Chronic Pain Chronicles with Dr Karmy
Join Dr. Grigory Karmy M.D., a distinguished chronic pain management physician with over 20 years of experience, on a captivating journey through the world of pain relief in his podcast series. Delving into the latest regenerative medical treatments like PRP, stem cell injections, and prolozone therapy, alongside educational discussions on pain transmission and various medical options, Dr. Karmy shares invaluable insights and real-life stories, empowering listeners to find relief and regain control over their chronic pain.
Chronic Pain Chronicles with Dr Karmy
Episode 14: Why Won't My Earache Go Away? One Patient's Experience of Trying to Deal with a Rare Chronic Pain Disorder
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Most of us have experience with earaches, either in our children or sometimes through personal experience. Although the pain is severe, it does resolve in a few days.
What if the pain never went away?
Join Dr Karmy for an interview with a clinic patient who has a very unusual chronic pain condition. In this interview, we discuss how our patient found a path forward both emotionally and medically and what lessons can be learned from her experience.
One of the first resources Savitri tried to help manage her pain was an online course recommended by her physiotherapist called: The Pain Truth
The courses they provide perspectives from pain sufferers with different diagnoses. It's a resource to help move through the helpless cycle chronic pain sufferers feel and helps foster the feeling of "taking charge" of one's life while coming to terms with accepting the new reality.
The program can be accessed with the following link: https://www.thepaintruth.org/
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There are some strategies that have been proven to be very helpful with being a part of nature and sometimes surrounding yourself with people, and if not, take that walk, time yourself, just get it done, create a checklist, complete the checklist, whether it's daily, weekly, monthly, whatever suits your needs, and you will start seeing differences, and that will attract you to do those things more but only when I started to listen and try recommendations from other chronic sufferers and using the resources to read as much as I can, I really started seeing some sort of a difference with how I was feeling about my day to day life. My pain wasn't going away, my pain did not go away, but I did have a sense of happiness in other ways,
Dr Karmy:Hello, this is Dr. Karmy for Chronic Pain Chronicles, and in this episode I wanted to bring in a clinic patient. Just because I feel that, her story is fascinating and also it touches on many of the themes that are relevant to patients in general with chronic pain. So today's patient is Savitri. Hello.
Savitri:Hi there.
Dr Karmy:Thank you for joining us. Savitri and one of the reasons I brought her on the podcast has a very unique and unusual chronic pain condition. And so let's maybe start from the beginning. How and when did your problem start?
Savitri:I would say maybe four or five years ago I noticed that my, like migraines got worse and I couldn't differentiate if I was getting headaches with migraines. And I started to get more defined pain on the right side of my head and my face. And then I would start taking just over the counter medication, Tylenol, Ibuprofen and just alternating those meds. Then, as the years went by the dosage, I would up. At some point in the last, I would say, three years, I was taking about two 400 milligrams of ibuprofen per day just to get out of bed to function. And I noticed that at some point, it wouldn't help with the pain that I wanted to subside and that would be things like not just a headache on the right side or my migraine, it would be ear stabbing. It was a very significant pain in my right ear. It would then spread to my neck and my shoulders and my ribcages right down to my hips and my knees down to my ankles. And anything in between. So I continued taking ibuprofen and Tylenol but it didn't, it seemed to help me function somewhat, but with life family, work, things like that. You just continue pushing through. And then your meds become a schedule. Your pain becomes a schedule, work and life itself becomes a schedule. But the pain at one point became very unbearable. I would change things like trying to get to bed a little earlier, changing my diet. But unfortunately at one point in time I had a problem walking properly. So I was limping a lot. And I felt as though. Everything on the right side of me from head to toe was almost seizing up. My muscles were very tight, the pain was excruciating, I felt very bruised and my limb kept on getting worse. So I did eventually go to the hospital. My symptoms mirrored that of a stroke patient at first because my face, my speech was very droopy on one side as well. I couldn't feel my arm very well, but there was throbbing pain. After doing some testing and spending some time at the hospital we were able to rule that out and I was sent home with recommendations for nerve medication. Same nerve medication that's used for, as an antidepressant, I would say. So I started a list of medications one at a time to see if it would help with nerves, whether it be on the right side of my body versus my head. Unfortunately, the, medications that I was on, it just has side effects, and I wasn't really taking well to them, so every time I took a new med, upped the dosage to a certain amount, I'd have to detox off of it before I started another med. That, to me, was the most challenging in the cycle at first.
