Hi everyone, I'm Chloe Slocum. I am a spinal cord injury physiatrist at Spaulding Rehabilitation Hospital in Boston and my colleague Dr. Krista Noromaly, who's also a physiatrist with me at Spaulding, will be presenting Women's Health in Spinal Cord Injury, educating ourselves and our patients. Dr. Noromaly will be joining us via the live stream remotely for the Q&A session and we'll be looking at her presentation which has been recorded for the first part. If you have questions, we're going to take them after the recorded component, but if you're joining us on the live stream please feel free to enter them into the Q&A on the, I believe it's the app, and we'll get to them. So without further ado, I will let Dr. Noromaly's recorded presentation start and again thank you for joining us. Good morning everyone, or good afternoon, depending on the time you're looking at this presentation. My name is Dr. Krista Noromaly. I'm a PGY-4 resident from Spaulding Rehabilitation Hospital residency. Thank you for coming to my talk. I apologize that I can't be there in person this year. Given medical reasons, I can't be there, but they did give me the opportunity to record my talk and be able to present it to you this way as opposed to not being able to present at all, so I'm very grateful for that opportunity. Also, I have a cold at the time while I'm recording this, so if I sound a little off or nasally, I do apologize. Everything is working in my favor, as you can see, but to get into my talk. So, the title of this presentation is Women's Health and Spinal Cord Injury, Educating Ourselves and Our Patients, and I'll talk about why this is so important as I go through my lecture, but to give you a little bit of information, we are the providers that are caring for those with spinal cord injury, and more and more there are questions coming up specific to issues of women or women's health or reproductive health, and being able to give concrete or data-based answers for what women can expect is very, very important. In addition to that, at the very end of my talk, I will be giving an overview of a learning module that a team at Mass General Program that I'm a part of has created to try and close the gap in the knowledge and education piece of what we do know about women's health and spinal cord injury. So, again, thank you for my talk, and let's go ahead and get started. I just wanted to take a second to discuss any disclosures that I might have as a part of this presentation. The modules that I'll discuss briefly at the end was a project that was funded through an NIH Nielsen grant. That did not influence the information that I added into the presentation to discuss women's reproductive and sexual health as the key information as this talk, but the project was funded by the Nielsen grant. In addition to that, I did want to bring your attention to the fact that I will have a picture of my dog in this presentation. It's something that I always do. That's my three-year-old golden doodle named Calvin. He makes an appearance in every presentation I give, so there will be a few pictures of my dog, but otherwise no significant disclosures. During one of my electives of tetraplegia resenting to established care with PM&R. So getting a little bit more information about her, so she has a chronic C4-5 incomplete tetraplegic injury after a diving accident in her adolescence in 2010. And so this actually occurred in 2021, so she's about, you know, 11 to 12 years out from her original injury. She did have an extensive acute rehabilitation course after the injury occurred, and her course has overall been stable for the last five years. As I said, she was 30 years old at the time. She was married and had recently moved to Boston for her husband's work. He was actually a fellow and she followed him to Boston after his match process. She works, she was, she works for a nonprofit at home, and prior to coming to Boston, she had home health care to take care of her home needs as her husband was in and out throughout the day because of his work schedule. And then overall, she was doing quite well medically. She was just interested in making sure she was connected with a PM&R provider for her continued SCI management. So giving you a little bit more information about the patient encounter. So the discussion quickly went into a discussion about her reproductive health as a woman with a spinal cord injury. She wanted to talk about how she could coordinate some of the medications and the health care that she was receiving just from her spinal cord injury in general, but then also put it in the context of her being a young woman who also has reproductive goals and needs. One thing that came up during the conversation was that her and her husband were thinking about starting a family and she wasn't even sure if that was possible. She wasn't sure if she would be able to raise the child given that she did have some upper extremity weakness secondary to her spinal cord injury. In addition, she also had some pretty bad spasticity that affected her lower legs. She was interested in how that could be managed during her pregnancy. Her medications, when she came to see us, she was on baclofen and dandrium for the management of her spasticity and she was interested in pursuing baclofen pump, but she was asking us questions as to whether baclofen pump placement was contraindicated given that she was also looking to start a family in the near future. And then finally, she also wanted to talk about some of her equipment considerations if she was considering getting pregnant. How should her wheelchair change given that she was going to have additional abdominal growth given the maturing fetus? Are there any wheelchair accommodations that should be considered for her? Just knowing that she's going to be pregnant in general and her body's going to change. And to be honest, we didn't know any of the answers to these questions when when she came to see us, me and the attending that I was working with. We were able to talk about some things kind of broadly, but overall we had to do a lot of research on the back end after the conversation that we had to give her some data that was out there. So I wanted to give everyone in the audience an opportunity to reflect on how they would have counseled this patient. So just a few questions to think about, you know, like how would you counsel a woman with a spinal cord injury of childbearing age different how you would counsel a man who was, you know, within the childbearing ages after a spinal cord injury? Are there specific providers who you would connect them with within your network that you know of who would be able to answer their questions? Is there a system to look at providing accommodations or modifications to equipment or various tools during pregnancy that you're aware of within your particular network? And then are there different schemas for medications or different titrations of medications that you should be using considering a woman is about to be or is pregnant after a spinal cord injury? And so these were questions that I was trying to answer both the attending and I after that patient encounter so that we could inform both ourselves and the patient about what data is out there so that she can make an informed decision about her health. And unfortunately there was a lack of definite information or data that on this particular topic that we could feel comfortable giving her a definite answer about some of these questions that she had. And I even went as far as to ask other attendings or providers within our network to see if they had some more information