Living with EDS: My Jugular Stent and Cerebral Venous Stenosis - 1 Year Post Op

Hey guys! So, "Cerebral Venous Stenosis? Stenting? What does that mean? Brain surgery?!?" If you are frantically googling this, then you are probably in the same boat as I was a year ago. Sometimes getting answers seems to just bring up more questions... and unfortunately those questions don't always have easy answers. "How long is this going to last?' That was my first question. "Will I need the other side done in a few months?" "We don't really know" was the unfortunate answer. And thats the truth, its hard to know what the future holds. Thats just a reality of life with EDS..well, that's just a reality of life. But if you stumbled across this video looking for hope, I hope you found it. One year (and couple months) ago I made a decision that changed my life for the very best. Going into surgery, Dr. Liu asked me if there was one thing he could fix what would I choose. I told him "I want to be able to read again...Oh and walk!" "And breathe!" my mother interjected. "And breathe" I agreed. And I am happy to report that I walked back down those very halls just a few hours later and (with the help of a little vision therapy) have slowly but steadily finished 4 books this year...oh and I continue to breathe on a regular basis.
This is all just a very basic overview of my experience, so let me know if you have any more questions and maybe I can make another video answering them (or at least answer them in the comments).
Also, sorry if the lighting is a little weird, My camera lens broke, this is the last footage it ever filmed...RIP
Stent Vlog: • Vlogging with EDS: Eme...
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[@curtisbemis6640]

4 years later and Christina is doing amazing despite setbacks . So much love for her. I hope she gets back to KZbin soon..

[@chemicalbreath]

Your body is falling apart yet you always have a big smile on your face and an awesome personality. There is no way I could have the strength that you do. I admire you so much. one of my favorite KZbinrs. I pray for you and everyone with invisible health issues.

[@christinadoherty3212]

+Christopher Youse Thank you again Chris for your kindness! I have found that when you are forced to slow down in life you start to appreciate the little things more. It has probably actually made me a happier person. But I suppose thats kind of a choice. But I just always say “The only thing worse than feeling sick all the time, is feeling miserable and sick all the time.” So I fry to stay positive, I don’t always succeed, but I try. 💜 Life goes on, and we only get one

[@kaitlynchristman4125]

I don't have any of the same health issues but as someone who hopes to get into the medical field (and just finds anything medical super interesting and fascinating) your videos are so informative!! Love them! And I wish I could be friends with you because you seem like a super sweet and awesome person! ❤️

[@nikki10114]

Kaitlyn Gerken isnt she? I also educate doctors .im going to take public speaking n make a career out of teaching eds and the crap that comes with it

[@christinadoherty3212]

+Kaitlyn Gerken Well thank you so much! It always means a lot to me to hear when someone is interested in learning about this kind of thing. It gives me a lot of hope that someday many others will have access to the care they need. Not everyone is lucky enough to receive the treatment I have been 💕 I hope you stick with that dream! And I always do love a new friend, even an online one 😉 I feel like you guys are all my friends, you practically know everything about me at this point haha

[@melmelbug]

Christina is totally a super sweet and awesome person, Kaitlyn!

[@Lunafaie65]

I have EDS as well and p.o.t.s. Love that you make these vids! They make me feel a lot less alone.

[@curtisbemis6640]

We have a very big community you are definitely not alone .

[@ZebraGirl97]

Hi Christina. I started following you a bit less than two years ago when I got my EDS diagnosis. I've found your videos so helpful! You have lots of similar diagnoses, symptoms, and treatments to myself and your videos have really given me guidance and reassurance knowing that others have been through this as difficult as it is. I have MCAS, EDS, CVID, IIH, sinus dysfunction, gastrointestinal dysmotility, dysautonomia, autoimmune disease (MCTD), narcolepsy, severe hip dysplasia and femoral retroversion and some tears in my tendons and labrum, and most recently last week they diagnosed me with jugular stenosis and Eagles Syndrome (my left jugular in the middle of my neck is 2mm wide and so much fluid is backed up unable to leave my head, and the vascular and bone anatomy looks not normal/good). In the next couple months I'm going to have a jugular stent placed and part of my styloid bone removed, as well as anything else the vascular surgeon feels necessary since we can't get ideal imaging of the area due to my Iodine allergy and other problems. We haven't been able to image the vasculature anywhere else yet, I know I have some dysfunction in my cervical spine but unsure what so far. I just wanted to reach out and let you know how much I appreciate all the videos you've made, and I know how fatiguing it must be to make, so thank you :)

