Hello All! Here to do an update 6mo after surgery. I have not been doing much better unfortunately. I still am having headaches everyday. I feel like my occipital nerve is causing some pain up the back of my neck/head, down in shoulders, around my ears and behind my eyes. I also have pain were my calcified ligaments were/are. Right under the jaw. I also have been having a ton of jaw/tmj pain and paid hundreds of dollars to have a new splint made hoping it would help. I stopped seeing the Eagles surgeon because he was just blowing it off and saying he never said the surgery would help my headaches. When I was sent to him for headaches and he said it would 50-75% help. It is also 3hrs one way to see him and 6 or more hours out of my day for someone who doesn’t seem to care. So I have tried a nerve medication and it didn’t touch the pain but made me extremely drunk, Celebrex dulls it but doesn’t help much, and I have started flexril for a short time and it helps me sleep but pain is there when I wake and doctors don’t want me on them for long. So we are moving soon so I am just living with it until I can get settled again and maybe find a new doctor to help me. I don’t even know what kind of doctor I should see now. It’s been miserable and so disappointing I didn’t get relief from the surgery like everyone else seems to get. Wondering if I even needed the surgery to begin with…
So sorry that the surgery hasn’t helped you at all, that’s so rough…there are other nerve pain meds which might be worth trying for the occipital pain; there’s info in the Newbies Guide Section about different ones. They can take up to a couple of weeks to work.
When you’re moved & settled, it might be worth looking into whether scar tissue is affecting things? Some members have been helped by cold laser therapy for that…
I can’t remember who did your surgery; is there any possibility that not enough of the styloid was removed to help reduce the symptoms? Some doctors just take the tip off & it’s not enough…a fresh CT might shed some light on that . Another possibility is that if your other side is elongated, it could still be causing your symptoms? We’ve had members who’ve had crossover symptoms- i.e. that an elongated styloid can cause symptoms on the opposite side. So although it seems that the surgery perhaps hasn’t helped, it might be worth looking at getting the other one done?
I hope this gives you a bit of encouragement for some things to try when you’re ready, & in the mean time sending you a hug & thinking of you…
Thank you Jules. I had bilateral Intraoral so they were supposed to be done at once. I also had ligaments separated. I went to UAMS Little Rock Arkansas. It was Dr Suen but it’s a teaching hospital so another surgeon did it with his supervision apparently. I didn’t know this until I saw surgery notes. We are moving to Maine by summer so hopefully I can hang on and search out a new doctor. Maybe one for head neck that knows something about Eagles. I could definitely try a new medication but it scares me trying meds bc I take care of my 5yo. It could be stress related I bet too. I tried a TENS machine but didn’t notice a big difference, plan to try it again. Thank you again for your reply and ideas.
I want to reinforce what Jules said about nerve pain meds taking time to help. It can take some “tweaking” of the dose of the meds as well as some weeks to figure out what type works best. A knowledgeable doctor will start you on a low dose that may not work well then gradually increase it over weeks so your body can get used to it w/o bad side effects. At some point it may reach a level where it works well for you. Also as Jules said, there are several types of nerve pain meds & some work better for a given person than others. The two main categories of nerve pain meds are anti-convulsants (anti-seizure meds) & anti-depressants. I completely understand your need to be mentally clear so you can care for your child. That is definitely a priority. When you move, seeing a neurologist might be helpful to pinpoint where your pain is originating.
Regarding your surgery - if you have constant headaches that are possibly coming from vascular compression, then most likely, you will need to revisit the styloid situation. Intraoral surgery has been helpful for many of our members but in cases where vascular compression (usually internal jugular vein(s) is involved, external surgery is necessary as the styloids cannot be cut back as close to the skull base w/ intraoral surgery as they can be w/ the external type, thus, the IJV(s) continue to be compressed. There is quite a bit of information on our forum about IJV compression & it’s symptoms.
Intraoral surgery often doesn’t allow for removal of calcified stylohyoid ligaments so if you’re feeling pain where the ligaments would be, it’s possible some part of those were left behind, too. Bottom line is that once you’re settled in Maine, try to get a new CT scan w/ contrast & w/ your head in the position(s) that make your headache & other symptoms worse. This can help reveal if the styloids or s-h ligaments are pressing on vascular tissues that may be contributing to your symptoms.
Dr. Annino in MA is the closest ES doc to Maine on our Doctors List. You may be able to get a Telemed consult w/ him w/o having to travel to MA. The types of doctors who usually know about & potentially deal w/ ES are skull based ENT surgeons, Maxillofacial surgeons, Head & Neck surgeons, some vascular surgeons & neurosurgeons.
I hope you’re able to find a solution for your pain, even temporarily, till you get moved & can research further.
Definitely not easy with a little one to look after I’m sure…Not all the nerve pain meds affect everyone the same- I take Amitriptyline, it helps me sleep but I don’t get any effects in the day time. Just a low dose- 20mg- helps take the edge off the nerve pain. A shame about the TENS machine…
Yes I thought maybe a neurologist could help but it feels so much like Eagles and in all the same spots. Also like my neck or jaw are out of place. But I can tell it’s nerve pain bc it comes and goes but it’s strong and comes on fast all through the day I am trying to keep my head above water. I am still disappointed with the care I received and hope it may still be healing and resolve but I just have a feeling it won’t. I will definitely look into new drs when settled and would love to try a new medication that could help but I have major doctor burn out right now and our savings is being drained from all the traveling and appointments. That’s why I took the flexril and decided that was it for awhile. I’d be curious what a new CT would show too. Thank you for the reply and concern. I told my husband I get more caring concern from my forum than the doctors I pay hundreds.
This is why we’re here - care, concern & support for our members like you who are not getting that from the medical community from whence it should come. If you have time, I encourage you to read the articles in our new Patient Self Advocacy section. There is some really good advice in there that will help you as you move forward to future appts. If you go to the home page, it’s the category under Welcome.
Please drop by here often to chat. We’re here for you!