I wanted to share a quick follow-up since my surgery with Dr. Nakaji, which was just over two weeks ago on June 9th.
To be honest, recovery has been a bit of a rollercoaster. The first week was rough—I was pretty swollen and couldn’t get comfortable no matter what I did. The second week was a noticeable improvement, and for a while I felt like maybe I was starting to experience some relief. That gave me a bit of hope.
Unfortunately, things have been a little tougher again the past few days. It’s possible I rolled onto my side in my sleep or maybe overdid it with walking. I know it’s still very early in the healing process and that I need to be patient, but I’d be lying if I said it hasn’t been demoralizing at times. Right now, I feel like I’m counting the weeks and just hoping for symptoms to start resolving.
On the bright side, the incision is healing well, and I can’t say enough good things about Dr. Nakaji and his staff—they were excellent throughout the entire process. The hospital where the surgery took place was also much nicer than I expected, which was a welcome surprise.
I’m doing my best to stay positive and really hoping that by the six-week mark I’ll start to see some clear signs of improvement. I know full recovery takes time, but I could really use a few breadcrumbs of hope along the way.
Overall, I would absolutely recommend Dr. Nakaji to anyone considering surgery. He and his team were fantastic.
Any recovery recommendations are much appreciated and please add me to your prayer lists.
Thank you for your update, @pauld1635. I’m really happy to hear your report about Dr. Nakaji, the hospital & staff who helped w/ your surgery & the hospital & staff.
Recovery from ES surgery whether or not IJV decompression is involved is a roller coaster w/ good days followed by less good days then good days return for a while. It can take a couple of months before you’ll feel pretty good & more beyond that to feel great. Where vascular compression is concerned, your vascular system is having to get used to a new normal which can also take some time, too. I’m sorry this isn’t very encouraging news, but staying positive is the very best thing you can do for yourself & your recovery.
Continuing to sleep w/ head elevation at night, icing or putting heat on your neck (whichever feels best at this point) will continue to help. Walking is fine & necessary to help with healing, but you may need to initially keep it to several short (10 min) walks per day vs. a longer 20-30 min walk. Listen to your body, & if you’re doing something, & start to feel fatigued or feel pain creeping up, stop & rest, perhaps for the remainder of the day.
I will keep praying for you as you recover - especially that you get those “breadcrumbs of hope” you want.
Thanks for the update @pauld1635. Sounds like, as frustrating as it may be at times, that your recovery is on the right track. As @Isaiah_40_31 said, it takes time for your body to heal. Anything you can do to reduce inflammation would be helpful including eating well, getting enough sleep and reducing your stress including any stress you may be placing on yourself to hurry up. Be kind to yourself, maybe think about if you had a child who just had major neurosurgery how you would care for them, how much space and support you would give them and then offer yourself the same. I think we have all had to be warriors to get to the point of surgery and then we want to treat the recovery process the same way when really now is finally the time to slow down and rest and let your body do what it needs to do. You really are a force of nature to have gotten this far. Well done you.over the next several weeks as the swelling decreases you are going to start feeling so much better. Not sure if doing the other side is in the cards for you but that might also be part of feeling better as it was for me. Keep us posted on how your doing. Sending you good thoughts.
Praying that you see more improvements soon! It is easy to overdo things if you’re feeling better & that can set you back, & I’m sure you’ve read on here that often recovery is a few steps forward & then a couple back. I second all the advice & encouragement you’ve been given , take care & God bless
Sending you prayers and good thoughts and positivity. Be gentle & patient with yourself. You’ve braved a lot already- and Eagle Syndrome (with IJV too) prior to surgery is a huge mountain you have already climbed.
I am 12 days post op Right Styloidectomy. I had a good first week, no symptoms at all. This second week has been worse- some nerve symptoms returning- which I had been told was normal and to “not freak out” and to be patient. They say every patient presents differently and heals differently. I know the healing process will be up & down. Lifting you up and sending understanding and some light your way. We’ve gotten this far - we’ll get there! One day at a time.
Im so sorry you seem to be having difficulty. I was the opposite, I felt good immediate post op. then went down from there, I am at 5 weeks post op with Dr Nakaji. I guess knowing I need bilateral surgery I wasnt to concerned about feeling well.. but he seemed concerned and is suggesting proceeding with a stent or performing surgery on the other side. If i remember from your previous post you also need bilateral surgery, correct? And in his words he calls the 6 week mark the “magic time” so lets hope for that, right? Hope you feel better soon.
Sorry that you’re not feeling so great too @birdie1 …Does Dr Nakaji want to do more testing before proceeding with any other treatments? There are some research papers which mention stenting & success rates in the Research papers category… obviously we’re not medical professionals here & Dr Nakaji is very experienced, my doctor did mention about stenting if the IJV didn’t open up after surgery, he said it shouldn’t be undertaken lightly, that there are risks and it can cause pain, and can’t be removed once it’s in…If you know that you need both sides doing then that sounds like a good place to start & then see what happens after that? Will you let us know what Dr Nakaji says when you see him? Hugs & prayers that things start improving
Hi Jules,
I appreciate your advice proceeding with the other side. I spoke to Dr Nakaji on the phone, and he originally wanted a repeat CTV. Then I mentioned I now have severe Right side head pressure and bilateral tinnitus, tinnitus was only on left and my surgery was on left. So mentioning these symptoms he said the blood flow has now changed, no need to repeat the CT, so the next step would be ballooning or stent on left with the blockage in sinus (this would be performed by somebody else) or he proceeds with my right side. So he asked me what surgery i want? I find it awkward talking to a provider on the phone and I have so many questions! I told him I want to do the right side, surgery is scheduled in October. He mentioned follow up venogram after next surgery if there is still issues, he feels the other blockage may still need additional surgery. I also have concerns about the stent, and I do have a referral to Dr Fargen since last Oct, prior to seeing Dr Nakaji. I have a phone visit with my Neurologist tomorrow, she is the one who diagnosed the compression. So I am anxious to hear her advice. I need to return to work in a week and not feeling well, its just so discouraging. I am not a young person and I start to question how many surgeries do you go thru? I started with the TOS/decompression that has caused permanent shoulder and neck issues, that was supposed to be the cure. Now a few more surgeries in my future? Thank you for reading my long post.
