Hello all,
I just wanted to provide an update regarding my surgery with Drs. Costantino & Tobias on 6/3/24. I am currently at home in VA continuing to recover. According to Dr. C., my surgery was a challenging one because my spinal accessory nerve was really wrapped up along my IJV. The surgery took twice as long as it was expected to take (my family started getting a little nervous in the waiting room; however, the doctors were able to accomplish what they had intended: left side only removal of the styloid, shaving of the C1, IJV fasciotomy, removal of posterior belly of digastric muscle, and repositioning of the spinal accessory nerve. They also had to cut through a nerve and then sew it back up which leaves numbness on the exterior ear. I also had a drain put in during the surgery which was removed about 24 hours after surgery, before my release from the hospital. The pain wasn’t too severe & I didn’t have first bite syndrome right at first. Unfortunately, it has developed. I told my husband that the best way for me to keep that from happening was too just keep eating :} However, I do also have some lower jaw pain, so that’s not really an option. Anyway, Dr. C monitored the facial nerve & so far everything is fine with that. Just a warning though, I didn’t realize that I was going to have little needle marks along the face and neck from the monitoring, so make sure you ask how they will monitor the nerve. It wasn’t a problem though, just a little bit of a surprise. Also, I had some raw areas on the inside of my mouth from the intubation, but again that wasn’t really a problem. The hospital staff were excellent at monitoring everything & I was discharged by about 11:30 am on Tuesday. My surgery was finished up about noon on Monday. I was able to eat dinner & get up and slowly move around to use the bathroom the evening I had the surgery. The recovery has been moving along, but my body feels a bit worse than it did right at first & even since my follow up appointment. I’m guessing that it is the inflammation. Because my spinal accessory nerve was so involved, I have weakness in my shoulder that will require physical therapy. I also have a large area of bruising & inflammation on my opposite arm where they did arterial pressure monitoring that is quite sore. As far as my other symptoms, my pulsatile tinnitus was gone right at first, but I have had it occur again although it seems like it may be quieter than before surgery. I actually have more pain than before surgery due to all the swelling right now but am hoping that will all improve over the next few weeks. My IJV was decompressed quite dramatically during the surgery according to Dr. C. He took some pics & said he’d forward them to me, so I will post them when I get them. Please keep me in your prayers that the IJV will not collapse & will allow the blood & CSF to drain properly. I will have a follow up CT venogram to check on how things are flowing in about 6 weeks. If anyone has any questions, please feel free to let me know. Today is the first day that I have been back on my computer, but I will be able to check things more easily now. I also want to agree with the others who’ve had surgery that if you take the narcotic pain killers, please make sure to also take the stool softener. The nurses in the hospital automatically gave me laxative/softener when they gave me the pain medicine. I also had some that I brought with me for when I was released from the hospital. I didn’t have any issues, so I think that as long as you start taking the softener with the pain meds you should be ok. Dr. Costantino & Dr. Tobias both stopped by my room to check on me after the surgery & I saw both of them at my follow up appointment as well. I’m so thankful that they were able to do my surgery.
@vap - Thank you for sharing your surgery & post op experience so far. It’s so great that your IJV has been liberated & blood flow can resume normally. We’ve heard from so many members that it can take awhile after surgery before the benefits of better blood flow are recognized as everything is so swollen inside. Even when the outside looks better, there is often still substantial internal inflammation. Recovery will take some months but you’ll notice improvements along the way like stepping stones back to good health. You will continue to have good days & less good days for awhile. That seems to be the nature of ES surgical recovery.
Please keep us updated as your healing progresses. You know we’re here for you if you have questions or concerns or just want to share improvement your’e seeing.
@vap Thanks so much for sharing your progress. I hope your recovery goes smoothly and your upcoming CTV shows a wide open IJV!
So pleased that you’re back home, it sounds like the doctors did a very thorough job so you have the best possible chance of recovery, especially with the IJV. I hope that things settle down for you now and that you see real improvements in your ES symptoms. Best wishes, praying that you heal well 
