Had revision surgery with Dr. Hackman yesterday morning. He and his team removed both styloids to skull base through small incisions around my ears. Both were about 3 cm long and moderately fat. Right side was impinging internal carotid artery and left side was compressing internal jugular vein.
Dr. Hackman is a truly amazing surgeon. I had previously had my styloids “removed” intra-orally by another surgeon, who just snapped off 2 skinny cm. I visited with him after surgery several times, not knowing so much was left behind. I still had symptoms and he said they were my ‘new normal.’
After 2 years of worsening dizziness, migraines voice loss and exhaustion I called and requested a CT scan, which showed 3.1 cm styloids on both sides, and vascular involvement. My IJV was measured at 2 mm, but looked completely crushed on the CT. Original doctor said further surgery was too risky.
I visited another surgeon in Florida who agreed to do the surgery. It took so long to get an appointment to see him I had given up and sent a package of information directly to Dr. Hackman’s office. They called back within 24-hours to schedule a consult, and I had surgery yesterday morning. I already feel great.
Thank you Jules and Isiah for all you do, and for others who have posted their experiences. This group has saved my life!
So pleased that you’ve been able to have revision surgery! I hope that the vascular symptoms will disappear completely, good that you already feel improved…I know you’ve had surgery before, just remember that you’ll perhaps have swelling in the coming days which could make you feel grotty again. Did Dr Hackman give you anything for the swelling? I can’t remember but I think one of our other members who had surgery with him had pressure bandages?
Get lots of rest & thanks for letting us know how you are. Will be praying for your recovery, God bless!
No pressure bandage but he entered through flaps over parotid glands, which would make bandages a challenge. They gave me steroids to help with swelling. Had drains behind my ears overnight to get the worst of the fluid out. Only odd issue I am having is right eyelid does not close voluntarily or completely. Had to tape it shut to sleep and lack of blinking is drying it out. Vision in that eye is also affected. Hoping it is just stretched nerves and pressure from swelling. Doc did not seem overly concerned.
Glad you are doing well. I had steroids after my surgery because inflammation effects my trigeminal nerves. My recover from 1st surgery was pretty easy. I am working on a second surgery in Florida…could you let me know what doctor you had a difficult time seeing. You can personal message me if you choose not to post it.
Heal quickly….and I used an eye mask to kelp keep my eye lids closed ….it might help
What exciting news that you’re successfully through round two & feeling so much better! I’m jumping up & down & cheering here!
We’ve had several members who’ve experienced that sort of eye issue after ES surgery. It usually clears up in a few weeks to a month or a little more. Ann’s suggestion is good for sleeping. There is also an eye ointment available (not sure if it’s an Rx or not) that you can apply to your eyeball to keep it from drying out during the day until your eyelid is voluntarily functional again. You could ask Dr. Hackman or your PCP about that.
Thank you! I will be jumping soon! Picked up some eye jell and a sleep mask this afternoon so I should have some relief soon. Thanks for all you do here. It really helps!
Woo hoo! So glad that your surgery was successful Catmd. So glad you got steroids for the swelling. They are like majic and I think allow for less use of pain meds which in my book is a plus. You sound like you are doing great. You can now put this chapter behind you. Take it easy and dont overdo it.
Hopefully the eye closing issue will only be temporary- I remember one of our members had the same but it did improve- the wonderful emma, who compiled the original Doctors List.
I use Xailin eye drops for dry eyes- you can get them otc in the UK so I would guess in the US too. The day drops are better than the night gel, it’s a bit sticky!
Blinking has started - woo hoo! Right eyelid is waking up. It is weak but moving and right forehead is scrunching a little. I still have some swelling but, overall, the recovery from external surgery is so much easier than the intra-oral surgery. I should have heeded the advise posted here the first time around, but was so excited to finally find a surgeon who had experience with Eagle’s that I did not do enough research. Thanks all for your comments and support.