Dr Karmy:So let's maybe back up a little bit. So it sounded like initially it started like a typical migraines.
Savitri:That's right.
Dr Karmy:And there was very excruciating shooting pains came later on.
Savitri:That's correct.
Dr Karmy:So, what is the span of time from the time it was just irritating, a nuisance, that you take an Advil and it goes away to the time that it actually became quite severe and started to impact your life?
Savitri:I think with it, I would sum it up within a five year period. It was only in the last three years, I was really recognizing the impact to my day to day life.
Dr Karmy:And I guess there was a concern about a stroke that was how many years ago?
Savitri:That would have been about two and a half years.
Dr Karmy:So there's also impact on your job, right? I guess at one point you had to stop working.
Savitri:I did. So that was about two, just over two years now, I stopped working and I, at home I noticed things like I would, talk to the kids or my family and I would notice the stutter in my sentences and my voice. I would notice that I was forgetting what I was saying or what I was ending my sentence with. I would forget basic words like parking lot and things like that. To my family, it, I think they adapted to me like that. And then one year with my review at work, my performance review I did get a comment from my reporting manager about, a difference in my language. And I've never seen that before. And it actually stood out to me and because it's something that I've noticed. So I think that's when I started to pay more and more attention and try different techniques like, reading aloud more often at home, thinking that it's maybe something verbally that I could enhance. But I knew it. inside that with what I was feeling and experiencing with headaches and migraines, it was very hard to focus and concentrate. And I noticed that it was impacting me when I was reading, whether I was looking at what I was reading if I was speaking, having a conversation just like this one, and even talking to my children.
Dr Karmy:So, you touched on some of these things, so I guess the question is how does life change once the pain becomes more severe? What are some of the things that change? Yeah, more difficult.
Savitri:I would say which was very new to me function wise, I think that we're capable to push through things, whether it's a, a challenge at work that we didn't expect, on a live call or, for rushing to work, getting late, we will find, different solutions on the spot. We, we adapt very easily. So I'm used to, as a mom, um, Pushing through different challenges at home, at work, things like that. This one was very, this was very different. I, I didn't have, I felt like I didn't have the energy, but it was more than energy. It was like the willpower to get through some of my days. I felt very stuck, very numb, very I didn't understand what was happening and, I didn't actually know what to do about it. Yeah, or explain it. It was really hard to explain in words. What was happening, right? Even to my doctor or family. It was very challenging.
Dr Karmy:So there is, obviously some anxiety about what's causing this. Absolutely. Especially if you do tests and nothing showing up. But obviously in the back of one's mind, things like stroke. Yes. Other horrible conditions come to mind. Exactly. Yeah. So there's this sort of uncertainty whether or not this will end and when. That's correct. Uh, could it lead to something more serious? Right. You know, a lot of patients of course are scared. Yes. Right. And unfortunately there isn't really a specific resolution date unlike a lot of other medical conditions like pneumonias or appendicitis. Even if you're sick with it, you know there's effects Exactly. Of what's wrong with it. Exactly. What's wrong? This is different. This is very open ended. So there's anxiety. You mentioned perceived dropping your performance, right? Absolutely. Not much energy.
Savitri:Yeah. Yeah. And anxiety is a real thing because one, there's a wait time to get testing done but I'm, I personally am a very pragmatic person I was anxious about getting the test done because I wanted it to happen today, today, today, and get the results today to make sure that there was nothing more severe happening. And although I think throughout testing, whether it's MRIs and ultrasounds and x rays and blood tests. It was great to have a good result, but over time it's, you almost want to have a result where you're finding something so you can, also understand what the solution is because, as time goes by you just, you start, feeling like there's no light at the end of the tunnel or what does this mean for me? How much longer is this going to continue?
