Sitting Craniocervical MRI results

Hi AmbyNYC -

Good for you for keeping after Dr. H’s ofc staff. I hope they get your surgery scheduled very soon.

I agree w/ Jules - your styloids are very long & spiky! I don’t know if you have any images of your hyoid bone but seeing if there’s any calcification of the styloid hyoid ligament at that end would be good, too.

Please keep let us know when you get a surgery date.

This is a closeup of the right side, if that helps:

It doesn’t cover down to the hyoid bone so we can’t see if there’s any calcification of the ligament further down. Something to ask at an appt…

Hi NYC,
Im a huge believe in cranial sacral as it has given me so much relief with my neck instability! Im particularly having alot of pain and rock hard tightness in the temples and my TMJ in a big flair after surgery. Im going in Monday to get some botox in the temples in hopes it will relax the temporalis muscle. Ive been getting massage weekly for about a month now and its just not knocking it down enough. Im also requesting steroid shot in the jaw. Unfortunately, I cant take nsaids, tylonal or aspirin products. It sounds like you have yourself lined up well to take care of this. Please share any insights from your consults on the neck instability. Good luck w all your appts.

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I’ve been doing craniosacral massage and it’s helping to minimize full blown headaches. It’s funny how now I can feel when the base of the skull feels “congested” as it feels “clear” after the massages.

The CO orthopedic surgeon confirmed that my neck is moving 5.5mm when nodding up/down. Normal is 3mm, surgery is indicated at 4mm+. He wants to measure side to side movement so is sending me for a rotational CT. I don’t intend to do surgery here, but it’s helpful to know that even a neck surgeon outside of the CCI specialists is seeing CCI as the diagnosis and recommends the fusion surgery.

The NY EDS/CCI NS has invited me to NY for an invasive traction test on 9/30. That will show if there is a certain position where counter weight attached to my skull that lifts the brain stem off the odontoid and symptoms improve. If so, then they’ll x-ray that position and schedule surgery to fuse it that way. Flights are booked, hotel is reserved, my husband is coming with me in case I have a bad flare up after the test. Kid is going to stay in CO with his parents and we’ll isolate for 2 weeks before to minimize chance of Covid exposure, her school just announced all online program for beginning of school.

I meet with MD EDS/CCI NS on Monday, for 2nd opinion. He will probably offer to do fusion surgery but I prefer the NY NS’s approach to anchoring the fusion to the condylar bones instead of a hinge plate to the base of the skull. This one does traction during surgery to guess what the neck position should be, so I’m more interested in the traction test where I can tell them what position relieves symptoms.

Dr. Hepworth is hoping that the neck fusion will lift my neck angle from 136 degrees to 150-170, and that angle change may reposition the styloids enough to get them off the jugulars and not need ES surgery. He’ll follow up after all of this to see what I need. He does have his hands full with the EDS/ES patients I know of in CO!

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WOW! What a journey you’re on AmbyNYC but how wonderful you have doctor options & the opportunity to make the decision about who you want to see & how you want your surgery done. It would be great if you didn’t need ES surgery since 2 or 3 (if ES is bilateral) major surgeries is more than 2-3 too many.

Please let us know when your fusion surgery is scheduled & we shall pray for you. Will also pray in the meantime that the decision you make regarding surgery is the very best one for you. I’m so glad you have good family support for all this & especially that your child will be in good hands while you’re away.

:hugs:

Sounds like a plan, as Isaiah says good you have support, will pray for you…

Somehow I missed the image of your styloid that you posted, AmbyNYC. I see it was almost 2 months ago. :roll_eyes:

Getting that dagger removed from your neck should help reduce/end many symptoms you’re having. I hope you don’t have its equal on the other side! You have important decisions & recovery challenges ahead. I’m praying for each step of your journey to go smoothly.

Yeah, some crazy tusks in there! Right side is 40mm, left is 38mm, both elongated and calcified. Might need them both out, but Dr. Hepworth wants to see how things go with neck fusion first as he’s hoping the improved neck angle may be enough to change the angle of the styloids so they get off my jugular veins:

Hi AmbyNYC,

I hate to be a naysayer, but even if those spikes lift off your jugular veins from the neck surgery, they will, in all likelihood, irritate or continue to irritate cranial nerves in the area, thus, you’ll still be prone to have ES symptoms. Let’s hope that’s not the case, but those suckers are oh so pointed & mean looking, I just feel it’s a distinct possibility.

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Hey Isaiah,

I know I am probably going to have to have them both out. My brain isn’t a big fan of the thought of 3 surgeries in the next year or two, so I let it tell Dr. H’s opinion as a way to keep some hope of only needing 1 major surgery that may take a year to recover from. Self-hypnosis? A girl can hope!

After I wear my neck brace in the car, I know right where those styloids are as I keep getting low level buzzing around them. Next step is a CT Angiogram for the CCI neurosurgeon in NY.

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Sounds like you have a great plan and have gotten some good docs in place. You go girl!

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