[@hannahmitchell2573]

2 videos in 1 week! What a treat!!

[@VaurionX]

Yay! I'm so happy to hear that the stent has continued to help you so much even a year later. That is great news :)

[@darkbluematter1753]

Yay! Bonus Christina video 😊 Happy to see you midweek. As always, you explained things really well.

[@christinadoherty3212]

+DarkBlue Matter 😊❤️

[@jasonparris6995]

Love your videos. You’re very strong.

[@Eyrana]

Thank you so nuch for this video! 🙏 I'm at the point now, where I really need this information

[@Boo-wk4uw]

You are so brave. You are also so smart to listen to your body. I am so glad that the stent worked. Your videos are really informative but at the same time they don't scare teens like me. Thank you

[@loiscassels8966]

Hey! So happy to see you again this week. Always interesting and a pleasure. I remember those bad old days and am so delighted to see you doing so much better.

[@christinadoherty3212]

+Lois Cassels Thank you! Lots of ups and downs, and you guys have all been amazing through both 😊

[@lauraelisee]

When you said swooshing sound in your ear that was the red flag to me that it was a narrowing in a vein

[@christinadoherty3212]

+Laura Elise Same! That was a symptom that really perked my surgeons ears when we were going over my paperwork. I could tell that wasn’t a good sound. I never knew what quiet was until now haha

[@HSolar]

Christina Doherty hun is it different from the pulse tinnitus sound I & many of us get. Currently been more pulsating since ears been blocking on/off. My pots/eds specialist so far thinks low csf pressure (SIH) symptoms (postural headache & abt 98% of the other SIH symptoms, so poss small/slow csf leak or dura stretching & thinks CCI possible get intermittant Occipital Neuralgia & some TN which could be cci or csf leak or both. But in UK so barely any surgeon expertise so at this point its watch/wait/prayer & he's even reluctant to try surgical testing as symptoms are just bearable (although feels like getting less, especially cognitive effects & a family) if dont trigger flare but as you know that means very limited living brain of not severe. But don't get more than minutes standing time. x

[@ScarletCandlelight]

Very interesting not even my doctor went into that much depth. Well at least I know what I'm in for next year. Thank you for sharing this.

[@NerdyCurlyGirl]

I'm so thankful you made this video! After watching this I have a very clear understanding of what may be going on with me. I have EDS and Eagle's Syndrome and I just found out that both of my jugular veins are narrowed by 2/3 but it seems like they may be separate issues and the styloids may not be the cause. I'm going to have an MRV and other testing. Thank you for such a thorough and well done video. You're also very personable so it's nice to listen to you.

[@Sheerahboom87]

Thanks a lot for sharing this video I've learned a lot from you.

[@faeriesmak]

Thank you for sharing your story!

[@christinadoherty3212]

+faeriesmak Of course!

[@ameliatang4559]

Really interesting video/story Christina regarding this! I learnt a lot! Thank you for sharing💖

[@christinadoherty3212]

+Amelia Tang Thank you! Im glad it helped. Im never quite sure if Im going to make sense when I explain things lol.

[@Bespeon]

I haven't caught up with your vlogs recently (sorry!) but I remember you having the stent in and I'm glad to hear how well it's worked for you!

[@christinadoherty3212]

+Beth Luna Thank you! 😘

[@stayaway4373]

I'm sorry about what you're going through.