Dr Karmy:And as you mentioned, and again, every patient with pain is honestly different, but as you mentioned, often, in addition to careers, it's one of those pervasive things that affects every aspect of a person's life. And people don't sleep as well. Often it will affect relationships with the rest of the family. For people who are outgoing, often they stopped going out and become quite isolated. Again, it's person to person difference. Often people will make up plans for, to go out with friends or whatever and have to cancel at the last minute. If it happens often enough friends will often feel slighted and feel that you're just not. And so especially people without families will often become quite isolated.To what extent?
Savitri:So, I wasn't, I was told that these are possibilities. I've done some quick surveys and tests with doctors and I realized that these are all options that may happen to me. But, I didn't really think it was true. No, I have control. I'm a happy mom. I'm planning things with my kids all the time. I'm making sure they're active, so I'm active. Things like that. But it does catch up with you. The cancellations of things that I would plan or commitments I made. Either I would have to cancel it or, If I attend, you can tell that I'm not myself. And then the questions would start and then the attention's on you and your pain and things like that. So I stopped committing to things. And I quickly started seeing and feeling all the things that I learned and heard about to be aware of, right? The isolation and that was a really tough time. Because I know that I was capable and I know these are things that I want to do, it's within my personality and, I have a family who I wouldn't say expects it but they, that's what they know me to be and to see this change, I think that's when it became more noticeable to them, but again, it wasn't something that you can clearly explain to children or, doesn't even matter, children, adults as well. Yes, we have friends who can be feel slighted, family members, extended elderly family members who have expectations that can feel slighted. And again, it's not something black and white that you can explain to everyone. That was really hard. And I think the biggest one of all was finding out that I was going through depression, through it all. And I didn't even, I did not recognize it because again, I'm a happy mom, happy family, loved my job. This couldn't happen to me, right? But I think we adapt to , hiding symptoms of depression without even realizing it. I do consider myself lucky because I was using resources like physiotherapy, psychotherapy, seeing yourself, Dr. Karmy, I was seeing a neurologist as well, so with the community of resources, at least they were able to provide me with different, tools and things that I can look into and try to help combat some of the not so nice symptons like anxiety and depression and things like that and instead of just depending on medication. So I found that reading whether it's audio or visual at times to learn more about pain management like through that course the pain truth and to focus on the small enjoyable things which technically are the big things, but that's what we are capable of, whether it's coffee, tea, a walk, the small things that we can do to feel some sort of enjoyment and learning to be more compassionate to yourself with pain and understanding it's a real thing and to be patient with yourself. That was a daily chore. It felt like a full time job to keep reminding yourself that this is real and what are the things that I can enjoy throughout the day, whether it's a bath, a walk, sitting in the sunlight, absorbing all those feelings, and taking a moment to feel compassion for yourself, for looking for that light at the end of the tunnel but also feeling comfortable to be open about what you are going through with the community that you have around you supporting you.
Dr Karmy:I guess another comment that I hear often is from other chronic pain patients is that how shall I put it? People do, a lot of acquaintances, friends, even family members are not really convinced that the pain is real. That's right. It's a genuine condition. Family members or or friends feel that they are exaggerating, they should toughen up, they should, Did you experience that or not really? What are your thoughts?
Savitri:No, I did, for sure. Some of it was a feeling of, I feel like I have to consistently explain myself because I had to remember that no one in my environment was used to seeing me like that I don't complain I don't express myself when I'm in pain. I know how to handle it. So it was very new for everybody and it was I found that I have to continuously remind everyone, but that in itself can feel like you are a broken record, and that alone can give you some anxiety or feel isolated and sad, you don't care, you don't remember, how do you not see what I'm going through things like that. I did go through those feelings, but at the same time, when I think about it, I didn't know it was a possibility for me to feel what I was feeling, I didn't know it was a possibility that I would be experiencing this in my life, and I did not understand why I was feeling this way, nor what the solution was, so I had to keep that perspective to understand that if someone isn't physically feeling what I'm feeling or seeing it how could they believe it? So in my home with my immediate family I think articles that I found where chronic pain sufferers were expressing themselves of what they were going through some who have found ways to adapt to it or feel better with their pain was really helpful. I would use different opportunities like if my kids had an ear infection they would understand how that's comparable to mom's pain. Little things like that. And I actually had to start doing some self reflection and education on my own to feel more confident about what I was going through and update my family and friends about what I am doing about it and how it's helping or maybe some things that's not helping. So change the conversation a little, right? Instead of you don't understand. You can't see, but you don't know what I'm going through, things like that. So as I got more educated I shared that education, but the hardest thing was for me to be okay to say to my family and friends, I need to sit down. I need a break. I just need a minute. To compose myself because I'm dealing with this right now, give me five minutes, whether we're on a walk, a hike, at the movies, whatever activity we're doing together, whatever I may have committed to or not committed to, whatever it is, I needed my environment to know that I have some coping mechanisms that I've put in place. I need to understand them. Is that something that we could that you could, one, understand two will this work for us all? So communication was very key.
