Thank you Adriene61 and tp12 ! Appreciate you guys! It’s so reassuring to hear great things about Dr. Hackman. Did you guys not know what time your surgery was until two days before? And when did they let you know what meds to stop and which ones you can continue? I take Celebrex every day and have for yrs and find between that Tylenol and gabapentin is what gets me through the day. I’ve had bunion surgery and I was aloud to stay on Celebrex up until the day before surgery but know a lot of the times it’s the surgeon’s discretion. I’m so glad you both are doing well! How are you guys feeling now? Since the surgery are you able to do things that you couldn’t do before? I miss the life I knew. Praying I’ll be able to get back to the things I enjoyed so much. Thanks again
Thank you @Jules! I may have overdone it a bit this past weekend, I’ve been spending more time laying in bed this week!!
This site is truly a lifesaver!
@Catmd It’s so true!! Some of my biggest issues were related to posture, this surgery has relieved issues from neck down to my feet. I think when your head is trying to hold itself in the most comfortable position to appease the styloids we end up with a terrible chain reaction that distorts and destroys your body posture, thus causing a whole new set of issues for you to deal with.
I’m certainly glad that experiment is over with!
Thank you @Isaiah_40_31!! I’ve certainly slowed myself down the past few days, I appreciate the advise Now I’m just relaxing and letting the healing take place.
I will keep you updated for sure!
-Didnt know about the 3 reply rule, I’ll continue my responses here.
@Stella Its going to be the best surgical decision you’ve ever made!!! Dr Hackman and his team are a special group of people!
Ah I agree, this forum is wonderful and made my process so much easier.
You’re going to do amazing! I’ll be praying for you and cannot wait for Nov 8th to get here!
I ignore those pop-ups that comment about posting too much on one thread. You can, too. If you have something to say & people to address more often than the automated system likes, JUST DO IT!! There are no hard rules on our forum about frequency of posting on a given thread.
Also, don’t give up taking short walks every day. Resting is good but keeping the blood circulating is too. Just no housework, athletic activities, etc. 2-4 weeks then start easing back in.
Hi Stella, I am new here and have been reading through a lot of posts. I was referred to Dr Osborne in LA by Dr Hauser at Caring Medical center. I had a video conference with him and he agreed to do my surgery. Unfortunately, I have a couple of problems. He can’t do it until January 7 and he doesn’t take my insurance. I am from NC but live in Naples FL now. I need to try and get in sooner with another doctor. Chapel Hill is much closer than LA and it looks like Dr Hackman takes my insurance. How easy was it to get in with Dr Hackman? It appears that you didn’t have to wait to long to get your surgery scheduled. Your surgery is scheduled on my birthday by the way. I take that as a good omen😊
Hi @Sula64 , & welcome! Dr Hackman has done lots of successful surgeries so would be a good bet if you’re able to travel to see him. There are some doctors in Florida otherwise if you’ve seen the list in the Doctors Info Section?
Good luck with your search, hope you can get to see someone quicker!
Hi Sula64, I will take that as a good omen as well Yes I got into Dr. Hackman on Sept 24 and surgery scheduled on Nov 8th so not to much of a wait. He was super nice and knowledgeable. I felt like I definitely made the right choice to go to him. His number is 984-974-6484 and I worked with Nakia. She was good. She put me on the cancellation list and was able to get into my appointment a couple weeks earlier. Good luck to you …
As Jules mentioned we do have a couple of good doctors in FL. Recently, Dr. Bunnell has done ES surgeries for several of our FL members. There’s also Dr. Nuss in Baton Rouge, LA. He has an excellent reputation on our forum as well.
Thanks for your input. Are either of the florida docs well versed in IJV form of ES.
I don’t know the answer to that question. You would need to ask the doctors directly. Dr. Hepworth in Denver is the most experienced vascular ES doctor on our list as far as we know, but other doctors have operated successfully on people w/ vascular ES.
I’m sorry I can’t be more helpful. I hope others will add to this discussion.
I wanted to give you all a update on my Surgery that I had Mon with Dr.Hackman. I’ve had some trouble. I’m jst get out of the hospital today. My left side was worse and he had to stretch the facial nerve to move it out of the way. Said left side is much weaker than right. I had a barium swallow test done yesterday which showed pocketing of applesauce and water which was making me choke. But not aspirating to the lungs. Have to turn head to the left to swallow then clear my throat. Sounds gross but the suction machine is definitely my go to right now. My left eye and left side of my mouth has paralysis as well. He had me on iv steroids while there and sent me hm with po steroids as well. I’m praying that I will get function back ! I know I’ve read on here where it takes time. It’s definitely a emotional roller coaster to say the least. I have my first follow up Dec 1 with him on a virtual call. Thanks for being here through this time. It’s bc of all of you that I’ve been icing around the clock and making sure I don’t go below 30 degrees while sleeping which I know has to be helping.
