It has been little over 5 months since my surgery. Is it normal to have a really bad nerve flare 5 months after surgery? Before my surgery I had an accident and I have had a lot of nerve pain all over my body as a result. More on the right side than the left. I was hoping all my pain was due to ES and not some strange nerve problem. Surgery has lessened my pain quite a bit. Before surgery I had horrible nerve pain near my shoulder blade. Since surgery that has been gone. Today I was doing some dishes and I had the worst nerve pain in my shoulder I have ever had in my life. The pain was so bad my arm got weak and I also had to immediately stop using my arm. Then all my other random nerve pain on my right side flared up. I had nerve pain in my shins and around my knee, also in my scalp. But also I started having pain in my left tonsil area(not the side I had the operation on) and now my whole jaw feels like I have been beat up and the back of my head hurts. I guess it is good to know it is all connected but am now concerned that maybe this issue is not ES but some other type of nerve issue?? However in the past doing dishes always flared up some of my ES issues. Has anyone had bad symptoms return after surgery? Is this just part of the healing process or is something wrong?
I’m sorry that you’ve had a flare up of symptoms- I hope that it is just inflamed nerves still heling after surgery, & nothing more. If things had settled down after surgery, then that seems the most likely (& encouraging!) explanation. Weird that doing the dishes has always set symptoms off- a very good reason to leave them for someone else if you can!! 
Doing sweeping/ mopping did make my symptoms worse & certainly when I did that after surgery for a while it would make things more painful.
And the 2nd side can set other symptoms off weirdly too once you’ve had one side done, so that could be an issue?
I’ve also found symptoms can come back a little when I’ve been a bit low, just before cold symptoms have started etc. or when I’ve had a bug, I think it seems to affect any ‘weaknesses’ in your body, just my opinion, not a medical one!
I hope that things improve for you soon, I know it’s been a journey for you…
So sorry you have experienced this flare up. I have not had surgery yet, so cannot comment if this is part of the recovery process. Do you think it could be the other side becoming symptomatic?
Jules- I do hope it is just a flare up and nothing else. I don’t feel a whole lot better today but I am going to rest more today and hopefully I can get it settled down.
Vkossa- It could be the other side, I have an appointment with my Dr. this week to discuss if I need the other side taken out or not. From everything I have read it is likely that I might need the other side taken out.
My personal experience says that in bilateral cases, having both removed is the key to more complete recovery from all symptoms. It’s hard to know which of the symptoms might be coming from the remaining styloid & which could be (as Jules said) residual due to healing nerves from the first side. If your accident occurred close to the time of your first surgery, then it’s possible your nerves are still healing from that as well as your surgery.
Taking it easy is always good when your body is complaining. Pain is what tells us to slow down & take care of ourselves/let someone else take care of us by doing our usual chores for awhile.
I too hope your pain eases up so you can get back to doing what you want. Glad you have a doctor’s appt this week. Again, don’t let him talk you out of surgery because you still have pain. It’s more likely your pain is coming from your remaining styloid & not from the surgery he already performed.
I am still a little hesitant to have surgery on the other side. If my styloid was super long or if my CT had shown calcification I would be more confident in having surgery. The right side I had taken out was only 2.6 cm and he left some in so it was not very long, but it was causing troubles bc it was so thick but they did find I had calcification when they operated. The dr. said my left was about the same size as my right. If so then it is not really elongated? However since the right had a calcified ligament it is possible the left does as well. It is very hard decision to have surgery again. I wish I had a little more confidence that it is for sure what I need. I keep going back and forth with it.
It is a difficult decision, given that there are risks. Styloid length isn’t always measured accurately with scans; members often find that what’s been removed was far longer than on their scan reports. Also as you’ve mentioned, the thickness can cause symptoms & the angle too, not just the length. And if there’s some calcification of the ligament which you found with the first op.
My 2nd side wasn’t as symptomatic as the right, although it had worsened after the 1st surgery, so I did spend a good 6 months deciding whether to have surgery. What swayed it for me was that I still had some vascular symptoms, (I’d had bilateral jugular vein compression) as well as the pain, & I wanted the chance to be as good as I could me. And having found an excellent surgeon, I wanted to have surgery with him again, I was worried that at some point in the future if I left it too long he might not be operating on ES patients, or have moved away etc. I’m in the UK, so was concerned that we have to wait for so long with the NHS & they do ration some treatments, so that was a worry, but for you in the US there’s perhaps similar concerns with an insurance company wanting to use a different doctor or a doctor moving away? My concerns outweighed the risks for me, but it’s different for everyone.
Hi Agirl,
Your surgeon typically leaves about an inch of styloid in place (as that’s more or less the natural, correct length). If he removed 2.6 in. of your first styloid, then it was probably about 3.6 inches long which is plenty long to be considered ES. If your other styloid is a similar length, then it could be argued that it falls into the ES category & is quite possibly causing symptoms.
As Jules said, it’s your decision, but if it were me, I’d have the surgery. My symptoms were bad enough that the thought of living with them &/or that they might get worse was scarier for me than the thought of surgery. It took a good 2 months for me to heal from each surgery & 9-12 months for nerve recovery each time.
I totally understand how hard it is to make a decision to subject your body to a surgery of this extent twice, but it will boil down to whether or not you can live with the recurrent symptoms. It’s good that you have an appointment w/ him this week. As I said don’t let him make you think your current symptoms are because the first surgery didn’t work. They could be but the greater likelihood is that they’re coming from the remaining styloid/s-h ligament.
Hi Agril, so sorry you are having this flare up and it may well be it is the second one that is also causing this. Did you doctor tell you why they left some of the styloid, especially if it is thick?
I have also read here experinces that after a year or so complete or good relief was achieved after initial set backs over several months. I hope your doctor sheds some more light and with time your symptoms settle with further rest and taking it easy. xx
Hi @Agirl,
I’m so sorry you are experiencing a flare up.
I had that happen too and it was actually scar tissue. There are many ways people scar. I tend to scar in strands, that decide to attach things together like ivy.
I found help with the cold laser therapy I keep harping about lol. Also I had to take two weeks off and be on heavy muscle relaxers, after that I received physical therapy from a neck specialist where they worked both inside and outside the thoat.
Please consider or ask if it could possibly be scar tissue - there is help if that’s the cause.
Hang in there, it will get better.