Dr Karmy:Oh, so one of the things in general that I find interesting is that, as I said, a lot of chronic pain patients experience very similar problems. A lot of them feel that they're unique in their experience and nobody else experienced the same problems, although in chronic pain clinic, this is almost the norm. There's nothing unique or unusual about it, but that's obviously just my perspective and that's very unique field that I practice in but what I find interesting more is yes, these things are difficult but how do different people, find, ways of coping with them. And honestly, some don't, they just give up. And they basically say until I'm back to. normal, I'm just going to stop living and just going to wait for things to get better. And I honestly find sometimes some of the family doctors or employers are not particularly helpful that way where they essentially give them the same message. And the problem of course, with chronic pain is that there is no definite fixed by date. Some people could have chronic pain for a year, two years, ten years, fifty years. So this sort of a solution, just wait until you get better, which is great if you broke an ankle and it hurts. Doesn't really work great for patients with chronic pain. So in your case, it almost sounds like you are one of those organized problem solvers where you split it up into multiple separate problems and attack each one individually for step by step. Is that?
Savitri:Yeah, no, I would say you're right. I think one of the biggest thing for me was really finding just more information about chronic pain suffers. The more I spoke about it, because I wasn't so vocal about it at first because I couldn't understand it and I didn't understand what's happening, I was looking for a solution but the more I spoke about it, once I started to understand that this is something that may not go away, I also realized that within my own community, co workers, family, friends, extended family, friends who are also a little bit distant. Everyone's going through something. I was able to speak to friends and family who either have different kinds of pain that they suffer through with MS or a car accident or very different variations. But the pain that they're left with where they don't have a solution for or you know a pill that's gonna fix it all or a surgery that's gonna fix it all. It's something that they still have to cope with So what are those coping mechanisms for the symptoms that you're feeling? And I think that's how I had to start compartmentalizing it Again talking to a community of people to try different things. Whether it's the sauna, where if I felt tingling in my right side of my body, that type of pain, which doesn't seem to be painful, but it is something that can change your focus into all the tingling versus you actually reading or functioning at work. Ten minutes a day at a sauna if you're able to do that was very helpful for me, putting your legs up above your heart at night with a different type of pillow can be very helpful with how you wake up in the morning. I think the biggest one with depression was taking a walk outside, whether you want to or not, whether you believe something will help or not. There are some strategies that have been proven to be very helpful with being a part of nature and sometimes surrounding yourself with people, and if not, take that walk, time yourself, just get it done, create a checklist, complete the checklist, whether it's daily, weekly, monthly, whatever suits your needs, and you will start seeing differences, and that will attract you to do those things more and manipulate or change some things that suits your needs, but only when I started to listen and try recommendations from other chronic sufferers and using the resources to read as much as I can, I really started seeing some sort of a difference with how I was feeling about my day to day life. My pain wasn't going away, my pain did not go away, but I did have a sense of happiness in other ways, and we all suffer with pain, whether it's chronic or not, we're going to get a headache. You can stay up late, whether it's work or going to, New Year's Eve parties, and you'll, you can wake up with a headache. So we're always going to feel something. You know, we are not made to just not feel pain, there's pain for a reason, whether we have cold, flu, whatever it may be. I started to just compartmentalize how to manage the pain once I feel it and what are my strategies I think was very key.
