Intro - Newly Diagnosed -

Hi jeu0721,

AGREED! It’s miserable to live in a barely functional state. I, too, hope that acupuncture helps a lot & that if you need supplemental help w/ your pain, one doctor or the other will give you an Rx for that. I think doctors try to be careful w/ pain meds per se because of the addiction problems in our country. Nerve pain meds often help more w/ ES symptoms than narcotic pain meds. I would ask about an Rx for a nerve pain med. They can take a few weeks to start making a difference but once you find the right dose, they can make a real difference in reducing pain levels.

I found that heat helps more than anything. Acupuncture did bring some relief but it didn’t last long. Some days are better than others but some days I just cry. I could have the surgery earlier but I’m having to work around the closing schedule for month ends at work (I work in accounting), my coworkers’ vacations (two of us have to be in the office and I only have four people in my department) and my mom is flying in from Louisiana to help with my dogs. So unfortunately July 19th was the first available time that met all three.

I’m excited but nervous at the same time. This will be my 3rd surgery ever and my 2nd ever time having to stay over night at the hospital. Plus Covid is making it difficult because I can only have one visitor from 9AM to 9PM and then they can swap from 9PM to 9AM.

Does anyone know how long the surgery actually takes? For both sides? I have a wedge pillow. My mom is thinking up a soft food diet for me. She’s going to stay with me for a week. My surgeon says I’ll be on pain meds for about three days. I know where the incisions will be. I’ve been reading swelling is a huge issue. What can I do to prepare? Any other advice? Questions I should ask my surgeon?

Hope you all are doing well and I cannot thank you guys enough for being here for me. :heart:

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So glad you’re finding things that help w/ your symptoms/pain. Hopefully surgery will be the ultimate cure. It’s also great to hear your mom is coming to help you! So good to have family around at times like these.

I’m guessing bilateral surgery will take 2-3 hrs depending on how your neck is “laid out”. If Dr. H has to work around tangled nerves or compressed vascular tissues, then the going will be slower. If all is straight forward, then it will be quicker. I’ll let Suzzetteas or someone else who’s recently had bilateral surgery comment more accurately on that.

You will wake up wearing a “neck bra” which is a compressive sleeve that will help reduce your inflammation a lot. This is Dr. Hackman’s signature anti-swelling device. I’m sure other docs use them, too, but he’s the first I’ve heard of on our forum. You can leave it in place for a day or two longer than he recommends as that will give your neck a bit of extra support it can use then. If it’s irritating or painful, then take it off at the time he says. Ice, ice & ice will help a lot w/ your pain & swelling post op. Fifteen to 20 min on & 45 min off. Make sure to put some sort of barrier between your skin & the ice pack i.e. thin washcloth, pillowcase, towel, to protect your skin so it doesn’t freeze. Having 2-3 gel packs is best so one/two are in the freezer while you use one. Make sure you have them in the freezer before heading to surgery.

You’ll most likely also need a stool softener & laxative if you take the Rx pain meds as they tend to clog the “plumbing” - not something you want to add to your post op discomfort.

That’s all I can think of for now. I’ll put your date on my calendar so I can pray especially then for your surgery & Dr. Hackman.

:hugs:

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Thank you so much. I will definitely make sure I have some gel packs in the freezer and stool softener before I leave for surgery.

My parents are divorced and my mom is going to ride with me for the actual surgery. She’ll be there before and after. Then at 9PM she’ll go back to my house to take care of my fur babies and my dad will swap out so he can take me home the next day.

I think my biggest fear is reading all the posts about not being able to swallow. I know having that feeling without surgery freaks me out and sends me into a panic attack. I happens occasionally, reasons unknown, but I’ll go to swallow my own saliva and it’s like my throat is ignoring the signal from my brain. It’s a terrifying feeling for me.

Have you heard of anyone with ES experiencing pain, discomfort and extreme weakness from they’re shoulder all the way down their arm? Just started a couple of months ago. It’s my right arm, my dominant arm and the side that is completely calcified.

