In Pain waiting on Diagnosis

I am in pain daily and becoming so discouraged!

The onset of my most notable symptoms began in November '19. Alongside my PCP, we have been in the process of chasing a diagnosis and/or eliminating other diagnoses. In this process of trying to find out the source of my pain, I have had 2 surgeries, and one procedure, so here is the course of the last 2 years:

  1. PARATHYROID adenoma removal due to hyperparathyroidism 8/29/21(Because of my previous thyroidectomy, I chose to go to the world renowned Norman Parathyroid Center for my parathyroid surgery)
  2. UPPER GI ENDOSCOPY & ESOPHEGIAL DIALATION Nov. '20 - I’ve also had this procedure done 2 years prior because I’ve suffered from GERD (one symptom of hyperparathyroidism) since 2018. so I requested to see my gastroenterologist once again because I was “feeling” like food was getting stuck in my throat, particularly the right side.
  3. CHOLECYSTECTOMY 10/15/20 (with complications) 4mm nick of my small intestines.
    My story thus far:
    In relation to my head and neck area, I had a partial thyroidectomy in 1999 of the right lobe and isthmus. No significant neck related pain symptoms until fast forward to November 2019 in which I had a stiff neck and unable to turn or manipulate my head and neck normally. I went to both physical therapy and chiropractic therapy which resulted in temporary relief. COVID-19 hit and without the availability of care for my non-emergency symptoms, like so many others, just felt worse until my previous listed surgeries & procedure which all resulted from blood tests and scans/imaging looking for the source of my pain. In between the afore mentioned surgeries and procedure, my periodontist friend scheduled an appointment to help me rule out oral cancer. No pathology was noted, but due to her thoroughness, she noticed elongated styloids on a panoramicmic x-ray and told me about ES. I will include two images from her. It seems as if we have to bring light to this syndrome on our own…I do not have a formally confirmed case, but hopefully will have some answers soon. I have been in so much pain from my head all the way into my arms and even my liver/gastrointestinal area which may, or may not be associated in my case due to my myriad of issues; but I have an appointment November 9th with Dr. Lammare at Cleveland Clinic. Does anyone see what could be causing me such horrific pain? I know the x-rays won’t show any possible implicated nerves, but I am utterly and completely miserable!!

That looks a nasty styloid, it’s not surprising you’re getting symptoms; it looks quite a point on there! We have quite detailed info in the Newbies Guide Section about symptoms & possible explanations, which nerves are potentially irritated by the styloids etc, here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Generally a diagnosis is given if elongated styloids &/or calcified stylo-hyoid ligaments can be seen on an x-ray or CT scan or felt, and the patient has ES symptoms, so you do fit the bill! There aren’t any clear cut diagnostic tests which can be done; some doctors inject lidocaine into the tonsillar area to see if it stops the pain, but this isn’t definite, it doesn’t always confirm ES.
I hope that Dr Lamarre is able to help you, & well done to your friend for spotting the styloids!

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YIKES! Both styloids look like ice picks! No wonder you’re having terrible pain. I also hope Dr. Lamarre is informed about ES & very helpful & supportive of your situation. If he’s not, don’t despair, there are doctors on our list who do know about ES & will be supportive though you may need to travel to see one of them.

Please let us know how your appointment goes.

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Thank you for the references Jules. I am so very thankful for this forum and the plethora of information and knowledge it provides. I have been reading and reading. I am concerned about finding a physician that is knowledgeable of ES & even more so Vascular ES. Dr. Lamarre is on the Doctor List, but after making my appointments at Cleveland Clinic, I see that any notes made on head and neck surgeons from CC on this list, either do not and/or may not acknowledge Vascular ES. I’m just concerned this could be all together some other issue that’s getting missed.

Thank you Isaiah_40_31. I saw Dr. Lamarre’s name on the list provided under doctor information, so I was hoping that meant he would be familiar with ES. I decided to make appointments at Cleveland Clinic since I have so many issues that I just hope to get answers for that no one else is seeing. I have so many neurological issues that have me concerned and scared. Proverbs 3:5-6 and Jeremiah 29:11. I also need to work at walking and not growing faint!! Thank you for all your support of so many!!

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Proverbs 3:5-6 is one of my favorite passages in the Bible but I also love Jeremiah 29:11. Another favorite of mine is Philippians 4:6-7. :heart:

ES can cause many nerve related problems & so often our members - myself included are surprised about what symptoms disappear once the styloids are removed. Granted it can take some months after surgery, but the positive health changes we’ve noted have often been quite amazing. I found some other posts about Dr. Lamarre that were very positive so you should be in good hands with him.

I’m so sorry for what you’ve already been through & that ES has added yet another health challenge to your list. I will be praying for a very good meeting with Dr. Lamarre.


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It’s a tricky one, many of us have had more than one health condition, & sometimes it’s impossible to determine what’s caused by ES & what else is going on… I appreciate that you want to know before you think about surgery, but often to go for it & see what your left with is the only way! If you have a CT with contrast it can show if blood vessels are compressed, especially if they’re in a position where you get symptoms. There’s info in the Newbies Guide Section about vascular symptoms- do you get dizziness, fainting, head pressure etc?

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