My name is Kevin, 31 years old, living with juggler vein compression since May 2021. I wanted to share my journey and express how helpful this site has been to me over the last couple of months.
Here is a quick recap of my symptoms:
Left Side Tittinus
Brain Fog
Headaches/Eye pain
Trouble Sleeping
Vertigo (learned to control this from happening often real early on in my diagnosis)
I live in NYC and woke up one day back in May 2021 to all of the symptoms above on my right side ear only. Went to over 20+ ENTs and Audiologists that had no idea what was wrong with me.
Last Summer around August i came across this site which had some reference to āpulsatile tinnitusā so i decided to start my journey with Dr. Patsalides out of Northwell Health System in Great Neck, Long Island. He sent me for a bunch of scans and discovered that my juggler vein was compressed on both sides even though I was symptomatic only on my right side. He decided he wanted to do a venogram/ballon procedure. Basically he used a catheter to get to the compression area and inserted a ballon hoping the vein would remain open and would stent it if it held. I had that procedure on January 3rd 2024. After the procedure he determined that I would not be a candidate for a stent cause my styloid was pushing on the vein on one side and my C1 was pushing on the other side. I was then referred to Dr. Peter Constantino who has an office in Westchester.
Dr. C is one of the most amazing doctors iāve ever encountered throughout this entire journey. His knowledge base + his way of explaining things leave you feeling much better and not so alone as iāve felt since these symptoms started.
Anyways, I had two or three meetings with Dr.C and Dr. Michael Tobias. They confirmed I have severe compression and we decided to move forward with surgery. The surgery was 100% the same for all of those who have used Dr.C on this site. He removes the stylod completely, digastric muscle is removed, I guess he rearranges other veins inside if they are wrapped around the jugular vein, and Dr. Tobias shaves the C1.
I had this surgery April 1st in Stamford which is the hospital Dr.C prefers. Iām now Day 5 post op. All my symptoms are gone besides the ringing in my ear - i can say the ringing is much lower and i hope that the ringing will go away completely once iām all healed. I know the healing process can take weeks, months, maybe a year - everyoneās different. My face is numb and my ear i can barely feel it but that gets better daily. My arm hurts a lot though but it isnāt anything i shouldnāt have expected as Dr.C told me my arm will feel weird for a while.
Anyways, I felt compelled to officially join this site and share my story as iāve spent many sleepless nights reading all of your posts which helped me find these doctors. Iām on the road to recovery and if anyone in the NYC is wondering who can help them - Dr. Peter Constantino is a legend.
I did have one question for anyone that had the ringing of the ear - did that ever go away a couple months after the surgery or get better at least?
Iāve just been advised for surgery by Dr Hughes in London, so looking for some reassurance itās the right thing to do, and your post came up! My symptoms are very similar to you.
Had a bang on the neck at work, then three days later woke up to headache, dizziness, progressed to include pulsing tinnitus, blurry vision, eye sight changed (I now need glasses). Head pressure, insomnia, neck and jaw pain.
So good to hear you can already realise the improvements! Honestly I would happily live with the tinnitus if I could shake this head pressure feeling and dizziness!
How did you learn to control the vertigo early on if I can ask?
Happy to hear you are doing the surgery, Iām sure you will have positive results!
So my vertigo would trigger the minute i put headphones, q-tips, or basically anything in my right ear. Also, loud music would also trigger an episode. Once i figured that out i was able to go over a year without any episodes as i avoided those triggers.
I also want to recommend these specific ear vitamins that i think help control vertigo episodes.
Thank you so much for your update, @Kevin! Iām really glad you joined our forum even if itās after surgery. Your ES story & post op report will be helpful for members who are new or still working at deciding on the right steps to take for symptoms recovery.
Some members have had complete recovery from pulsatile tinnitus where others did not. The fact yours is already reduced is a good sign that it may go away but it could take several months or more as you noted.
