Rectal Prolapse, Dyscalculia & Dyspraxia: The Connective Tissue Connection | Office Hours

[00:25] Dr. Linda Bluestein: Learning and cognitive processing is also something that a lot of people struggle with. So although general intelligence amongst EDS and HSD patients is typically above average, the following problems can contribute to learning difficulties. Welcome back, every bendy body, to the Bendy Body podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained expert in connective tissue disorders dedicated to helping you navigate joint hypermobility and live your best life. In today's office hours, I will be answering some of your most pressing questions, and thank you so very much for submitting those questions because it really helps us know what you want to hear about. If you're watching the video or if you're listening, you're going to see or hear new faces and voices on Office Hours for my team at Huma Content. Today, one of those producers, Shanti, will be joining us. Hi, Shanti, it's so good to see you.

[01:31] Shanti: Hi, Dr. Bluestein, thanks for having me.

[01:35] Dr. Linda Bluestein: Of course, of course. We thought it would be fun to give you a behind-the-scenes look for this Office Hours episode, so they'll be popping in to read some of your questions and keep things rolling. Shanti, thank you so much for being here and for wearing VIP Bendy Bodies merch. Can you show us what that looks like?

[01:52] Shanti: Absolutely. Check this out.

[01:54] Dr. Linda Bluestein: Yeah, so if you would also like a VIP shirt, let us know and we will see how we can get those available for order. Please stick around until the very end so you don't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Here we go. Before we begin today's episode, I want to honor the life and legacy of John Fuhrman, founder of Chronic Pain Partners and a pivotal leader in the EDS community. John created Chronic Pain Partners, also known as EDS Awareness, in 2011 after losing his wife Carol to misdiagnosed EDS and after his daughter Deanna was also diagnosed with hypermobile EDS. His goal was to ensure that no other family experienced what he did. He dedicated the rest of his life to advocacy, building over 100 support groups across the United States launching the first major EDS webinar series, developing CME programs, and creating extensive educational resources long before widespread awareness existed. John was also the person who first drew me into EDS advocacy. Together, we created the first online EDS CME program, and since 2018, I have served as the volunteer medical consultant for his nonprofit. I learned a tremendous amount from John. He invested his retirement savings, his time, and his heart into this community. He was deeply loyal, direct, and committed to doing what was best for people with EDS. If you would like to honor John's legacy, you can share memories or messages on the Chronic Pain Partners website, and donations to his name can be made to support the continuation of the work he began.
[03:37] So now I would like to address some of your questions. Shanti, would you like to read the first question for us?

[03:39] Shanti: Of course, this message is from Sean. Sean writes, I'm happy to have discovered the podcast on Spotify and I absolutely love it. Unfortunately, Sean says, I suffer from hEDS and HSD. I have rectal prolapse and have had 5 different surgeries to repair it. The last was robotic surgery with biodegradable mesh, as I am allergic to many things. And so we did not use the plastic form. It only lasted 5 weeks. My colorectal surgeon is wonderful, but we are at a loss. I was wondering if you, one, knew of a surgery treatment that actually works for hEDS, HSD individuals, and two, if you have a referral to a successful colorectal rectal surgeon. I live in Michigan, but I'm willing to go anywhere for treatment.

