Hello I would like to know from those that had pulsatile tinnitus before the surgery and had it disappear after, did it go immediately or did it take a while?
1 Like
Mine went fairly soon afterwards I think, my other vascular symptoms did too, but I was lucky & I hadn’t had those symptoms for as long as others have…and from reading many post-op stories on here that does seem to be unusual!
Have you had surgery, or are you still considering where to go?
2 Likes
Hi just had mine Tuesday brain fog gone but pt still there 
1 Like
@markp - Tinnitus is usually one of the later symptoms to resolve after IJV decompression. It can take a number of months for the brain to adjust to a new level of blood flow. Also, many of our members who’ve had bilateral IJV compression have reported that their tinnitus didn’t go away until both sides had been decompressed. If I recall, you only had one IJV that was compromised so hopefully this surgery will be the only one you need to get good results.
ES surgeries in general can have slow recoveries due to nerves being very slow to heal. Try continuing to sleep w/ head elevation at night to see if that helps reduce your tinnitus at all. If head/shoulders elevation during rest makes symptoms worse, it’s best to sleep in whatever your more normal position is.
2 Likes
Glad that you were able to have surgery, it’s still very early days & you’ll still have internal swelling…if you’re thinking is clearer already then that’s a real positive, try to focus on that … Where did you opt for surgery in the end , UK or Turkey, & did you need a C1 shave? If you’re well enough to answer questions…Praying you heal well and that the surgery is successful 
1 Like
Though I have been diagnosed with pulsatile bilateral tinnitus, I could never hear it actually pulsating. It was constant, extreme and of an almost deafening nature, and I could easily increase the high-pitched volume with head, neck, jaw and scalp movements. After right side decompression, there was a significant and welcome reduction, noticeable right after surgery, but it has not completely disappeared after five months. Last week I had the left side decompressed with a similar result. I’ll use a snow shoveling analogy: There was a blizzard of tinnitus in my whole head prior to first surgery. Now, that that side of the driveway has been shoveled, snow is still falling over there, though more lightly. After the VERY heavy snow was shoveled (by a surgeon in Arizona!) from the left side of the driveway last week, it’s still falling there, too, but again much more gently. I can still modulate the noise (increase the volume, that is), but not nearly as easily as before. Though I had many other symptoms of Eagle, it was the years of screaming tinnitus that pushed me to get proper diagnosis. So, as was the most critical symptom of mine, I am noticing what changes and what doesn’t and will make reports to various doctors I’ve seen about it, especially Dr Nakaji. I’ll gladly accept these post-decompression improvements and, who knows, perhaps it will disappear completely over time. However, if I’m left with some tinnitus after, say, a few more months, I may decide to live with it or explore stents, if future imaging shows I could possibly use them. To sum up, I’m definitely right on top of my tinnitus at this point in time. I do owe it to myself, though, to be vigilant after having suffered severely for decades and I think I owe it to the medical scientists who want first-hand updates from patients in regard to improvements. As some cases of pulsatile tinnitus seem to be directly related to Eagle Syndrome, I think all information would be welcomed in helping to further the science.
2 Likes
Hi there- I’m 8 months post-op, and I had tinnitus in both ears prior to surgery, although the exact sound I heard was different in each ear. The ear that was only a high pitched ringing sound improved immediately after surgery and has never returned. But the ear that had the whooshing, pulsing sound like what you’re talking about? Yes, that sound hung around for a while, then went away completely for a while, and I now do have it intermittently still, but it’s much better and is not constant anymore. Like, it goes away and then returns only occasionally, so it’s way better than before. But that ear did take time 
Here with you though. I get it. Hang in there! One thing that helped me when it was still bad was using an air purifier and noise machine to create ambient noise in my home so that it didn’t drive me completely crazy.
2 Likes
I have had bilateral ijv decompression. Always constant tinnitus in left which seemed better immediately after surgery and then returned. and since surgery now i have it occasionally in the right. Such an annoying symptom! But finding out i still have compression, needing possible stent, journey continues
2 Likes
@Rainbow - Do mind telling us who did your surgery? I’m so glad you’ve had a good outcome & appreciate you sharing details of your recovery, or mostly so, from tinnitus. That’s encouraging! Also your advice about using a “noise machine” for background sound to help distract from the tinnitus when it was more of a problem is a good suggestion. I just got a hearing aid for my left ear which has chronic loud tinnitus. It makes a soft sound that’s designed to help me be less aware of the tinnitus. Jury is still out as to whether it’s helping or not.
2 Likes
@birdie1, I’m sorry that your IJVs haven’t stayed open in spite of the decompression surgeries you’ve had. Did Dr. Nakaji suggest doing a venoplasty to see if that helps or are stents the only option you have now?
I have been anxiously waiting for a phone call appt i have scheduled with dr Mehta next week. So i hope he can offer me some type of treatment. Then i can forget about this long wait for Dr Fargen, and i have checked back with his office several times and my info is correct. I just don’t understand their scheduling process, very frustrating.