Doing better - not back to normal, yet, but improving. Balance has improved significantly and my neck and shoulders don’t hurt, which is a huge bonus that I wasn’t anticipating… No more eye twitching. Overall I have had a vast improvement in pre-surgery symptoms, so the blinking disturbance is manageable in comparison.
I’m new to the group, thank you for sharing your story and how important choosing the right surgeon is the first time. I’m lucky enough to be in NC, could you tell me how you sent your information directly to Dr Hackman’s office? I was trying to figure out if I needed a referral, or how to contact them?
Again, thank you for sharing your experiences, it helps so many others!
I wrote a cover letter outlining my symptoms, diagnosis, and imaging results, attached copies of radiology reports and some 3D imaging I created with 3D slicer, and requested an appointment and I sent the package by fax. His office fax number is (984) 215-3945. His scheduler called me the morning after I sent the fax and made the appointment. I had called his office first and they told me I had to have a referral, but my GP wanted me to go to a local surgeon and would not send the referral to Dr. Hackman. So, I decided to do it myself. With this condition, you have to advocate for yourself because so few doctors understand it. Dr. Hackman did a great job at the first appointment, actually listening to me and examining me and the surgery was very easy and recovery was quick. I am 6 weeks out from surgery and was out doing yard work this morning with lots of energy and good balance.
If you have a doctor who will write a referral, that will be easier. The first time I had surgery I had to prepare a referral document and got the doctor’s office manager to get him to authorize sending it. I had been to several ENTs and they all dismissed my concerns and refused to help. This time when I suspected I needed revision surgery it was worse because no one wanted to hear about styloids that might have grown back. I saw 5 different doctors and could not convince any of them to order a CT scan. I was just getting ready to do a self-pay CT with a prescription from my chiropractor when I managed to convince my first surgeon’s PA to order one. Even with that new CT the original surgeon refused to see me or do revision surgery, claiming it was too risky.
Thank you for sharing your story, Catmd. YIKES! I had forgotten what you went through to get revision surgery. Dr. Hackman is one of very few doctors on our list who is willing to do revision ES surgery.
Thank you so much Catmd for all your very helpful information. I believe my Primary Care will refer me to UNC as I already have three specialists there for allergy/immunology, rheumatology and an EDS knowledgeable physiatrist in Physical Medicine and Rehab. I’m so happy you are doing so well post revision surgery, that’s very encouraging!
I’m glad you got in with him. You are in the best hands. He always listens and does whatever needs to be done to figure out your problems. I have had numerous surgeries with him from Him removing a section of my carotid artery to test for vasculitis ordered by another doctor. Thyroid removal (well the right side). Bilateral styloid removal with the Davinci robot and then I had fragments break off and get wrapped in nerves. As soon as I had an issue he order another CT to find the fragments. Just a couple of weeks ago I started having a mump like feeling on my right side. He over road his boked schedule to fit me in. He looked inside my mouth first and saw that the right side was completely dry and left wet. He thought i probably got excessive scar tissue which I have had a problem with all my life. I can’t tell you how many surgeries I’ve had after different surgeries to remove scar tissue. I always go to PT after every surgery to work scar tissue out as they know I have a big problem with this. He took a scope up my parotid glad and sure enough it is about closed from scar tissue. We were going to try to avoid surgery and try to reduce the inflammation with steroid injections directly into my parotid gland. I did this two weeks ago and it worked for about 10 days. I hope I can avoid another one but I feel extremely confident with him. He is just so skilled. He has done a lot of revisions. ES, Vascular, clef pallets, etc. Best of Luck to you! Even down to his closing. You can not see a scar on me except in the hair line near my temple where he took a sample of my artery out to test. You have to strain to see that. I would have thought the scar on my neck for the thyroid removal would have been noticeable but not. I can not tell where he cut. Best of Luck!
So glad that your surgery was successful Catmd. So glad you got steroids for the swelling. They are like majic and I think allow for less use of pain meds which in my book is a plus. You sound like you are doing great. You can now put this chapter behind you. Take it easy and dont overdo it. 