[04:31] Dr. Linda Bluestein: I understand how these patients must feel. Yeah, it's so, so rough. And Sean, I'm so sorry that you're going through this. Recurrent rectal prolapse is so, so hard. And especially if you've been through 5 surgeries, that's, that's really tough because each one of those is going to be painful and involves so much healing. And so that's just— my heart goes out to you because it must be so hard to be in this situation. We're going to try to share some tips that might be helpful for Sean and other people who are experiencing pelvic floor prolapse, because we know this is very common with hypermobile EDS and HSD. So what are some things to be thinking about? The first thing we're going to think about is what operation will best fit your mechanics and not just the prolapse. Before any repair, you want to ask for a full pelvic floor and motility workup to tailor surgery appropriately. Some of the things that can be done include a dynamic MRI or fluoroscopic defecography. You want to look for multi-compartment prolapse, enterocele, and internal intussusception. You also want to look at anorectal manometry and balloon expulsion. And if constipation is prominent, you wanna look at colonic transit testing. You can also ask for endoanal ultrasound to check for sphincter deficits. And this can help determine whether you would do better with an abdominal rectoplasty, the ventral approach, or through the abdomen versus a perineal procedure, which is when you come from down below in the perineum or your saddle area. Or a combined plan with urogynecology.
[06:13] I also want to point out that if a person has tethered cord syndrome, which is very common with people with hypermobile EDS and HSD, that can also greatly impact your ability to empty your bowels and can impact your pelvic floor tone, et cetera. So I highly recommend that you also check out the episode with Dr. Petra Klinge, which we will link in the show notes. Okay, so from the standpoint of doing an anterior or ventral surgery, rectopexy, with non-permanent reinforcement or suture only. So if you're going to try to avoid putting in any kind of mesh, here are some things to consider. First of all, laparoscopic or robotic ventral rectopexy avoids wide posterior mobilization, which can worsen constipation. So if you're going in through the abdomen, you don't have to mobilize as many tissues in the posterior part of the body where the rectum is. If you don't tolerate synthetic mesh, you want to consider discussing with your surgeon biologic or absorbable options or suture-only fixation to the sacrum.
[07:16] As I discussed recently though, in a podcast episode, a lot of us with mast cell activation, even with biologic or absorbable options, we will still reject those and our immune system will activate and cause those things to spit out. Like I talked about my spitting sutures from my forehead. So, uh, if you've ever had sutures before, and if you've had any kind of issues with spitting sutures, see if you can get a copy of those operative notes so you can find out what kind of suture it was. Recurrent risk is higher without permanent material, but in hypermobile EDS, the trade-off can be worth it if reactions or erosion are a concern. You also want to ask specifically about low-tension fixation, smaller implants, and techniques to minimize traction on fragile tissues. That was part of the problem with my forehead, by the way. It was under so much tension that, um, that's part of, I think, why the whole thing opened and kind of came apart.
[08:10] Okay. So if the approach is going to be perineal, so that's coming from below, um, in the area where, like, we call that the saddle area also. If you're going to do an external approach, some of the things that you want to think about, there's an approach called the Delorme, um, which is a mucosal sleeve resection that can help mucosal or internal prolapse with less deep dissection. There's another approach called the Altmaier, which is a perineal rectosigmoidectomy, which is an option for full thickness prolapse in carefully selected patients. In hypermobile EDS, recurrence is a risk, and success depends on optimizing constipation and any kind of dyssynergia and minimizing strain. We also want to address upstream drivers of recurrence, things like constipation and outlet obstruction. We wanna prioritize osmotic laxatives like polyethylene glycol and magnesium as tolerated. You want a soft stool consistency, definitely gentle toileting posture, whether it's the feet on the stool or some other kind of, um, sitting type of device that can change the way your body is positioned in order to evacuate your bowels. And also pelvic floor physical therapy.
[09:22] We also want to be thinking about cough and Valsalva. We wanna treat any kind of chronic cough because that's going to put more pressure on the perineum. We want to avoid heavy lifting, and you want to make sure that if you are doing any kind of weightlifting that you are doing exhalation during the effort for breathing rather than like holding your breath and bearing down, which is gonna put more strain on your perineum. If you have POTS, postural orthostatic tachycardia syndrome, or dysautonomia, you want to work on optimizing your hemodynamics so that you have less straining. Some people have syncope on the toilet, which we want to of course avoid. We want to make sure that we optimize our fluids, salt, and compression, and use medications if needed. It's really important to coordinate with urogynecology and rectify any coprolapses at the same time, if at all appropriate, and also utilize native tissues or carefully chosen grafts.