2 Likes
Yes, my surgery was done by Dr. Payam Entezami at the Mayo Clinic in AZ. But I only got in to see him because I was referred by Dr. Adam Kravietz at AoC Arizona Otolaryngology Consultants in Scottsdale, who knew practically right away that ES was what I had. And Dr. Kravietz was medical provider number 22, so it was a LONG journey to get there! All my symptoms are mostly gone now, except that do still have the GPN which affects my throat which affects my vocal freedom. So Dr. Entezami referred me to the neurology department at Mayo and is redoing all my MRIs by the Mayo team to make sure nothing else is bothering that nerve. So hopefully we can get my last remaining symptom sorted out!
2 Likes
Thank you for the information, @Rainbow. I’ll add Dr. Entezami to our Doctors List with a note about needing to be referred by Dr. Kravietz. I’m really glad you’ve had such a good outcome. Having had to see 22 doctors before you finally got a diagnosis is just pathetic! How can so many doctors be so uninformed about ES?! We have a number of members who’ve been down that path though. 
Please let us know what you find out once you’ve got some information from the neurology department. I hope something is found so that a solution can be suggested. Since your voice being affected, too, your vagus nerve may also be involved vs just your glossopharyngeal nerve since the vagus plays a primary role in vocal cord function. It would be worth considering that nerve as well.
We have members who’ve had residual nerve pain, & the ultimate solution was to take a low dose of a nerve pain medication for the long-term which has been very helpful for them.
1 Like
@birdie1 - I also hope for you that Dr. Mehta can be of help. Please let us know how your appointment with him goes.
1 Like
I’m glad that you were able to get treatment- eventually! And that your surgery has helped with the symptoms, hoping the last one can get resolved!
1 Like
Hi! Today during Sunday School I turned my head to the left and had an experience that I’ve never had before. This was the first time ever. And I’m wondering if it’s related to Eagle syndrome. When I turn my head to the left, I saw double vision. There were five people to my left, and then there were 10, two of each person, and then the vision blurred, and I moved my head to correct the problem and it stopped. This lasted approximately 30 seconds at the most. They got a wheelchair for me and took me to a vacant room and fortunately there was an RN and an EMT who are at church. They examine me and suggested I go to the ER. I was in the ER for 6 hours, and now they’ve admitted me to stay overnight for more test. Record show they’re doing about 16 tests. The neurologist that checked me out said he has not treated very many patients with eagle syndrome and he would have to read upon it. The physician’s assistant that saw me did not know about eagle syndrome, nor has the RN that has seen me. In addition the muscle in my upper right arm has started to hurt, It is the same kind of pain I have been through physical therapy with on my left arm. However, image on my left arm said I had a torn muscle, but the pain feels the same. I have had today CT scan of brain, no contrast; CT scan of neck with contrast, chest X-ray, the first tropinon test was at 11, 2 hrs. later it was 10, and I haven’t checked the 3rd one yet. I now feel like nothing happened. The double vision was first time this has ever happened. I just learned about Vascular Eagle Syndrome, and will check it out. Any suggestions on what to do next to help convince doctors to see if Vascular ES could be my problem. I am now waiting for an MRI, no contrast, on my head and neck. Thank you so much any input you can share with me!
2 Likes
It could be that a blood vessel was compressed when you turned your head and this caused the double vision? The CT with contrast might show this- if you can get copies of your imaging that would be helpful. It may not be related to ES, but you’re in the right place to get a thorough check-up, home you find out soon!
2 Likes
@geppard - I’m sorry that happened to you, but God provided help at just the right time! It’s great that there are members of your church who are medical practitioners.
If you got copies of your scans on CD, then the CT w/ contrast can be converted to 3D images if it wasn’t done in the radiology department. You can either ask if the radiology dept. can convert the CT slices to 3D or you can do it yourself or have a techy family member do it for you. You’d need a disc reader & either radiantviewer.com (if you have a PC) or Bee Dicom Viewer App (if you have a Mac) to convert the CT to 3D. You can upload some of the images here (front view, left & right side views & a view from the back) & we can also give you our non-medical opinions. Just be sure your name, address, & birthdate are blacked out on the images if you post them here.
I’m glad the hospital was so thorough. Hopefully you’ve now got an official ES diagnosis.
2 Likes
I am hoping all of your other tests come back clear. Dizzy spells, feeling faint etc are a terrifying feeling.
You will find so many helpful and kind people here. Praying for answers for you soon!
2 Likes
Still no real answer. The 2nd neurologist shared she thanks my double vision was caused by a muscle in one of my eyes. I already have a 6 month appointment with my eye doctor for Wednesday, I’ll get his opinion and I just decide where I go from there. I really don’t think it’s muscle in my eye because my heart was feeling funny as well. I find it sad that two neurologist a physician’s assistant and two nurses were not familiar with ES. The doctor that discharged me said don’t see it very often. I took the opportunity to reply with “They would probably see it more if the right imaging technique was used.” Thank you for your response!
3 Likes