Update on CCI, and first Surgery Scheduled

General
1

Hello Forum,

Been awhile since I posted and wanted to update.

I was able to see Dr. Henderson in Maryland and he diagnosed me with Foremen Magnum Stenosis, CCI, AAI, a occult tethered cord and hEDS. I will have a decompression and stabilization after the styloids are removed and the jugular veins decompressed.

I am so happy to say that Dec. 16th is my first eagle surgery in NY. I am hoping for a really good response as the side they are decompressing is 70% blocked and after it I am hoping for less headaches, vision issues and pressure in my head. I’ll be renting a hotel room in the area and my uncle is driving me home after I’m cleared to leave. 8 weeks later I’ll have the other side, the left side done. That side is 100% compressed and there is bone on bone contact with the styloid and c1.

I was deeply relieved when the first thing Dr. Henderson said when looking at my CT scan was that I have a stenosis, or narrowing, of the foremen magnum…something that is congenital. I have struggled since toddler days with coordination, respiration and pain, and it seems that this compression on the lower brain stem is what is the main driver of that. There is also a mild chiari on flexion and a retro flexed odontoid that is putting alot of tension on my brain stem. After the decompression and stabilization they may do a surgery to release an occult tethered cord.

Have to be honest the surgeries cannot come soon enough and I am hoping that I handle them well. I am apprehensive about the fusion, even though I am definitely going to proceed with it, because I worry about the fact that someone else will be permanently fixing my head in place…although it appears that is what has been needed for some time. It looks like there is a solution to help me get out of the severe pain and depression/despair cycle I am in.

I’m spending the few weeks left before my surgery trying to set up my living arrangements so they are as stress free as can be for allowing my nervous system to rest. I got several cervical pillows to try and a humidifier for my room to keep the air from getting to dry. I am taking care of my elderly mother and that is a lot of stress also so I hope that I can get a good window to recover from the operations and have no complications from the surgeries themselves.

I’ll update again just before the 1st surgery and also after…if anyone has any tips I’m open to them.

Thanks to everyone here for all the info and support.

2

@Disabled_Inventor - Thank you so much for your update. I’ve thought about you from time to time & was hoping you were making progress toward surgery.

It’s great that you were able to see Dr. Henderson & get properly diagnosed but I’m sure it was tough for you to hear the list of things you have & that will all need to be treated before you feel significantly better. Step by step, healing will happen for you so good job self advocating!

You do have a challenge cut out for you w/ having major surgeries coming up & also having the responsibility of your mom’s care. I hope there are other family members who will come alongside to help with that so you can have some decent recovery time yourself.

I’m putting your surgery date on my calendar so I can pray for you then. I assume you’re seeing Drs. Costantino & Tobias for surgery. If so, you’re in excellent surgical hands. :heart:

1 Like
3

Goodness, you have so much going on & so many surgeries needed, it will be a long journey but hopefully worth it in the end!
A good idea to get as organised as possible beforehand, have you got ay one else to help you? There’s info in the Newbies Guide Section about surgery, including a suggested shopping list, here’s a link:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I hope that your first surgery goes well, will be praying for you as well :folded_hands:

1 Like