It has been months since I posted here as a scared mama. It took 10 months, but last week my 18 year old daughter was finally given the formal diagnosis of Vascular Eagle Syndrome. Her left side is where she is most symptomatic, that is where she has internal jugular compression of 75% and the styloid process ossified at 3.7 cm. The doctor said while her right styloid process has also Ossified , but is only at a 3.2cm. The surgeon will do the left side on September 15th. So, my Eagle Experts- for a female, what was the best thing you had or bought for post op that you would do again? What does recovery look like? How long before I can get her the puppy she has wanted for so long? Any help or guidance that you have would be greatly appreciated by my family. I am so happy to have a forum like this where I can ask questions of people that have had the surgery and not just talk to the people who do the surgery..
I’m glad that your daughter has a date for surgery! Who will be doing this, and does she need a C1 shave as well as the styloidectomy?
There’s info in the Surgery section in the Newbies Guide Section, which also includes a link to a shopping list which one of our members put together:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I think the most important thing is that although everyone’s recovery is different, it generally goes in ups and downs, steps forwards and then unfortunately backwards. So it’s best to be prepared for that; your daughter might well feel better after the surgery pain is over, and then symptoms can recur, or there might not be any improvement which can be very upsetting, but with time things should get better… Recovery can take a while though, 6 weeks maybe for some symptoms, but often 3-6 months to really notice changes.
The best thing I bought was the wedge pillow and a V shaped pillow , they really helped me, although both were useful before surgery too.
Icing to help with swelling is important to start with, and sleeping propped up. If she has the energy & isn’t too dizzy then short walks can help. Eating might be tricky as chewing can be uncomfortable, and also opening your mouth wide isn’t always possible, so have soft foods and smoothie ingredients ready. Nerves are monitored usually, but sometimes the facial nerve can get irritated, so there might be a facial weakness, but this improves with time. The spinal accessory nerve can also get damaged, which can cause arm or shoulder pain or weakness, but again, if this happens it should improve with time.
A puppy I’m sure will give your daughter a purpose to get better, but as recovery can vary quite a bit it’s hard to say when is the best time, maybe 2 to 3 months?