Hey everyone!! So sorry for the delay in updates!! I don’t do well with Anesthesia or Pain Meds, on top of preparing for Hurricane Ian, it’s been a bit chaotic!!
Prepping for Surgery was harsh because I have awful Veins… so even with a Vein Finder, they still ended up having to stick me a total of 8 times (twice during my Procedure) for an IV… everyone was very informative and thorough with me and made sure I was calm and in a good head space…
They wheeled me back into the OR at 1035am (20mins late due to the continuous IV issues) and asleep I went…
My Mom said that I was placed into Recovery right around 1pm, so Surgery was a little over 2 Hours…
Dr Bunnell told her that the incision was much smaller than he had anticipated and when he was able to see inside it was a “smashed up mess” so I do not think that any solid pieces of Styloid were removed with the exception of what was Calcified to the Hyoid and my questions of the “gap” in my imaging were answered…
The first day Post-Op was all a blur… My Throat still hurt 100% and I felt I had just went through all of this for nothing… still couldn’t swallow… still had the stabbing sensation… slight Facial Paralyais on the Right…
Day 2 Post Op the Throat Pain began to subside, the stabbing pain that I’ve been feeling for 6 Months is almost non-existent, but I’m still having trouble swallowing which I do think is Nuero issues, not ES issue… still slight Facial Paralysis on the Right… MAJOR Swelling…
Yesterday was about the same… the Leathery Phlegm I’ve been fighting has lost the leathery consistency, my Esophagus feels like it’s opening up more, but I am feeling a little discomfort on the right side… not sure what that is exactly… there was a lot going on in my throat and could still be from that… Swelling is gonna get the best of me!! Trying to rest and prep for a Hurricane was exciting to say the least…
All-in-all… I am beyond thankful for Dr Bunnell and for this group!! Thank you all soo much for your support!! You kept my head up when I was ready to throw in the towel and my day came faster than I realized!!
HI @MamaBear6! You really look great for being only a few days out of ES surgery!! You’re in the days where post op swelling is the worst so keep your head elevated when sleeping/resting & ice, ice, ice! Sorry the pain meds & anesthesia are a hardship for you. That’s tough! Hopefully you can switch to OTC pain meds soon if you haven’t already. If your swelling is a problem, please ask Dr. B to Rx a course of prednisone for you. It helps reduce post op inflammation a lot especially in the throat area.
ES surgery truly takes 6-12 months for full recovery & for you to know which nerves are recovering & which aren’t. You are in VERY EARLY days of recovery but I’m really glad you’ve already noted some positive results from your surgery. Try to take it as easy as possible (i.e. have your kids help w/ any further hurricane prep that may be necessary ) so your body can heal.
So pleased that you’re through surgery (& through the hurricane!) The incision looks great! As @Isaiah_40_31 says, swelling will be bad, so take care of yourself and don’t be worried if things are up & down for a while…good that you’ve seen some improvements already.
Thrilled to hear you are having improvements this early on! I am scheduled for bilateral ES surgery at the end of Oct. with Dr. Hackman and don’t do well with pain medicines. What worked for you?
I’m so glad to know you have surgery coming up w/ Dr. Hackman @JPB! That’s such great news! Additionally, you can talk to Dr. Hackman &/or the anesthesiologist for alternative pain med suggestions. Some doctors don’t Rx pain meds & recommend Extra Strength Tylenol
instead. I don’t think that would have worked for me, but then, I didn’t try it so can’t know for certain.
Thank you!! I have had injections in the throat recently at Northwestern in the hope that it would alleviate my inability to eat/swallow and breath well at times. It worked for a few days but things returned rapidly. I have a biopsy on Monday to review my GERD symptoms too. Unfortunately I don’t sleep well and am averaging 3hrs a night - no pain meds seem to work.
GERD symptoms are very common with ES & are generally caused by your vagus nerve being irritated by ES. We’ve had a lot of members go through drug regimens & a few even had surgery to try to resolve symptoms that only went away after ES surgery.
I’m sorry about your sleep situation. That’s tough when you’re already feeling awful. I recall not sleeping well when my ES symptoms were at their worst. I understand how that goes.
Typically pain meds don’t work for nerve pain. A nerve pain med is what’s necessary to help knock that out. Some commonly Rxed nerve pain meds are Amitriptyline & Gabapentin. It can take awhile to find the right med & correct dose to help though.
Thank you for taking time to respond to me - I really appreciate it!
I tried the nerve meds but they freaked out my skin and had other side effects. Sometimes I wish there was 1 med that had little side effects and could help calm things down. Maybe tonight I will finally sleep - maybe, just maybe :).
Good Luck with Hackman… if I had the Funds, i wouldve LOVED to have went with him!! Have heard nothing but great thing about him and his procedures!! Not that I regret my choice or my Surgeon… but definitely glad to hear that youll be in good hands!!