Dr Karmy:With the sounds of things, and I guess just more of a general comment. The problem with chronic pain often is that yes, there's things that can help chronic pain, but it's very person specific. What works amazingly well for one person can be completely and totally useless for another person. And the other issue is that, people think that maybe we don't have treatments for pain. The problem actually is the opposite. We have too many treatments for pain, and it's often difficult to find the one that actually works for any one individual person, especially when it comes to things like lifestyle interventions. And the thing is, a lot of patients, they will kind of wait to be directed by an authority figure, like a doctor, as to what to do. I guess what I find a little different about you is you didn't wait for somebody to suggest things. You actually went out and did your own research. You actually experimented with things. And to be honest I think for a lot of these interventions, especially when it comes to lifestyle, diet, et cetera, that's really the only way to go because I could potentially suggest something, but it could be one of 20 options, right? And especially as a medical doctor, it's not my area of expertise, I'm not very likely to know all 20. So the fact that you actually took charge and rather than just passively wait for somebody to do something for you I think is good.
Savitri:Thank you. I think my kids drive me and to just be that person, right? They depend on me. And if I don't feel well, it changes the whole dynamic at home. And me myself, I love life. And I was always an active person. And to not have the same activity, like even something simple as driving. It was really hard and I couldn't accept that there was no answer or solution. Today I know that there's technically no solution, black and white solution, but it's a long combination of things that keeps you going and keeps you motivated and can help keep you happy and satisfied. But it's a lot of work. It's not as simple as, I decided I want to feel better. I did a couple things that I wanted to do and it worked. It was a good few years of trying different things that I read that other chronic pain sufferers were trying that didn't work for them or did work for them, but I just kept on adding to the list because it doesn't hurt to try. And some of the small things like taking a magnesium salt bath really helped with some symptoms that I had. So I would alternate and continue trying different things, and I feel like in life we had to do that throughout our lives. Every cold we have is different. Every flu we have is different medications over the counter keep changing. So I looked at it from that perspective and I never close it down that the door is on options.
Dr Karmy:So let's maybe go back to the medical side of it, which I think is also interesting and instructive. So you started out with medications. You had a family doctor in the loop. You have a neurologist in the loop. And how many medications have you tried?
Savitri:I think it went over 32
Dr Karmy:And the point i'm trying to make is doctor has no way of knowing which pill is going to help you. So just like with lifestyle interventions same thing with any other medical treatment. There's lots of trial and error and then in addition to that you also as you, I think accessed a psychologist, you went for counseling sessions. That's right. You also saw me for chronic pain management and and then you also saw ear, nose, and throat specialist. That's right. And you have a mixed picture. You have things that look a lot like migraines. And I would guess, I'm not sure, the stroke like presentation was a form of a migraine. But then, in addition to that, you have earache, right? Now, earache has a lot of possible causes. It can be a part of migraine sometimes, just like people with migraines can have pain in their eye or behind the eye. They can also have pain in the ear. Of course, the most common thing that people think about is an ear infection. Okay. And there's a whole slew of other more rare medical conditions that can cause ear pain. So you were covering both sides of it. You had a neurologist for things that look like migraine, but you also saw an ear, nose and throat specialist. Specifically looking at the ear. So when you initially started seeing the ear, nose, and throat specialist, what were his thoughts?
Savitri:So he did the general check ear, nose and throat with a camera asked me some questions looked at my blood work and things like that. And everything seemed to be okay from his perspective. It's when I got referral to the, uh, Neurosurgeon at Toronto General they started to look at different things. So I did have to start different medications that they recommended that they saw, even though I had over 32 different trials, they still wanted to add a couple more, which I went through. They also did updated MRIs and they did updated ultrasounds to different areas that they thought may have an impact to what's happening with my ear and the symptoms I was describing. So I think they had more of an in depth way of testing, which is great. And only after trying these medications they were as a community talking about potential solutions or things that other things that they can try. They did end up doing a procedure where they injected, I forget the drug, it's similar to what you used, Dr. Karmy, on me.
Dr Karmy:Local anesthetic, probably lidocaine.
Savitri:Yeah, I think that's it, that's what it was, lidocaine. And it actually filled behind my eardrum, and within 30 to 40 seconds, my pain was gone, completely gone. And that procedure proved that whatever is happening is behind my eardrum and it was nerve related. So then they were recommending to go further and do some more tests and then open up possibility of surgery. But only after they did enough research themselves about the options that were practiced today for that.