about how they would have counseled this patient. And I found that there was just overall a lack of comfortability in discussing women's health or the specifics of women's health and reproductive health after spinal cord injury. And so for me already having an interest in women's health I wanted to take a deep dive into what data is out there so that if this happens again or if there's a patient that I'm interacting with I can give them a little bit more information than I was able to give this patient. I doubt any of you are thinking this but I wanted to have a slide in there it's like why this matters. And so first of all I know it's no surprise but males are different from females both hormonally and physically there are differences between those two sexes. I think this matters because a lot of the data that we do have for spinal cord injury is based on men. We all know that men spinal cord injuries are more common in men but that doesn't mean that there shouldn't be specific studies based on the differences between men and women and how they might be affected differently after a spinal cord injury. But because of the large studies that are out there that do largely include the male population there are some generalizations made about women's health based on the data that we do have about how male or men's health is affected after the spinal cord injury. Because of these generalizations and assumptions that can lead to and I think it has led to a lack of education from provider to patient because there isn't a lot of specific data out there for women after spinal cord injury. And in some cases this can lead to distrust of women and support for their care. I have been told multiple times that women after spinal cord injury just avoid going to the doctor because they just feel like there's no one who is taking into consideration their specific needs after their spinal cord injury. So again asking the question how do women feel about their health care experiences after spinal cord injury and is there a study that can talk about it specifically? So this is a study that was conducted I want to say about 2017. It's based in Switzerland and you can see the title of the study Perceived Needs and Experiences with Health Care Services of Women with Spinal Cord Injury During Pregnancy and Childbirth. And so this study talked about the medical experiences and situations that came up while and after women with spinal cord injury gave birth. Like I said they interviewed a small group of women about 17 women and discussed their experiences during their pregnancy and delivery and what they thought was lacking. This was largely a survey based study in terms of gathering their responses but overall the women in this study felt like there was a lack of medical expertise or education on women's health when it came to pregnancy. They also found that medical facilities lacked the required equipment needed to facilitate a safe birth that the doctors were requesting for women giving birth after spinal cord injury. These women also found that the training sessions that they had prior to delivery were not individualized or specified for the specific medical problems or specific needs of a woman after spinal cord injury and they thought that overall this made that the training sessions were not useful for them and their needs. And so when we ask ourselves if this is the experience, I know it's a smaller group, but if this is the experience in women after spinal cord injury when they're trying to live or like live their lives or continue to work or will deal with the reproductive health concerns after spinal cord injury and they're finding that the facilities don't have the ability to accommodate them, would you continue to want to interact with the health care system that feels like it's not made for you? So moving forward in this talk I wanted to give a brief outline of how the rest of this presentation is going to go. So looking at the outline, in the beginning I am going to speak a little bit more to women's health and SEI and the demographics and the information we do have. After that I wanted to break down women's health into specific topics so that we could focus a little bit more on the data on each particular topic as they come up. So first sexual health followed by reproductive health, pregnancy, breastfeeding, and then I do have a slide or two talking about menopause after spinal cord injury. Finally I do want to bring back the case at the end and see if we can use any of the information that we've talked about throughout this presentation to inform some of the opinions or the or advise the guidance we would have given to that patient if we had this information at the time of when I was seeing her. And then finally I do want to introduce the module that we have created to try and close the gap with with health care for women after spinal cord injury. So first discussing the demographic information like I stated. So this slide is based off of the national data that is collected at the University of Alabama-Birmingham each year about the prevalence and incidence and some of the demographic information associated with spinal cord injury for a given year. And the data on this slide was collected from 2020 so it is a little bit outdated but it doesn't differ significantly from the 2021 data that I looked up. And so looking at the data so about 20% of the spinal cord injuries in 2020 were considered to be new and the average age of injury was found to be 36 years old. And so this is actually a little bit younger so the average age between the years 2015 and 2020 was actually found to be 43. And so in 2020 the average age is a little bit younger and in 2021 from the data that I saw the average age continued to be around 36 years old. And so when we're considering this data and we're considering women's health and the average age of injury this is in the middle of their reproductive years and child-rearing years as a woman. In addition the most common mechanism of action for injury is trauma most commonly vehicular. In women it does differ slightly where they're the second most common cause of injury is a medical indication so like surgery or just like cancer and you know a spinal cord compression and that in that category but still the most common cause is trauma. So that being said with the most common etiology being traumatic it's less likely that there's an underlying issue that may affect the fertility or reproductive capabilities of the woman after spinal cord injury. Making it more important for us to find out and study and have answers for how women's sexual and reproductive health is affected after their spinal cord injury. The table at the bottom of the slide I just wanted to bring attention to the number of years that someone is living with spinal cord injury after their injury and so if you look at the far right so that's the age of the injury going down and then the in the no SEI it's how many years are expected for that person to continue to live if they like from that age so if you look at age of injury being 20 someone without a spinal cord injury is expected to live in a dish an additional 59 years and then moving on from that it shows you someone with an Asia D8 injury Asia ABC and then high tetraplegia and low tetraplegia. Finally the table is then also split up for within the first 24 hours and then also someone who survives at least one year post-injury. So bringing your attention to the right side of the call of the of the table if we look at the age of injury being 20 40 60 and those who are living past the first year post-injury there are still