[@victoriadavis8821]

Keep postive

[@helenhoover]

Hi Christina, I dont have EDS but I do have intracranial hypertension and transverse sinus stenosis, I am being evaluated for a stent. Thanks for this video, very informative!

[@kibbledd1]

Thank you for this--I have a preliminary diagnosis of MCAS and the only thing that's been hard to pin down is why I've had these bouts of temporary paralysis that would last an hour-and hour and a half at a time.

[@melmelbug]

Wow, what a story Christina, and quite scary indeed! You told it very well, and it is quite a blessing to all of us that the procedure fixed so many of those issues for you!

[@christinadoherty3212]

+Melanie Amaro ahahahahahahaha I love it!!! And I would definitely watch that video! I clearly need it 😂

[@scorpleeon]

Love how you talk with your hands. Plus ... I looked like a Dalmatian. 🤣

[@christinadoherty3212]

+scorpleeon Thanks! Haha Im actually working (slowly) on learning sign language and look forward to someday really being able to talk with my hands 😉

[@likeabunnie]

@@christinadoherty3212 that's AWESOME! I learned a bunch (well, a few signs anyways) as a little kid, cause my little brother has autism and didn't learn to speak at first so we kinda figured might as well try signing, too... He understands the stuff we knew as kids still, haha, I can sign "no" to him from across the room and he'll stop whatever he's not supposed to be doing, and it definately comes in handy when you're in a crowd and can just sign "potty" instead of yelling across everyone, "I'M GOING TO THE BATHROOM!" haha... I took ASL for 2 years in high school and I really loved it, I try and practice still so I don't forget everything... It's interesting cause a lot of the time I can't think of the word I'm trying to say, but I can do the sign which sometimes helps me figure out the word... It would be more helpful if more people around me knew sign haha, but my bff is great at guessing what I mean without getting caught up in listening to the words I'm saying hahaha... I'll come up with 10 words and none of them are the word I'm trying to think of haha! My chosen sister, and one of my best friends, Katie, knew asl, too... She was great at "translating" my words into what I was trying to say, and we signed to each other, and.... Yeah. She passed away last week, I can't really fathom that she's gone, and she'll always be with me so In that way she's still here. I miss her.

[@livewellwitheds6885]

thanks for talking about eds! I also have it! take care ❤

[@KimKozak]

Your videos are more informative than my specialists. I'm probably Musculocontractual type, with CCI. I'm very serious about how valuable your detailed medical information is; I found EDS, not my chiropractors not physical therapists. See the geneticist next month.

[@jj4christ]

I have severe Crohn’s and IIH and Venus stunting in my brain is coming soon because of hemophiliac headaches and Peritheal vision loss. Lots of scary stuff. Thanks for sharing your story.

[@IveGotItTwisted]

" I continue to breathe on a regular basis." You're so silly hunn, happy to see you smiling 😊 I'm also disabled and unfortunately most of the things I have are "invisible" so I am not always treated with understanding. I have an appointment with my GP tomorrow afternoon and while I'm cautiously optimistic, I'm absolutely terrified. I have written him a letter describing all of my symptoms and conditions so I can make myself clear and hear and he can help me get into the best health possible. Wish me luck! Hrs listenws I'm the past and has always been kind so I'm hoping I won't get disbelief 😓 Thank you for being a positive chronic warrior!

[@christinadoherty3212]

+nicole mcnaughton Very best of luck! You are in my thoughts and prayers! I know how scary that can be! Truly! Even if they aren’t an expert they can at least be willing to listen an learn. Let us know how it goes! 💕

[@IveGotItTwisted]

Christina Doherty Thank you! He's super nice and always hears me out so I am probably worrying over nothing but it's always scary to lay out to someone just how sick you are when you spend so much of your time just trying to look and feel okay. I'll definitely let you know how it goes tomorrow 😊 Thank you for thinking of me!

