Vascular/Jugular Eagle Syndrome

I am dealing with horrible intracranial hypertension. I also started getting unusually oily facial skin around 2018. I had never had skin issues till now. I was wondering if anyone else suffers with unusually oily skin along with their IH?

@CONATIVE

Interestingly I have noticed a fluctuation with waking up having noticeably increased oily/moist facial skin in relation to both high and very low intracranial pressure. It congregates at my forehead/brow and around my nose. It is not something I ever asked about but have had the cycle enough that it seems related.

Your surgery date is coming soon I think, is it still on?

Hi! I’m still on for December 2nd at PSL. Cross our fingers. I have thought a lot about you and hoping you are doing better. :blossom:

I get a lot of fluid retention in my face and forehead and by the end of day I have a layer of grease on my face and when I wake up in the morning. This has caused sebaceous hyperplasia in areas. This is new to me since 2018.

Wednesday - hooray!!! It is my understanding the Denver hospitals are trying very hard to keep elective surgeries going albeit on a slightly smaller scale. Hepworth has good priority at PSL given the nature of this surgery so as long as you and he keep COVID free it should go off, just maybe not have an overnight stay :crossed_fingers: with you.

I do think there is a direct connection. That was always too far down the list of questions to get to in a appointment but should you ask him I would be curious to know what he says!

Sending you and Hepworth everything good for the 2nd :pray:

Thank you! My husband and I are so thankful for Hepworth. This has been so hard on us because it took so long to figure out what was going on. Nobody could physically see from the outside what was going on with me except that I didn’t look quite right. It’s been heavy on my mind how I possibly thank the doctors who have hung in there with me And have wanted to help. Keeping Hepworth and his family in my prayers and appreciate him wanting to help during such a difficult and unknown time. Thank you for your prayers :two_hearts: I’ll keep you posted when I learn more about the skin issue :blush: keep us posted on your health too. Sending warm hugs your way

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Not long now! Will be praying for you!
No idea about the skin issue, didn’t have it myself…it wouldn’t be a side effect of the medication would it, or did it start before you were on meds?

Hi Jules! Thank you!! Means a lot to have this supportive community. I think it started when I started retaining fluid. My doctor did mention with this type of eagles fluid retention happens. I’m hoping to get some relief after my surgery but I know it’s a process. I definitely had it before the medicine but started when my head symptoms were getting worse.

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Hi CONATIVE,

Thx for the surgery date reminder. It’s on my calendar now. Will also be praying for you & Dr. Hepworth - good health & a perfect surgery. :hugs:

Hi there! Thank you so much! I can’t really thank you all enough. It means the world to me. Thank you for thinking of me :blossom:

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Best of luck with your surgery Conative.
Soon this will all be in the rear view mirror. :hugs:

Good luck with surgery :pray:t3::heart:

Thank you for reaching out! I appreciate you very much :two_hearts:

Hi! Thank you so much! Have a great day :blossom:

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Hi @CONATIVE I am a fellow Coloradan and also patient of Dr. Hepworth’s. I hope your surgery went well!! Thinking of you!

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Hi Blossom! Thank you for reaching out to me! That helps to know you are also here and see the same doc. He is a very good doctor and person and I feel blessed to have him. I think everything went well… my post op is weds with a nurse so hoping to get enough info as possible. I have some numbness in my neck, ear, face and some lip drooping when smiling. Definitely pain and also at the back of my neck. Sphenoid sinus is rough the last two days. Had a very hard day yesterday. Trying to ice and stay elevated. The pulsatile tinnitus went completely away on my right side but then Sunday night it was back very lightly so that scared me. I don’t want to go back to IH. Still get some left sided pulsatile tinnitus but overall the right is amazingly better. Did you have one or both sides done? Any dilating or stenting at anytime? How are you doing? Sorry for all the questions.

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Glad you are doing well! I haven’t had surgery yet but all of that sounds very normal from what I have read here. I have been seeing Dr. H since April. I had a ct, ultrasound, angiogram and am on a blood thinner and muscle relaxer. The meds have basically eliminated my pain (amazing!!!) but he does not want me on them long term. My next appt is New Year’s Eve and I am supposed to be getting an injection in my jaw and discuss surgery to remove the styloid. There is vascular involvement with eagles but my head pressures were only slightly elevated based on the angio. I am sending you healing vibes and some good info at your appt Wednesday! Keep us updated.

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Hi CONATIVE,

The return of symptoms that are absent immediately post op is not unusual during the first several weeks of recovery. This happens because you’re given a strong anti-inflammatory (usually epinephrine) during surgery which also keeps bleeding at bay. The epinephrine helps reduce post op swelling for a couple of days after surgery but then the body takes over & surrounds the injured area w/ fluid to protect it. That in turn applies pressure to the tissues that were “pressure free” immediately post op & TA DA! symptoms return for a bit until the post op swelling subsides. This can take several weeks to months.

Pain helps reduce our desire to be active immediately post op, but as the pain starts disappearing & we feel better, it’s really easy to want to jump back into life w/ gusto. Be cautious & start back into your regular routine w/ baby steps. Going too quickly back into activities can cause symptoms to flare which is both painful & discouraging. Healing from ES surgery is a 3 steps forward/2 steps back proposition as nerves & other soft tissues work to recover. You’ll have good days followed by harder days then good days again. Eventually, the good days win.

If you have bilateral ES, you may begin to feel symptoms from the remaining styloid more as you heal from your first styloidectomy. Please know those symptoms don’t mean the first surgery didn’t work but are your body’s notification that there’s still a long pointy object in your neck that is causing trouble. Been there & experienced that myself.

Sending you a hug, prayers & encouragement. So glad you’ve jumped a big hurdle having both ES & a sinus surgery behind you now.

:blush: :hugs: :pray:t3:

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Hi Blossom,
I’m glad the medication is helping with the pain. That’s a huge help! Thank you for all your warm words and please keep us posted on your road to recovery too. I want you to feel better! :smiling_face_with_three_hearts:

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Hi Isaiah,
This is helpful to hear. I am so thankful to have a team of people who can help me navigate this process. I do have bilateral as well so something else to keep in mind. I will watch my activities and be careful to slow down. Like others, this is hard for me to do. This too shall pass. Thank you! :blossom:

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Isaiah’s said it all really, just wanted to add in my hugs & prayers for you too! Take care of yourself :pray: :bouquet: :hugs:

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