Intro - Newly Diagnosed -

Thank you guys. I took her to the vet last Thursday as there was no improvement. She had gastroenteritis.

My appointment with Dr. Hackman went well. Unfortunately my scans wouldn’t load but we did talk about my symptoms, different scenarios and how I physically feel in each one. He’s going to review my scans and then have a phone appointment with me on March 31st. Still nothing for pain, dizziness or nausea but it is hard to diagnose me if you can’t see my scans. There has to be light at the end of this tunnel.

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I’m glad your appt w/ Dr. Hackman went well. Always disappointing when everything doesn’t go perfectly & having issues w/ the doctor not being able to see scans seems to be a somewhat common theme here. I’m glad he’s not making you go back for an in person appt. & I sure hope his scan review provides info that allows him to help you more proactively. You do have symptoms which make daily life a challenge.

I’m sorry about your puppy. I hope whatever treatment the vet advised has helped her feel better. :heart:

It sounds like you are on the right path & starting to get some answers. That is good news! I hope they can give you something for pain, etc. while you wait to see if you will have surgery.

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A shame about the scans. Re having any treatment in the meantime, could you see your GP/ PCP for that, there are medications which could perhaps help with nerve pain, & dizziness.
Not too long to wait for your next appt, but will probably feel like ages for you- thinking of you…

Just wanted to give everyone an update. I spoke with Dr. Hackman today for my follow up phone consultation. He looked over my scans and both sides have calcified elongated styloid processes bilaterally. On the right the entire process and ligament is calcified to the hyoid bone, and on the left has near complete ossification as well.

We are going to move forward with surgery and we both agree that removing both sides is my best option with any hope to return to a normal life. I’m waiting for a call from his office to schedule the surgery. He will remove the right side first and in the same surgery remove the left unless there are complications.

Has anyone had both sides removed in the same surgery? I discussed with him what to expect after the surgery and plan to search the message boards here as well, but does anybody have any advice or experiences of the surgery and life after the surgery?

Hope everyone is doing well! :slightly_smiling_face:

jeu0721,

That’s great news that you now can move forward with surgery. I hope you’re able to get a date in the not too distant future. We have several members who’ve had bilateral surgery done by Dr. Hackman. Here is the link to one discussion. You can send Priscilla a PM to ask for more details about her surgery & recovery.

It is a big surgery to have both done at once & many doctors don’t recommend it, but Dr Hackman has experience with this. The swelling can be the worst part, so being prescribed steroids will help- not sure what Dr Hackman does but hopefully the link Isaiah’s posted will be helpful. You’ll need to do lots of icing & sleep semi-upright as we suggest with all surgeries.
Let us know when you get a date!

July 19th is my surgery date. I’ve asked for some pain meds as yesterday my pain was unbearable…I’ve been prescribed something for dizziness/nausea…nothing for pain. I scheduled an acupuncture appointment for Saturday. I’ve been suffering for over a year. I cannot continue to function like this. Takes me everything I have not to cry from the pain and anger of not being prescribed anything to help.

I’m disappointed in our health care system. I feel like they continously fail me.

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So sorry that you’re really suffering at the moment, who did you see about pain relief? Dr Hackman or your PCP? I’m from.the UK so not so sure of the US system, but wonder if you could try whichever one you’ve not asked?
Some members have tried lidocaine patches; I don’t know if it’s possible to get those OTC?
Ice packs do help some people, but I found heat was more soothing & helpful.
Is it possible to ask to be put on a cancellation list? Some members have done that & been seen earlier although not always easy to go for surgery at short notice obvs.
I hope that the acupuncture helps while you wait…thinking of you & sending you gentle hugs

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.