Hat Lady Nicole

My Health Journey and the Hats I Wear - Navigating Chronic Illness with Style

ENT Surgeon Appointment

Don and I met with Dr. Alex Bien, a highly-recommended Ear/Nose/Throat doctor with a specialty in middle ear surgery. Much of the appointment was spent going over my medical history in detail (that’s the majority of what I cut from the video, to avoid repetition), as Dr. Bien is very thorough, which Don and I greatly appreciated. After this appointment, I feel even more confident about my surgical team and look forward to the day that I no longer have this tumor in my skull! 

Additional Video details

NOTE: Yes, this is a long video (the appointment was about an hour long, so 20 minutes isn’t too bad for a detailed video). If you want a summary, look for the purple pop-ups on the YouTube video as a guide. However, if you want to understand more of what’s going on, please watch the whole video or read the transcript below. 

For patients who want to know what could be discussed at a pre-operative appointment like this, I’ve kept most of the appointment talk in the video. I truly hope you are able to find doctors as personable and helpful as Dr. Bien!

Video Transcript of ENT Surgeon appointment

Dr. Bien: A couple more torture tests and then we’ll be done. [Nicole’s note: I LOVE how laid-back Dr. Bien is, joking around] I’m gonna hit this on my knee and I’m gonna put it on your nose and I want you to tell me if you hear it louder in the left ear or the right ear… or about the same.

Nicole: Okay. Maybe a little louder in the right ear.   

Bien: Which is louder: Number one or number two? 

Nicole: Two.

Bien: Louder on one ear or about the same?

Nicole: About the same.

Bien: Look straight ahead, same thing with this. Number one or number two?

Nicole: Number two is much louder.

Bien: I don’t have to ask, I can tell by your face.

Nicole: [laughs] That’s the fun with fibro — everything’s much more sensitive. 

Bien: What we see on the CT scan is it looks like this kind of vascular what we call a hemangioma and it has remodeled bones sort of above your ear. This part of the skull is called a temporal bone and that temporal bone houses the structures of the inner ear and the middle ear. That’s where Dr. Dunn wanted my expertise in terms of helping to get the tumor out from around those structures. 

I don’t see on the MRI and it’s a little bit more difficult to tell on the MRI than it will be on the CT scan, but it’s a little bit difficult to tell whether it involves the middle ear. I don’t think it involves the middle ear. It doesn’t look like it does. On exam I can’t see anything. It could involve the very very top of the middle ear and if that’s the case then you know we’ll have to delicately get it off of the ear bones. 

The other thing is it does look like it involves some of the mastoid air cells which are kind of behind the ear but it doesn’t involve the ear canal. When I look in the ear canal–like if I didn’t know you I just looked in your ear and I didn’t know you have this thing I’d probably say it looks normal–but because I know that this thing is there it  looks like the top part of the ear canal is maybe just a little bit full. It just looks like it might be sagging just a little bit but it [the tumor] certainly doesn’t enter the ear canal or involve the skin of the ear canal or anything like that. 

So my role I think in the surgery–Dr. Dunn and I haven’t sat down and looked at the scans together; we usually do before we do these joint surgeries–but we will. I suspect he’s going to want to take what we call a trans-temporal approach, where he goes through this way and he wants to get a prefabricated implant because he’s gonna have to remove some of that bone to put a prefabricated implant in there to rebuild that contour of your skull where that bone is going to be missing after the surgery. And again my role will be to drill out the mastoid bone–any of that bone of the mastoid [that is affected] and also help to get the tumor off of those middle ear bones and up out of the middle ear if it does involve it. Like I said though it certainly doesn’t look like on exam that it involves it–it’s a little bit difficult to tell–but then the CT scan will help me in that regard so that’s why I definitely want to add special cuts on to the CT scan.

Nicole: I believe the CT scan is this week.

Bien: The reason I ask about your hearing is some people can feel like they have a hearing loss even though they don’t. Your hearing is normal, it looks good. Do you have any questions for me or what questions of yours can I try to answer for you?

Don and Nicole: You’ve already answered a lot of mine. Yeah.

Bien: Well, that was easy. If you think of anything please write it down. I always see my patients before we go back to the operating room so you can ask me last minute things. Do you have another follow up with Dr. Dunn? 

Nicole: He’s supposed to give us a call–we had a 9am meeting scheduled but I think he had surgery–and go over the results of the MRI. 

Bien: Oh so you haven’t yet–the MRI was just on the 22nd, last Thursday, you haven’t had a chance to talk to him after that was done. 

Nicole: No. 

Bien: So he was looking at the CT scans [before]

Nicole: Uh-huh that’s right the original CT scans.

