Thanks for the wonderful update! So pleased that this has given you good results, we know youāve still got more problems ahead with your CSF leaks, but having the vascular ES symptoms out the way will hopefully make a difference to how you feel overall.
Youāve been a jewel on the site yourself, lots of expert info & support for others! 
Will keep praying for you 
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I am just seeing this update. I am so sorry about the csf leak not healing. So glad you are feeling overall such improvment. I am confident releasing the pressure from the jugular veins will help with future healing. Keeping you in my thoughts and prayers 
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Woo hoo Just breath. 
We all love a good ending and so good to hear positive outcomes! You are an inspiration. So glad you are doing so well.
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Iām so happy to hear of your relief with your second surgery. I am a little over 3 weeks post and am thrilled to be feeling like my old self again. Hugs and prayers.
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@shayney I am so happy to hear you are doing wellā¦truly made my day! Thanks for sharing and enjoy every minute of this 
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@Snapple2020
I just noticed in your bio about your daughter who has POTS, that is a tough one! It may be worth taking a peek at this if you missed it earlier. It is an article on intracranial pressure but discusses POTS in a very mechanical way. Hope you are well!
https://mskneurology.com/intracranial-hypertension-beyond-csf-diagnosis-and-treatment/
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Just Breathe,
Yes, the POTS thing has been a huge deal given my daughter basically has no life and in bed most of the time. She has about a 3-4 hour a day capacity to be up and about. The COVID thing has made things regress as she cant be in her college classes with her peers and cant go to water therapy because pools are closed making her muscles atrophy more. We are kinda on autopilot and used to this. I tried to talk her into flying down to San Jose for the week I have my ES surgery in a few weeks and she just doesnāt want to get out of her comfortable bubble. Traveling is hard on her. I peaked at this article and will go back to it in the next couple days. It looks like just the detail I love to read! Thank you so much for it!
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Oh gosh, I am so so so very sorry. I was bed bound myself for 75% of the day before i started discovering the root of my problems. My heart goes out to you all. Sending you fortitude and prayers, hope for all of your tomorrows and a successful surgery for you! Tell your daughter not to loose heart, just keep taking one breath at a time and keep looking 
Thank you for taking such amazing care of her while you are in your own battle!
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Hi Just Breathe, Thanks for the well wishes and understanding. Sorry to hear you are partially bed bound yourself. I have always been a believer in that you truly donāt know what a medical and physical challenge is unless you yourself has walked the path and experienced it.
With all my own stuff, I have been feeling guilty I havenāt been doing enough for her. They always say, you have to put the oxygen mask on yourself first before you can take care of others. COVID has put alot of back burner for everyone. It will be nice to get back to some normalcy in our lives although it will take great patience before that day comes.
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@Snapple2020
My heart breaks for you, i too have parental guilt of having to put off medical care for my daughter. My husband and i could barely keep things together with the severity of my illness. Yes, you have to put your oxygen mask on first. In hindsight it was a good thing as we were able to have her see Dr Hepworth and her situation turned out to be much more complicated when he got in, any less experienced ENT would have not handled itā¦blessings in disguise. This may not be comforting to you right now but trust and KNOW you are doing the best you can and will be able to take care of her once you are better. You are so close, keep being the amazing mother you are 
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Thank you. 
I think its almost impossible to be a parent and not have some guilt about having not done enough and sometimes being a little selfish.
Yes we all should try and have gratitude (count our blessings) we have found this blog which hopefully has led us to the doctors we need and with the experience who can acknowledge our very real medical conditions and treat it. I feel lucky I found Dr. Samji and he reviewed my scan within a couple weeks last January and confirmed the diagnosis. I was in his office a few weeks later after scoring a $115 RT ticket to fly there. The stars certainly aligned for me. My neurologist who suggested the possible ES was shocked that I was able to act in lightening speed. I feel bad for those here having to wade thru the medical systems and road blocks to even get a diagnosis, find an experienced surgeon and then finally surgery. It can be a gauntlet for many. Thanks again and many hugs for the support
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My saga continues, never a dull moment!
My standard post op US showed continued B jugular stenosis at C1, darn! but explains why my most recent leak repair failed so that is helpful information. I am scheduled for another angiogram next week with either balloon venoplasty or stent depending on the pressure gradients. Hope this goes off and can help me move forward!
Thinking of everyone in these times ā¦ hang in there!
Oh JustBreathe! Thatās not news you wanted to hear! Iām sorry your C1 is still causing a problem after styloid removal. We always hope that removing the styloid will take enough pressure off the jugular vein to reduce or eliminate the stenosis. Iām so sorry youāre facing more tests & procedures. I hope all goes well with your angiogram & whatever course of action is chosen to help you & for a CSF leak repair that stays put for the long term.
Iāll be prayingā¦ 
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So sorry that you need to have that done, will be praying that it goes well & you finally get more relief from these symptoms. God bless x
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Just Breathe,
Sorry to hear you didnāt get all the relief you were hoping to get. On the good side, you have found out what appears to be causing continued problems and have plans to hopefully address it. That is half or more of the battle. One step in front of another. I hope the next procedure goes well. You sound like you handling this pretty well but we all know this is a struggle. Stay strong 
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@Isaiah_40_31
@Jules
@Snapple2020
Thank you everyone! It is always a bit of a gut punch for sure however, it helps to explain why I am still having problems and that is very helpful. My case just highlights how complicated our bodies are and deepens my respect for those doctors who are willing to dive in for the long haul with us. They are just as disappointed as we are, for sure!
So I choose to see this as yet another opportunity, to learn more and hopefully help better care for those to follow. It takes a village and I am grateful for my part. I am grateful for this group and the tremendous support hereā¦ 
Cheers and be well!
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Delighted for youš¤
I am just seeing this. I am so sorry!! I wish I could help. Please know I am thinking of you and keeping you in my prayers. I want you feeling well and ready to tackle those Colorado mountains. Please keep us posted on your upcoming angiogram and next steps. I want to send all the warmest hugs and healing your way.
PS Thank you for being there for me this week after my styloidectomy and sinus surgery. I finally stopped crying and am pulling it together 
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CONATIVE ~
Iām glad things are improving for you. Surgical recovery can feel like it will take forever, but bit by bit our bodies recover, & bit by bit we regain the footing in life that we feel like weāve lost. Finding this forum is a lifeline for so many people struggling w/ ES along w/ other related & unrelated health challenges. JustBreathe has been a source of strength for many of our members. We love and appreciate her, too!
Keep your chin up even on the hard days knowing that in time you will feel so much better!
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Thank you Isaiah! Surgical recovery caught me off guard for whirlwind there. I have to remind myself itās a process and Iām healing. I definitely have some improvement I am so thankful to everyone on this site. You all have given me such hope and kindness. Not sure how I would do this without a supportive community who understands all too well. Thank you again for being here.
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