Treating a Tumor: Agneta Sjofors and Skull Base

Agneta Sjofors
“This was in March 2012, I woke up one morning and my balance was off and I was holding at the door frames and I thought ‘uh oh this is not okay.’ So I went to the emergency and the doctor there thought maybe it would be a stroke so he said to be on the safe side he wanted to do a cat scan and he did and he came back a half an hour later and told me there was no stroke, but that I had a tumor…

That is devastating news…it was very very scary to get that news.

So he said it was difficult he didn’t know exact location so he wanted me to do an MRI pretty soon to locate the tumor and make sure the size and yeah, where it was exactly.

So we did that and during the time I did some research on the internet to find a doctor that didn’t do this traditional way or open up your skull and try to approach the tumor that way.

I have a friend who, with the same kind of tumor did it the traditional way in approaching the tumor and it was a bigger one and I don’t know the exact location of that one, but she ended up in a nursing home and now she has problem walking. This is three years ago.

She is still in the nursing home and she has problems with balance and speech and needs a walker. She can walk a little bit but she needs some support. It was complications with that surgery.

I just knew then that this is not something I was going to go through.
That made me make decision that there must be other alternatives, and that’s when I went on the internet and I found
Skull Base Institute and called them up.

So I looked up Dr. Shahinian and I though this is what I have to do. So I called Dr. Shahinian and made an appointment. He got the MRI and all the paperwork and told me that he was going to fix it. He was going to make the surgery.

He did in May so it went pretty quickly. The tumor was on top of the pituitary gland and it was pushing on the optic nerve and also on the blood flow to the brain.

That was the scariest thing to me. To know that my first thought when I got the news about this tumor was that I felt like ‘is it this it?’ But after I talked to Dr. Shahinian I knew there was hope. And he told me the procedure and how he was going to approach the tumor and go through the eyebrow.

So he managed to take it all out and he saved taste and smell and the pituitary I didn’t have. I had tunnel vision before the surgery and that was caused by the tumor and that I don’t have anymore.

It went very well. It was a success. He saved everything.

But I just realized I appreciate things more. I don’t take things for granted. It’s like, um, it feels good. I try to do as much as I can especially with my art. It’s no waiting.”

Hrayr Shahinian MD – Skull Base Institute

An Operation on Patient Agneta Sofors

“Agneta just like many patients, I mean I’ve treated this pathology certainly more than a thousand times….had a meningioma. This is a very common tumor, one of the more common tumors about 10-15% of all brain tumors are meningioma’s. They are usually benign but they can be anywhere in the brain in the cranial cavity, inside the head.
And she came to me, this is the same type of tumor. People relate to sort of celebrities who had this tumor, this is the same tumor that Sheryl crow has and it’s the same tumor that Elizabeth Taylor had…so it’s a meningioma.

She came to me with this problem and uh her meningioma was in a fairly difficult location because as you can see from the MRIs it was sitting underneath the frontal lobe, over the optic nerve, underneath the optic nerve is the vision nerve. Underneath the smell and taste and nerve and on top of the pituitary gland which is the master gland that controls all of the other glands in the body, the adrenals the thyroid the ovaries in women, so it was in a very difficult location and on top of that it is surrounded on either side by the internal carotid arteries which as you know take the blood from the heart to the brain.

So we were in a difficult box so to speak at the bottom or….sitting…where the brain is setting on top in a very difficult location and her symptoms when she presented was tunnel vision. Because of the optic nerve, the tumor was pressing on the vision nerve, she also had heightened sense of smell and taste again because the tumor was compressing the smell and taste nerve, what we call the olfactory nerve.

Those were her symptoms, and headaches. That’s how she presented.

Unlike the malignant brain tumors which metastasize or spread, benign brain tumors can also kill. They can be fatal by compression because they are compressing on vital structures. So, just because a brain tumor is benign, does not mean it is not lethal. In fact, a lot of these tumors, can be lethal.

Depending on the location in the brain sometimes, if they’re in the back of the brain they can affect hearing. In this case it was underneath the brain, so it was affecting her vision, her sense of smell and was giving her headaches.

Our approach has been different for the last, almost two decades, in the sense that we have gone away from the traditional craniotomy, which is the traditional way these tumors are done.

I would say today 98% of surgeons in the United States and in the world take these tumors out through the traditional craniotomy. Which is basically making a large cuts in the scalp, bringing either the face down or the side of the scalp down, then making a large hole in the skull using metal retractors to push the brain aside in order to get down underneath the brain and take out the tumor.

So our method differs because we use endoscopy, basically fiber optic technology whereby we use very small openings, in this case, you cannot even see where we went in through. In fact, I get calls from radiologist all the time saying they’re looking at the before and after, same thing happened with Agneta by the way, the radiologist called me and said ‘okay I see the tumor is gone, but how did you do it?’

Because they could not see on the MRI where we went in from, and I think today you could not see, with your big lens, where the incision is.

Well in Agneta’s case, the incision is inside the hair of the eyebrow. So, the hair covers it up and you cannot see the incision and, we do it that way by making a tiny opening. Literally the size of a dime or less. We put the fiber optic in and do the surgery without touching the brain by looking at a high definition Blu-ray, 1080p, resolution monitor. Doing it sort of like… almost like a video game.