Don: Well, I’m not surprised the resident ran off with the CD of CT scans. When we were at the meeting with Dr. Tiwana, I told Nicole she was likely to become a case study. He just kind of grinned. [everyone laughs]

Nicole: Yeah. Well as much as I am into education and educating others, it’s a good fit. You know, if you’ve got to have a tumor then [why not use it to teach other doctors] 

Bien: …and one that no one else has…

Nicole: Yup

Bien: I need to get together with Dr. Dunn and we’ll talk a little bit more about our specific approach and the incisions and so forth.  I would imagine that you’re going to have an incision that probably will start behind the ear and probably come up like this in some fashion, there may be–especially for the TMJ part of it–some part of the incision that goes here in front of the ear and come up like this and do like a question mark–a reverse question mark incision–and so it may look something like that. 

We’ll try not to shave much hair but sometimes we do have to shave a little bit. Usually if we do, we lift up the hair and shave underneath of it so then after surgery the hair will fall back down and cover it up. You won’t be missing half your hair, it’s less. 

The risks of surgery are just like with any surgery: bleeding, infection, the risks of the general anesthetic. Specific to my part of the procedure, there’s always the risk to the ear bones which would mean that there’s a risk to the hearing. I know you’ve had a ringing in your ears for a long time but there’s a small risk that ringing could get worse. I don’t say these things to scare you but unfortunately anytime we do surgery there are risks. This happens very rarely but I just wouldn’t be doing my job if I didn’t tell you [the risks]. So worsened ringing in the ears, worsened balance–I don’t think that’s gonna be an issue just because we’re really not gonna be in and around the balance structures as far as the intracranial part of things, which Dr. Dunn and I will do together.

There’s always the risk of CSF leaks (cerebrospinal fluid leak), meningitis comes along with that, stroke, and then the bad D word–death. This tumor does not really involve the brain. It’s not IN the brain, it’s on top of the brain and pushing it. We’re not gonna really be in the substance of the brain we’re gonna be on the outside of it so that a lot of those risks don’t super apply to you. 

Don: One of the reasons why Dr. Dunn wanted to do the MRI was to verify that it wasn’t somehow tapping into the brain. 

Bien: I haven’t seen the CT scan but I have seen the MRI, so I was able to look at the MRI. It doesn’t look like it goes directly into the brain just on the outside. The risk that all this heals up, that you don’t like the way things look, we call that a less-than-desirable cosmetic outcome. With your hairstyle though you honestly would never see it.

Nicole: Not worried about that.

Bien: Trying to think of anything else from my standpoint. I’m covering a lot of Dr. Dunn’s part of it too, but I think you know this is obviously an unusual–certainly isn’t a straightforward kind of thing– but Dr. Dunn and I are both very particular and we plan things out. We do a lot of cases together, we work well together, and we always have a game plan going into things and we’ll do the same with you, and take the very best care of you.

Nicole: Appreciate it and that’s exactly why we’re going with the two of you.

Bien: Well thank you.

Nicole: We’ve heard really good things…

Bien: Don’t believe some of the things, don’t believe everything [everyone laughs] good stuff yes. We’re both very particular and we’ll have a good game plan. 

I don’t know what the doc with the oral surgeon’s role [Dr. Tiwana] is gonna be. I’m sure he’ll be there for parts of the procedure. I plan on probably being there for most of it and be there to help Dr. Dunn however he needs me to help. 

I think the goal of this is to get it all out–

Nicole: Yes

Bien: We don’t want to leave some little bit behind because if we do leave some of it behind then there’s a risk that it can come back. We certainly don’t want to have to go back if we don’t have to.

Nicole: yeah

Bien: I will say there’s an outside chance and I say outside outside outside chance that if we have to–I think this is a miniscule tiny little chance–that we may have to close off the ear canal. You would no longer have an ear canal, we would close it off, so if you looked in your ear you wouldn’t see any air canal, it’d just be a blind pouch of skin. I can’t just close it [the ear canal] off and leave all this skin. That skin will proliferate. When Dr. Dunn and I are planning things before surgery, if I feel like it’s more than a minuscule risk I will let you know. What that would involve is taking out your drum and the first two ear bones and closing off the ear canal. 

What would that mean for you? You’re not going to miss your ear canal but what it would mean is that you would have a maximal conductive hearing loss. Sound normally comes in through the external ear, hits the eardrum, vibrates the three bones of hearing, and then goes to the inner ear the hearing portion of the inner ear, and then along the nerves to the brain. If that’s the case we could always rehabilitate your hearing with something called a bone anchored hearing aid where we would put that little post back here behind your ear and what that would do is basically bypass the whole ear canal in the ear bones and just stimulate the inner ear directly by vibrating the bone of the skull. Again I say this to you because I’d rather broach the subject and have the conversation now as opposed to the morning of surgery or when you wake up and have your ear canal closed and say what’s up man, why can I not hear or have to go out in the waiting room to explain to you [looking at Don] and then you feel bad about saying ‘yes do it’ without having her permission. I’m always trying to plan one step beyond what I think we’re gonna need to do just so that you know. 