@birdie1 - I’m really sorry your TOS surgery made you worse rather than better. That’s very sad to hear. I agree that having your other styloidectomy & IJV decompression surgery would be a good next step. I’m also glad to hear it’s already scheduled.
Five weeks is still really early for symptoms from vascular ES surgery to be gone. Your inflammation is still going down, & your brain is adjusting to a new blood flow normal. Your nerves are working hard to heal from the surgery & any irritation your styloids caused them. We’ve had reports that vascular decompressions surgery can take as long as 9 months to feel better though that’s at the extreme end. At 6 months post op, you’ll have a much better idea of how much surgery has helped. I had symptoms that went away 12 months after surgery. Please try not to worry & continue to trust your body to heal, but you must give it time. You had a HUGE surgery. It took me 2 months post op before I began feeling a bit more normal.
That Dr. Nakaji is staying with you through your current symptoms & concerns about what’s causing them is very good news. I hope you don’t need ballooning & certainly not a stent. It’s great that he’s got experience with whatever the next step is you might need if the next surgery doesn’t stop/reduce your symptoms.
Please let us know what your neurologist thinks is the correct next step for you.
For some of us, the number of surgeries we need as we age isn’t as low as we’d like. I had 3 for ES so far, plus previous hip & ear surgeries & need at least 3 more for other things. SHEESH!! I’m fit & eat healthy, but that doesn’t guarantee there won’t be mechanical or anatomical break downs. I wish our bodies lasted better as we age, but I guess we pay for how hard we are on them over the course of our lives + have some genetic predisposition to body failure as well.
BTW - I rode a horse today (my daughter’s - she had to help me get on & off ) for the first time since I had my hips replaced in 2022. I think I’ll be hobbling around tomorrow. I hope you’re feeling well enough to enjoy yours more now even though you’ve still got some symptoms.
As @Isaiah_40_31 says it’s good that Dr Nakaji is willing to do surgery & find out whether the issues are still being caused by a compression… See what your neuro says too, I do think it’s still soon though to say that things won’t improve more, and you’ve not been able to rest as much as some of us have done (if I remember right you have horses to look after?), so that might mean you heal slower than the average person?
I was really lucky, and just having the worst side styloid removed resolved most of my symptoms! I still had a few so had the other side done a year later (UK waiting times!), but mine have pretty much all gone. I noticed the head pressure again when I flew, & occasionally if I’m really stressed, but I’d say 95% gone.
Isaiah_40_31 and Jules
Thanks for all your advice it is really helpful, it does make me think if i should delay surgery or if Sept is good timing.?
Regarding visit with Neuro today, she wants to do a CT and US end of aug, just to get another baseline prior to the next surgery. Dr Nakaji said we could pass on it. But I think I will proceed with the imaging. She agrees with moving forward with right side decompression surgery. And said Balloon/stent should not be a thought at this time, she went on to say that the procedure is improving but we are still on the learning curve and we are not there yet. So there will be some consideration prior to going that direction. She also recommended trying locosamide to ease the intracranial pressure or we may do low dose steroids to get me thru till surgery. I am now having stabbing ice pick headaches on the right (non-surgery side) and I am allergic to the meds that usually help.
You are right Jules, I probably have not allowed my body to rest enough. I do a lot of work on the farm. Also, my leave at work is over today, so back to work in a week .I work in healthcare, on my feet constantly and shift work. It is difficult but I have dropped to a part time status, and I need that health insurance and pay check.
And awesome Isaiah with horse riding, its the best! My horses are older rescues, so no more riding they are just like 1200 pound dogs, but they are awesome too!
Aww @birdie1 you’re amazing keeping rescue horses! That’s such a lovely thing to do! My friend volunteers at the police stables with the mounted unit- or did, they’re closing it down, & the staff are all fighting to get most of the horses retired, the police higher ups were trying to sell them to other police units, but luckily the vet who checked them all agreed & they’ve been able to find lovely retirement homes for them! They will still be able to be ridden a bit…
I’m sorry you’re getting the ice pick stabbing, that’s commonly glossopharyngeal neuralgia, & with ES, that’s rough you’re allergic to meds for that! Ice or heat can sometimes help… Your neuro sounds really good with her advice, & trying the other side before ballooning or stenting seems sensible.
It’s a tricky one with when to have surgery- 3 months is probably the minimum ideally between surgeries, but given you’ve had to work so much & maybe not healing as fast it might be wise to leave that a bit longer…but it depends on how much pain you’re in & how bad you’re feeling, plus how much time you can take off work again? Good that you’ve been able to go part-time, even that sounds as though it’ll be hard enough
) for the first time since I had my hips replaced in 2022. I think I’ll be hobbling around tomorrow. 
I hope you’re feeling well enough to enjoy yours more now even though you’ve still got some symptoms.