Dr Karmy:Now the ear, nose, and throat specialist I remember mentioned some Eustachian tube dysfunction, which is a tube between the throat and the ear as one possible cause of this. Your pain was worse on flights and things like that. And you mentioned it to me in the clinic I said, this Eustachian tube dysfunction can cause fullness, maybe some mild pain, but not this sort of excruciating shooting pains that you're experiencing. So not very likely. They even, I believe were discussing possibility of trying to do some sort of a procedure or surgery to open up the Eustachian tube, but then they never did that probably also feeling that's not likely to help. Right. But I guess the, thing I find interesting is that common things being common Eustuchian tube dysfunction, is quite common. So whenever you see somebody with ear pain, you know that certainly is something that's top of mind. Yeah. And an unusual presentation of a common condition is still more common than a typical presentation for a very rare condition, right? So they jumped to something that's fairly common. So the, test that was done with lidocaine, that wasn't done by ear, nose and throat specialist, it was done by a neurosurgeon?
Savitri:Yes. Yes. And his fellows. Yeah.
Dr Karmy:So they send you to the neurosurgeon. And , was the idea for doing this test, something that came up on the first visit to the neurosurgeon?
Savitri:No, this is probably at the third visit when I had a fellow one of the fellows suggested that it's a, he knows of this practice, the tympanic plexus neurectomy that they practice in the UK and in Australia that it could be an option, but there is some tests that they have to do before to see if it's a possibility. They want to get closer to the root cause of the issue.
Dr Karmy:So, it wasn't the attending physician. It was a fellow that came up with this idea.
Savitri:That's correct.
Dr Karmy:What was the attending physician's idea? What did he think it was initially, first two visits?
Savitri:Initially he did think that it was, it could potentially be, nerve issues, but also it could be a very specific type of migraine. So he's the one that had me go down the checklist of additional drugs that I didn't try that was already, on my list. So I still had to go through that and still see them still check in with them to see week to week how things are going before each appointment.
Dr Karmy:So again, this is interesting and again, somewhat typical when you start your training you have a broader list of possibilities. When you look at the patient you're not quite as biased by how common a condition is, you have a broader list of things that you are thinking about, ruling them in, ruling them out. Once you've practiced for a long time the diagnosis becomes almost automatic. It becomes a habit, which is good in the sense that you're much faster at it, but often at the same time, you start to forget those rare things because you just don't see them on day to day basis. So migraines and unusual migraine, of course, is far more common than a problem with the nerve, right? And so I find it interesting that the attending physician who is far more experienced then a clinical fellow jumped to the most common cause for this, and it was the fellow who thought of something, so to speak, outside of the box, something that's rare, but perhaps would fit the symptoms better. Just as a little bit of a segue my initial thinking was in some ways similar to the neurosurgeon's thinking. Initially I started treating the pain with nerve blocks assuming that the ear pain is part of a migraine. And because there is a migraine here, I think it's two conditions, perhaps one triggering the other, but it is still two conditions. We had some success, as in maybe four days of more tolerable pain, success as in maybe the pain wasn't as widespread after we started with nerve blocks. Then just like with medications, we had to start cycling because , it was better than nothing, but it wasn't good enough. We started mixing a bit of cortisone into the, uh, nerve block, which gave us a longer stronger relief, but still partial, and typically would last maybe a couple of months at the most. And so the nerve that was frozen when they, I'm assuming, put the needle through the tympanic membrane, was Jacobson's nerve.
Savitri:That's right.
Dr Karmy:It's a nerve, which is a branch it comes out from another nerve called glossopharyngeal nerve. So once they had this sort of a fairly dramatic result and it was very short lasting, it only helped you for what? A few hours?
Savitri:One hour.
