Hello @Msdstc
I am so very sorry to hear this. If i may ask, in what way did your surgeon say their hands are tied? If i recall you are ~6 weeks post op, is that correct? This may be the biggest limiting factor, especially with how long you were under anesthesia and the intricacy of your vascular piece. The vessel may be too compromised and still need time to heal from the first surgery to warrant to risk of venoplasty yet. Repeat general anesthesia so soon brings substantial risk itself. It is a delicate line to walk and any surgeon worth their weight takes this into consideration. I hope when you recently went tot he ER they checked your optic nerve pressures - yes? Are you on Diamox and Plavix, sorry but I can’t remember.
Stay on this forum, keep talking it through. We are here for you!
I just re-read your post from 4 days ago & realized I had a similar situation w/ my eyes several years ago. My symptoms were fairly identical to yours except in only one eye. The other eye jumped into action a month after the first eye. My ophthalmologist determined it was my vitreous humor pulling away from my retina. I was sent to a retina specialist & saw him several times over a 3-4 month period. The vitreous humor pulling away from the retina is only dangerous when the retina tears or detaches. That’s what the retina specialist was looking for. At some point, the pulling away process stops & if the retina is still intact, all is well. If it was injured then repair surgery is necessary. I was fortunate that my retinas were both fine in the end.
I’ve actually been assessed and while my vitreous is sloshing a bit it’s not getting any retinal traction. These flashes have been going on for years off and on but they’ve gotten far worse in the past 2 months since the surgery
I can relate to your fears 100%, have voiced them myself to my surgeon in the past when told I need more time before having another intervention. It is an incredibly challenging and terrible place to be. I can offer you hope though that is real and true. You have gone through the paces to ensure these things you are experiencing are not permanent. That is the not wasteful side of going to the ER although it was anticlimactic for you. My scans always came back normal as well and it is incredibly frustrating. I have been pulled out of the absolute bottom of the bucket where I thought for sure i was too upside down to come back and have made great improvements.
The last thing you can risk is dissection of the vein - that is permanent and terminal.
If Diamox was helpful but you cannot tolerate it did they offer any kind of diuretic to help decreased your pressure? I am allergic to Diamox so Spironolactone is what I have used successfully in the past. You would have to monitory your liver function.
I know another 6 weeks sounds interminable but you can do this and you will be better than you are now - you will. Give your body time to heal and gain strength enough to withstand the next step. Your problem has been identified, that much is sure. You have a team that is outstanding. Now you have to take it one breath at a time. You can do this. You can. Stay here with us, keep talking it through.
I’m sorry I neglected to reply to your response. I agree w/ JustBreathe waiting is so hard when body systems are failing. I hope that your doctors intervene in a timely fashion & that nothing that’s going on creates a permanent problem. Praying for you.
Thanks so much, sorry I’ve been quiet just been really bummed out. I’ve been trying to keep my head up but things are going pretty poorly. I had another eye workup and the doctor reiterated that he doesn’t believe my symptoms are related to the head pressure due to the lack of papilledema. I’m 100% certain my eye symptoms are related to the pressure given I can feel my eyes swelling and the pressure on them. On top of that certain postures are worse than others
All of that aside, even if the eye symptoms were somehow unrelated I still have the awful headpressure, the constant wobbling/dizziness, brain fog, etc
Unfortunately so many doctors are unfamiliar with the effects of these conditions and when they can’t see objective findings they struggle to see it as a real condition. I thought for sure the bilateral 95% stenosis in the largest vein outflow for the brain would let them know how I was feeling, but quite a few of my doctor’s don’t want to press any further.
Luckily my best doctor (the neurointerventional radiologist) seems to fully understand, but he’s just so scatterbrained and busy that it takes several attempts to get through to him to kick this back up. For instance he warned me over and over prior to the surgery, that the surgery was simply the start, it was almost certain the veins were fibrosed and wouldn’t open without some help. My last visit with him he was confused why the surgery did t work, when I reiterated what he discussed with me prior to the surgery it was like it clicked back in place that this surgery was just step 1. Finally he ordered me a new ctv to check the stenosis and see how were looking.