So sorry to read that you’re having a rough recovery- the nerves are usually monitored during the surgery so that they’re not too stressed, so hopefully it’s just temporary…I hope that you get stronger each day & can swallow better. Lots of members have had facial paralysis & that seems to improve quickly. If you have trouble closing your eye it might be an idea to get eye drops or it could get dry- I think you can get Xailin eye drops OTC.
I’ll be praying that you do heal quickly, thinking of you
Thank you for letting us know how things went. I, too, am sorry for the challenges you’ve had post op. We’ve had several members w/ facial & eye paralysis after ES surgery. Two of the more recent members did fully recover eye blinking & mouth function but it did take some time.
Jules mentioned eye drops which is a great idea. I know the other two people who had this happen did use drops in the eye that wouldn’t blink to keep it lubricated. Here is the link for @tp12 's posts. She had the same problem after her surgery in Aug. of this year. She posted regularly to update how her healing progressed. Reading what she wrote would be helpful & encouraging for you.
I will also pray for steady healing of those nerves. I hope that in spite of the set backs, you are noticing reduction of ES symptoms.
So sorry you’re dealing with the paralysis, Stella. It was very emotionally hard for me, as on about day seven I didn’t feel like I had any improvement and was really depressed, but then it slowly started progressing. I posted pictures of my progress on the bottom of the thread that Isiah linked. My mouth closing resolved itself very quickly, but for the first few days I mainly ate smoothies with vegan superfood powder to get my nutrition.
My eye was very very slow to improve, it took about two weeks to be able to focus properly and a month to not need constant attention and drops. It didn’t close completely until closer to two months. I’m roughly three months out now and it’s FINALLY feeling normal in that the muscles in my face and the eye lid are finally laying (resting?) closer to what they used to pre surgery. Dr Hackman told me to make funny faces once the nerves started to wake up and that “exercise” helped my muscles more than just regular life and living.
I know it feels very overwhelming, but hang in there - it takes a lot of time and patience unfortunately
I called last week to schedule a visit with Dr. Hackman and the earliest they could get me in is Dec 30th. I was diagnosed Nov 8th and the recommended surgeon here in SC is leaving his position as Chair of ENT at MUSC. So I’m looking at having surgery in NC.
I’m glad you posted this information. I’m really sorry a possible ES surgeon who’s closer to you is leaving. Dr. Hackman is worth the wait from what I understand. Most of our members who’ve been to him for surgery have had very good outcomes.
If we can support you in any way while you wait for your appointment, please let us know. This is a great community. It helped me so much when I was where you are in now.
Hi everyone, I wanted to give a 2 week update… My struggle has been real. But I will say positive things because that jst makes me feel better So I can now swallow thin liquids which happened 3 days ago. That makes me smile! I’m still on purée foods.when I try with soft foods I still choke and where myself out jst try to get it down. I still have left side paralysis. Still taping eye at noc. My family says my speech is better so that a bonus. My pain is a lot better. Im only taking Tylenol every 12 hrs and do take gabapentin every 8 hrs but that is way less than I was before surgery. Im still icing a couple of times a day now. Still sleeping on wedge pillow. Ive been out for 20 min walks for the past 3 days which has felt fantastic. I’ll be curious what Dr Hackman will say com Dec 1… not sure if there’s anything I can do to help with my paralysis or not. Or if my dogs licking my face is the best therapy I can do right now. Thank you all for your advice and stories. You make this adventure tolerable and make me feel not so alone
Thank you for sharing the good changes you’re noticing. The paralysis can take some months to fully go away. In my experience, it can get better so slowly you don’t notice the improvement until one day it just seems to be gone. Though that’s not always true as many people have recovered more in a step by step way, noticing positive recovery from week to week.
I had to sleep on my wedge pillow for at least 6 weeks after my first surgery & can’t remember how long after the second one. I’m glad you’re still using it.
It’s great that your speech is better & that your ability to swallow is recovering. Because half my tongue was paralyzed after my first surgery, eating & swallowing were challenging. I had my surgery just before Thanksgiving so my husband put my whole dinner in a blender & added some water & turkey gravy & made it into a smoothy. It looked awful but tasted just like Thanksgiving dinner.
I’m so glad you’re working at being positive as that also helps suppress discouragement. Recovery from this surgery is slow even when only one styloid is removed so that means when both sides are done at once, the initial post op recovery will take a week or two longer as your body works to heal both sides at once. Your body is amazing, & it wants to survive & thrive so it’s working hard right now to achieve those things. Taking walks is GREAT to stimulate circulation & get fresh air. Listening to your body & resting/taking it easy when it asks is also very helpful. You will be amazed as your recovery continues by seeing what is currently weak become strong. I’ve been there. You will be too.
Thank you so much Isaiah! I must be emotional today. I read your message and jst cried. I know you get told often how wonderful you are, and I want to say it again from the bottom of my heart. I truly feel like god puts the right people in your life at the right time. Thank you, and have a great Thanksgiving! I will try the feast in the blender this yr