Wow, thank you for sharing. Also for giving Dr.C the experience and knowledge for future patients! How you are recovering❤️🩹
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Pleased for you that you are finally seeing improvements, it sounds like it’s been a slow recovery!
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Good morning friends,
Does anyone know what ‘Skeletonized’ means with regard to C1 Tp?
“Resection of transverse process of C1 lateral to the vertebral canal: At this point in time, C1 was completely skeletonized lateral to the vertebral canal. Dr. Michael Tobias then performed a resection of the transverse process of C1, taking great care not to damage the vertebral artery. With this resection completed, attention was then turned to the jugular vein and the spinal accessory nerve.”
@BriCSP thank you so much for sharing all of your information. I hope you are recovering well. I don’t recall if you are taking gabapentin or other nerve medication, but during the healing process, that might be helpful if you are experiencing nerve pain.
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It means removing any attachments to the area to be removed.
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@Leah - You may also read about the styloid process being “skeletonized” prior to resection. It’s an attachment point for several muscles & ligaments which must be detached prior to the styloid being shortened. We don’t see that term used very often, but it’s an apt description of what’s done to it prior to styloid shortening.
If your next question is, “What happens to those ligaments & muscles?”, I’m not exactly sure, but I can say there is usually no notable functional deficit after they are detached from the styloid.
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Thank you @Isaiah_40_31. I had seen in relation to the styloid and appreciate the info. Will ask about what it means for C1. Seems attachments are on the back side of transverse process and they remove from the front side. Will investigate more.
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Hi everyone! I’m just about at 8 weeks out of surgery and I’ve been meaning to post an update!
Pre-Op Symptoms
Migraines: Completely gone. I still have some post op headaches (see below), but the original migraines that were my main complaint going in are completely gone, and have been since I got out of surgery. So is the attendant head/neck discomfort originating in my suboccipital area. Hooray!
TMJ: My jaw still clicks sometimes, but it’s moving muuuuch more freely and less crooked and with no pain. Now my left side is comparatively tight, but I’m addressing that in PT.
Ear: My ear is starting to open up and is less likely to pop in elevators, etc. Apparently this takes the longest to change.
I’ve also noticed my breathing feels easier on the right, which is not something I even noticed was an issue before. Another unexpected benefit is less nerve pain down my right arm.
Post-Op Symptoms
First bite syndrome: This seems to come and go, but it got wayyyyy worse after I started doing scar massage around week 5 (when Dr. C cleared me). My PT suspects that the nerve is adhered to the incision, so we’re trying to work through it, and I have seen improvement since being more aggressive with the massage and acupuncture in the area.
Occipital pain/headaches: This has improved significantly, but definitely flairs when I get too aggressive with my PT exercises or trying to test my neck mobility. I’ve found ways to modify all of those efforts to make it less likely to flair. I feel this pain in the back of my head but also just inside my eye socket, which my PT also noticed is an area I have a lot of fascial tension, so we’re working on it from that direction as well.
Scapular pain: This became an issue when I started being more active around week 4 and 5, and my PT said it’s because all my neck movement was coming from my C5 and C6 vertebrae, which is associated with pain in that area. We’re working on freeing C1 to C3 and that has definitely improved the scapular pain.
Post-Op Treatment
I’ve been working with a neuro PT, a PT who specialized in head/neck/jaw issues, and an acupuncturist. The PTs are doing manual work to loosen things up and make me more comfortable, and I have simple exercises to help my C1 to C3 elongate and to engage my smaller neck muscles and disengage my larger neck muscles that have been overactive with post surgical guarding.
My acupuncturist is doing dry needling directly around the incision, which has been immensely helpful. It gets red and itchy and then the inflammation goes way down and there’s way less lumpiness under the scar. This also doesn’t flair my first bite syndrome, which is nice.
I did also see my physiatrist once and he gave me some lidocaine injections in my sore head/neck muscles and released some trigger points while he was there. It was intense but very helpful. He thinks I’ve always had underlying cervical instability (I’m hypermobile, and I have broad shoulders with a thin, long neck, which puts some extra strain on the whole system), and that shaving the C1 and just rearraning things in the area have made it worse. So I think PT and working my way back up to being active will be key in my recovery, but being in PT and acupuncture have overall decreased my pain signficantly and made me feel much more normal doing day to day activities.