Dr Karmy:There we go. So I started, I couldn't obviously inject that nerve, but I could inject the nerve from which Jacobson nerve comes off of. Think of nerves as trees. So Glossopharyngeal nerve is like the trunk of the tree, and the Jacobson nerve is more like a branch of the tree. So I couldn't get to the branch, but I could block the trunk. I started blocking glossopharyngeal nerve. And for that particular nerve, we had better results, or more consistent results if we did it under ultrasound guidance. And once we threw that in the response improved. I still did some of the migraine nerve blocks, but in addition to that, I also started treating that. But again it was better, but it wasn't perfect. It was still partial response. It would still wear off after a period of time. So then there was discussion about the surgery that Fellow mentioned that's not even commonly done in Canada. Is that right?
Savitri:It's not. It's not even in the system. Under their coding, even when I went to do the surgery, it's not, um, it's not hard coded into their system. Yeah, it's still considered experimental. So they have done some in Halifax as well, where I found out, but in Toronto, it's not a common practice that they do.
Dr Karmy:And so with the thing with experimental surgery is twofold.. On one hand, it can sometimes give you results that conventional treatments cannot give you, but there's also obviously a little bit of concern because surgery is a manual skill. The more you do it, the better you get at it. If you cut by accident something you're not supposed to cut the complication or the side effect can be permanent. So that's the, uh, downside to being one of the first people to do something. But of course, the upside is if it does work, often surgery can lead to a cure. So what was going through your head? What did you?
Savitri:Oh, I was very nervous and the surgeon didn't sugarcoat anything with me. He exactly how you put it with all the risks. He talked about exactly what the procedure would be if he went through it. It's also considered experimental, so he can't talk about the outcomes and promise me an outcome. So when I looked at the risks and I looked at what's involved in the procedure, it was really scary. Potential loss of hearing, potential loss of feeling or movement on the right side of my face. Because you are, working with nerves and we don't all, we don't, they don't really have a map of everyone's nerves. Everybody's, to some extent, we're all different in how our nerves are placed and it's, you know, You're, it's almost like you're taking a gamble with that, but I had a lot of faith in the surgeon I was working with because one, he's extremely experienced. Two, I did my own research as well on his background and again, experience and ratings and things like that. I had enough appointments in between to get comfortable with the idea. I've been through surgery before with my younger ones with C section, so I had some very specific questions I needed to ask to get comfortable with what the risks are. It wasn't something life threatening, but it could alter your day to day if something like your hearing is affected or, you have a droopy face. Right after the fact. So just some things I needed to get comfortable with the risks. And I think through that entire process of appointments I had enough time to get comfortable, but I also had enough time to continue working with you, Dr. Karmy. I also had enough time to try other treatments with the neurologist for, my actual migraine diagnosis as well, so I was really trying to assess if the surgery was necessary based on how I can cope with my pain, based on, the treatments I was currently taking. Receiving and what would my life look like day to day if I just stick with what I currently have. Looking at the pros and cons, and just assessing my future outcomes based on my day to day. I did decide to do the surgery. I felt like I had enough information to make that decision. And I had enough support from you and the surgeon himself, the neurologist, phone calls where I was comfortable to take the risks that they had outlined.
Dr Karmy:And what did they find when they operated?
Savitri:So when they operated so the surgery did go well. Throughout my experience and journey it wasn't as black and white. There's different things I went through as we do with surgery, right? You've got things that you don't anticipate that's not necessarily connected to the surgery itself, but through the, anesthesia and at one point I wasn't absorbing morphine very well. There's different things that was happening that I found out about myself and, how my body operates. But with the surgery, when they went in, everything went well. They had a monitor to keep track of the nerves, my facial nerves, my fascia as well. They took all these precautions, but when they went in to actually look for the Jacobson's nerve, they also found other fibers that were embedded in areas of my skull, so they actually drilled right around that to clear and clean it up.
Dr Karmy:Are you saying the nerve was compressed by scar tissue, or you're saying there's other nerves that were trapped as well?
Savitri:I didn't have any scar tissue. The testing before showed that, and when they went in, they said I did not, so it made their job a lot easier. But he explained it to me almost if you have a root of a plant, think of mint. Mint grows wild everywhere, right? When you try to pick it up from the ground, there's always roots that are popping up year after year because we didn't quite get all of it. There were some of those fibers that were embedded into areas of my skull that they had to clean up to just ensure the growth of those fibers and the nerve isn't going to multiply.