[@IveGotItTwisted]

Christina Doherty It went well! I was definitely anxious about nothing 🤣 He said he's glad I brought the letter in and confirmed both my fibromyalgia and dysautonomia with the rest of my official diagnoses. He said I'm very apologetic for trying not to sound whiny lol I'm so glad I got that over with and now I can dye my hair as a pick me up!! There aren't many treatments for dysautonomia so nothing for it this time but I was so anxious I forgot to ask for some testing to discern the type of dysautonomia I have. Oh well, next time! I have another appointment in a month so I'll ask then 🙂 Thank you for your prayers, I really appreciate it xoxo

[@christinadoherty3212]

+nicole mcnaughton So glad that it went well! Its always scary going ito these things. Im sure it feels like a lot of weight off your chest 💜

[@IveGotItTwisted]

Christina Doherty It really does! I'm going to do some research and ask for specific tests to find out what type of dysautonomia I have. The more you know the better!! Thank you for your kind words and support. It means so much, I've been following your journey for quite a while 😊

[@Haazziee]

I have pseudo tumor cerebri and I’ve had the Venus stenting done before. My pressure is around 20 and it really sucks. I’m sorry you have to deal with this!!!

[@nikki10114]

Hey christina i have seen ur journey and we are always having similiar issues at the same time.u are on the high to severe cases and i admire your strength because i am moderate to high . i also have brain fog with moving my neck. I been frustrated with my eye site being poor since age 3. I had a lazy eye and wore a patch 3 months but migraines and eds and just the whole "puzzle". I hated it and i love ur positivity. I hope to meet you in person.im from chicago but i want to learn how to better myself as someone with a journey as well. Def let me know!

[@nikki10114]

Also that procedure with the tube up the leg i have seen and been im so sorry just remebering that vision but still.

[@nikki10114]

I also thaight i had eagles omg

[@WackyLisa]

I asked if this video existed on Insta under another name. Thank you

[@Mary-jh9up]

thanks for sharing your story! I went into Dr. Henderson in October to get an update on my CCI since my symptoms had taken a dramatic turn for the worse. He wasn't 100% sure CCI was the only cause so he sent me to get an MRV to look for the same things you were. I get the whooshing noises in my ears and have a lot of pressure in my head along with other stuff. I see him in 7 days to see those results. I'm nervous I'll need a stent or shunt, but more nervous he won't find anything and I'll have to keep looking for an answer. Your video was really helpful, thank you for sharing your EDS story. It makes me feel like someone understands! xx

[@christinadoherty3212]

+Mary Schreiner You will definitely be in my prayers as you wait and when your appointment comes. I know waiting can often be the hardest part. I hope you can get everything figured out and can come out with a plan. ❤️ Absolute best of luck!

[@likeabunnie]

Medically Mary OMG... I completely relate to so much of what you both said! I REALLY relate to the fear of not having an answer. I was crushed that my upright mri didn't show CCI because that was my best guess and I KNOW that it sometimes will totally have my neck do the freaky cracking where my head is like, not supported for a bit until my neck is done with the crack a lacking, lol... But I've felt like I haven't gotten enough blood or csf flow to my brain for like... Geez, a decade... And it just gets worse. And i just really can't be upright, if I am it's not as bad if I wear my neck brace. I hope you get answers though... Waiting really is so hard!

[@likeabunnie]

I've tried to see Dr Henderson but can't find a phone number that works for him... Any suggestions? I've had the mini stroke things and just... I am more scared of not having answers at this point because I just keep getting worse and worse and I need answers! Thank you both for sharing, I really hope things get better for both of you /keep improving!

