I had a bilateral styloidectomy 2 months ago with Dr. Hackman but my symptoms have not improved. I still can’t lay down. Still get lightheaded and dizzy, especially when i turn, look down, or bend over. Still have tinnitus, ear pain. Can still hear my heart pounding in my ears when i recline. I also see floaters indoors and outdoors, but had my eyes checked and they said they were fine. I have more pain and dizziness after eating. Still have facial pain and have hard lumps behind my jaw under my ear. Another doctor told me it was lymph nodes swelling. But Hackman thinks it is muscle and gave me muscle relaxers which have helped with pain, but not other symptoms. I was thinking about reaching out to Hepworth to see if i have jugular compression but i dont know the process and keep seeing posts about how hard he is to get a hold of. Dont know if he accepts medicare or medicaid insurance. And dont have much to show him. I had a ct before the surgery. Does anyone have any suggestions for me? I desperately want to be able to lie down again and be able to resume some regular activities.
So sorry that you’ve not been helped with surgery, that’s really tough…It is still early days after surgery, there can still be improvements after a couple of months, it sometimes takes blood vessels a while to settle down, & also for the brain to adjust…
I’m not sure how easy it is to get seen by Dr Hepworth, as you said he’s very booked up & has had issues with his office, hopefully now he’s ‘moved’ the issues will be resolved soon. @Isaiah_40_31 has seen Dr H so hopefully can explain about the process getting to see him.
Sending you a hug 
@Carlak - I’m really sorry you’re still having so much trouble especially w/ tinnitus dizziness & ear pain. Your symptoms sound like possible IJV compression as you suspect. Was your CT scan with or without contrast? If with, your veins & arteries should be visible in the scan images, & you may be able to see whether your styloid(s) are compressing your IJVs against the transverse processes of C1 or if there are other areas where they look narrow. If no contrast, then only the bony structures in your neck will be visible.
Dr. Hepworth’s ofc is still in a bit of chaos as the transition away from the medical group he was part of has been messy. I recommend that you try calling his new office ph # (720) 899-9489 several times a day until you get through. I know he hopes that once the dust settles, the front desk people will be able to get all calls answered &/or messages called back in a timely fashion. Right now, I hear that’s not happening which was the problem w/ the previous group practice. Persistence will pay off. If/when you get through, schedule the soonest possible appt but also ask to be put on a cancellation list. Optionally, you can call intermittently during the weeks after you schedule to try to grab an earlier cancellation. It will be worth the effort & wait time it takes to get in to see him. Alternatively, you can contact Dr. Nakaji in Phoenix. He hasn’t been mentioned as much here, but he does decompression surgery & C1 shaving if necessary & has a good reputation. Our member @Chrickychricky recently had surgery with him & has been pleased with her outcome so far.
•Dr. Peter Nakaji, 755 East McDowell Rd., Phoenix, AZ, 602-521-3201, Works w/ vascular ES, has also done a research paper about shaving C1 process as well as styloidectomy
https://doctors.bannerhealth.com/provider/Peter+Nakaji/1103456y_source=1_MTQ4NjU5MDktNzE1LWxvY2F0aW9uLndlYnNpdGU%3D
I have two suggestions: 1) see If you can find a Naprapath (not Naturopath), they can work the soft tissue around the bones/ligaments/muscles and relieve tension that could be inhibiting your recovery. 2) Also consider seeing a Nuero optomologist - very different from a normal eye dr. They could help you with the floaters and getting to the bottom of your light headedness. If you have any questions on either of these options, let me know. Sheila
@Carlak - I forgot to mention that I had a floater problem about 15 years ago & learned that my vitreous humor was separating from my retina in my left eye. The ophthalmologist said this is common as we age & our bodies start getting more dry. I was sent to a retina specialist for follow-up to make sure my retina didn’t tear as the vitreous humor was parting company with it. The process & symptoms stopped after about a month then my other eye started. My retinas stayed intact & my vision was unaffected for which I’m thankful.
I am so sorry that you are still having such significant symptoms after surgery. I had a styloidectomy in December on my left side. I experienced many of the same symptoms. Before my surgery, I had a venogram and angiogram performed together. This was extremely helpful as it showed the extent of my IJV compression. My left IJV was occluded to the degree that the dr. was unable to access it from the usual spot and had to re-route the guide wire and come in through the “back door” of the vessel. I had severe pressure gradients between the styloid and c1 which explained alot of my symptoms. As it turned out, not only was my styloid compressing the IJV, but one of the ligaments was wrapped around it and cutting it off as well. My symptoms are not completely gone but they are greatly reduced. I still have the right side with severe stenosis but the doctor feels it is not necessary to do the surgery at this time. But, back to my point, I feel like if you suspect IJV compression, the venogram is the gold standard to confirm and to assess the degree. I was told that this test must be performed before the surgery so I am surprised that you did not have a venogram since you have already had your styloids removed. I guess every doctor has their own protocols that they follow. Good luck to you. I hope you find some resolution of your symptoms.
