What great news about your appt & surgery date that isn’t too far in the future. I expect you’ll feel so much better once the compression is taken care of. 
Thank you for the kindness, I’m not a church goer, but do believe in a higher power.
3 Likes
It’s been tough, some days I can tolerate this, but yesterday was really bad, terrible thoughts, but today not so bad, aspirin to thin the blood and diazepam to smooth out the depression. God is this horrible.
1 Like
I’m sorry you had a bad day today. That’s the tough part of ES. Some days are pretty good & some days are AWFUL & it can be hard to understand why symptoms wax & wane as they do. Here’s hoping that you get some immediate symptoms relief from your surgery. In the meantime, taking the meds that help take the edge off of symptoms is the best you can do. Icing your neck (15 min on/45 min off) & sleeping w/ your head elevated now may also be helpful now. If ice makes things worse, try heat.
Definitely thinking of you and wishing you the best! The 17th will be here before you know if and you can put this piece behind you and move
Forward with the recovery piece! The part that will make things better for you! I understand and completely relate to things that you are saying and how you are feeling. I have days where I have no idea who this person is inside this body because I am SO miserable and uncomfortable and just want the pain and discomfort to end. Definitely doesn’t help my anxiety when I feel like that ! Double whammy 
I do believe that this surgery will help you and will make you feel better and afford you the quality of life you deserve! Keep your eye on the prize my friend! You got this and are NOT alone!!!
2 Likes
@eastmas1 ~ I had on my calendar that you had surgery today so I’m checking in to see how it went. I hope everything was as planned & you’re doing well tonight. Please let us know how you’re doing when you feel up to it. 
Surgery for me is the 17th. I will let you know. Thanks for the help.
1 Like
Had the surgery, I’ve posted it some where on this sight, I’ll try to repost it here.
1 Like
@NH48 - You don’t need to worry abt re-posting. Your post op posts are showing up in the “Initial Consult Done - Very Very Frustrated” thread. I can move it to its own topic if you’d like.
1 Like
Please do!
I talked to my niece just before my surgery, seems like a friend of hers dad had this 15 years ago. He is is a nurse and it took him 10 years to get treatment.
2 Likes
When I saw my PCP after my ES diagnosis & told him I was going to have surgery, he essentially said, “Don’t bother. It won’t help.” He had a doctor friend who’d had ES & a surgery that didn’t help him at all. I think it was a number of years before my diagnosis. Thankfully, ES surgery had come a long way by the time I had it, & it was life changing (in a + way) for me!
@NH48 - 'tis done. Well, I had the Surgery
Hello again, I have to say yesterday was the worst post op day. But this morning I can actually feel different. The noise is down again. 
But I have to ask, should I carefully move my head and neck around (physical therapy) to reduce adhesions and scar tissue?
I did some very gentle neck stretches I think a couple of weeks after surgery, but as doctors have different techniques it might be best to discuss this with your doctor or a nurse in their team?
I’m glad today is better, ups & downs are normal…
As Jules noted, symptoms may flare & recover, flare & recover in cycles over the next 2-6 months & possibly beyond. You will come to sort of expect it then be ecstatic when, one day, you notice a symptom or set of symptoms seems to have disappeared entirely, as you haven’t felt them for awhile. I had a number of “AHA” moments of that nature during my recovery. So glad today was better for you!
1 Like
Day 7, this was the worst day, refilled my pain meds, only taking them before bedtime.
Day 8, so far it’s better, odd feeling earlier as if something was draining out from the surgery site. Tylenol for the day. Very sore behind jaw and below ear. PA said that’s ok, that’s were the styloid was. I can bend over and pick things up without feeling that my head would explode, noise is now smaller in tone, headache comes and goes. Just crazy.
3 Likes
It’s good that you’re seeing some improvements, hope that you can hold on to thinking about those if you have any more bad days…take care of yourself
I’m sorry for the bad day but excited to read about the positives you’ve noticed. Don’t be afraid to use your Rx pain meds on a bad day & not just at bed time. I took mine for 6 weeks post op after my first ES surgery. Granted, I started cutting them back to fewer doses/day late in my second post op week & then began cutting them in half at some point & as you’re doing, only took them at night starting week 3 EXCEPT on a day when symptoms flared up. I had a couple of refills & funnily enough, found my unused meds in the back of a bathroom cupboard abt 6 mos ago (surgery was in 2014). I took them to my local pharmacy for disposal at that point.
Hello it me again, week 8 is in the books. It’s a roller coaster ride, still doing better, but like everyone here I wish this was over. One oddity is my blood pressure. Up and down but it’s stable now, we dropped the the amlodipine because of odd headaches. Amlodipine is used to dilate and relax blood vessels. I had mild frost bite several years ago and this was recommended…Still some facial sensations those come and go. Ear noise comes and goes. Nerve repair does take a long time. Dr Annino said the styloid was compressing the IJV, the carotid artery was rubbing against it transmitting sound, and also cranial nerves were in contact with it. Yes 3 to 6 months it may take, but the improvements are there. I think I’m at the 50% plus stage now. One last item, I put a heat pack on that side of the neck at night while watching tv. It’s like getting getting a shot of dopamine. Try it you’ll like it!
3 Likes
@NH48 - How great that you’re seeing a positive direction in your recovery. I will amend the 3-6 mos recovery Dr. Annino suggested to 6-12 mos. & beyond. I’m still having nerve recovery after 7+ years.
I have pernio in a couple of my toes + Raynaud’s Disease. I saw a podiatrist for my toes several years ago, & he Rxed a supplement that is described as a medical food so has no side effects. It has really helped turn the circulation around in my fingers & toes. It’s called EB-N5 & is made by EBM Medical (located in Chesterfield, MO). There is another similar product on the market which is also an Rx, but I can’t remember the name. It might be worthwhile talking to your doctor about trying the EBM product.
1 Like