many years left after the injury that people are expected to survive. The age does not differ significantly compared to those without spinal cord injury and so keeping that in mind there are many years and many reproductive years and the majority of somebody's life that they live after their spinal cord injury. Putting that in the context of women's health the majority of these women are living the majority of their lives after the spinal cord injury and so having specific information and data that we can give them as to what their life is going to look like in these particular categories is ever most important. So focusing in on women's sexual health separately from the reproductive health after spinal cord injury. So the common thought for sexual health after spinal cord injury is thought that it's intact after spinal cord injury depending on the level of lesion. Unfortunately there aren't any specific guidelines of how to evaluate for sexual function in a woman after injury but in general we do know that there's two specific reflexes that affect sexual health in general one being the reflexogenic pathway and the other being the psychogenic pathway and then different lesion levels can mediate different sexual responses and then despite that arousal can be mediated through different stimulation zones and I'll go ahead and talk about that on the next slide. So talking about these pathways one by one I wanted to start with the reflexogenic pathway and so looking at this diagram you have the psychogenic pathway in the solid lines and then the reflexogenic in the dashed lines and then kind of coinciding with the reason behind this presentation I did have to use a diagram that was utilizing male anatomy and just change the labels to correlate with the female anatomy so that I could get the point across. I did want to just talk about that for a second. So on this slide like I said I'm going to be talking about the reflexogenic pathway and so following the lines the beginning of the pathway is through stimulation of the clitoris or the external genitalia that activates, excuse me, the sensory signal through the sensory aspect of the pudendal nerve and the response is mediated through sacral plexus. So if you're looking at the arrows the stimulation occurs at the clitoris. It's received through the pudendal nerve and synapses on the peripheral sacral nerves in the arousal center which is considered to be S2 through S4. That signal then travels through the pelvic plexus or again the pelvic nerves and that leads to the reflexogenic response. So when we're talking about reflexogenic response this is largely parasympathetic sexual activity. This leads to vaginal engorgement with blood similar to what you would describe as like the bulbal cavernous reflex or the anal link in the male reflexogenic pathway. So when you're testing this in women you would squeeze the clitoris and feel for anal contraction or you know engorgement of the vaginal wall. In general in women with spinal cord injury this tract is usually unaffected by the level of their injury and this is the predominant reflex that continues after spinal cord injury. So we've already discussed the reflexogenic pathway. This slide is to discuss the psychogenic pathway and so distinguishing between the two pathways on the slide the psychogenic pathway is depicted by the the solid line as you can see and so in the psychogenic pathway, there is some, some, it's a pathway that results in the vaginal lubrication and orgasm within a woman and considering her sexual health. This is more of a sympathetic response and it's mediated largely through the hypogastric nerves and then there is also a little bit that's mediated through the sacral nerves and the pelvic nerve to lead to the pelvic plexus. So following the diagram, what you can see is that there's some sort of stimuli that's inputted through the brain. So it can be an auditory, visual, thought, or really any trigger above the level of the lesion that the brain receives and considers to be something that's arousing to them. That signal is then mediated through the spinal cord to the level of T11 through L2, those nerve roots in that arousal center, and then is again transferred to the pelvic plexus through the hypogastric nerves. Some of that signal does travel down through the spinal cord again, synapses on the arousal center at the S2 through 4 sacral nerves and then is mediated through the pelvic nerve to the pelvic plexus. This overall leads to a response that leads, that is mediated through the perineal nerve that leads to vaginal lubrication and then eventually orgasm. And so this is the pathway that is most often affected when someone has a spinal cord injury because it is mediated through the spinal cord and then dispersed out into the peripheral nerves. And so it's thought that this pathway can be lost if you have an injury T10 or above, depending on how complete the lesion is. In addition, if you have a peripheral nerve injury that affects, you know, the T11 through L2 or L1 peripheral nerves, this pathway can also be affected. In terms of the pathway being affected, like I said, this pathway is more secondary to the reflexogenic pathway, but again, it is more likely to be affected in spinal cord injury. And again, just distinguishing this from reproductive health, and so in men, the psychogenic pathway, this sexual health and reproductive health pathway is kind of combined because in orgasms in men, it most often leads to ejaculation, which is how they reproduce. In women, it's two separate factors because our orgasm is not necessarily linked to our reproductive health. And so that's why in the case of women, you can have this sexual health pathway that's affected, but doesn't necessarily lead to an impact on the reproductive health the same way it would in a man. Given this information, unfortunately, there really isn't a true standard to assess women's sexual health after SCI, despite having an understanding of how these pathways might be affected. And so there's a few studies that I wanted to bring your attention to, and so this study is more of a systematic review of the literature to discuss women's health after SCI. So this particular study was published in 2017, and utilized multiple big centers to evaluate what research was actually being conducted on this topic. So as you can see, this study involved multiple model systems to publish the paper. And this review talks about primary, secondary, and tertiary outcomes of women's sexual health after spinal cord injury. And so a primary outcome that is affected for women after spinal cord injury is the neurological complications that I talked about, like that more psychogenic pathway that can be affected after spinal cord injury, like I discussed on the previous slides. And so there is the possibility that the psychogenic or refluxogenic pathways can be affected, which leads to less sexual responses after spinal cord injury. So that can be decreased lubrication of the vaginal walls, decreased blood engorgement of the vaginal walls if the refluxogenic pathway is affected, and then also decreased ability to obtain or have an orgasm if that psychogenic pathway is affected. This article also discusses that you could possibly test the refluxogenic pathway by giving cervical stimulation or G-spot stimulation to assess if the pathway is still intact. And then if you wanted to test the psychogenic pathway, you'd have to be a little bit more creative and stimulate areas above the level of the lesion that might not necessarily be considered arousal points for the woman. Primary outcomes or factors or