Surgery scheduled with Dr. Samji - Oct 28

General
1

I had my appointment with Dr. Samji on Oct. 11 and have been diagnosed with Eagle Syndrome. Finally a diagnosis after 4+ years! Surgery is scheduled for Oct 28 to remove left side.

History:

Started having lightheaded/dizziness and balance problems 4 1/2 years ago coupled with inner ear and jaw pain left side.

Left ear eustachian tube dysfunction. Left ear constantly feels plugged.

Pinching sensation in left ear/ escalates to feeling like an ice pick.

Chronic ringing in both ears. Gets louder when symptoms are worse.

Vertigo. Constantly feel like I am moving even when not. Real slow. Sometimes goes into full spins.

Feel like I am going to pass out upon turning head. Left side happens faster then right.

See stars if head is tilted up, to the right, or bending forward

Sensitivity to light,sound and motion. (fluorescent lighting is the worst) If it is flickering I end up down on hands and knees.

Rocking on a boat sensation/ ground feels uneven/ sinking down with each step.

Blurred and double vision.

Facial tingling on cheeks,lips and chin.

Left side of tongue goes numb off and on.

Occasional pain and stiffness in neck left side.

Pinching and pulsating sensation down front side of throat left side. About 2 inches above collar bone left side. Occasional muscle spasm in this area too.

Crackling noise in both ears. Left ear sounds like bones crunching/ grinding while chewing and swallowing.

TMJ/ jaw out of alignment 3mm to the left. In jaw splint 24/7 Relieved some pressure but not enough.

Evaluated for possible wisdom tooth pressing on nerve. Had panorex x-ray done at Oral Surgeons He said the ligaments on both sides of my neck were turning into bone and that they should never have showed up on x-ray.

3D CBCT / showed clearer picture of Styloids / see attached

(Try not to laugh too hard at my crazy wisdom tooth way up there) Lol!! :)

Left%20Side%20-%20styloid.png

Right%20Side%20-%20styloid.png

Rarely have pain but when I do it is just below ear and goes up under eye socket left side. Was flared up after exam. Been coughing ever since too and swallowing feels weird. Tongue is numb all the time now and goes down throat left side.

Sorry this is so long..... Felt I had to pack it all in since everything is moving so fast now :)

2

Wow, those are exceptional scans. Thanks for the list of symptoms. Please keep us informed long after surgery. We will need you to help encourage future members.

I pray for your complete recovery. I will check in after surgery sometime.

3

I am really interested in seeing how your surgery improves your symptoms because I have had so many of these symptoms! That surgery date is so close! I am glad that you have answers!!!! Those scans are really cool...they are almost artistic!

4

Great images! So glad you finally have an answer. I also have about 3/4 of those symptoms- the dizzy/balance/lightheaded related ones especially. It's very disabling and I hope the surgery relieves these for you. I will be curious for myself as well.

5

Amen Sista!!! Wil be praying for you!!!

Todd

6

Emma, Tee, Kitty9309, & Todd,

Thanks for the prayers and encouragement! I knew when I read so many your stories on this site..... I was home! I was amazed that there are so many overlaps of symptoms in each person and the degree may vary.

I brought this up to my Internal Medicine Dr. at my pre op physical. She had actually done some research before my appt! After I explained what Dr. Samji had said. She went on to explain that it all depends on what the styloids/ ligaments are pressing on and that it all made perfect sense to her.

She also mentioned that the vagus nerve is located in the same area and that some of the symptoms that we are experiencing may also be due to that nerve being constantly aggravated. Basically creating varying levels of fight or flight symptoms. I nearly hit the floor! Instead of getting the you have anxiety speech.....(of which she has never done to me).

She had tears in her eyes and leaned in said "You poor thing.... you really aren't ever getting a break".

All of which can be vary draining to deal with on a daily basis.

I had to share this in case anyone is feeling the same way :)

I think my husband was having far to much fun with the 3d software!! LOL!! :)

I will definitely keep everyone posted!!

Sheila

7

Thank you for sharing that! I have no doubt that the vagus can/is involved. I have a POTS diagnosis and am very hopeful it is because of this and not my EDS, though most with EDS have POTS too.

The old "anxiety" diagnosis is very upsetting, then we seem even more anxious!! lol I definitely have the flight or fight thing going on. A beta blocker I can finally tolerate is helping, but my cardio feels it may not be "just" POTS but the jugular compression causing same symptoms, along with my high brain pressure.

It is great that your Internist is now more educated on this and on your side!! :)

8

Welcome!