[10:15] There are some tweaks that we want to do that are specific to hypermobile EDS, such as position and handling. We want meticulous padding and avoiding hip overabduction. So that's when the hips are, you know, normally people are in stirrups for this kind of procedure, and so their legs are apart. Um, and we want to make sure, number one, that we minimize traction on all parts of the body, but we also want to put people into position after verifying that the surgeon is ready to start. Especially at teaching institutions, sometimes the surgeon will be bouncing back and forth between several different rooms. And this is true for all EDS patients, regardless of the type of surgery that they're going to have. We don't want people sitting in an abnormal position for longer than is absolutely necessary. If you're an anesthesiologist and you're listening to this, or a nurse anesthetist, make sure that you know that your surgeon is ready before you put somebody with EDS into the surgical position. Um, when it comes to sutures and closure, we want to favor long-lasting absorbable sutures with the caveats that I mentioned below, using interrupted tension-free closure. Um, also consider adjunct skin adhesive. If you have ever had a problem either with suture or with skin adhesive, try to get a copy of those records and get as much detail as possible to share with your surgical team in advance. The more notice that people have, the more that they can prepare. Um, you also want to consider, have you had any problems with local anesthesia resistance in the past? And do you have any signs or symptoms of, uh, temporomandibular dysfunction or cervical instability? If you have POTS, you wanna consider more aggressive hydration. And we want to be, of course, very gentle with every person's airway.
[11:59] However, we know that some people are at higher risk of developing a complication than other people. So definitely check out a previous episode where I discussed the pros and cons of wearing a cervical collar to surgery. We also wanna think about how can we best support the body for healing. So we want to optimize hydration, protein, vitamin C, zinc. We want to manage anemia, consider estrogen status and postpartum hormones if relevant. Um, I did wanna share one product really quickly. I don't have any financial relationship with them, but I this when I was healing from my forehead surgery, and it's called Juveen, and it is in my Amazon store. This really helped me a lot. I was taking supplements as I always do before I started using the Juveen, and I was like a month out of my surgery. My incision was still open. It had dehisced, and my husband said to me, well, I wonder if you should take some of that Juveen. I was like, yeah, great idea. So I started taking it, and that's when my incision finally closed. So it could be a coincidence, but I really think that it helps, and I definitely would take it again if I have other surgery.
[13:09] Okay, so some other considerations for non-surgical or adjunct options. We want to really think about thoughtful pelvic floor physical therapy with a therapist who really understands connective tissue disorders. I know, Sean, you've probably already had multiple courses of physical therapy, so this might not apply as much to you, but for people who have not yet had surgery and/or maybe they're post-op, and they're not doing as well as they would like, definitely investigate pelvic floor physical therapy. There's also some neuromodulation that can be done with sacral or tibial nerve stimulation when incontinence is a major symptom and anatomy is borderline. You can also consider bulking agents for focal internal prolapse or rectocele-related seepage. Um, in selected cases, pessaries are usually more helpful for vaginal prolapse, but they can also help reduce strain dynamics. Sean, I wish I could tell you the perfect surgeon to go to here in Colorado, but I don't have personal or professional experience with a surgeon of that nature, a colorectal surgeon, so I wouldn't be able to make any specific recommendations. There are though some very big centers that have, uh, you know, pelvic floor and colorectal and urogynecology, like the University of Michigan, Cleveland Clinic, Mayo Clinic, University of Chicago, Northwestern, University of Wisconsin, etc. So you might want to consider one of those places, and definitely one of the best things you can do is go on Facebook or another site, look for EDS support groups. Um, again, John Fuhrman was involved in creating so many EDS support groups, and that's such a great place to really get EDS-specific recommendations. So definitely ask in those support groups for a colorectal surgeon that people would recommend.
[14:46] So here's some questions that you should ask. Number 1, how many redo rectopexies and perineal repairs do you perform yearly? Of course, the higher the volume, the more likely the person is going to have a lot of expertise and success with your surgery. Number 2, um, how comfortable are they with mesh-free or biologic ventral rectopexy? Number 3, do they co-manage with urogynecology and pelvic floor PT? Number 4, what is their standard pre-op motility or defecography protocol? And number 5, do they have any hypermobile EDS-specific anesthesia and closure practices? In terms of what to bring to the consult, you want to bring your one-pager that has your medical history on it. You may also want to include another document that has the dates of your surgeries, the techniques, the materials used, and any complications that you might have experienced. If you can get a copy of the operative notes, that would also be helpful, although they might be able to access those if they're on a system using Epic software and you have checked the box for Epic Everywhere. Um, other things that you want to include include imaging and op reports. Definitely make sure that you include a list of allergies and intolerances, especially including anything with sutures or adhesive reactions. Definitely make sure you mention any problems with local anesthetics in the past, whether it be delayed onset, need for a higher dose, need for a specific local anesthetic, et cetera. And I would also recommend bringing a 1 to 2 week stool and strain diary and list of laxatives tried. And lastly, I would bring a summary of POTS and MCAS treatments that you are currently on and what your current functional limitations are.
[16:33] So the bottom line, there is a possibility of success, but of course with each subsequent surgery, we do worry more and more about getting the mechanics right and the possibility of an enduring repair. Um, whenever possible, we want to really get a very full pre-op testing, uh, performed. We want to choose a low tension tailored repair, often a ventral rectopexy with biologic or suture only fixation if mesh is a problem. And thirdly, aggressive managing of the drivers of strain like constipation, POTS, cough, et cetera, and meticulous tissue handling.
[17:09] Okay, Shanti, should we take a quick break right now?