Dr Karmy:It wasn't that they freed up the nerve, it was more that, were they trying to destroy the nerve? What were they trying to do?
Savitri:Yeah, so they actually removed the core root of that Jacobson's nerve and cleaned up around it any fibers that were existing, right?
Dr Karmy:Well, I guess the question is nerves, of course, grow back, they're like plants. Uh, and you can never really pull the nerve out completely because it comes off another nerve and that other nerve could have all kinds of other functions. Right. So pharyngeal nerve, for instance, goes to the throat, affects swallowing, all kinds of things. So you are taking a branch that just goes to the ear. But, so I guess the real question is, what are they thinking? Is the nerve going to grow back?
Savitri:That's always a possibility. Always a possibility. From what I've read and been spoken about, it could happen within eight months. It could happen two years or it may not happen at all, right? That's a chance we're taking. But based on the procedure itself, they had mentioned that everything went well. They were able to seal the cap, the nerve, pretty much if you were to put glue or wax over it once they removed what they could. And it looks pretty clean from now, and they're pretty confident that they've stopped any potential growth at this point. But , it's not saying that it'll never happen.
Dr Karmy:So just for the, sake of anybody listening, since this is not a procedure that's done commonly, what is the name of the doctor?
Savitri:Dr. Rutka.
Dr Karmy:And he is at which hospital?
Savitri:He's at Toronto General Hospital. He's an amazing doctor.
Dr Karmy:And, good so now you are recovering you're not a hundred percent from what I understand, but it sounds like you're, getting back into doing some of the things you couldn't do or couldn't do as well , before the surgery. Is that it? So you're back at work?
Savitri:I am back at work on a gradual return. So I'm doing very minimal hours. Twice a week at three hours, then it will ramp up to four and five and six. So I haven't, I will be full time in the new year, but it's just a gradual return for now. I'm definitely doing well. There are some symptoms I have that haven't fully alleviated, but I'm still going through some recovery. The main recovery is over. It's about 8 weeks recovery for that. And I'm not on any medication at all. Which is great. I have a really good schedule routine that I have at home. I'm able to wake up in the morning, get myself ready, take care of my children. Participate in family activities, but I do still feel pain. But as of right now It feels as though it's still pain from my recovery. Nerves will take a while to, reattach themselves in the areas that I was. They went pretty deep past my eardrum, lifted my eardrum. But I'm also able to see at every appointment I go to, which is once a month. It went from once a week, twice a month, now once a month for a long time. I'm able to visually see in my ear and see how clean and clear everything's healed very nicely. So I know it's again part of pain management. I know the pain that I'm feeling. is part of the recovery, but nothing major is happening on the inside. Everything is clean, clear, healing as planned. So in my mind, I'm not thinking something is wrong. This part of the normal process. So I have to remind myself that, and I still have to take things very slowly. I'm not lifting anything with weight. I can't go swimming and I'm not clear to fly just yet because of the pressure. So there's still precaution, but I think one of the most immediate feelings I had after a few weeks of recovery is just happiness. And, I'm not a super emotional person and cry very easily, but if anything, being happy made me cry because it's, it almost felt as though I missed a lot of years of that feeling. It's nice to have it back and naturally feel it again and not feel like it's so forced.
Dr Karmy:Okay, and I think that's a good place to end. Thank you for taking the time to talk to me, Savitri. Good luck with your recovery.
Savitri:Thank you, Dr. Karmy.
Dr Karmy:So what are my takeaways from this interview? First of all, notice how management of chronic pain often is not a straight line from diagnosis to treatment to cure, but rather a patient typically has to try multiple approaches until one finds the one that works. Second, notice how Savitri took charge and did her own research into different approaches which may be helpful to manage her chronic pain. Again, I find patients who take charge will often do better in the long run because there's a lot of trial and error and medical doctors do not know in detail all the different approaches that are out there. Finally, I wanted to raise awareness of this rare medical condition, glossopharyngeal neuralgia. I only have seen a couple of these cases in 20 years of practice. If you have severe shooting pains that have been present for a number of years and it is specifically located in the ear and all the investigations are negative. Consider this diagnosis as you can see sometimes there is an effective treatment.
