Just received diagnose with pending dilemma

General
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Hello! My ES journey started around August of this year with a simple pain under my jaw. Since then, it has morphed into ear pain, throat pain, headaches, heart palpitations, car sickness, and GI issues. I’ve been to every doctor in the book for every test imaginable. They first tested me for infections… negative. Then cancer… negative. Then autoimmune diseases… negative. Then the doctors put me on anxiety and anti-depression meds. The first ENT I went to told me he didn’t know what was wrong and said I should see another ENT if I didn’t want to take his advice of sucking it up and being glad it isn’t cancer. Right now, the pain is daily and constant, but bearable. Emotionally, it has been tough because I alternate between sad, frustrated, and angry, which has not been easy on my wife and kids.

Here is my dilemma… I was just selected for a prestigious training that would land me a specialty at my work. (About 2 days later, I was told I had ES.) A specialty program I have wanted to get into for years. If I skip the training, it likely will not be offered to me again in the future. During the 4 month training, I will have limited to no access to medical care. At this point, I have limited experience with the condition and I have learned the most since finding this site yesterday. My main concern in solving my dilemma is pain progression. How much worse will my pain be 4 months from now? Will it still be bearable? Am I putting my health at major risk in taking a 4 month break from addressing the ES and possibly having surgery sooner?

Any advice or insight you could provide would be appreciated and beneficial. If this training was not so important to me, it would be a no brainer. It is likely a once in a career opportunity. However, it is not worth it if it will affect my long term health. I just don’t have enough information to decide on my own. My PCP said I am only the second case he has seen or heard of in his career, so he has not been much help. Can you help me decide?

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From a stay at home mom - the training to ensure you can continue to provide for your family would be nice. Most of our searches for surgeons take months anyway. Just push through, make a calendar to cross the days off your training and know that it’s best for your family in the long run to lock this job thing in.

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Live your life! Professional focus is a great distraction, keep your brain sharp and don’t look back.

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Hi Boscott,

ES is generally is not life threatening. In VERY rare cases, vascular compression has led to a VERY few people having strokes. Do some research on our forum about vascular symptoms. If you do not have any of those, or have them minimally, then you should be fine to proceed on your career path.

Non-surgical, temporary pain solutions that have worked for some people are nerve pain meds (there is a post by Jules w/ a list of meds in the Newbies Guide); another possible solution to get you through is having an ultrasound guided injection of lidocaine combined w/ cortisone in the area of your neck where your styloids exist. Some people have gotten several months of relief from the injection.

Nerve pain meds can have side effects, & it can take some weeks for them to begin to help. A good doctor will start you on a very low dose & gradually increase it to your tolerance & its level of efficacy to help prevent side effects.

I vote the same as SewMomma & JustBreathe. Grab the work opportunity. ES surgery can wait.

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I agree with all the positive support everyone gave above. You should go for it. Regret is really tough to live with. Maybe even worse than eagles right??

But I will be honest and tell you a bit of my story. I am 38, and have been in the Maternal
Child Health field for many years. I decided 1.5 yrs ago to pursue my dream to be a physician. I went back to school as an “old premed” and even kept up with the millennials in pineapple shorts :joy: making A’s.

But when eagles hit me hard about Jan 2019 I could barely focus on my organic chemistry and physics. It really took sacrifice and an understanding husband to handle a lot of the kids logistics so I could study for the mcat and finish those classes. I passed my classes barely but bombed the mcat. I can say it is partly because my eagles pain was not managed at all. I was taking no meds other than Celebrex and humira for another condition I have.

I had eagles surgery, trans oral on the left side in Aug. My professors gave me the first 10 days of class off and made it easy for me to jump back in. Unfortunately my surgery was unsuccessful and new symptoms popped up. I was in more pain than I was before. I quit my fall classes and am now taking a break. Let’s call it self-care :smiling_face_with_three_hearts:.

I had a 2nd surgery on the same side, Nov 19, this time externally and ended up with an infection. Thankfully I’m not trying to take finals right now on top of it all. Recovery has been rough.

This is just MY story and it’s not yours. I would be kicking myself if I didn’t take the classes and do the trainings I did when I did it. Even tho I quit this semester I am still studying when I can.

I say go for it. And I just wanted to not be one to sugarcoat what it may look like. I helped deliver so many babies and if I had said “it won’t hurt a bit” I would have been lying. Soo truth is this may sting a bit, you may cry even while you laugh, and things may not be what you anticipated but PUSH!