Basically, where we are looking at the display and we are taking out the tumor that way through a tiny opening using custom instruments and custom technology that is basically tailored to this procedure.

It is, if you would like to make an analogy, again patients, or people sort of do well with analogies, it’s sort of almost like arthroscopic knee surgery versus open knee surgery or open abdominal surgery versus laparoscopic let’s say gallbladder surgery. I mean, it is really sort of minimally invasive and it is a big difference because the complications are less, the hospitalization time is less, the surgery time is less and most importantly in this situation is that with these techniques we do not manipulate the brain. And I always say this—the reason why these procedures are so successful is because we are in and out without the brain knowing we were there.

That’s the key. The human brain does not like to be manipulated. And we are going in and out without manipulating the brain. And that’s the big advantage.

It’s not just the fact the bravado of not finding the incision or where we went in from or how small the opening is or how small the scar is. That’s nice, that’s you know aesthetics.

But the main advantage is like you said instead of making big openings in the skull, manipulating, pushing the brain putting retractors to push the brain to get to the tumor, we are doing it by navigating around the brain going directly to the tumor and taking it out.

You know first you have the idea, obviously, and the vision. Then, you decide to if you are in a large institution you go through an IRB process, institutional review board, to present the idea.

After that you do animal studies, in this case we operated on pigs, this is all in a span of 20 years, I have to emphasize that, this is my life’s work, it’s not like I woke up one day and decided ‘oh well I’m going to change the way we do things no it takes, it is a methodical way of first getting some kind of a protocol in place, like you said. Then doing animal studies, seeing what is required then customizing instruments. You have to modify the instruments. You cannot do this work with traditional instruments, those are too bulky. So you customize instruments. I can tell you that I’ve traveled to japan and Germany to talk to engineers to design instruments. Then you get approval to do one case and then three cases and then 15 cases and then it takes off and to date we have done more than 6,000 of these cases, endoscopic brain procedures and that’s all we do, all we do is endoscopic brain and skull based surgery.

So we have over the years, accumulated a significant experience in the field.

I’ve been working with NASA Jet Propulsion Laboratory now for approximately 6 ½-7 years. It’s a very interesting collaboration with multiple patents and uh, new technology. The technology revolves around two things. First, 3d technology because when you convert from open brain to endoscopic brain which is what we have been doing for almost 20 years, you gain a lot. You have a high definition panoramic type of viewing but you lose depth perception because as you know the display is flat, and you lose a certain sense of depth. And going from there to 3D gives you that depth perception back. The other thing you lose is tactile feedback. It’s one thing to touch structures with your hands versus doing it endoscopically, you lose some of the tactile feedback.

Additionally, we, even though they are custom instruments, work with instruments that do specific functions. But, we are moving now towards smart instruments—that is instruments themselves can see. So the technology is based on 3d imaging, real time, in high definition. So it is a 3D, HD camera that is less than 4 millimeters which is the smallest such camera in the world, currently… and in addition to that a line of instruments that also have 3d or 2d imagining associated with them. So this will provide the surgeon with an environment that has tactile feedback that has depth perception that sees in HD and 3D.

Agneta’s prognosis, I’m happy to say, is fabulous. She is a lovely woman, she has lots of interests including biking and painting and I am absolutely delighted that her symptoms are all completely gone.

She’s leading a full life, she’s very happy and uh she has made me very happy because it tells me that have done a good job.

Ironically, and really sadly and she may have mentioned this to you, the same time that Agneta had the procedure, her procedure done our way, endoscopicaly, she had a very close friend of hers that she visits today, she told me regularly who had it done the traditional way and unfortunately she is a 55 year old, attractive woman who is currently in a nursing home. And her life has been devastated. And as happy as I am about Agneta, every time I see her it brings back that connection.

And that’s very sad that two different people with the same diagnosis, they both had meningioma’s, unfortunately one was done the traditional way and one was done endoscopically and we have seen this over and over and over. Over the years these patients do extremely well, they’re in the hospital for virtually 48 hours, instead of a week in the intensive care unit, then a week or ten days on the floor and then rehabilitation. Sometimes, unfortunately like in this case, with complications a nursing home for the rest of their life. So it does make a big difference to do things this way in a minimally invasive fashion. The complication rates have plummeted, the duration of hospitalization and surgery has shrunk and these patients are leading normal lives, great lives, just like Agneta.

So I think her prognosis is fantastic. I mean, we’re going to follow her for a total of 5-6 years which is what we do with every tumor. But, I expect her to, to be perfect.

People tend to think that this technology is only good for a certain size tumor or that it works only in adults but not work in pediatrics.

Well, I’m happy to report that this technology, or this technique, works great with pediatric cases because as you know in peds, everything is smaller and we are using very small tools so it works very well with children.

There is no size limitation. I have taken out tumors that are 6, 7 and in one case 8 centimeters out with this technology. So the size of the tumor does not matter, because whether you are doing it open, the traditional way or endoscopic this way, you are still taking the tumor out piece meal.

You do not go in and take out the tumor all in one piece, you take it out a little bit at a time. So the endoscope does not limit your ability to do this work, any size tumor can be taken out this way.