Did you get your pillow on Amazon? I want to get a similar pillow lol.
Thank you so much for your detailed message. It truly helps me feel more at ease in knowing what to expect. I’ve been keeping up with your recovery and I’m so happy to hear that you’re making progress .
A few questions:
For the facial, neck and ear paralysis, has it started to lessen at all since surgery?
Has the first bite gotten ANY better in 2 months?
Did you have any tinnitus before surgery? If so, has it gotten better?
I’m trying to prepare as much as I can. I know it will be a long recovery and I’m also preparing myself for that. I’m not very patient and I will need to discard the negative self talk as well when things progress slowly.
I will be in a hotel the night before surgery and then Ubering to my surgery. My friend in NC will be picking me up and I’ll stay with her for a night before I fly home. I am so grateful for this forum and everyone here.
Hi! I bought this wedge from Amazon and put it up against the back of my bed frame and then stacked my regular pillows up it. It worked quite well for me Wedge Pillow for Sleeping - 7.5 Inch Memory Foam Bed Wedge for Sleeping, Reading, Post Surgery & Leg Elevation - Triangle Pillow with Washable Cover 26x25x7.5 inch
I don’t know how to paste links in here so forgive me!
And one thing I know a lot of folks have had first bite but (knock on wood) i can happily report I haven’t gotten that and it’s been over 2 months.
You are welcome. We are all here to support each other.
Paralysis - both ears, neck, cheeks and jaw line still remain numb. I have noticed I can feel more in those areas since the surgery, and expect to have full recovery.
First bite - I didn’t have first bite for the first 7-10 days, and then everything changed. I have difficulty with the first 2-3 bites of every meal. It feel like I have cavities in every tooth, nerve impingement, and that I am chewing on tin foil if you’ve ever done that as a kid when the dentists used to apply silver filings for the one cavity I have had in my 46 years of living. Ouch!! It’s literally a shocking experience from my perspective;).
No, I didn’t really have major issues with tinnitus.
For anyone else on the forum, I am serious about having tried just about everything. I had the resources and time, and traveled across the US in search of a cure before I realized I had ES. I am happy to share any of those experiences should there be interest someday.
Quick question - do you have anyone staying with you at the hospital for the 1 night you are there? It isn’t required, but it is always better to have an advocate since hospitals are occasionally short staffed, as all healthcare settings are, and having someone ensure you have timely responses to your call light or requests is paramount. I am glad you have a friend to pick you up either way.
@JPB, if your FBS continues to be so intense, it can be treated w/ nerve pain meds for awhile until it settles down a bit on its own. Your description reminds me of how bad mine was when it first started (day 5 post op). I totally remember being afraid to take that first couple of bites of every meal, but it definitely got less intense over time & became a less frequent problem. I also figured out which foods were the worst triggers for it & avoided them for awhile.
Love your pre-op pic! Thank you for sharing!!
@Danielle1 - I agree that your sister is AWESOME for finding someone to help you for the first 5 days post op. I’m glad you were able to get the help even if the process was a bit of a challenge. Days 3-5 are normally the toughest days. By the second week you should begin feeling a bit better & also going forward.
@JPB Thank you for that very helpful information. I’m so glad you’re starting to feel more in those areas and expect a full recovery. You’re at about 2 months post op right? That’s a very helpful timeframe to have. I’m hoping I don’t have first bite that bad .
I don’t have anyone to be in the hospital with me unfortunately. I’m actually ubering to my surgery from the hotel. My friend in NC is a single mom and has her kids until the 14th when she’s picking me up. I’ve become pretty good at advocating for myself and I’m a New Yorker, so if they don’t give me what I need I have no problem being a little more demanding :-).
The two things on my list to absolutely have are Prednisone and ice packs.
@Isaiah_40_31 We found someone (homecare aide)! I have her coming over on Sunday night when I get home from the airport, Monday from 10-5 and Tuesday from 10-5. If I still need her here on Wednesday she’s available then too. Monday through Wednesday will be days 3-5 - I remember reading they are the toughest. Thank you for reiterating :-).
@Ddmarie Thank you! Looking for that one now!
