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Eagle Syndrome - Online Support Group

Newly Diagnosed After Brain Tumor & Many Other Symptoms

My name is Joy. I was just newly diagnosed less than a few months ago. In July 2017, I started having whooshing sound/pulsatile tinnitis. (Pulsatile tinnitis is different than regular tinnitis because it has to do with a blood flow issue.) I was sent to an ENT who sent me to an audiologist while somewhat dismissing my symptoms. To make a long story short, 3 months later I had an MRI in which they discovered a brain tumor on the right posterior fossa. I started going to Kaiser shortly after all this, and they referred me to a neurosurgeon/neuro-interventional radiologist. I had CT scans, MRIs, and a cerebral catheterization angiogram. At the time, they thought the tumor wasn’t causing my symptoms, but they couldn’t guarantee that. Either way, I had my brain tumor removed in October 2018 because it was growing too fast. A few months after my tumor was removed, the whooshing sound came back. I also started having regular tinnitis. I couldn’t bend over without having a pounding sensation in my head. I also couldn’t sleep in certain positions without waking up with a terrible headache. I was having terrible neck pain. I kept thinking that the symptoms were related to my recovery from brain tumor surgery. After many months of suffering and countless visits, my neurosurgeon decided to send me for more testing including a dynamic catheterization venogram and a CT scan of my neck. Behold! I’ve been diagnosed with Eagle Syndrome with internal jugular vein compression. Both my neurosurgeon and the neurosurgeon/interventional neuroradiologist all believe that the compression is causing intracranial hypertension and compressing some of my cranial nerves. I’ve had 2 “attacks” of suddenly having a massive burning sensation and trouble talking. I have a ton of other symptoms including numbness in parts of my face and elevated heart rate. I’ve had 2 “attacks” of possible Trigeminal “suicide headaches.” I’m on Gabapentin and Nortriptyline. I have been doing a little better with pain since being on the meds.

I am scheduled for surgery the second week of June barring any COVID-19 issue. My NS and an ENT surgeon will be performing the surgery together on both sides. My NS said that he does not want me to have the surgery through the mouth. He told me that there is a bigger risk of complications. They are going in through the side of my neck. He said the incision would be closer to the back of my ear. Either way, I don’t know a ton about my surgery. I will be talking with him more in the coming weeks hopefully.

I guess my questions would be the following:

  1. Should I have the surgery or try to live with my symptoms? I’m so scared that something will go wrong.
  2. I’m worried about recovery. What is recovery like? Brain surgery recovery was quite the trauma situation. My NS said the surgery will hopefully be performed on an outpatient basis.

I’m sure I could ask my NS these questions, but I feel like this is a better place to get answers from people who have been through this.

Thanks for reading my novel, and thanks for whatever insight you can provide. I’m really glad I found this website.

Joy

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Hi!
I had bilateral jugular compression from the styloids too, so understand some of your symptoms, although obvs not what you’ve been through with the brain tumour…
I would say firstly that definitely the surgery will be worth it! With jugular compression, it can cause Intracranial Hypertension- increased pressure in the brain- which can make you pretty ill. The only permanent treatment is to remove the styloids; sometimes doctors have suggested shunts to decrease the pressure in the brain, but this is not solving the problem & has risks itself. So best to get them removed!
With an experienced surgeon, risks of surgery are minimized, & hopefully then the recovery will be easier. It’s certainly easier thsn brain surgery I would think! It does vary alot between patients & surgical techniques, but generally expect to feel pretty rough for a couple of weeks, but this should gradually improve over the next month or so. There can be numbness to start with, & sometimes trouble with a crooked smile or tongue weakness for example due to nerves being stretched, but this should improve with time. Lots of people find that eating can be painful to start with, so we suggest you get prepared with soft foods & ingredients for smoothies etc. This usually improves over the 1st 2 weeks. Swelling can make symptoms worse, so sleeping semi-upright is a good idea, & have ice packs ready.
There are lots of discussions about what to expect, & members have posted their experiences, so you can have a search for them.
It sounds like you have a good team around you- has your surgeon done this surgery before? External surgery is safer & they can remove more of the styloid process, hopefully right back to skull base. Most surgeons in the US do the surgery as an outpatient, my only concern would be having both sides done at once & the swelling that can cause. Some members have had surgery succesfully like this, so recovery can be a bit tougher, but I guess you get it over with in one go!

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Hi JoyS,

A small addition to what Jules said - ask your surgeon(s) whether they will be placing a drain in the incisions to help reduce post op swelling or if they will Rx a course of Prednisone to help w/ post op swelling. Though icing your neck is helpful in addition to taking the Rxed pain meds, having some anti-inflammatory device will make a world of difference in the first week post op.

Having bilateral surgery is not recommended by the more experienced ES surgeons because of the amount of throat swelling that occurs in the first week after surgery. Swelling peaks at 3-5 days after surgery & w/ that comes increased pain during that time. Personally, going through surgery twice was worth it for me. I can’t imagine what recovery from bilateral surgery would have been like.

I agree that recovery from this surgery will be very different than from brain surgery. It should make a huge difference in how you’re feeling once you’re recovered.