Can you please provide what doctors you saw? I am rumning out of time and trying to get to someone who knows what to look for.
I have sent my records to Dr. Constantini and Dr. Fargen, but dont hold out much hope for help.
Thanks
My venogram was done by Dr. Patsalides who I saw virtually and he performed the test at North Shore University Hospital. I came across his name when I began searching for experts in Pulsatile Tinnitus. My surgery was performed by Dr. Constantino. My advice, for what it’s worth, would be to persue an appointment with Dr. Patsalides asap. I only say this because you already had your styloids removed. I would try to get appointments with both, but I think Dr. Patsalides can provide you with valuable insights and then Dr. C. can suggest solutions. Dr. Patsalides office is a dream to work with. Dr. C’s not so much. But he is excellent so worth the aggravation. Good luck!
2 months post op isn’t long enough (per Hepworth) to tell what you are left with. He is making me wait 3.5 - 4 months post op to even reevaluate. He uses a jugular ultra sound to tell if the veins are staying open.
Bilateral surgery might need longer (initially) to calm down.
Hang in there. Same here, not thrilled with the symptoms I still have.
@harrisonboy - Dr. Costantino & Tobias or Dr. Lo, Dr. Nakaji in Phoenix, AZ, & Dr. Hepworth in Denver are the most experienced vascular ES doctors on our Doctors List. We’ve also heard from one member that Dr. Osborne in Los Angeles, CA, did IJV decompression during her ES surgery, but he has previously claimed he doesn’t do that. Dr. Breeze is also listed in Denver & has co-authored a research paper about IJV compression so he would be worthwhile contacting if the others fail.
Have you had any scans that show you have IJV or ICA compression?
•Dr. Peter Nakaji, 755 East McDowell Rd., Phoenix, AZ, 602-521-3201, Works w/ vascular ES, has also done a research paper about shaving C1 process as well as styloidectomy
https://doctors.bannerhealth.com/provider/Peter+Nakaji/1103456y_source=1_MTQ4NjU5MDktNzE1LWxvY2F0aW9uLndlYnNpdGU%3D
•Dr. Ryan Osborne - Los Angeles ENT Doctors ENT Specialists Surgeons Cedars Sinai Medical
•Dr. Edward Hepworth, IMMUNOe, 3150 E 3rd Ave, Denver, CO 80206 (303) 224-4711 https://www.centura.org/provider-search/edward-hepworth-md
•Dr. Robert Breeze, Neurosciences Center - Anschutz, 1635 Aurora Ct 4th Floor, Aurora,
720-848-2080, Robert Breeze, MD | Neurological Surgery
Thank you so much. I live in Arkansas, so the healthcare here is non-existent.
The ENT who found mine knows enough do do a surgery through the throat but knows nothing and compression issues.
I was also recently diagnosed with nutcracker syndrome.
This seems impossiblento get answers and help.
We went to AR (from CA) for the solar eclipse this year & got a front row seat! You live in a beautiful state!! I’m sorry you haven’t found any ES knowledgeable or helpful doctors there though.
There are surgeons who stent to help reduce symtpoms of Nutcracker Syndrome. You could try messaging @nnaeve or @MsBearshark. I believe they’ve looked into which US surgeons do that.
I actually still have my styloids. Left side is almost 6 CM and right is 5 + CM. I am waiting on Dr. Constantino and Dr. Fargen to review my documents and offer some suggestions. The issue is, that I am almost completely disabled and just can’t wait months and years.
Thank you so much for your support and information.
I am sorry that I got confused! I thought you were the original poster who had their styloids removed. Unfortunately, I am not familiar with doctors on the west coast. I know we are living in a virtual world now, so it is easier to consult with doctors from just about anywhere. Are you able to travel for surgery? My guess would be that you would need to be able to stay in the area for at least a couple of weeks post-op. Others could probably tell you how they worked it out because I know many on here have needed to travel for the surgery. Best of luck to you! I definitely know your frustration but hang in there. It took me years to get properly diagnosed and then another year to get my ducks in a row and get my providers in place. It was worth the aggravation. I am not totally free of symptoms but the worst ones are either gone or greatly reduced. And I only had one side done so far!
I appreciate it and so glad your better.