I have been following this site for a bit now having been diagnosed with ES several months ago. The incredible heroism I have read about by so many is amazing and I am grateful for the support of this platform. Long suffering with few answers, pain and frustration can lead to a weird backwards hope for something to turn up “positive” in all of the testing and imaging we endure.
I have joined the ranks in being out of this world grateful for a very “positive” venogram last week, 75% internal jugular vein stenosis and significant pressure gradient difference at C2 related to ES … “THANK GOD!!!” was my reaction to the vascular surgeon and nurse who replied “you are not crazy, this is the real deal”. Oddly we hope to find something terrible which in turn gives us something tangible to work with and offers us hope for beautiful and better things to come. I look forward to a styloidectomy from the skull base and internal jugular graft or bypass in the next few months knowing it will be a rough journey but will have a happy ending.
No one said life would be easy but every moment is a choice and that is a beautiful gift.
I choose to be grateful.
Thank you to everyone sharing, caring and loving on this site.
How AMAZING, FANTASTIC & what an answer to our prayers!!! So glad you’ve finally heard what I felt like you already knew!!
Yes, the surgical journey will be a challenge especially w/ adding a vascular repair, but it WILL be worth it in the end! I hope you are surrounded by people you love & who love you as you travel this path.
Please let us know when your surgery is scheduled & stay in touch in the days/weeks leading up to it.
Great that you’ve been believed/ justified!
Just curious about the graft or bypass- are they going to see how you get on later once you’ve healed, or do that at the same time? My jugulars were both pretty compressed but have sprung back to a certain extent, so the majority of vascular symptoms have gone. My doctor did say that a stent could be put in later if they didn’t reopen, but he did caution me that it could be painful & couldn’t be removed later…I decided I was happy enough with the results!
Well done for persevering & not giving up!
The plan is to do the styloidectomy and address the IJ vein stenosis at the same time (no mention of a stent, only graft with placenta tissue or bypass). My ENT thinks the ES/vascular stenosis and double crush of the vagus nerve (medulla origin and peripheral vagus nerve at C2) are a factor in the recurring increased intracranial pressure that is not allowing me to hold the skull base CSF leak repairs up to this point. This theory is all pretty new and he is a leader in the research, but makes good sense with my history and symptoms Thanks for the good energy, not enough room on the page to list my gratitude prayers in all of this over the last 5 years with so many lessons learned and new people met…
Shalom JustBreathe, I know how you feel…all the testing and prodding we go through! You have come to the end of your search…Now, just like I did, it’s time to take the plunge and do the surgery. I don’t know how long it took for you to go through the suffering and pain associated with a final diagnosis of ES. I suffered with this demon for 17 years! No diagnosis until I moved to Oklahoma and found Dr. Greg Krempl at OU Physicians. I had both styloids removed through my mouth. Yeah…it was hell on Earth but, I made the right decision.
It took me about 4 months of sitting up on the couch with pillows to sleep. Could not lay down to sleep but, I survived it. You will have your good days and you will have your bad days. Take it one day at a time and surround yourself with some praying friends. They helped me so much. I went through depression for awhile but, my girlfriends weren.t having any of it. You need this blog and praying warriors. It is a risk to have this surgery but, I couldn’t continue to suffer. Hang in there, you are at the edge of the woods and coming out. Blessings
Thank you for your words of encouragement and advise! I am waiting in patient trust for my surgical date, a lesson in itself
Listening to the users of this site it is interesting to me how ES can present itself in so many different ways and explains how it is so easily missed. I have had trouble swollowing for 10 years but without the pain that people mention (thank God). For the last 5 years I have been progressively more sick with complicating neruo signs to the point of being home bound. Chasing a motorneuron disease (several misdiagnoses) and all other possibilities with 40+ specialist I finally was tipped off on the skull base CSF leak which lead to the ES diagnosis by my surgeon.
He is the fist doctor ever to actually ask me if I felt like I was being heard - WOW
Having worked in the health care field as a PT for 25 years and seen so many doctors myself I can tell you that is UNHEARD of… not new news to everyone on this site. He is an anomaly in medicine today, brilliant, humble, forward thinking and compassionate.
Thanks again to everyone listening, we are all in this together and that is beauty in itself.
Peace and all good
JustBreathe, Yah is ordering your steps! You have a doctor who knows that you have not been heard, in the past. He is that rare physician who has compassion for his patient. And that is rare…The medical profession is becoming more and more about numbers and instead of a man/woman becoming just a physician…they are coming out of medical school with more of a “business” degree, rather than a medical degree.
Also, hospitals are pushing for doctors to meet a daily quota and patients are more like cattle moving through, rather than being heard one on one. I was blessed that I did not feel that from Dr. Krempl. From the very first time I saw him, he got into agreement with me in prayer, and he told me that he would find what was wrong and to not fear, but believe. Yes, he did allot of the same tests that I had before but, this time it seemed that my steps had been ordered.
He was different. He prayed with me and I believed. 3 month’s later, I got the diagnosis of ES. He had also told me that later during the week he was going to meet with his colleague, Dr. R.Layton Runkle MD. Both of them were actual medical professors at University Of Oklahoma. Doctors who teach other doctors and they did research so, it was all good.
When I left his office, I thought, maybe he’ll talk to Dr. Runkle, or maybe he’ll forget??? Yah had ordered my steps and so, that’s where I was at. Believing…I received a call on a Wednesday from Dr. Runkle’s office to come in on Friday. I said, okay. I went and I had never seen Dr. Runkle but, that day was the beginning of getting healed. When he walked into the exam room, he had a great persona and he said, “Hi, I’m Dr. Runkle, Greg told me about you!” OMG, I knew he was the right doctor for my rare diagnosis. On the following Monday, I had my surgery.
Hadassa - beautiful name - compassion, love it!
I too love how Grace flows in this life, what a wonderful story to post and share. Yes…insert sigh here…our medical system is seemingly in a downward spiral but it is the stories like yours that give us hope, courage and fortitude. I am absolutely sure your doctors have learned from you and are thus helping many many more, just as sharing on this platform will as well. One stitch at a time in this ever expanding tapestry of the love and suffering of life, messy and knotted from the back but unspeakably beautiful from the front once it is finished
I am trying to be patient while I wait for my surgery date.
One breath at a time at this point…
inhale - Yah
exhale - weh
…just breathe (and of course smile )
Awesome thoughts in your second paragraph. I need to print & post that where I can see it daily to keep me mindful of Who it is that gives me breath in the first place & second, keeps me breathing to serve & glorify Him.
Thanks for the good energy, not enough room on the page to list my gratitude prayers in all of this over the last 5 years with so many lessons learned and new people met…
)