With intra-oral surgery, it can be really painful to swallow afterwards, but with external surgery it rarely happens- there can sometimes be soreness from being intubated, but swallowing shouldn’t be a problem. That was one of my biggest worries after surgery- would having the styloids removed affect it, but I was fine, couldn’t tell any difference! I hope this helps?
The styloids can compress the accessory nerve, which goes to the arm & shoulder, causing numbness & weakness, so this could be causing your symptoms.
Glad you have a plan to be looked after following surgery! A shame that you can’t have it any earlier, but will pray for you too. :grinning: :pray:

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We have had a number of members who’ve had neck, arm & hand symptoms from ES. Here are some links to posts on that subject. There are many more that you can access by clicking on the magnifying glass icon & typing in hand & arm symptoms or hand & arm pain numbness:

I had no trouble swallowing after surgery but did have a very sore throat, as Jules mentioned, from the intubation during surgery. My throat felt swollen but not obstructed.

Thank you for sharing those.

Dr. Hackman had to reschedule my surgery. His surgical scheduler said he’s going on vacation…unfortunately nothing was available sooner so I now have to wait until August 16th.

My family and friends don’t understand my pain. “You’ve gone this long, what’s a little more?” Or “think of the people that have it worse” or "there has to be something you can do that you just don’t want to do. "

My right arm grows weaker every day I feel like. Brushing my hair, doing dishes, cutting my food and texting are just a few that now requires breaks to accomplish. I bought a compression sleeve to see if it helps. I’m doing massage therapy. I try to push through the pain, discomfort, tightness and weakness. I cry so much. I suffer from depression on a good day. Here lately I don’t have any of those. So every day is a true struggle mentally, emotionally and physically.

Newest symptom is a tickle in my throat which leads to the feeling of something stuck in my throat that then leads to nausea. Popsicles have become a tremendous help but unfortunately I can’t suck on those while at work. Covid has everyone paranoid if I cough that I’m sick. Obviously I’m not. I have no other symptoms. And the cough is because of that annoying tickle/poking/lodged feeling.

If it wasn’t for this group I would not have the knowledge I have of ES and the ability to learn more of it. I would still be searching for answers vs counting down to my surgery date. I’m thankful for this group. I need prayers, positive thoughts, warm wishes or anything you’d be willing to send my way to help me deal with the pain, discomfort, weakness and depression ES is bringing me. I’m struggling.

So sorry that your surgery has been rearranged, that’s rotten & especially when you’re in so much pain. Can you ask to be put on a cancellation list in case anything comes up sooner? I know that might not be possible if you’ve got to take time of work though, but some members have got in earlier for appts etc like that.
Good that you’ve found popsicles help with the tickle/ cough- there has been a discussion recently about lozenges etc that others have found helpful, here’s a link:
CAnt stop coughing - Support - Living with Eagle
It must be so frustrating , especially with everyone being so suspicious with Covid…
Sorry if you have already tried meds, but nerve pain ones can sometimes help- like Lyrica, Gabapentin, Amitriptyline, it can take a little while to find one that does, but worth a go if you’ve not already…it sounds like the accessory nerve is being compressed, the meds won’t help with the weakness, but might with the pain…
I’ll be praying for you, & sending you a gentle hug, we do understand how hard it can be here :hugs: :bouquet:

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I think the surgeon and primary care provider are fearful of giving me nerve meds because I’m on so many meds for my depression. My psychiatrist doesn’t understand what Eagle’s syndrome is and doesn’t want to add anything to the ones she has me on. I’m going to search those you gave me and see if there is an interaction and message the doctors again.

It’s funny you shared that link because I was reading some yesterday. I typed in “coughing” and starting searching. I’ve asked to be put on a cancelation list but because of work the likelihood I could accept something last minute is slim. Plus my mom probably couldn’t make it on short notice since she’s flying in from Louisiana. My uncle says I’m making excuses but without a job to return to I won’t have the insurance to help pay for the surgery or a roof over my head when I get home. And without my mom to help me, I can’t recover correctly trying to take care of 5 dogs. I’m single and live alone. Unfortunately I don’t have many friends and nobody else is willing to help me once I’m released from the hospital.