implications of women's sexual health after spinal cord injury were considered the medical complications. So sexual activity was noted to increased tone and spasticity. In higher spinal cord injuries or cervical injuries, there was concern for mild or severe autonomic dysreflexia in some situations. And then it's also sometimes and actually pretty common that sexual experiences can lead to urinary incontinence. Because of the possibility of these complications, they noted that patients should be evaluated and educated to accommodate for these factors or consider these factors when they're engaging in sexual activity. And then the tertiary implications were the psychological and psychosocial impact of changes in sexual health in a woman after spinal cord injury. So they noted that a woman's ability to perceive sexual experiences might be altered as a part of their spinal cord injury. And this can lead to emotional and psychological distress. It could lead to depression, substance abuse, and even the lack of wanting to engage in sexual activity after spinal cord injury. And they stated that given this possibility, these things should be discussed early on in a woman after spinal cord injury to see if they can be adapted or educated through this experience. So if they notice that they're having any of these emotional changes, they could be evaluated for them. Shifting gears to another study that touches on the sexual health in a woman after spinal cord injury, this particular study was also conducted in 2017 and came out of the Czech Republic and was a mail-out survey. And what they did was they emailed, not emailed, they mailed out the survey to 30 women with spinal cord injury and 30 women without spinal cord injury that were continuing to lead a sexually active lifestyle and assess if there were any statistical significant differences between the two groups. And so drawing your attention to the table number three, so one question they asked was if they were still having lubrication as a part of their sexual activity comparing those who did have spinal cord injury and those who did not. So four women in the group with spinal cord injury noted that they were not experiencing lubrication and zero women without spinal cord injury noted that they were having issues with lubrication and that difference was noted to be statistically significant. In addition, about 14 women in the group with spinal cord injury noted that they were not experiencing orgasm compared to only four in the healthy group and that difference was also statistically significant. Finally, the amount of urinary incontinence was also higher in the group with spinal cord injury compared to the women without spinal cord injury and that difference was also statistically significant. Looking at the table two, so what they did is within the group of women within spinal cord injury themselves, they looked at if they were having a change in their experience compared to pre and post spinal cord injury. And what you can see in all three questions that they answered, there was a statistically significant difference in terms of how the women were experiencing or perceiving that particular aspect of sexual health pre and post injury. So the desire for sex, excuse me, pre and post injury, lubrication pre and post injury, and an orgasm pre and post injury. And those differences were also found to be statistically significant. Based on that study, I asked myself the question, like, is there a consistent way to evaluate or allow women after spinal cord injury to self-report like some of the sexual dysfunction they might be experiencing after SCI? And so in general, a lot of the models that we're using right now have been adapted from the MS population where we do know that some of the, excuse me, issues that they might have after the diagnosis of MS that might affect their sexual, their sexual health. And so one survey that I did find was the FSFI, which was validated in the, in 2014 in the uninjured population in order to evaluate for sexual dysfunction. And this is one that has been utilized to evaluate for sexual dysfunction in women after spinal cord injury. And so this is just a quick snapshot of what some of the questions are like. And so again, you can just sort of adapt this to say, you know, after your spinal cord injury over the past four weeks, how often did you feel a sexual desire or interest? And so then you calculate the score and then based on the results, it can be utilized as a tool to discuss some of the difficulties that your patient is having and how you can better address them. So in talking about the FSFI, this is actually a study that utilized that specific questionnaire to elucidate some of the sexual function or dysfunction that women were having after spinal cord injury. And so this study actually took place in 2011, so a little bit before the FSFI was validated specifically in the uninjured population. And it involved five Nordic countries, Denmark, Sweden, Norway, Finland, and Iceland. And what they did is they sent this survey out to about 900 women. They got about 500 responses and they were able to include about 400 responses in their survey to see how their sexual activity was affected after spinal cord injury. And so the exclusion criteria was if you know the woman had recovered from her spinal cord injury, if she had significant psychiatric illness, or if she was above the age of 70 or below the age of 18. And then they also didn't utilize data from women who had stated they weren't having any sexual activity after spinal cord injury. And so that's how the number got down to about 400 out of the 900 that they sent the survey to. So just for the sake of the slide, I wanted to bring some attention to some of the free answers that they received as they sent out the survey. So yes, they used the FSFI to gather some information, but then there was also the opportunity to allow women to discuss in their own words how their sexual activity was affected after spinal cord injury. And so just drawing your attention to a few of the quotes that I had on the slide, quite a few said, sex life doesn't work at all due to my spinal cord injury. I have less desire for sex, more difficult to achieve orgasm, feel less confident and attractive in my own body, and then sensation has changed significantly. And so these quotes, again, just note that there was a difference for these women pre and post spinal cord injury. And so having this data, even though there might not be a number of things that we can do to improve upon this, or at least not right now when the data is still being collected, I think some of the mental distress that comes from the fact that things might be different after spinal cord injury comes from lack of education. So if while the woman is in the inpatient rehab or while you're seeing her as a patient, if you can pre-discuss or provide education that this might be something they can experience, having those expectations set before they're kind of experiencing it on their own might lead to less feelings of, less surprise or a better way to kind of evaluate and prepare for some of these issues head on. So moving on to talk about reproductive health in women after a spinal cord injury. So in general, it's noted that women's reproductive health is largely unaffected by spinal cord injury. So like I said, reproductive health in women is thought to be unaffected or presumed to be normal after spinal cord injury, but there isn't a lot of specific data that has been conducted on women's productive health, so that's really as much as we know right now. There are a few variations