thank you some much for the poem and sharing
I agree that I have grown in ways over this experience, the family
And I are closer now as a unit ,as tennagers now they have better copping skills and seam to understand how important there roll in the household is ,they have ownership and responsibilities and I am so proud of them and there growth.

I am glad to hear about you connecting with the right doctor to work with, and that you have made progress threw this ,
I don’t think the Docs that seam to brush us off have any idea how we are affected in these situations, one of my first psychologist experiences where I fully opened up , she text me the next day to say she no longer wants to see me “ it’s not you, it’s me” all in a text, I was so fragile and on the edge,
Yes and so grateful to finally be working with the right doctors now and not just are these folks smart in there profession , but they have shown the most compassion and understanding of what the I/we are going threw to date.
Thanks for the book suggestion, I will go and grab it and have a read

@Isaiah_40_31 thank you for the poem I will check it out :pray:

@Jules thank you hugs :hugs: and :pray:
Thank you as well , it is great to be here with folks who can relate,
Man I have had those days also , and I am so glad to hear you are past them and able to be there to meet the fiancé and soon to be wedding
I look forward to be a grandparent :blush: there is much to look forward too thank you for the kind words and inspiration

You guys are the best
I will “roll with it “
You are all in my prayers of recovery and peace


Praise Yah mekanX…I am glad you found this forum on ES. I too suffered for 17 years and never had a diagnosis until I found Dr. Greg Krempl in Oklahoma City, OK. I too went to so many doctors and none of them knew what I was going through. I pressed in so hard to pursue my healing.

I consider all the doctors being “Mechanics” and what I realized was that they weren’t the “Manufacturer”. I was literally dying from pain and the quality of life was horrible. I cried allot, I was so depressed and I couldn’t take care of a newborn and 4 year old son. Mom was so ill.

My husband also suffered because he knew I was “normal” and 5 years into our marriage, I was a big mess! I emerged myself in prayer and begging my Father, my Elohim to either let me die or, heal me because HE created me and I put my whole life in His hands. He answered my prayer but, I had to move from Houston, TX. to Oklahoma.

He sent two women doing door to door evangelism to tell me that I was going to receive my prayer language and that I was going to move. THAT was HIS plan for me, not mine. I’m a good ol’ Texas girl born and raised in Texas and at that point, I didn’t even know where I was moving to??? Oklahoma is where he planted me! I had to move in blind faith because, was my husband going to move with me??? And how was I suppose to move without him??? I couldn’t even support myself!

I kept praying and asking God for help in my day to day living and it was hard because all I wanted to do was to close my eyes and die…I was giving up. But we are loved of God and he made a way for me and my husband came along to Oklahoma. Three years later I found Dr. Krempl. My life made a 360* turn around. Was it a hard surgery? Yes it was but, I prayed and my friends prayed for me and I got through it.

I want to encourage you in your pursuit of better health. This “devil” called Eagle’s Syndrome can be defeated and those of us who have had the surgery and are well are a testimony of what God will do when we cry out to Him. Blessings and let us know how you are doing.


@Hadassa what a battle you have and your family had
I am so glad that you had faith and made your move, found a doctor to help and hope your healing has been going well
I hear your pain and that was a long time to go through such an ordeal :hugs: great job

It has been difficult to agree to surgery,I had always hoped and prayed that conservative therapy would be the healing I need. I also did not understand what was happening inside until I met Dr Hui. As I researched i gained a new perspective, although I still had hope I could undo it naturally some how .
I had still believed that getting the procedure was giving up, but this could very well be the intervention I have been praying for.

Thank for the encouraging words and support
it is these stories of success that you folks share, that help to make it more bearable
Thank you and blessings to you


Thank you for the poem I like it very much


There IS hope and we just need to walk towards it. We would never walk towards God unless we go through trials and
seek out the answers. If you need money, we have to ask of God, If we need healing, we have to ask God for guidance,
If we need anything, we have to humble ourselves and ask Him.

You will be better but, you have to cross the threshold.