Please stay in touch as you continue healing. Sometimes symptoms get worse again before they get better so donāt be upset if you notice that happening.
Thanks for the note, everyones input has definitely allowed me to manage expectations. I will continue to post updates.
I do have a video after the surgery that Dr.C shared with me but its super gross so not sure if its appropriate to post here. I will if anyone is interested.
I have another post op this Thursday and will be requesting his notes which i can share here once received.
Hey Kevin,
Thank you for sharing your story. I will be so interested to hear how your recovery goes and which symptoms get relieved. I have the same symptom profile as you and a consult scheduled with Dr. Costantino on April 11. Just curious if there was any discussion about eventually needing to do your other side?
Thanks,
Christine
Iām so glad that youāve been able to have the surgery! And that your symptoms have improved so quickly, thatās great to hear
I had bilateral jugular vein compression, I had pulsatile tinnitus but it was the whooshing sort. That mostly went soon after surgery, although I get the more āstandardā ringing in my ears still- itās not too bad though I can ignore it & I donāt know if itās an ES thing anywayā¦
I hope that you carry on healing well, & am really glad that you came here to share your story!
Oh great, I have a 11AM appointment him on the 11th. Maybe Iāll see you there! You can mention my name to him, heās really good and hopefully heāll be able to help you.
So based on my scans i have compression on my left side as well but i have zero symptoms. We briefly spoke about the left side but focused only on the right side. When i go back to his office Iām going to ask him what is best for the left side.
His coordinators are really bad to work with so just be prepared for a lot of misinformation from them. I mentioned this to him in a kind way and he ended up giving me his cell phone number and i spoke only to him leading up to my surgery.
Wish you all the best. Keep me updated and feel free to ask me any question.
Thanks for the kind words and insight. I guess only time will tell if the ringing goes away. I too have found to live with it and ignore it but would be great if it can go away completely lol
Hi,
Thanks for the tip. Iām actually in CA so Iām doing a telemed visit. How long between your initial consult with him and your surgery?
Have a nice day,
Christine
I see what you mean about the disorganization. I checked to confirm they had all reports and scans and they said they had scans but no reports. I checked my emails from a few weeks back when I sent the reports and received an email confirmation āreports receivedā. No big deal, I just resent them. Iām glad I checked (because of your email). Thanks.
How did you come to the decision to do the right side first and not the left?
Prior to surgery, did you ever get like sore spots on the top / back of your head? My whole scalp feels like itās under pressure and I seem to be getting lumps / spots all over which are quite tender. It seems to make sense this could be from increased blood pressure in the head but not heard of anyone else having this.
Kevin, this is awesome news. I too am Costantino / Tobias patient.
Note it is Costantino (not Constantino)
My brain fog, hangover feeling, and nausea all resolved (tinnitus remains) that is likely my fault as a youth too many loud concerts, headphones, etcā¦
I put together a website you may find interesting, and Iād love you to share your story on it (if you are so inclined) You deserve to feel better - Jugular Vein Compression
Not sure if you remember but we spoke via YouTube a while back when i came across your video. I will definitely check out the site and can provide anything you need for it.
Sure! So the decision to do the right side over the left side was that i was symptomatic only on my right side. I have zero symptoms despite compression on my left side. Maybe the compression isnāt as severe as it was on right? I never asked too many questions about the left side and all conversations have revolved around my right side with the doctors. I do have a follow up on Thursday and planned on asking whats best practice with the left side. I will update you later this week.
I did not have any sore spots or overall head pressure. I would feel pressure on the right side of my head along with eye socket pain but Iām not sure if thatās exactly similar to what you are experiencing.
Thanks Barry. Iām going to send you an email before the weekend is up with my story and hopefully my scans via the contact section of your site! I will also post here as well for others.
QQ - Iām only Day 8 post op and my arm is extremely sore. Since you have your procedure back in October I believe - did that pain/discomfort go away? Iām excited to get back in the gym but donāt want to have my arm fail on me while lifting weights.
