I finally, finally have surgery scheduled for the 18th! It’s been 2 years since onset of symptoms - this time. I had styloidectomy and C1 shaved on my right side in 2014. Symptoms resolved, but came back 2 years ago. It took seeing a lot of different doctors, even though everyone knew the cause of my 24/7 headache from the beginning. But I finally got to a doctor who has agreed to do surgery on my left side. I will have a styloidectomy and possible shaving of my C1 on the left side, done by Dr. Lawton at Barrow in Phoenix.
I think it really helped that once I was finally “allowed” to see him, I brought with me a list of things that have been ruled out (CSF leak, POTS, etc.), a list of treatments and if they helped (Aimovig, no noticeable difference in headache, Topamax, relieved pain behind my eyes, etc.), as well as other things I have tried (massage, PT, etc.). I noticed that list (almost a full page long) was copied almost word for word in the clinical notes for the visit as justification to do the surgery.
That’s great news, Susie! I’m glad Dr. Lawton is helping you. After posting his YouTube video of an ES surgery/C-1 reduction, we began suggesting our members w/ vascular impingement see him & so far, you’re the only one I know of that he hasn’t turned away. That’s fantastic news. I guess he, as well as many other surgeons on our Doctors List, have specific criteria they expect to be met when evaluating for ES & when making the decision to do surgery. It’s very hard when a patient is turned down but very exciting when you do get accepted.
I’ll put your date on my calendar so I can be praying for you on the 18th.
Thank you! I can definitely use the prayers. I think it really helped that I was referred to him by a Barrow neurologist, and that I had an extensive history of other failed treatments and multiple other conditions ruled out.
Great that you have a surgery date, & not too long away! And you’ll know what to expect…well done advocating for yourself with the list of testing etc you’ve had already, that’s a good tip for other members
Will pray all goes well
I had my pre-op today, I’m cleared for surgery. I was a little surprised to hear the plan is for me to spend the night in the neurological ICU. My last surgery, I stayed in a regular room. I don’t know if they are being extra cautious due to the complications after my last surgery (of not being able to swallow - not even my saliva - ended up with a feeding tube for a week).
Good that they’re prepared, hopefully you won’t need the ICU bed! I don’t know if the system is the same as in the UK- here they book a bed in ICU in case, but it’s not always needed…
Will be praying
I totally agree with Jules. Really glad they’re erring on the side of caution. I hope this surgery is the opposite of the last one with everything “going by the book”.
I’ll be praying for you on 11/18. Please let us know how things went when you feel up to it.
I’m home! Surgery went smoothly, they didn’t see any need to shave the C1. They only removed about 1.5 cm of the styloid and left less than 1 cm. I guess it wasn’t long, just at a bad angle and thick. The doctor did say that he decompressed the vein and the carotid artery. I didn’t see in any of the imaging reports that the carotid was also compressed, so that was news to me. Unfortunately, I still have a headache, hopefully just due to the swelling, I hope I get complete relief in the next week. I didn’t have a drain, so that was good. They didn’t use stitches at all, just glue. I haven’t seen it yet. I spent the night in the neuro ICU. They were wonderful. I think this morning before release, I saw at least 5 different doctors, 2 of which had participated in the surgery.
I have developed a clicking noise in my ear on that side, which I never had before. Hopefully that will go away with the swelling. My throat isn’t very sore, and the best new of all, I can swallow!!
What great news that you’re home & surgery went so well! It’s even better that you didn’t need C-1 shaved down as that should help you recover faster. Also, your information that it wasn’t styloid length but angle & thickness confirms what we’ve “preached” all along. It’s too bad more doctors don’t acknowledge those features of a styloid can cause BIG problems. Too many only look for the styloid(s) to be elongated.
It may take a couple of weeks for you headache to subside as your brain is adjusting to new levels of blood flow, plus, as you noted, the inflammation from surgery could be playing a role.
I’m really, really glad things have gone so well for you. Please keep us updated as to how your recovery progresses.
Susie so glad that surgery went so well. Be kind to yourself while you are healing. Aside from your headache (could be from anesthesia) you are off to a good start. I hope the next week some of this passes. It seemed it took me up to about 3 weeks for all the drugs to clear out of my system and get a clearer head.