on that, that there is some data to suggest can occur after spinal cord injury, one of them being amenorrhea. So it's not uncommon for amenorrhea to occur in the first year after injury, so amenorrhea being the lack of a period. So this can be complete lack of a period or sometimes just menstrual irregularity within that first year, and it usually improves after a couple of months up to a year. Data does suggest that if you have a woman who is having persistent menstrual irregularity or amenorrhea longer than six months, that should be an indication to check some hormonal labs, you know, LH, FSH, TSH, as that might be a component that's leading to the presentation of lack of a period. In addition to that, galactorrhea also is not uncommon in the first year of SCI, galactorrhea being production of milk through breast tissue. The most common etiology of that is neurogenic prolactemia galactorrhea syndrome, and what actually happens is that there's an injury to the thoracic nerves that are involved in milk letdown, and that basically leads to an expression of milk through the breast tissue. This can be seen within the first months after an injury, and usually resolves on its own. In addition to that, there is also data to suggest that there can be autonomic involvement in the premenstrual syndrome, so it's not uncommon that you might find that a woman may have some increased autonomic dysreflexia or increased tone when they're about to get their period or in the premenstrual aspect of their cycle, so something again to consider if you have a patient who comes in who's talking about a significant amount of increased tone, be considering is it time for them to get their period. And then, like I stated before, reproductive health is presumed to be normal, and many women go on to have regular productive health and healthy pregnancies after their injury. So this is a study that, it's older, that was conducted in 1999 that surveyed women to assess their reproductive health after their injury, and so this is a bigger study that did include 10 model system centers that used interviews to assess if women were having any particular issues with reproductive health following their spinal cord injury. The study actually ended up including about 472 women as the interviewed subjects. The average age was about 32 years old at the time of injury, and then the survey took place at an average of 40 years old, so a few years outside of their injury. The majority of the women in the study were noted to have high injuries, so either thoracic or higher, high thoracic or cervical injuries, and then the majority of the women in the study were also noted to be classified as an ASIA-A or complete spinal cord injury at about 49%. In addition to that, even though, like I said, the study was conducted multiple years out from their injury, on average, women were taking the survey when they were about two years out from their initial injury. So in this sample set, what they found was that 40% of the women were using indwelling Foley catheters, but otherwise the majority of the group was medically healthy. I just wanted to bring up the Foley catheters because if you look at the data, there was a noted increased number of UTIs and vaginal infections after spinal cord injury compared to prior in this sample set. And so again, we don't know if this is necessarily due to increased incidence of UTIs or if it might be just utilization of indwelling catheters for bladder management, but it was noted to be statistically significant when considering pre-injury UTIs and post-injury UTIs. Bringing your attention to table three, so they also asked the women about increased autonomic symptoms, so like sweating, headaches, flushing, things that we can see in autonomic dysreflexia, more frequent bladder spasms around their period, and then worsening muscle spasticity after their period compared to pre-injury and post-injury. And as you can see, there's a statistically significant difference comparing pre- and post-injury experiences of these symptoms. So again, just bringing attention to some of those things that I highlighted in the previous slide as being factors or things that you could see after spinal cord injury that may affect reproductive health. One thing that I'm personally interested in was the conversation about birth control after spinal cord injury. And so in general there's no large consensus about what is the preferred or go-to method for birth control after spinal cord injury, each method of birth control having its own known risk factors associated with taking the pill. And so in this study in particular it did ask women who were on birth control pre and post injury what formulation of birth control they were using. And so as you can see from the table there was really no consensus about what form of birth control people were using and that coincides with what we know now. The consensus overall is just sort of that as long as you educate the woman about their own medical risks, ownership, and give them guidance about what might be best in their given situation that's the form that they should use. Also if it's one that they tolerated prior to the spinal cord injury it most likely will be one that they will tolerate again after spinal cord injury. The one thing that we do know based on theoretical risk is that birth control should be you know used sparingly I'll say within the first three months after spinal cord injury just because we do know that there is an increased risk of DVT in and of itself within the first three months and then it swiftly declines after that. It's thought that you don't want to add in another factor that can increase the risk of a DVT or blood clot in those first three months. So just having particular consideration or care if you have someone who you're having a conversation about restarting birth control within those first three months. So moving on to pregnancy and childbirth after spinal cord injury. Similarly to reproductive health there's the ability to become pregnant is not necessarily affected by the spinal cord injury. There is some data that notes that women with spinal cord injury are noted to become pregnant later in life compared to those without spinal cord injury and as we know with geriatric pregnancies or pregnancies later in life there are other issues that might occur. In general there's not really any consideration or concerns I should say that come from the spinal cord injury itself. Data noted that women with spinal cord injuries wait about 5 to 15 years after their spinal cord injury to become pregnant and then usually become pregnant two to three years later than when compared to an uninjured woman in that same demographic. So just again speaking to what I'd already stated. So prenatal considerations. I'll move through this a little bit quickly just for the sake of time. Just specific factors that you should consider and counsel patients on in their prenatal period when they're considering to become pregnant and so I broke them down into specific categories as you can see respiratory, equipment concerns, weight gain and I'll go into each one of them one by one to just say some considerations that you should have when you're counseling a patient who is considering becoming pregnant. So specifically the respiratory considerations. This is mostly a factor in the second and third trimester when the growth of the fetus can sometimes affect the lung capacity. So in general when when a woman is pregnant when you have a growing fetus it does push up on the lungs and makes it a little bit more difficulty to difficult excuse me to take a