IN my case, doc makes you stay in town up to 5 days for post-op appt. I had a short flight (less than 2 hours) and then had my son pick me up for about 1 hour drive. I was in pretty good shape by day 5. I also had prednisone on board which I think makes a world of difference. I got cold packs that activated by squeezing them so I didn’t have to deal with ice.
I always book wheelchair assistance in advance if needed when I book flight. I have found some airlines ignore those bookings and got off flight with no wheelchair in the past. It’s good to verify it all especially when you are alone.
I have flown day after surgery (not ES) however with mixed results.One time after arrival to fly out, my flight was delayed for several hours. I really needed to find a place to lie down and couldn’t. i was very uncomfortable. In hindsight, I should have asked airline to go into their lounge to rest.
I handled the out of town stuff mostly alone (except for ES surgery) but did have a great member here help with driving and hung out with me while I was still heavily drugged into the first night. One time, I hired a health care aid to pick me up and monitor me for 4 hours before I flew home the next day.
Everyone is different. My strong advice is to get prednisone on board to reduce pain and swelling. I found i didn’t have to take much pain meds because of it and wasn’t so fuzzy brained or traveling while heavily medicated. Flying has been pretty much uneventful and didn’t bother me much.
I think you will do fine if you have little help the first 3-4 days. Hope that helps
Thanks so much for that information. Did you start the prednisone while you were at the hospital?
Well mine was outpatient and was given an RX to take home. It was standard 10 day dosing.
I think they may have given me dexamethasone (another type of steroid) in IV though during or after surgery though. Dr. Samji always gives his patient prednisone post-op. Not all docs do and Im not sure what their reasoning is. I personally cannot take NSAIDS so it made a world of difference for me and pain control. I only had to take 1-2 pain pills a day at most and was out walking the day after surgery. I tried to do as much as I could in the AM, then about 2 take a pain pill, take a nap and rest for the remainder of the day.This is when the Hallmark channel is helpful. Puts me to sleep every time or at least it is mindless watching why still recovering from all the anesthesia.
I’ve been trying to navigate getting help with Eagles Syndrome, and feel I’m at a dead end. I was diagnosed with bilateral ES 4-5 years ago. Symptoms are becoming unbearable, especially on the right side. I’ve worked with pain management and received injections on the right side, at Mayo Clinic, Jacksonville, FL. Those treatments are no longer helping. My Mayo ENT department is not experienced with the surgery and suggested I find another doctor for treatment beyond pain management. The “ligament” is so long now I can now feel it below my jaw.
I’ve been reading on this site for about a year and am now reaching out to you all for advice. I first tried to get an appointment with Dr. Bunnell, in Jacksonville. I have called at least 10 times, left messages and emails, with no success in getting an appointment.
My first choice, however, is Dr. Hepworth in CO. I believe my vascular system is involved, and I feel confident in him after reading about his abilities. After weeks of trying his office, I finally got someone on the phone. She told my first visit must be in person and I would be seeing the Nurse Practitioner, not Dr Hepworth. I have an advocate at my insurance company who verified he is in my network, and also attempted to schedule an appointment for me with the doctor. They were given the same answer (nurse practitioner is the first visit and that must be in person). Is that how everyone from out of state started with Dr. Hepworth? How many trips to Colorado does it take to become his patient and how many in total if I need the surgery? Does anyone have any suggestions about next best steps?
Hi there so glad you reached out ! I’m sorry to hear about all for your troubles. A lot of the symptoms are all things we here can understand and relate to unfortunately. This is a wonderful community with a lot of information and compassion. So you are in good hands.
Unfortunately, I do not know a lot about Dr Hepworth directly as Dr Hackman in NC did my surgery in October. However I have read that patients of Dr Hepworth all have had to have an in person visit with him for the first visit. There are others on the forum who have worked with him directly and will be chiming in here I am sure i know it’s a but frustrating, not to mention costly. I had to travel to see Dr Hackman as well. I do think a majority of the surgeons do require an in person initial consultation before they will agree to do the surgery. This is so that they can ensure that this is what is best for you. Again I know others will chime in here shortly with some feedback for you. And Again glad you reached out to this group!