Anyways thanks for all the concern everyone. I’m hoping I can bounce back someday, I feel my life slipping away a bit to be honest. This sounds really pathetic, but I’m at the point where I’m considering something like disability. I feel like my focus is absolutely plummeting and I can’t imagine keeping this up.
I can remember how bad I felt before surgery so I can sympathise with you, it’s grim…I’m glad that you have this neurointerventional radiologist on board, even if he is scatty; it must be so hard advocating for yourself when you’re feeling bad, but sounds like you’re doing this well. Don’t give up, keep pushing, & will keep praying. Gentle hugs to you
Glad to hear your NIR is still your corner, please let us know how the new CTV goes! All it takes is one doctor who is understanding and willing to keep driving forward, even if he needed a little reminder…those brilliant brains can be that way
As much as we all want the one hit wonder surgery it rarely goes that way when you have multi systems issues. The layers of the onion go deep, just have to keep your head up and take each as they are unmasked.
I know you are suffering, and it is very real. Follow through with this NIR and keep breathing nice and slow. Thank you for the update and please keep us posted with the new imaging!
New ctv was unfortunately a disaster. The styloid was not successfully removed fully and I either have full stenosis of the vein or have a massive thrombus. They’re starting me on blood thinners asap.
I’ve basically been told to seek a second opinion so I’m reaching out here for a doctor with a specialty in soft tissue. I don’t have much of an actual styloid process it’s all stylohyoid ligament. Need to go in for round 2 I guess :(. Please anybody who can help i can use it.
Oh boy, I am so so sorry to hear this.
Okay, how to move forward.
Below is the doctor list from a FB page for jugular venous outflow disorders which has a good moderator. That may be a place for you to find further information as well. I hope this is helpful. I have worked with Dr. Annest (Denver ) who partners with Dr. Hepworth on his ES surgeries. Dr. Annest is a pioneer in vascular surgery (and the surrounding soft tissue) and people fly in to see him from all over.
You are such an amazing person, you will move past this but it will take some additional work. I am relieved to hear you are on blood thinners, they have always helped me. Please stay on this forum…we are here for you! Be well
Baltimore, Maryland
-Dr. Ferdinand Hui (Neurointerventional radiology [NIR] - Cerebrovascular)
-Dr. Peter Vosler (Otolaryngology - styloid surgery)
-Dr. Sheng Fu “Larry” Lo (Neurosurgery - C1)
Sacramento, California
-Dr. Ji (NIR - cerebrovascular)
-Dr. Jian (Neurosurgery - C1 & styloids)
Phoenix, Arizona
-Dr. Peter Nakaji (Neurosurgery - C1 and styloids)
-Los Angeles, California
-Dr. Kenneth Liu (NIR - Cerebrovascular)
Manhasset, New York
-Dr. Athos Patsalides (NIR - Cerebrovascular)
Denver, Colorado
-Dr. Stephen Annest (NIR - Cerebrovascular) Vascular Institute of the Rockies
Salem, North Carolina
-Dr. Kyle Fargen (NIR - Cerebrovascular)
Thank you so much. I’ve already reached out to dr. Annino to see if he can help, but given my current condition I’m willing to go wherever to see the very best.
I’m scared right now the doctors said no heavy lifting, stay hydrated etc.
Oh good! Dr.Annest is excellent! I wouldn’t be surprised if he consulted with Hepworth.
The advise is prudent. If it is one thing I have learned in my wild ride is our bodies are incredibly resilient and can heal when given the window to do so. You are in a healing window. Please reach out to me any time!
So sorry to read about your new CTV results, no wonder you’ve felt so rough…sounds like JustBreathe has given you a good list of doctors to try; her experience & knowledge in these issues is better than ours, hope that you can find someone to help you. Thinking of you, & keep in touch to let us know how you get on, will be praying for you
) who partners with Dr. Hepworth on his ES surgeries. Dr. Annest is a pioneer in vascular surgery (and the surrounding soft tissue) and people fly in to see him from all over.