Signs your other side is flaring?

Hi! Many of you know I have vascular ES and had all left sided nerve pain symptoms along with high ICP readings in head due to jugular compression from the styloids. I had left out in March. Did not get big relief in symptoms, face pain sometimes, but now the venous congestion fluid dripping sensations I get in my head are now mostly on the side still present and now having a little jaw pain there chewing. What are signs that made you realize it was time for the other out. Anyone with vascular ES that took blood thinners and symptoms improved? Thanks!

I was lucky & I did notice quite an improvement in my vascular symptoms fairly soon after surgery. But I did notice more pain in the other side. I did take a bit of time to consider surgery again, but decided I wanted to get as better as I could, wanted to get it removed while I could before it potentially caused any more damage, & also because there are so few doctors experienced in this surgery, I wanted to get it done while he was still doing surgery! (Some doctors decide not to do styloidectomies any more; we’ve lost several doctors off our list, or doctors move, so it is a consideration. )
Obviously the virus has delayed surgeries & is a consideration too, but if you’re still getting symptoms & are over the first surgery, then maybe get it done while you can?

Morning Jules
I am in the UK. Please can you tell me who did your surgery.
Thank you

Hi EagleSue1. I only had the left side operated on. I don’t seem to have issues with the remaining side although it is elongated and fractured. My surgeon said to leave it alone until or if I experience issues.
I read here that complete relief is more probable to be attained if both sides are removed as pain can cross over.
I will be following your post. Have a great day.

Hi EagleSue1

Jules doctor was Mr. Axon at Addenbrooks Hospital. Here is the Doctors’ List so you have his contact info: Doctors Familiar With ES Countries Outside US 2019

Yes, Mr Axon at Addenbrooks in Cambridge did my surgery, & quite a few others on here. He’s very good, & you can get referred from other areas, although his waiting list is quite long now! As Isaiah mentioned, his details & some other UK doctors are listed in the 2019 list.

I had the same symptoms except mostly on the right side. My surgeon believes in taking both sides out if they are both too long. I had all taken out at the same trime and got a tremendous amount of relief. Even though the left was longer and branched off three times all my symptoms were primarily on the right. I hope you get relief soon!

1 Like

WOW, adriene61! Interesting that your left styloid had “branches”. That’s something we haven’t seen. Did you get to see it in your CT scan?

i didn’t see it on the CT scan but my surgeon took pictures of it and showed them to me. I was shocked as I didn’t know you could have branches. But my body is weird. I know a ultra sound specialist freaked out when she did an ultra sound of my right are as my brachial artery branches off. The doctor came in after her and apologized as she was just out of school. He said it is rare but not a problem. I copied and pasted the final diagnosis after surgery. The branches were actually on the left side but all my symptoms were on the right side… I’ll have to see if I can get a copy of the picture he took before he sent them of for pathology. next time I go. Unfortunately there must be a lot of people having problems after surgery. I went this week and I told him I had sent some referrals and he said he had 21 referral for Eagles recently.

Final Diagnosis

  • Benign bone with cartilagenous cap, consistent with styloid process
  • Negative for malignancy

B: Styloid process, left, excision

  • Benign bone with cartilagenous islands and marrow with trilineage hematopoiesis, consistent with styloid process
  • Negative for malignancy

C: Thyroid, right, lobectomy

  • Multinodular thyroid tissue with dominant hyperplastic nodule with cystic change (1.5 cm) and features consistent with prior FNA
  • Negative for malignancy

Gross Description

A. “Right styloid process”, and it consist of a 1.5 x 0.3 x 0.2 cm stem of bone that is submitted in A1, NTR following decalcification.

B. “Left styloid process”, and it consist of a 3.1 x 0.3 x 0.2 cm aggregate of two stems of bone that are submitted in B1, NTR following decalcification.

C. Labeled: Right thyroid, stitch marks superior pole

Type of specimen: Partial thyroidectomy

Size: 4.0 x 2.5 x 1.8 cm and weight: 7.5 g

Orientation: Stitch marks superior pole

Capsule-blue and isthmus margin-orange

Tumor location: Mid and inferior pole

Focality: Multifocal

Dominant tumor: Inferior pole

Tumor size: There is a 1.5 x 1.5 x 1.5 cm cyst along the inferior pole and at least three circumscribed, smooth, red-tan glistening nodules up to 1.0 cm greatest dimension. The cyst wall is 0.1 cm thick and the cyst is filled with a soft friable red-brown material.

Confinement/non-confinement: All nodules and cysts are confined

Distance of tumor to capsule/inked margins: The nodules and the cyst abut the capsule and the cyst is closest to the isthmus margin by 0.3 cm. The nodules are at least 1.5 cm from the isthmus margin.

Appearance of thyroid gland away from tumor: Spongy red-brown

Parathyroid (seen posteriorly): Not identified

Lymph nodes: No

Tissue bank: No

Block summary:
C1-C5-cyst submitted entirely with largest red-tan glistening nodule in C4

Thank you for your thorough reply, adriene61. It seems like a number of people who are diagnosed w/ ES also have some sort of thyroid issue as well. No one has found a link between the two but I’m thinking there is one. This would not be true for everyone, but at least for some of us. :thinking:

I’d love to see the picture of your branched styloid if you’re able to get it & are willing to post it here.

I’ll definitely get them the next time I go and post them. It was pretty wild. I didn’t expect that and it was weird that it was on the left said but all symptoms were on the right side.

1 Like

adriene61 ~
Your situation is a perfect example of crossover symptoms. I’ve said over & over on this forum…In cases of bilateral ES, where one side’s been removed, but symptoms haven’t subsided, it’s probably crossover symptoms which are very common. Thus, the remaining styloid is likely the cause of the continued symptoms. Getting the second styloid removed almost always fixes the problem. Since you had bilateral surgery in one fell swoop, you didn’t have to go through guessing which side was causing what symptoms. :wink:

1 Like