Don: I’m guessing when you say minuscule, you’re talking low single digits…

Bien: I’m talking about less than 1 percent. The only reason that I would have to do that is if the tumor has eroded this bone to the point where we can’t get the tumor out without violating the skin of the ear canal, then we have to close it off, because that would mean that the brain and the cerebral spinal fluid would be communicating with the ear canal and we obviously can’t have that. So we would have to close that off so that it encapsulates and isolates that spinal fluid space and the brain space from the outside world. That’s an outside possibility and unfortunately that’s going to be a bit of a game-time decision but I’ll be able to get a little bit better idea of that from the CT scan.

Nicole: Good to know. Any idea on approximate timing, like a month, two months?

Bien: I’m thinking hopefully maybe end of September beginning of October that’s what I’m shooting for. [Nov. 14 ended up being the date that all three doctors were available] If you guys had a trip planned or you have a wedding to go to or something I don’t think this is an emergency. Let’s say you had three weddings you were in and you had a trip to the Bahamas planned–I’d say wait until you get back.

[Don and Nicole shake heads–no trips or weddings to attend.]

Bien dictation of visit summary: We discussed the nature of your tumor today and my role and the surgery that I will be doing in conjunction with Dr. Dunn and with oral surgery. My role is primarily to work in and around the ear structures including the mastoid and the middle ear bones, if necessary. We discussed the very outside chance that we may have to close off your ear canal. This would give you maximal conductive hearing loss. We discussed the risks and benefits of surgery. In terms of time in the hospital, probably say a day maybe two days in the ICU, probably just one day, then get to the floor, get you up, get you walking around blood flowing. Once your pain is controlled, you’re eating, peeing, get you out of there.

Nicole: Is there gonna be any problem with me doing medical marijuana as my pain meds? 

[Post-Craniotomy note to other patients: disclose to doctor and anesthesiologist ALL supplements and natural remedies, including medical cannabis and CBD, as they can increase your need for more anesthetic. I was NOT allowed to have medical cannabis, including edibles, in the NICU even though Oklahoma allows medical marijuana use for registered patients like me…and I discovered that my body doesn’t correctly metabolize opioids into a usable form (there’s evidence that cannabis use can reduce the effectiveness as well), so I was in terrible pain at the hospital for days, to the point of having dangerously high blood pressure due to pain]

Bien: I don’t think so, once you get home. Unfortunately, not allowed at the hospital.

Nicole: How about before surgery? Is there any kind of contraindication?

Bien: That’s a good question. I think you’ll need to talk with the anesthesiologist about it–you’ll probably meet with them before surgery. I think in general they’d like for you to refrain from it for at least a week or two [Nicole blanches at this, as current pain levels from fibromyalgia and the tumor pressure were being mitigated by edibles] so you get it all out of your system. But check with them, ask them about it–they’ll be able to give you a more scientific answer as to why, but I think it can crossover with some of the receptors that general anesthetic and pain medication try to target. It can decrease the ability of those medications to work and significantly increase the dose of those medications that they give and therefore can increase the side effects of the medications they have to give. They have to give a much higher dose than would normally be needed.

What do you use it for right now, primarily just the pain, the TMJ pain that you have?

Nicole: That and the fibro pain, sleep. It’s the only way I can really sleep [due to current pain and pressure]. 

Bien: Wow so do you use it every night then or every day?

Nicole: Every day.

Bien: All right. What do you take for your fibromyalgia in terms of medications or anything?

Nicole: I’m on Zoloft and birth control–those are the only two medications I’m on right now other than medical marijuana. I used to be on several things, including for trying to get me to sleep. Yeah, none of that other stuff worked. The gabapentin did help with the pain but at one point we’ve considered potentially having kids and so I knew I would have to go off that so went ahead and got off. That’s when I started trying medical marijuana to see if it was of any use and it’s amazing.

Bien: Good. Well I’m glad you found relief with that. 

Nicole: Another thing to bring up – I don’t know if it has actually manifested into this yet or not but in my DNA I do have the jak2 mutation that my mother’s mom had. Hers turned into polycythemia vera so just wanted to get that across because I know it’s a bleeding disorder and want to make sure everybody is aware. 

Bien:  I mean we’ll do bloodwork before surgery. 

Nicole: okay

Bien: That’s good to know… at least we can be on the lookout for that on your preoperative bloodwork and I’d definitely let you know, let anesthesia know about that. If your red blood cells were super elevated we’d see that on a pre-op. Have you ever had any indication that you’ve had anything in that regard?

Nicole: No, not as far as I know.

Bien: I have added a special CT scan on to the CT scan that you are already getting this week. Dr. Dunn and I will discuss our surgical approach and timing for surgery and we’ll notify you of the surgery date. Follow up with Dr. Bien approximately two weeks after surgery.

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