deep breath or have the full lung capacity that they had compared to when they weren't pregnant and this can be a much more significant factor in women with higher spinal cord injuries because in this particular case they already lack the normal abdominal muscle control and accessory muscle use that might be needed in order to take a deeper breath. So sometimes supportive ventilation is indicated in women and then some women might even need to be intubated to support their breathing during during pregnancy as the fetus continues to grow. Bladder and bowel concerns. So because of the increased weight gain and abdominal girth this can compress the GUSM system making women with a spinal cord injury more likely to have a UTI compared to women in the uninjured population and actually UTI is the most common complication in women with SCI during their pregnancy. In addition because of some of the positional changes and the position of the fetus it can make it difficult for them to empty their bladder keep so advising your woman a woman who with an SCI who is pregnant that they might need to have frequent catheterization and then just being evaluating for the negative complications of a UTI like hydronephrosis or pyelonephritis in the later stages. This is also a group where you would treat asymptomatic bacteria because of the concern for infection and then in general there can be changes to their bowels because of the abdominal growth so they are becoming constipated considering high fiber diet or higher fluid consumption. So mobility and skin concerns this is something that we're already concerned about within our spinal cord injury population but we should pay even more attention to in a woman with spinal cord injury who becomes pregnant and so the increased weight leads to a shift in body mechanics so this increases the risk of falls and difficulty with transfers and then you also have to consider the fit of the equipment that the woman was using to prior because of the growing abdomen and the abdominal girth that she now has to support. In addition because of the increased pressure and increased weight there's the increased risk of pressure injuries and so sometimes it's needed to have increased frequency of pressure releases and skin checks and then overall weight gain is something that we monitor pretty regularly within this population and just ensuring that women do not gain too much weight especially rapidly is very important within this population because of the increased difficulty of losing weight within this population and how that can be affected postpartum. And so continuing the considerations and so again there is the increased risk of DVT due to hormonal use in general but this also might be a higher risk for women with spinal cord injury and in some cases you can even consider anticoagulation from the second trimester till about six weeks postpartum given their increased risk. There's the risk of AD and labile blood pressures due to again dysregulation of bowel and bladder but it's also important to differentiate this AD compared to preeclampsia which is also a condition that can occur in the late stages of pregnancy. Increased spasticity can also occur in the later trimester so making sure that you're stretching and maintaining your mobility is very important for our patients and so at the bottom all I did there was have a table that I included to distinguish between preeclampsia which is also elevated blood pressure and other lab tests that can affect the baby and to show signs of fetal distress which would be an indication for early induction of labor versus autonomic dysreflexia. So just some things to consider if you do have a patient who is pregnant who is experiencing some of these symptoms. Again just keeping this in mind many of our patients are on medications that are considered to be really like pregnancy risk C class to manage some of their conditions that occur after spinal cord injury. So one that comes to mind is Baclofen or Tizanidine. Those are considered pregnancy class C but are also major medications that we use to manage spasticity and so unfortunately there's not a lot of research out there to determine how safe these medications are in pregnancy but in general within the pregnancy population and OBGYN what has been done is that they've shifted the frameworks of having the classes of ABCDX in pregnancy to those just like the risk and benefit ratio of continuing this medication within pregnancy. So further research is needed in this aspect but something to consider if you're counseling a patient who's wanting to become pregnant. And so this is specifically a table that comes out of Germany which are guidelines of the German Association of Sciences uses to monitor women during pregnancy. There are newer guidelines there is a guideline set of guidelines that came out of Canada last year that says has a similar breakdown of things to consider or guide when you have a patient who is pregnant or planning to become pregnant but I just wanted to include this table because it breaks it down by trimester and then how you would manage these particular issues. So in general it's not uncommon for women who are pregnant with spinal cord injury to deliver early so sometime between 32 and 37 weeks and it's also not uncommon for women to be hospitalized in the third trimester to monitor for signs of labor. Due to concern for autonomic dysreflexia an epidural is utilized in really all pregnant women with a with with risk for autonomic dysreflexia during labor and then c-sections are not necessarily required. Women can give birth vaginally with a spinal cord injury but they just need to have frequent monitoring to make sure it's a safe process. Again moving quickly just for the sake of time I wanted to talk about some of the postpartum considerations and parenting considerations after spinal cord injury. After spinal cord injury and so breastfeeding considerations we all know the data or there is data to suggest that there are multiple benefits for the infant and the mother to in breastfeeding her child. The WHO or the World Health Organization suggests exclusive breastfeeding for the first six months and supplemental breastfeeding in addition to other foods and possibly formula for the first two years of life. So milk production just looking at the schema very quickly there's two factors that lead to milk production one being milk production that's dependent on prolactin and then the let down reflex which is driven by oxytocin and so milk production or prolactin is stimulated by the sensation of the suckling infant at the breast and that's usually a pathway that's not that that is not usually affected by spinal cord injury. It's more frequently that the let down reflex is the one that's affected by spinal cord injury because it is dependent on the somatosensory pathway stimulated through the upper thoracic nerves usually t3 through t5 to lead to the production of oxytocin that allows for the milk ejection or milk ejection from the breast tissue. So because women with higher spinal cord injuries might not have sensation from that level or might have an injury that affects their sensation from that level it's more likely for the milk let down or the ejection of milk from the breast tissue to be affected compared to the actual production of milk itself. And so this is a study that was done that looked at the influence of spinal cord injury in breastfeeding and so in general there were two separate questionnaires one the first questionnaire was just finding basic demographic information and then the the second questionnaire was asking about