[17:12] Shanti: I think we should take a quick break. Gave a lot of really great information, and I think that Sean can, you know, find a lot of good resources from that.

[17:19] Dr. Linda Bluestein: Okay, well, Sean, I hope that you find that helpful. We're going to take a quick break, and when we come back, we are going to talk about neurodiversity and hypermobile EDS and HSD. We'll be right back.
[BREAK]
[18:50] Okay, we're back. Shanti, it is so great that you're here. I'm so happy that you're here. So do you have the next question for us?

[18:57] Shanti: Yes, Linda, we have a great question from Meg. Meg is asking about vision, dyspraxia, and its overlap with hypermobility. Here's Meg's question: I'm a college student who has dealt with extensive hypermobility in most of her joints for as long as she or her parents can actually recall. I'm, I'm also diagnosed with multiple learning disabilities along, along with the dyspraxia. And convergence insufficiency of the eyes. I was wondering if EDS and connective tissue disorders have any impact on the visual system, or if dyspraxia is a common diagnosis that people with connective tissue disorders get labeled with as children. Thank you for your advice. I love listening to your podcast.

[19:43] Dr. Linda Bluestein: Poor Meg. That sounds like a bunch of stuff to really deal with all through her life.

[19:47] Shanti: Yes, yes, absolutely.

[19:49] Dr. Linda Bluestein: And I will say right off the bat. These kinds of conditions are super, super common with EDS, which is why we're going to talk about this today. So important. I hear about this all the time. I would say probably every single day that I'm seeing patients or clients, I am hearing about people experiencing some kind of, uh, neurodivergence. So super common. Neurodevelopmental and learning-related challenges such as dyspraxia and convergence insufficiency are extremely common. These issues arise from a combination of neurological, proprioceptive, and connective tissue-related mechanisms, not from differences in intelligence or effort. So that's a really important point.
[20:29] Okay, so let's talk about the relationship between EDS and neurodivergence. So we know that EDS affects not just connective tissues in joint and skin, but also in the eyes, the nervous system, and vascular tissues. This can lead to neuromotor, visual, and sensory processing difficulties that contribute to what appear as learning challenges but are really neuromotor or integration problems rather than cognitive deficits. Some common co-occurring neurodevelopmental features include dyspraxia, which is also known as developmental coordination disorder, convergence insufficiency and other binocular vision disorders, and that's related to the eyes working together, dysgraphia, which is difficulty with handwriting, dyslexia, which is difficulty with reading, and dyscalculia, which is difficulty with numbers. We also see executive function difficulties. Sensory processing sensitivity, or overload.
[21:20] So let's talk a little bit more about dyspraxia, otherwise known as developmental coordination disorder, and how it relates to EDS. So dyspraxia is caused by impaired motor planning and coordination, not muscle weakness alone. In EDS, the proprioceptive feedback, which is the way that the body knows where it is in space without looking, is impaired due to ligament laxity and delayed signal transmission. Poor proprioception makes it harder to calibrate fine and gross motor actions such as handwriting, tying shoes, balance, and rhythm. Some of the common features that we see with this are clumsiness, frequently dropping things, poor balance or posture, difficulty with multi-step motor sequences, fatigue with writing or fine motor tasks, slow or inconsistent handwriting and note-taking.
[22:05] And what's interesting is, um, as we've talked about a lot on this show, a lot of dancers have joint hypermobility. They don't all have connective tissue disorders, of course, but for me as well, when I was younger and I was dancing, I was super coordinated in dance, but I was super uncoordinated outside of dance.