[@Mary-jh9up]

so sorry I didnt see this sooner! Dr. H just switched his office so that might be why the number isnt working. He is in Silver Spring now so maybe try to find the most recent number! My upright MRI showed my kyphosis in my neck but no instability, but after multiple digital motion x rays, turns out I was having instability/subluxations in my whole neck. So I can understand that. Dr. H is amazing, if you get to see him he definitely wont stop until you have answers

[@likeabunnie]

@@Mary-jh9up thank you so much for the reply! (also sorry I didn't see it sooner)... That's good info about Dr Henderson, that very likely explains why I had so much trouble finding his number! Luckily, I think after watching this video actually, I started learning more about stenting etc and came across info about Dr Liu with Penn state, and he seems way easier to get in with (still working on getting an appointment, just logistics at this point trying to get doctors to send my medical records over to him), but it works out because he seems to be the leading person to see for flow issues (I am fairly sure he's who Christina woulda seen/still sees, he formerly was in Virginia at UVA, I think) and it's kinda nifty cause I used to live in Virginia and now I live in PA (still a few hours drive from him, but that's nothing relative to how far Christina and so many others have to drive, so I'm definately not complaining! I'm really hopeful that he'll be able to figure out what's going on with me. Certainly nervous too about what that will mean, but it's way scarier to just keep getting worse and having doctors tell me nothing is wrong when... It is, haha. I hope your appointment with Henderson went well and that things are going as well as possible for you now! Sending prayers your way, too! Hang in there! *gentle hugs*

[@Sarakate601]

I don't usually like youtubers who just sit and talk to the camera about a disease they have or do story times and just try to have some obnoxious personality but.. I actually really like this girl! 👍 She's so cute and has a genuinely nice and magnetic personality. So keep on keepin' on girl! Im subscribing and I wish you the best with everything!!

[@chroniclesofabrokenperson2600]

I have many of these symptoms. And I have Eagle's Syndrome. As part of my jaw surgery Monday, he will be removing my calcified styloids. I soooooooo hope to get relief from having that done. If not, I'll need to pursue other causes of intracranial hypertension. Thank you for sharing your experiences!

[@christinadoherty3212]

+Chronicles of a Broken Person Eagles syndrome was definitely on our radar in my case but surprise surprise I have normal styloids! Wahoo! Best of luck in your surgery! I hope it provides relief in many forms ❤️

[@chroniclesofabrokenperson2600]

Christina Doherty thank you! Just a few more days. I'm more nervous about this than any of my past surgeries. It's my first one since my mast cells have gone full out crazy. I'm as prepared as I can get, with all of the protocols in place. I just have to keep reminding myself that God made this surgery possible, and He is in control 💖

[@evelynugsad2092]

hello po new friend here happy to see you always smiling thanks for sharing us

[@jessjerz755]

Thanks for the post! Can you describe the pain you feel now, level, type,frequency?

[@SellyNue]

I have some serious stenosis- venous as well as stenosis involving the different CSF ducts. I've already had angioplasty once on both of my jugulars, but they are clogged back up!

[@dmphax]

Correct me if I am wrong, but this sounds much like CCSVI that they have been doing to help with Multiple Sclerosis for a long time now. I have not heard of folks having this procedure done recently, it is quite controversial as an MS treatment. I know people who had it done, and one is benefiting greatly, the other actually got worse with their symptoms. I am glad you are finding it helpful! I have MS, but my disease hasn't progressed to the point of me seeking this particular treatment.

[@christinadoherty3212]

+Laura Gud Its definitely not a new procedure, its just rather knew to the EDS community. I don’t know a whole lot about the treatment of MS, but I’m sure thats very very possible. Its amazing how well it can work for some and how unfortunately others aren’t as lucky

[@dmphax]

Christina Doherty thank you for your reply! I am glad this is an option still. Since I had not heard of it being done for some time, I wondered if it had ceased as an option. The people I know who had it done travelled to other countries, as they could not find doctors in North America who could treat them. So it is great that you found specialists in N.A. who suggested this option, tested for it, and treated it! I wish more funding would go towards research into this option. :) xoxo

[@HSolar]

If this is this same as CCSVI (only researched it a little read & seen couple of vids inc from Dr Diana Driscoll (prettyill.com) & yes I saw vid re for MS & other conditions. Many thanks for the vlogg re your experience. Zebra hugs

[@rebekahgollihar6187]

Can you still see a chiropractor after this type of procedure? This has been very informative. Thank you.