the duration of exclusive breastfeeding and the reasons why cessation of breastfeeding occurred in this specific patient population. So it was about 50 52 participants in general but and the second questionnaire that asked why you know they might have stopped breastfeeding was about nine questions and so about 73 percent of women completed both surveys. So bringing your your attention to a few aspects of that that second questionnaire or the the difficulties that women had with breastfeeding so it was found that women with higher spinal cord injuries had trouble with breastfeeding including positioning problems or trouble with positioning the infant in a way to facilitate breastfeeding that was not found to be statistically significant but the the factors that were considered to be statistically significant compared to women with high spinal cord injuries and low spinal cord injuries. Women with high spinal cord injuries more likely to have engorged breasts, insufficient milk ejection, and an increased risk of autonomic dysreflexia and all of those were found to be statistically significant and that makes sense based on sort of the fact that they may not have the appropriate or any response perceived from that that t3 to t5 level. So inability to let milk out so leading to engorged breast or difficulty with milk ejection and then as we know women with our patients with spinal cord injuries above the level t6 or t6 and above are more likely to experience autonomic dysreflexia in general. And then just another slide to bring attention to why they they stopped breastfeeding and so there is a difference between the two groups when they when they noted I did so on my own choice, I thought the time was right, and then the second most common reason was I wasn't producing enough milk and that was more common in women with high level spinal cord injuries compared to those without. I just thought this particular case report was it was interesting where they took women with tetraplegia or high level spinal cord injuries and actually were able to get them to breastfeed by supplementing oxytocin through a nasal spray to allow for milk let down and so there are ways that we can circumvent the pathway to allow for women with high cervical or high tetraplegic injuries to breastfeed and so I just thought this case report was interesting and I wanted to to bring your attention to it. Considering adaptive equipment because of the different limbs or the different aspects of positioning that might be affected in a woman with a spinal cord injury there are various tools that can be utilized for positioning, feeding, an ADL care for the infant, and so just being aware of some of the difficulties that your patient might have, making sure that you get other therapies involved so that you can circumvent any of these issues and plan for them accordingly as a woman is rearing her child. Finally, just a quick little piece about menopause after spinal cord injury. Again, there's not a lot of data out there but in general they found that there were not necessarily notable differences between how women experience menopause in those with spinal cord injury and those without spinal cord injury and I found that to be like pretty interesting because when I'm thinking about spinal cord injury and what that already puts you at increased risk for it puts you at increased risk for menopause. So, I'm going to talk a little bit about menopause it puts you at increased risk of vasomotor symptoms. We know about autonomic dysreflexia that puts you at increased cardiovascular disease which we know is the most common cause of death in patients with chronic spinal cord injury but they found that there was really no significant difference in the symptoms of menopause compared to in these two populations. So, just a few things to consider if you do have a patient in menopause or a woman in menopause who has a spinal cord injury. Just knowing the concern for increased risk for cardiovascular disease and thinking if there's anything else that you should really screen for when you have a woman of that age. In addition, we do know that there is increased bone density loss below the level of the lesion in spinal cord injury and there's also evidence of increased bone loss with a decrease in estrogen and menopause and so maybe increasing the amount that we're screening for osteopenia or osteoporosis in this particular population. And then finally, there is data to suggest that the risk for bladder infection or UTI goes up in general in women during menopause because of the lessened elasticity in the urethra or vaginal tissues and so keeping in mind that your patients may experience increased UTIs during menopause and screening for that a little bit more often if they're complaining of symptoms. So, with my last few minutes, what I want to do is return to the case and utilize some of the information that we have to influence some of the decisions or the guidance that we might have given the patient that I saw about a year ago and answer some of her questions about her ability to become pregnant and then also how to facilitate that moving forward. So, just a refresher again, she is a 30-year-old female with past medical history of incomplete tetraplegia. She was C4-C5, secondary to a diving accident in her adolescence. Here, I've just kind of condensed the key components of her history that we should consider in making recommendations for her further care and so I'll give everyone about a minute or so to kind of discuss amongst themselves these three questions that I have and then we can move forward. So bringing it back full circle, I know that really wasn't a lot of time to discuss just wanting to making sure I keep to time. Hopefully you were able to have a few more insightful things to say to the patient than I did about a year ago when I saw them just based on this presentation and how you would advise her and just keeping these things in mind if you were to experience or meet one of these patients in your clinic moving forward. And so key points again, even though women do make up a smaller sample size within our patient population with spinal cord injury, there are key differences in their care and there are key differences that we should really keep in mind when we're advising them in terms of their holistic management following spinal cord injury. And this is also just a call to continue to further data collection and further the amount of studies that we do on women because there are a lot of answers that we still don't have good answers to. And then just making sure you are advocating for your patient and taking the time to educate ourselves and yourself just because these things do come up and making sure that we can advise our patients and give them the information that they need to move forward in their care. So in these last couple of minutes what I want to do is just bring your attention to the module that we did make with the Nielsen grant that is going to be really put out here probably it's going to be out by the time you hear this lecture. More education opportunities for both physiatry clinicians and then also clinicians that our patients interface with outside of you know the PM&R realm. And so what our group did was break down specific health factors for women's health and spinal cord injury and created a four module series to allow for better education of physicians specifically in in how they care for women with SDI. And so the focus of this module is to focus on non-PM&R trained providers or doctors because our patients do interface with doctors throughout the spectrum of health