I really hope that for you as well!

It will absolutely made me more anxious! Drove me into therapy...... Therapist said this isn't anxiety and pushed me to keep looking further to get the answers. :)

I tried a couple of beta blockers as well. I couldn't tolerate them. So we gave up.

Interesting.......I explained to Dr. Samji about when I turn my head I feel like I am going to pass out. He said it was because my carotid artery is being pressed on.

I am really curious to see what symptoms go away when I have my surgery and the swelling goes down. I realize it make take getting both sides removed to get it resolved.

I was so relieved that she is!! :)



Kitty9309 said:

Thank you for sharing that! I have no doubt that the vagus can/is involved. I have a POTS diagnosis and am very hopeful it is because of this and not my EDS, though most with EDS have POTS too.

The old "anxiety" diagnosis is very upsetting, then we seem even more anxious!! lol I definitely have the flight or fight thing going on. A beta blocker I can finally tolerate is helping, but my cardio feels it may not be "just" POTS but the jugular compression causing same symptoms, along with my high brain pressure.

It is great that your Internist is now more educated on this and on your side!! :)

9

Wow, you have a wonderful internal medicine doctor. I have one like that as well. She has been very supportive during all my trials for the last few years. Not many like that around. Mine doesn't have the time to do research, but she has believed me and complimented me on my ability to find the right doctors for my different conditions, and treats me more like an equal than any doctor previously. Good luck on your surgery. I expect that you will do fine.

I know the vagus nerve can be involved, but didn't think about the fight or flight issues. I thought mine were from my thyroid cancer and parathyroid issues, but my anxiety did not reduce a lot until lately. Just recently, I have had to change beta blockers and drop another blood pressure med, so maybe my " anxiety" and blood pressure issues were more due to the Eagles. I am taking so little medication for blood pressure now, that I might not even need it anymore. Wow, that would be cool. Maybe if I believe it, it will happen. For the first time that I can remember, I can walk and exercise without being in a lot of pain. Still have old bones, but feeling a lot more energetic. Maybe it was all vagus nerve issues, only time will tell.

10

Thanks! Happy you found a good one too! Makes all the difference in the world! She is part of a team. Internal medicine, Naturopath, Chiropractic, physical therapist, and clinical nutritionist. I started with the nutritionist as I have celiac disease and hypo thyroid. They do everything they can to treat the whole body and find the root of the problem. Not just treat the symptoms. I had them all stumped!! I would only improve so far. They sent me to the dentist to see if there was anything more that could be done for my TMJ and check to make sure there wasn't some underlying gum infection. He sent me to the Oral Surgeon and he found two roots....... LOL!! :)

So happy to hear you have had improvement and have come off of some meds. It would be great if you could lose the rest!! :)


emma said:

Wow, you have a wonderful internal medicine doctor. I have one like that as well. She has been very supportive during all my trials for the last few years. Not many like that around. Mine doesn't have the time to do research, but she has believed me and complimented me on my ability to find the right doctors for my different conditions, and treats me more like an equal than any doctor previously. Good luck on your surgery. I expect that you will do fine.

I know the vagus nerve can be involved, but didn't think about the fight or flight issues. I thought mine were from my thyroid cancer and parathyroid issues, but my anxiety did not reduce a lot until lately. Just recently, I have had to change beta blockers and drop another blood pressure med, so maybe my " anxiety" and blood pressure issues were more due to the Eagles. I am taking so little medication for blood pressure now, that I might not even need it anymore. Wow, that would be cool. Maybe if I believe it, it will happen. For the first time that I can remember, I can walk and exercise without being in a lot of pain. Still have old bones, but feeling a lot more energetic. Maybe it was all vagus nerve issues, only time will tell.

11

Ha, Ha, I will never lose them all. I had thyroid cancer and had my thryoid removed, but right now, I am on only two that I must take everyday. The list has gotten smaller for the time being. I have others as needed. I love it when the as needed is not very often.

Praying for you, try to relax and take it easy this weekend and after surgery, make sure you rest a lot. Don't try to do too much for the first few weeks.

12

Glad it is only down to two! :)

Thanks and I will do my best to rest! The relaxing part is getting harder to do. Now the "anxiety" really is kicking in.....

13

All checked in at pre- op. Just about go time…

14

Best to you Lailei.

15

Be well.

16

Thanks for all of the prayers and support!! I really can't express how much it meant to me to not feel alone through all of this!! :)

17

Lailei-

Oh my gosh! I forgot you are the person with so many symptoms like my own! Thanks for your comments on my post.