Here’s my tips based on my own experience when dealing with eagles pain and doing something BIG like you hope to pursue.

1-Have a therapist on your team… no shame in talking to someone about what you’re going through. I use BetterHelp.com. All my sessions are online, in my home, and my therapist has helped me immensely with my pain, failures, and juggling school/family life.

2-Manage the pain, some way some how, with knowledgeable non-judgemental physicians. Find the best ES docs and plan your care.

3-Get off social media. There’s no headspace for any of that when dealing with pain and big stuff. I learned the hard way!

4-Spend any extra amount of time you can with your family. Quality over quantity. It’s about connection not the fluff society will
Pressure on you.

5-Inquire about a mouth guard if doing a lot of reading, computer work, or late nights (jaw clenching).

6-eat good and practice good sleep hygiene.

7-Stick around this group. Game changing.

I wish you the best.

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Thank you for the encouragement. You all have been very helpful. Also liked the straight talk, premedmom. That is my biggest concern… being able to focus. I have a couple more doctor’s visits scheduled before I will have to leave, so I will work on trying to get some meds to help manage the pain. I reached out to Dr. Samji’s office and they asked me for a CT test w/out contrast (my last was with). I am going to try to knock that out over the next two weeks, so I can at least get him the info and go from there.

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Go for it, but if your training is very physical, it may be really tough. Prepare like the rest have said. It took me 5 years to fibally get my first side redone. I was in a lot of pain and had family issues to handle. We are survivers.I lost a lot of friends who could not deal with my ups and downs. All of what the others said, therapy and stick with us and the res are good advice

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I was lucky in that my pain was not as bad as many others have, but I had alot of sleepless nights with it still! That gave me time for studying at night while it was quiet! I was doing a childcare course at the time- not as mentally demanding as Premedmom’s course, but I think it helped to have something other than ‘what’s wrong with me, what’s going to happen…’ to focus on. I don’t want to make light of it, but hopefully for you the pain won’t escalate & it’ll be bearable for you.
As Isaiah says, it is very rare for there to be complications from vascular ES- did the CT with contrast show any vascular compression? If you were having scary vascular symptoms- passing out or having mini stokes for example- then I’s say it would be safest to have the surgery as soon as you can, but if not then waiting a while shouldn’t cause too many problems. There are some risks with surgery, so it’s worth taking time to consider that carefully too; obvs if left too long the styloids compressing nerves could cause damage over a long period, but while you’re on your course I would think it’s not likely to happen. Many members take years to get diagnosed, your journey sounds very frustrating , but actually quite quick in our experience, so take heart from that! I
Personally, I decided not to have surgery initially, because my pain was bearable, but a year later I had a disc problem in my neck & then I started to get vascular symptoms, so wanted to get that looked into. But because of the UK healthcare system, it ended up being about 9 months between being referred to another specialist & having the surgery!
A very good idea to get things moving with Dr Samji, & maybe you can arrange surgery for after your training. And looking into pain relief for the mean time is a good idea. Plus have you tried sleeping semi upright- that can help with pain at night sometimes.

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Also try calling whoever did your imaging… my ct order was for with contrast and they did both. The didn’t tell me initially. Just make sure they don’t actually have the scan saved without contrast for you :wink:

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The training is not physical. All mental. After reading everyone’s comments, I am going for it! Hoping my PCP will give me pain medication to take with me and enough to last through April.

Checking my CT to see if it was done with and without contrast is a good idea. I will do that. I am not looking forward to having it done again. Don’t want the radiation if I don’t have to.

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Good decision, Boscott. If you have pain/symptoms struggles during your training, post a note here, & we will do our best to give you advice based on our experiences - always keeping mind that we are not doctors… :yum:

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As others have said I would also say go for it while you are working on getting your CT test re-done and Dr. lined up. You could drop out if things get too bad. I was recently diagnosed and have surgery soon. Headaches are my worst symptom, they are worse after I talk for a bit, had them for over a year. In my state now I would have a very hard time taking on more work or trying to complete a training program that lasts months.

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dje1976 -

I had your surgery on my calendar for today. If you did have it today, please let us know how everything went as soon as you’re up to it. I’m praying for a great outcome & fast recovery.

:pray:

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Thanks!! So far I am doing pretty good. I did make a post on my thread with an update.

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