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Thank you very much for all of this information. I will be scheduling an appt with my NS to talk about all of this. I never received Prednisone for my brain surgery. If I remember correctly, my NS and other NSs I saw during my recovery all said that they found that patients healed faster by not being on Prednisone. I think I remember him and others saying that Prednisone didn’t allow the body to do its own healing response and delayed the healing process. I’m definitely starting to question everything after everything that you and Jules have told me. I really appreciate your insight and advice. I’ll let you know what my NS says after I talk to him. Thank you so much!

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Hi Joy,

If they prefer not to Rx prednisone or use a drain tube, ask how they will help you manage post op throat swelling. That was probably the most uncomfy part of my recovery in the first week - the feeling that my throat was swelling closed. Prednisone made all the difference for me. I think Dr. Samji prescribes a course of 7 or 10 days so it’s pretty short duration. You will definitely need something to control that swelling if you have bilateral surgery so there is no risk to your ability to breathe.Bear in mind these doctors only do the surgery. They have never experienced the aftermath themselves.

There you go. Now you have more ammo for discussion.

Hi Joy,
Welcome to the group! What a complex situation you have. With all the appropriate disclaimers about not being a physician, the symptoms you are describing sure sound like they could be related to ES and are very similar to some of the things I have experienced. I could see the trigeminal symptoms being related to the tumor if it grew close enough to that nerve, but not the bilateral vascular compression. I did not have prednisone after external surgery and really didn’t need it, but I know others on here have really benefited so that is likely one of the many factors that varies among our doctors and us as patients. If it were me, I’d want to be asking what the doctors’ experience is with doing the bilateral procedure as opposed to doing the two sides several months apart, including what the increase is risk is related to such an extended surgical procedure. I would echo Isaiah’s comment that sometimes surgeons are less aware of what recovery is like.

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Thank you for this information. I really value your input. Like you said, doctors have not had this procedure done, so they don’t really know or can emphasize truly with what we go through when we have the surgery performed. I’m making thorough notes as to what I want to ask him about prior to my surgery. Once I talked with him, I will post back in this group. Thank you so much!

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Hey Joy,
I have to agree with ‘Oneless’, very complex situation.
You have been given some excellent information from some very knowledgeable and supportive members here. And I just LOVE this quote

Truer words have never been said. They can give you all of the theory in the world but just like your NS ‘They have never experienced the aftermath themselves’.

Merl from the Moderator Support Team

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Hi Joy,

I had the left styloid out in March the recovery is ok just ice it a lot! I’m 7 weeks out and still have a little facial drop and the high pressure symptoms are still there, but the pulsatile tinnitus is only on the remaining side so I need to have the other out likely. I would definitely have the surgery, anything else is a band aid. Good luck!

Swoo ~

I’m glad you’re recovering well. The remaining facial droop should continue to improve as the weeks pass & high pressure symptoms, if they persist, may well be alleviated when the other styloid is removed. Please keep us posted. We’re here for you.

To update you all, I’m scheduled for surgery on Wed., June 10th. I will be having both sides done at the same time. I am having 2 surgeons performing the surgery. One is my neurosurgeon who specializes in skull-based surgeries and the other is an ENT/Neurotologist who specializes in neurological conditions of the ear, related structures, and lateral skull base surgery. I feel like I’m in good hands. My neurosurgeon is not opposed to steroids, but he said we will see how my recovery goes. I also noticed that the incision area that he is making is not in the same area that I have seen in other pictures on this website. He told me that my incision will be near my ear and upper neck area. He pointed to the area somewhat behind the ear and extending down the neck. He told me that I would not need a drain tube. He said that the way they perform the surgery shouldn’t cause a large amount of swelling, but if there are issues, he will prescribe me steroids. Now that I have a date, I’m somewhat anxious. I just hope my issues go away, for the most part, after my healing takes place. The sad part about this surgery is that I won’t have anyone with me, not even my husband due to COVID-19. Now I realize that it could be worse. I could’ve lost my husband due to the virus, but it still is hard for me to wrap my head around the fact that I will be having this surgery by myself. I guess whether I kiss him before they wheel me away or before he drives away shouldn’t make a difference, but it does. I’m sure I’ll get through this. I will update you all with how I’m doing. I am so grateful for this website. I have read and learned so much. Thank you.

Hi JoyS!

It sounds like you’re in GREAT hands! That is an amazing doctor combination. The incision you mentioned sounds like the type Jules had. It’s called a facelift incision (though no facelifting is likely to occur). I do hope you don’t end up w/ swelling as projected by your doctor. Lack of swelling will definitely help you feel better sooner after surgery.

I’m sorry about your husband not being able to “see you off” into the OR but he will certainly be with you in spirit. Will you be staying in the hospital over night? I had my surgery outpatient so was able to go home w/in a few hrs. It will be so nice if/when the COVID-19 threat is past & our lives can resume some sense of normalcy again even if it’s not exactly as we once knew it.

I’m glad you’ve been helped by the information on our forum. We are here for you even after surgery to help answer your questions about recovery. I’ll put your surgical date on my calendar so I can pray for you that day.

:sunflower: :hugs:

Will be praying for you! Hope that all goes well, & I’m sure it will be difficult not having your husband with you, but be strong, & take heart in that you’re taking a positive step to getting your life back. He’ll be there to take care of you afterwards! Hugs to you…

Thank you! I’ll keep you all posted. I’m so grateful for this group.

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