Thanks for following along!
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What an excellent report, @BriCSP! Considering how complicated your surgery was w/ the accessory nerve being involved in the IJV compression, I’m really impressed by how well you’re recovering! It’s hard to believe it’s already been 2 mos since you had surgery! It seems more recently that you posted your first post op report.
Re: First Bite Syndrome. It’s caused by your glossopharyngeal nerve over stimulating the parotid gland. Since the glossopharyngeal nerve is located in a place where it often has to be moved out of the way during surgery, it gets mad & as it recovers, it causes FBS. I had a nasty case of FBS after my first ES surgery but thankfully didn’t get it on the other side after my second one. I hope that as your PT progresses it will go away completely. I’m glad you’ve found wonderful, experienced therapists!
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So pleased for you that surgery has helped so many symptoms! It will obviously be a long journey for you with PT etc but as long as things are progressing positively that’s brilliant! Thank you for updating us with how you’re getting on & with info about treatments that are helping you
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Hey @elijah … Am I right in thinking you’ve had both styloids removed? And now looking at C1? If so, so sorry you’re still working on solving the problem.
Honestly the PT and acupuncture massively sped up my recovery, so I’m relieved to have started that. I went to PT yesterday and he was shocked at the amount of neck mobility I’ve gained just since last week. The FBS continues to be up and down–it was better yesterday, and today it’s giving me searing pain. It’s also moved from just my bottom jaw to the top too. I’m sorry you also went through this, but it’s good to hear you came out unscathed on the other side!
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Hello, my name is Aleana. Do you recommend Dr Costantino to diagnose and have him do the surgery himself? Here in Mexico no one has been able to complete my diagnosis and I am desperate with the symptoms. I get 6.9 and 6.2 cm eagles. Nobody know about this syndrome.
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I hope you have recovered well and all is going well with your new bookstore!
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I and my loved ones learned a lot from this video, so thank you very very much for posting it.
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Hello!
Congratulations on your successful surgery. I am wondering if you had any numbness around your surgical site that persists. I am just concerned that Dr. Costantino has to cut the auricular nerve. I see that he also repaired it at the end in your operative notes. I guess I’m wondering if you have any numbness around your ear as well.
It seems to be common to have some numbness around the ear or jaw; mine are a bit still years after surgery…generally it seems a fair trade off to take in exchange for losing ES pain & other symptoms!
Hopefully you’ll get the answer you’re looking for from one of Dr C’s patients, I think @Barrootz might be able to help otherwise…
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I had my surgery in October and still have some numbness, but it gets less and less each week.
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I’m almost 7 months out and I’d say the numbness is about 90% gone, but I still have some around the bottom of my ear and into my jaw area. I actually see a neurological PT and he said the nerves usually take the longest to recover, with six months being around the average. He also said you can speed the recovery by gently stimulating the area—just gently massaging it or brushing it with your hand, or even a cloth, for about 5 to 10 minutes a day (I do it in/after the shower, so it’s easy to remember). I’ve also been doing scar massage along my incision starting about six weeks out and that seemed to have helped both the nerve and scar tissue, and ditto for acupuncture in that area. (This is my fourth surgery and I think surgeons need to talk more about scar massage! It helps the tissue from adhering and the scar heals smaller and flatter.) My PT did say cutting the nerve is quite a significant intervention, but I’m assuming there’s no way of getting around it (literally and figuratively)!
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I was browsing and just wanted to add a note here for future people reading these posts. Mayo Clinic does have a test that can be done to see how much Gadavist Gadolinium you are excreting from your kidneys. Doctors told me that it is suppose to leave your system right away and wouldn’t listen to me so I asked for the test. I can’t remember exact figures but it is suppose to be less than 2 and mine was over 14 of whatever measurement they were using 3 months after the MRI. I repeated it after more than six months and it had come down to less than 2. I was symptomatic that entire time. It was so bad I will refuse Gadolinium unless it is a life or death situation.
The “clear” blood test doesn’t mean it isn’t still deposited. It just meant at that time it was not being excreted from the kidneys in high doses. The wife of Chuck Norris was very vocal about this issue.
So yes, pay attention to the warnings that come with Gadolinium.
There is a new Gadolinium agent that has been approved by the FDA that is better to use but my facility still hasn’t approved it.
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How are you doing now that it’s over a year out? How are your symptoms?