As for the whole GERD fiasco… GERD/Reflux was 1 of the few MANY pushover Diagnoses that I was given by the DRs who didnt want to look any further into what I was REALLY dealing with… and Im noy saying that I WASNT dealing with GERD/REFLUX-like issues, but I WILL say that pumping my Body full of PPIs for the past 6 Months did ABSOLUTELY NOTHING to benefit me and all the DRs just felt I was being rebelious when I just knew there was more wrong with my Body and I refused to stop advocating for myself until someone listened…
I may only be 4 Day Post-Op but the craziest thing… I havent had an “episode” that would mock GERD or Reflux yet even more crazy, Ive taken 3 of my Kids to the ER within the past 6 Months for Stomach Pains and Throwing Up, and they sent them Home with Omeprazole and deemed it “ACID REFLUX” for each of them…
So, you have an amazing Surgeon on your side, but make sure you so your own Research when it comes to these other DRs who arent familiar with someone who has ES… we are different… theyll push us to the side as Allergies and Reflux when in all Reality, its something much more important…
Im rambling, but youll understand… Im just over the Medical Field that were just gonna let me suffer
They Prescribed me very Mild Pain Meds but I just get scared when I add any Meds to my basic everyday Regimen… My Friend Recommended Arnica and Bromelain for Swelling so I may give that a try?? If it werent for the swelling, i would feel great, but these 4 Turkey Necks I have is just not cutting it LoL… I did get up and do some Laundry and harass my Lids for a bit today… felt a bit like myself… and as much as I would love to say that Neurologically I feel Im gonna be just fine, unfortunately I can feel that I am not too sure about that and that breaks my heart… I can type and carry out a conversation but verbally, my thought process is much slower… I still lose train of thought, I lose words, studder and slur, the numbing of my hands and legs hasnt gone away, the extreme fatigue (which could be from just having Surgery)… but I do see Neurology October 18 about a TBI… But I can laugh and smile and be my Goofy self again, and thats the part of me that Ive missed, sooo much!!!
They prescribed Norco 5/325 Post-Op but I just dont like Medication at all… Im already on enough Medication that when I add anything to my Regimen, it just freaks me out!! Gabapentin is something that I see recommended quite often in the ES World… I was on that MANY years ago to regulate my Shingles outbreaks, as it carries MANY different purposes, NERVE treatment being a Main one… so I do recommend maybe asking about it…
Hang in there, not long until your surgery! I did take Amitriptyline for the nerve pain which helped me, & as a bonus did help me sleep, but I think rashes & sun sensitivity can be an issue with it, so I’m guessing you’ve either tried it or it wouldn’t be suitable, a shame. Sleeping propped up did help me, pain wise & the vascular symptoms, might be worth a try if you’ve not already?
Hope your biopsy goes okay & shows nothing untoward…
Thank you! Yes, I tried the nerve pain and it didn’t work for me. Oddly, if I am not using GERD medicine for awhile and then randomly have Pepcid for the first 1-3 days, the symptoms are minimized in my throat. Weird!!
Hi, I didn’t do well on nerve pain meds either, made me feel like had frontal lobotomy. So I went down non drug routes for nerve pain relief. We perceive pain in our brains, so controlling brain state can help. Medical devices to consider-Alphastim-keeps brain waves in Alpha-the brain state of us when young children. NuCalm- monthly subscription so can cancel once well- has options for Theta brainwave state to heal body & Deep Sleep -to help you sleep, plus other stuff. Photobiomodulation also very good for nerve pain (&other stuff), in my experience, but be careful who:what you use. Some poor manufacturers/providers/therapists exist. Good luck finding what works for you. D
JPB,
You have an endoscopy? You mentioned biopsy…Sorry you are having problems breathing and swallowing and that injections was only short-lived.
I found that a 10 day round of prednisone after surgery really helped me limit pain medications. I have also found dexamethasone and/or other oral steroids helpful before surgery for the nerve pain as I think it knocks down the irritation and swelling.
I have GERD and NSAIDS give me stomach bleeds. Most all meds upset my stomach but will resort to OXY if needed but a few days after surgery I was down to one OXY a day which was tolerable.
Acid Reflux seems to be a catch all for doctors it seems. Omeprazole has done little for me. In my case, I know I have GERD as I have had endoscopy and biopsies in stomach and throat.
Im with you Mamabear…many docs think Im rebellious too - I swear they have a special note on my file saying “difficult patient” cuz I dont treat them as gods…at least the ones with the bigs egos. I was just in ER with my daughter too. It wasn’t exactly a pleasant experience (10 hours) but as a mother, I was able to advocate well since I wasn’t the patient. Luckily the ER doc (based on my input) was prompted to order a CT of her stomach and identify an infection in her colon. She was then confirmed to have C-diff!
Make sure anesthesiologist and surgeon are well aware of your sensitivities JPB.
At the beginning of my Journey, the first DR that FINALLY showed SOME compassion ans actually listened, admitted me into Hospital and had an EGD done on me with a 17mm Dialation of my Esophagus which was practically closed shut, I was at, about 20-25lbs down in 2 Months with total Esophageal Blockage… so yeah, the Dialation is NO FUN and unfortunately, mine was unsuccessful with thr exception of a wee little hole that I could force some fluids into to keep me alive and kicking…
But I kept saying, if I more DR tells me that Myself or my Kids have GERD, Im gonna lose it… Im already emotionally unstable and malnourished… DONT…TRY…ME!!! LMAO… Most of the local ERs in my small town just live seeing my face to say the least…
) so your body can heal.
and all the DRs just felt I was being rebelious when I just knew there was more wrong with my Body and I refused to stop advocating for myself until someone listened…