Thank you for your kind words. They are greatly appreciated. :heart:

Hi jeu,
Sorry to hear of your struggles. Im not so sure why your psychiatrist cant handle the addition of nerve pain medications…might want to consider getting a 2nd opinion?
My daughter is on several medications for depression and sleep disorders due to a medical condition. Her neurologist just last week added gabapentin to list of medications and we specifically discussed that there would be no issues with using it with her current medications. It is a drug that has been around along time.
When I was waiting for surgery and in alot of pain, I found a neurologist who specialized in primarily injections (nerve blocks, botox and steroids) into neck, skull, throat areas. I was referred to him by a pain management specialist and he was a lucky find.
I would try and seek out someone who does these types of injections and/or a pain center to see if you can get some relief. FYI: Dont have botox injections less than 6 weeks prior to surgery.
If you are not up to injections (I was desperate), you could consider asking surgeon or PCP to prescribe an oral steriod to see if it might knock down some of the inflammation in the body. My first major pain flair, I was given dexamethazone and it worked very well.
There is alot of thought that the inflammation causes swelling (and calcifications) and presses on nerves thus causing the pain.
Its just a thought to consider to get you thru till you can have surgery. I did all the above and massage and acupunture.
Hang in there. Living in chronic pain can really put you into some serious spirals of depression especially when you dont have anyone around you that is supportive or understands you are in serious chronic pain. We all do here. So consider it a haven for you.

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Sending regrets from here, too, that your arm symptoms & new throat & nausea symptoms are such a problem. I’ll add to Jules comment by saying that the throat tickle & nausea are likely coming from vagus nerve irritation. Getting the styloid(s) removed should make a big difference though it may take some time after surgery for your symptoms to subside. If your vagus nerve is very irritated, getting the pressure off it may also help ease your depression to some extent as the vagus nerve is a huge player in our anxiety/depression levels.

I’m sorry you have such a lack of support in your life but am hopeful that once you are recovered from surgery, things will change for you as you feel better & higher functioning. I will adjust your surgery date on my calendar so I can pray for you that day especially.

@jeu0721 - So sorry to hear all that you are going through & now having to wait for the surgery. That is hard.

I just had my 2nd surgery almost 3 weeks ago. I had a chronic cough for 15 years! I didn’t realize it was possibly from E.S. until my doctor who diagnosed me said it probably is related. I work retail & lived through the past year & a half with the cough & people thinking I have COVID. Super fun! I pretty much had a cough drop in my mouth any time I was out in public. I just used Ludens brand, which are really mild - basically just for soothing. I think you could possibly try hard candy too. You just have to find a kind that doesn’t make you cough worse - if it produces too much saliva. I am happy to report that now after my 2nd surgery, my cough is about 95% gone! I wouldn’t have believed it! Even my surgeon was surprised when I told him the other day. Hopefully that symptom will go away when you have your surgery too.

Also, after my 1st surgery (extraoral), I had trouble swallowing quite a bit for about 5-7 days after my surgery. I figured it was related to the anesthesia & the tubes & position that they have to do. So with my 2nd surgery, I told the anesthesiologist about it, & he sprayed something or did something specifically for that & I didn’t have any issues like the 1st time. I was so glad. I was eating regular kinds of food (in small bites) right away. It was totally different!

Good luck with your surgery & I hope you are able to find some pain relief prior to your August surgery. Try not to listen to the naysayers & people who just don’t know what you are going through.

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Great advice, naturelover. Thank you so much for sharing your surgical experiences. I’m sooo happy to hear your symptoms & especially your cough are mostly resolved. What a relief for you! I know how annoying & even somewhat debilitating a chronic cough can be. :blush:

Good Morning,

Dr. Hackman responded to the MyChart message and apologized for my pain. He said he could call me in a muscle relaxer but couldn’t guarantee it would help. I messaged my psychiatrist and explained to her that there were members in this support group that felt Lyrica, Gabapentin, Amitriptyline could bring me relief. I asked her to see if one would be safe. I told her that if she didn’t I was going to look into Kratom or Devil’s Claw. I said that I’m becoming desperate and I much rather be prescribed something vs turning to something that won’t be supervised by a doctor’s care. I have a phone appointment tomorrow afternoon to discuss Lyrica, Gabapentin, Amitriptyline.

I’m also researching a neurologist but I didn’t know if there was a certain neurologist I should look for. I’m going through my health insurance website to find some local. There is one pain clinic where I live but they do not have good reviews. I rather make that my last option as they require all new scans and their own diagnosis before offering prescriptions.

Yesterday I started showing weakness and discomfort in my left arm. I have 70 days until my surgery. I can’t do this for 70 more days. I don’t understand what I’m doing wrong. I don’t understand why the doctors don’t want to help me. Is it because of my bipolar II disorder? Or family history (my mom’s side) of drug addiction. I’ve never had an issue with that. Normally I will hold out as long as I can before I take anything stronger than something OTC. But I feel like now that I need something nobody will help me.