Hopefully others who’ve seen Dr Hepworth will chip in, but otherwise you could start a new discussion to ask about others’ experiences with him. From what I’ve read on here, seeing his NP first seems to be the norm, but others have found this appointment really useful.
There are lots of posts about Dr Hepworth so you could use the search function to have a look, this one might be helpful as it mentions extra testing to be done:
Dr. Hepworth and Vascular ES - Welcome / New User Help - Living with Eagle
Thank you, Jules!! I appreciate the feedback. How do I start a new discussion? Trying to figure it out.
I’m really sorry to hear about the lack of communication from Dr. Bunnell’s ofc. We’ve had similar complaints about Dr. Hepworth’s ofc & have found that he is suffering from a severe front ofc staffing shortage at the moment. That may hold true for Dr. Bunnell as well.
What Jules said about Dr. Hepworth is correct - first in person meeting is with his NP Allison Love. The unanimous verdict about her is that she is TOTALLY AWESOME so the trip doesn’t feel wasted. You can schedule your surgery after seeing Allison (usually 4-6 mos out). After you’ve seen her she will schedule a follow-up video appt for you & Dr. Hepworth so you can “meet” him & discuss your questions & other relevant issues. As noted, he will require you to get some vascular testing from Vascular Institute of the Rockies. I think that can be scheduled at the same time you’re there to see Allison or if you go a few days early for your surgery. You shouldn’t have to make an extra trip just for that.
Dr. Hackman in NC has also helped a number of our patients who have vascular ES though he doesn’t have a vascular surgeon present in the OR as does Dr. Hepworth. Dr. Hackman doesn’t book out as far as Dr. Hepworth & he will do bilateral surgery so both styloids can be removed at once. That can cause a more difficult recovery initially, but at least you only have to go through it once. I had wished for bilateral surgery when I had mine done, but I saw a surgeon who required two surgeries for that (as does Dr. Hepworth & most of the other doctors on our list).
I’m glad you’ve gotten some helpful info. from our forum & am very happy you’ve joined the discussions now.
Thank you, Isaiah. You are a blessing. Jules let me know how to create a new thread, and I believe I did that successfully. Having this communication makes me feel less alone in this process.
I will work to schedule with Allison and learn about the vascular testing. I truly appreciate the responses from you and Jules.
The process does start with Allison. She is wonderful! It was worth the trip to finally hear someone speak “the language” and understand all the symptoms and explain why for most of them. We first spoke with his practice Nov of 21 seeking a revision and ballooning surgery. He is still working with us.
I’m glad you’re continuing to seek Dr. Hepworth’s expertise @Samom.4 but I’m sorry that revision surgery & follow-up ballooning is necessary. I will be praying these are the final pieces of the puzzle that will bring complete healing for your husband.
I hope you have continued to recover well!
I’m planning for surgery, live alone with a dog and am trying to understand my needs for home health care post op. I’ve already been told I cannot bend over for at least one month and unfortunately my freezer and dishwasher, giving food and water to my dog etc. all require bending over.
I’m in a high risk category for Covid and have another health condition that already has me in a depleted state with an extremely limited energy envelope.
I’m hopeful about the possible relief from surgery (Vascular ES) and doing one side at a time to keep recovery a bit easier. But also feeling incredibly overwhelmed - incredibly overwhelmed - by wanting to plan for all post-op contingencies/recovery challenges/durations.
I know I’ll need an aide, but it feels daunting to find one and decide how many hours a day etc.
I’d rather be over prepared than regret being underprepared.
Any and all advice welcome!
I’ve not heard of anyone being told they can’t bend over for a month before, although don’t want to go against the advice you’ve been given…have a look at how you can adapt things to avoid bending down, could you wash up rather than use the dishwasher so you’re standing at the sink, maybe get a raised platform for your dog’s bowls to avoid bending too far? I was lucky post surgery & didn’t find bending down an issue, things like hoovering, sweeping, ironing were for a couple of weeks.
Have you seen the We’re In This Together scheme, it might be helpful for you to get support from friends or relatives, here’s a link:
Latest We’re In This Together topics - Living with Eagle
Very good that you’re preparing ahead for your surgery though!