[@RebelliousStory]

Wow! I can’t imagine having all those symptoms and then having them go away so quickly! That must have been a great relief. Does everybody experience so many severe neurologist symptoms from this problem? 🤔

[@christinadoherty3212]

+Bethany H It was surreal to be honest. I had had similar improvements in the past after neurosurgeries, but the recoveries were much harder (slower) and more painful. So the improvements were more difficult to see right away. But with this I opened my eyes in recovery after and my vision was completely different. Thats the first thing I remember. And then taking a deep breath. I cried a bit before anyone could notice I had woken and then refused to report any differences for a bit because I just couldn’t believe it was true.

[@alyshawisniewski3274]

This is how I found you

[@kellietipton1338]

❤❤❤❤

[@castanos2327]

You are so pretty sissy!

[@mudslinger888]

Have you considered doing voiceover for Animated film? Unique voice.. high plus nasal fry curious where you grew up? Found you searching for why am I having spasms in my neck veins, did you have fluttering veins laying down?

[@veronicareynolds372]

Can this condition be seen on a brain mri without contrast?

[@danielfreeman649]

Christina you are the beautifulest girl in the world and I wish I could hold your hand through some of these videos

[@kareennn7437]

Did you get a lumbar puncture and was your opening pressure high?

[@victoriadavis8821]

Ms Christina, have you ever tested for Arnold Chiari? All this information points to it, not all of them but,,, many..

[@christinadoherty3212]

+Victoria Davis Yes, Chiari was my first diagnosis. I was decompressed in 2012 and continue to retain flow in that area 💜

[@alyssakelly2550]

May I ask who your surgeon was and if he is EDS knowledgeable? I currently need a stent but am having a hard time finding a surgeon who is EDS knowledgeable

[@michaelurban5208]

Hi, Christina. Sorry to bother you, but I'm running out of options and don't know where to turn. I don't have EDS, but I do have LJV stenosis with multiple dural sinus stenoses (cause unknown), and I finally have imaging to prove what I've been telling doctors for some time now. Unfortunately, even with a cerebral angiogram in hand and stenoses of LJV, left jugular bulb, left sigmoid sinus, and left and right transverse sinuses, all with retrograde fill, I'm still having difficulty finding someone to fix me. My quality of life is abysmal, and I just want to be myself again. Can you tell me please who helped you? Is there a doctor you can recommend? I'm in Houston, but I'll travel anywhere to make this go away. Thanks for posting, and thanks for your time. - Mike

[@bumpybackroads1581]

do you have a private place that we could talk? i am experiencing a lot of symptoms of a connective tissue disease (possibly EDS) and also have increased intracranial pressure.

[@christinadoherty3212]

+Bumpy Back Roads Yeah, for sure! You can private message me on my personal Facebook. Its in all the descriptions. Its where I check the most. Otherwise if you don’t do facebook my email is there too ❤️

[@bumpybackroads1581]

Christina Doherty i finally remembered to message you on facebook! but i think it’s come through in the “message requests” area. so you may have to approve it to see it! :) I look forward to chatting with you soon!

[@allie.grimmer271]

Where the daily vlog

[@MyKidzChannel]

watched this till the end wish you do the same too God bless

[@danyella1579]

When is your birthday Christina? I know it's in December and that you're going to be 22 but idk the exact date.

[@christinadoherty3212]

+Dany Ella The 26th 😊 The day after Christmas!

[@irish2979]

She sounds like eugina cooney

[@nikki10114]

Lol u say venus stenting like i do.lagging and slow.just like ehlers danlos syndrome lol i slow down or dysautonomia lmfoa

[@christinadoherty3212]

+nicki p hahahaha I almost included a blooper real of me messing up saying it over and over and over! 😂 Those double “S”s kill me every time!

[@winterlandvlogs]

Hello christina how are u my new friend please visit my home thank u