care. So this is for when they go for their OB-GYN exam when they see their internal medicine doctor to make sure that we're closing the gap about some of the specific indications and specific factors for women's health that they they might not have considered prior. And then also specific aspects to how they provide care in their office that are better that appreciate and take into account the needs of our patient population. So like I said it's a four module series and as you can see the modules are broken up into general medical issues, health maintenance, pregnancy and parenting, and sexual health and reproductive health. And so for my presentation I focused on information from the last two modules but with the course it is going to focus on all aspects that we think are important to women's care and women's health care after spinal cord injury. And the production of these models was influenced by a focus group of women with spinal cord injury and taking into account some of the things that they noticed when they were going to the doctor that made it more difficult for them to interface and made it more difficult to feel like they were having well-rounded and inclusive care. And so for the piloting plan what we are doing is we're going to test it amongst the residents within our network first and then we're going to release the module to the greater MGB network for them to take and also get CME credit for. And then based on the feedback we're hoping to make other iterations of the module whether it's making them for other support staff because this module is specifically focused on physicians and how they interact with our patient population. But maybe it's you know focusing on the MAs or the different health care teams that they might experience or interface with during during their their health care visit. And then maybe putting it into other languages to make sure that we're making it as inclusive and it can reach as many people as possible. So that's really the end of my presentation. I wanted to leave some time open to questions. I should be there via zoom to answer your questions and if not please use my email to reach out and ask me any other specific questions or feedback that you might have based on this presentation. And I just wanted to say thank you for all of you attending my lecture. I hope it was informative and a good utilization of your of your time here at AAPMNR. And again I'm just grateful to have had this opportunity even if it is pre-recorded and from abroad. But thank you again and I hope you enjoy the rest of your conference. So guys, we're going to attempt to beam in Dr. Noramoli for the Q&A. I can answer any questions that you have in the meantime. I'm going to read some of the questions that we got from the app, if you guys are interested. Erica David Park said, thank you for this wonderful presentation. It's a topic that definitely needed to be brought to light. Have attempts been made to collaborate with OBGYN societies like ACOG? I'm not aware of anything from AAPMNR on the organizational level. I know that through the Nielsen grant, we have been collaborating with our local obstetrician and gynecology colleagues on this, and certainly that is something that in the future we hope to distribute it. I'm going to post on the app as well, and if you'd like, you can either email Dr. Noramoli or myself. We are happy to give you the link. It's a free four-module course. You can get up to four CME credits, and you don't have to do the whole thing. You can, if you wanted to do one, you could get one CME credit. Do you have Dr. Noramoli's Q&A slide with the link on it? That's the one you have? Okay. Christina Coates says, the German article mentioned about obstetricians not having equipment that they needed at the time of delivery, and then what should they recommend if an OB were to call you as a physiatry colleague, and what treatment for autonomic dysreflexia should an OB have on hand? Christina was under the impression that the epidural took this concern away, and Dr. Noramoli will join us virtually this way. So I would say, I think the equipment mentioned, just as we said, so equipment being, you know, anesthesia being on board, having the supplies for an epidural, that sort of equipment is key. Other equipment that, you know, could be needed that, you know, we might want to be in place, things like appropriate pressure reduction surfaces for somebody if they're going to be in a position for a longer period of time, especially given the changes in habitus and weight that happen with pregnancy. But I think the main thing is coordination around appropriate analgesia, and then that, you know, I think, Christina, your impression is correct. That is why we do recommend epidural anesthesia, even for folks who were thinking we'll be able to deliver vaginally. But the coordination around that needs to be done in advance. And to, I think, in our practice setting, what we've discussed with obstetricians is that these folks need to be connected with a maternal fetal medicine specialist early on. I'm thinking even some of my own patients, you know, we will have them see them for a preconception consultation to really go over their medication list, to talk about changes to bowel and bladder management that may happen as pregnancy progresses, and then to talk about, you know, decision trees in terms of checking for preterm labor, what may cause the obstetrician to recommend hospitalization later on pregnancy as the delivery date approaches. And so I think those are all things, you know, but I think if someone certainly had a spinal cord injury and was not connected to prenatal care, or maybe, for instance, was traveling and was not near their their primary team, these are things that, you know, if someone were to call you as a physiatrist and say, you know, gee, we have this person from out of state, they have a cervical spinal cord injury, they came in, they're 35 weeks pregnant, and they had a rupture of membranes, what should we do? Really, I think the first point would be, you know, how do we get them an epidural, and how do we monitor, you know, maternal and fetal well-being as labor progresses. All right. Dr. Naramly, do you have anything to add? AD if it's not around the time of delivery, because that can also occur just thinking about some of the supportive measures that we can take and use in pregnancy. So the nitro-based is something that would not necessarily be a go-to if someone was pregnant, considering more like other antihypertensives that are utilized in pregnancy, hydralazine possibly, or even nifedipine. But to answer that question specifically, like epidural is still the mainstay, specifically when we're talking about autonomic dysplasia around the time of delivery. Okay, thank you. And for anyone on the app, if you're having trouble hearing, Dr. Normalee gave a great synopsis of managing AD not around the peripartum or the intrapartum phase, which would be using things like nifedipine and hydralazine rather than vasodilators like nitro-based. All right, all right, I think we're getting ready to wrap up. We have 54 seconds left. Thank you to everyone that attended. Like I said, I'm up here and I'm happy to give you my card, my email, the link to the module. I'll also post it in the chat on the app so that folks attending virtually can have it. And thank you. Dr. Normalee, do you have any last words? Thank you. Thank you, guys.

women's health

spinal cord injury

educating patients

sexual health

reproductive health

pregnancy

breastfeeding

menopause

challenges women face

lack of research

lack of education