Surgery scheduled soon

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.

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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.
:pray: :hugs:

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.

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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 :grinning:
Will pray all goes well :hugs: :pray:

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).

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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 :smiling_face_with_three_hearts: :pray:

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. :hugs:

Better to be safe than sorry. Id be happy to get a more watchful eye after what you went thru the first time. Good luck with your surgery. :hugs:

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!!

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Hi Susie,

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.

:hugs: Sending a gentle hug.

Glad you’re home, you were well cared for & that things went smoothly…I hope that the headache goes soon, take care of yourself :bouquet: :hugs: :pray:

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. :smiling_face_with_three_hearts: