Been a long journey surgery coming up for jugular vein compression. Need advice!

So they’re likely doing intraoperative angio during to check pressure gradients and see if any flow restores. Yeah it’ll depend on what we’re looking at in terms of fibrosis. I’m not anti stent I just wish it would pop open on its own.

How was the balloon procedure?

Edit- btw thanks so much for your feedback and support. Pretty scary confusing times right now and feeling pretty awful . Can I ask what your symptoms were?

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Yes, this is a daunting place to be and the learning curve is steep. However, your fortitude and sheer determination has brought you to this very hopeful place and you will do well!

I am glad to hear they will be doing the intrapoerative angio, this is key for many reasons (evidence for indication of treatment for insurance coverage included).

The balloon venoplasty was a piece of cake comparatively. Outpatient procedure, only recovery was soreness from the approach site (femoral vein and radial artery), no bending or lifting for ~1 week.

My vES was only unmasked due to inability to hold a skull base CSF leak repair due to rebound intracranial hypertension. I did not present with the typical report of facial/jaw pain but rather vast multisystem neurological symptoms (bulbar, brain fog, proximal weakness, ataxia, thermal dysregulation, GI motility and urinary tract sx, severe eye pain and tracking dysfunction to name a few) It is important to note that it is impossible to differentiate these symptoms from the CSF leak, they feed off of and into each other.

I hope this has been helpful, please lmk if there is any other way I can be of assistance (you can DM me any time). This site is an incredible place of solid information and genuine support, lean on it!

Do you have a surgical date yet? Keep holding on, you are on a good path!

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I’m officially booked for everything including pre-op. What should I expect for that? I also have gotten some conflicting information. Since it’s an unusual surgery I have 3 doctors and the anesthesiologist on-site for this one, the neurosurgeon said 5 days, the skull base surgeon said 1 for recovery. I guess we’ll see.

Just breathe, did you notice a marked increase after the 2nd styloidectomy? Did you see improvements after the first?

@Msdstc,

So happy that things are moving forward and sounds like you have an amazing team to take excellent care of you!

My first styloidectomy was one year ago and I had very significant improvement for ~3 months. Unfortunately my IJ venous stenosis resulted in rebound intracranial hypertension and another skull base leak so I slid backwards again. My other remaining side styloidectomy was derailed by COVID last April and I am getting ready to have that done next week - finally! Will have to let you know in a bit :wink:.

Pre-op is different for every surgeon and hospital. My experience is COVID testing 2-3 days before surgery and a lengthy phone consultation with nurse 5 days pre-op. Phone consultation with anesthesiologist night before. All blood work was done the day of surgery. As far as length of stay that depends. I was in NICU for 5 days after my craniotomy, 1 night for the first styloidectomy but that was before COVID. The discrepancy you have been given may be a moving target depending on your response to the surgery, what they end up doing and COVID. Never a dull moment :joy:

What is your surgery date? Please let us know how things go, walking with you in all of this!

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October 13th. You’re so kind and supportive I appreciate all the info. It’s invaluable given how absurdly rare this all is

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Actually it is not rare…only rarely diagnosed!!!

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Yeah that’s definitely true. The sheer amount of iih or migraine diagnoses without actually identifying a cause is really sad given this should be well known by now. Thanks to whooshers and tinnitus talk I was able to diagnose myself basically lol, unbelievable that my doctor’s had no idea what to do with me

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JustBreathe,

Please tell us your surgery date again. I think I neglected to put it on my calendar. :scream:

So glad you’re all set for surgery, Msdstc! The countdown has begun!!

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Hi! I’ve just been reading through all the posts.

The support here is second to none, some truly amazing and supportive people.:smiling_face_with_three_hearts: who have helped me immeasurable

I am currently going through a similar journey, with chronic debilitating symptoms for the last 3 years.

Just awaiting my Ctv results but from what I can see of them my right jugular vein is being quite compressed from styloid and c1 Process and left side has some compression.

Just wanted to reach out and say hi and good luck with you operation in October. Fingers crossed for a successful outcome and speedy recovery.

Natalie

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Monday the 21st yahooooo ! :laughing:

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Oh the wait… holding space and time with you🌻

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It’s on my calendar now! I’ll be praying!!! So glad it’s coming up VERY soon! I hope this is the end of CSF leaks, vascular issues & pain for you, JustBreathe. It would be so amazing for you to be able to get back to life “as usual”. Your journey has been long & rocky w/ some nasty pitfalls injected in there. It’s time for an easy path w/ no obstacles. :pray:t4: :partying_face: :blush: :heart:

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We will be with you every step of the way :kissing_heart:

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Thanks everyone, you are truly priceless. It has been a very interesting journey. We all have a part to play, I am grateful for mine and having crossed paths with ALL of you!!! Will post as soon as I can :blush:

Prayers and every good for you @Msdstc and @Natty04 as you both wait… be well

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Good luck @JustBreathe!! Will be thinking of you. :heart::heart::heart:

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Don’t know why, but I thought your surgery was this week! So you’ve had extra prayers :joy:

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Surgery tomorrow :frowning: pretty nervous. Still waiting to find out what time.

I was jus thinking about you with your surgery tomorrow! Waiting for the time is so stressful. Are you ready otherwise? Know you are not alone and so many of us are with you and eagerly looking forward to hearing your success story that will come. You have a great team working with you, you are in great hands :purple_heart: Just breathe, nice and easy both in and out…longer on the out :grinning:

Thanks a ton. I’m most nervous for the anesthesia. I’ve had my wisdom teeth out which obviously isn’t remotely on this level, but just that feeling of not being in control once they start the process scared the hell out of me. What should I expect for a pain level when I first wake? How’s sleeping? I struggle to sleep on my back so I’m curious to see how that goes

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