So sorry that you’re finding things
So sorry that you’re finding the pain really hard at the moment; I’m sure the 2 months wait does seem really long…I’m not in the US, but from what I’ve read on here from other members is that doctors do seem reluctant to prescribe strong painkillers, although the nerve pain medications are not usually a problem. I don’t know though if you’re on any medication for bipolar & whether that would make a difference, that’s something you’d have to ask your psychiatrist.
As for a Neuro, we don’t tend to hear about ones we could recommend, as usually people see ENTs or Skull base surgeons, only occasionally a Neuro. If you did have a look at the Ben’s Friends Facial Pain Group they might have some suggestions of doctors to see.
Are you going to try the muscle relaxer? Some members have found they help. Sometimes lidocaine patches can help too or topical cream if you’re able to get that; it was mentioned in a recent post.
I hope that you can find something to help you soon, sending you a hug :hugs:

Jeu0721,
I’m sorry getting a prescription to help you at this time has been so challenging. I’m a bit surprised Dr. Hackman wouldn’t offer to Rx nerve pain meds or an anti-inflammatory since you have seen him for an appt. I believe in most states, a doctor cannot Rx meds for a person whom (s)he hasn’t seen in person.

Other options besides nerve pain meds are a course of Prednisone. NSAIDS have also helped some people. There are two types - OTC & prescription, & among the Rx variety there are traditional NSAIDS & Cox2 inhibitors. Cox2 inhibitors tend to be less hard on the stomach lining than traditional NSAIDS when there’s a need to take them for awhile. Here’s a link to an article I just read that might be helpful for you: https://www.google.com/amp/s/familydoctor.org/prescription-nonsteroidal-anti-inflammatory-medicines/amp/

The most important thing is to find a medication that doesn’t interact with something else you’re taking.

Hi Jeu,
I hope you have found some relief. As for finding a doc who does injections, you have to call around unfortunately and/or do web various searches and check out each docs web site. Usually a neurologist that does botox injections will do other types of injections so I would start there. YOU may need to go outside your area to find someone or a pain center with a good rep.
Personally, I don’t think you are not getting help because of being bipolar. This is not uncommon in general in the medical field to not address pain issues. I think because the FDA has cracked down on docs for over-perscribing, some docs shy away from it. The key is finding a doctor that listens and going to the right doctor to get what you need. If you go to the wrong doctor, they will just blow you off. My personal experience is that the docs that do help are few and far between and takes alot of advocacy to find the right one. Dont give up!

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Thank you all for your replies. The muscle relaxer from Dr. Hackman unfortunately did not help. I slept 98% of that day. I still had pain and discomfort. Lots of tossing and turning to get comfy. I felt so drugged. I don’t know how I am supposed to take 3 a day…lol. Massage therapy helps. I’m now going to up my session to once a week. Hot baths are still my go to.

Tuesday I have an appointment with my Integrative Health doctor and an appointment with my new psychiatrist. My other psychiatrist told me I was going to have permanent nerve damage and I needed to demand surgery ASAP if I’m really hurting as bad as I claim. She also said she wouldn’t feel comfortable prescribing or even letting any other doctor to prescribe me the nerve pain medications that this group recommended. She said she didn’t think they would work with my current medications. She has been rubbing me the wrong way for some time now and doesn’t accept any insurance so this was the final straw.

Depending on my appointments on Tuesday go and how much money I have left on my FSA card will determine my next step for trying to find relief until my surgery. I’m so emotionally, mentally and physically drained. ES is starting to really take a toll on my depression. My counselor says chronic pain and do that.

As always I appreciate all of you. I hope you are all doing well.

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Hi Jeu0721,

I’m glad you’ve left the psychiatrist who was not helping you & am hoping the nee one will be of great benefit. You are wise to stay away from any medication that your body responds negatively to or in an extraordinarily strong way (I.e. extra drowsiness for many hours). No need to add new problems to what you’re already dealing with.

Your counselor is spot on about chronic pain causing depression. I would even bet the hormonal response to pain knocks the endorphins right out of the way like a bowling ball to bowling pins. Without our natural “happy hormones” depression rears its ugly head & is hard to suppress.

I will pray for you to find the right combination of physical & emotional therapies & temporary meds to get you to your surgery date in a positive/optimistic frame of mind.

:hugs:

Hello everyone! I have surgery tomorrow with Dr. Hackman. I’m to arrive at the hospital at 7AM. I am so excited but really nervous now that it is so close. I’ll update as soon as I can.

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