Shanti: Interesting.

[22:22] Dr. Linda Bluestein: Yeah. Isn't that interesting? So a lot of dancers will be able to relate to this, like, wait, this is so weird. I've always wondered why I'm coordinated in dance, but not outside of dance. Um, so what are some of the things that we can do? We can work with occupational therapists that specialize in sensory and motor integration. We can work on our proprioceptive and balance training, whether it be through Pilates, aquatic therapy, or dance-based rehab. We can do task segmentation and assistive technology. We can use dictation software, we can work on our typing, we can use larger writing tools. And also working on fatigue management is important, using shorter writing sessions and ergonomic supports.
[23:03] Next, let's talk about convergence insufficiency and visual processing. I'm shocked how frequently I see this in my patients. So by definition, this is a difficulty coordinating both eyes to focus on near tasks such as reading, writing, or computer use. This is very common in EDS due to connective tissue laxity in the extraocular muscles and poor oculomotor control. Some of the symptoms include eye strain, headaches, double or blurred vision with reading, difficulty maintaining place while reading, skipping lines or words, poor reading endurance, sensitivity to light or motion, and part of the challenge is that a lot of these things can also occur with migraine. They can occur with craniocervical instability, CSF leak, and a variety of other things that people with EDS are at increased risk for.
[23:51] So what can we do about this? There are neuro-ophthalmologists and neuro-optometrists that could do a detailed evaluation looking for developmental or functional vision problems, not just refractive correction. You can employ vision therapy for eye tracking, focusing, and convergence exercises. Sometimes prism lenses or reading glasses are prescribed. And lastly, you can consider environmental adjustments such as appropriate lighting, large print, screen filters, and frequent visual breaks.
[24:21] Okay. Learning and cognitive processing is also something that a lot of people struggle with. So although general intelligence amongst EDS and HSD patients is typically above average, the following problems can contribute to learning difficulties. Number 1, pain and fatigue can reduce attention and working memory capacity. Number 2, autonomic dysfunction such as POTS can cause cognitive brain fog, slower processing, and reduced stamina. Number 3, neuroinflammation and mast cell activation can exacerbate brain fog and word-finding problems. And number 4, sleep disturbances can lead to poor retention and executive dysfunction. These can mimic ADHD or mild cognitive impairment but are secondary to physiologic instability, not primary neurocognitive decline.
[25:09] What are some interventions that we can think about? Number 1, treat underlying dysautonomia and MCAS to improve cognitive clarity. Number 2, work on chunking, repetition, and multimodal instruction such as combining auditory and visual cues. Number 3, um, ask for accommodations for extra time for reading, testing, or note-taking. Um, next, noise reduction or tinted lenses to reduce sensory overload, and lastly, speech-to-text tools to bypass fine motor strain. A multidisciplinary evaluation can be very helpful. So working with a neuropsychologist can perform, uh, cognitive and academic testing that helps define strengths and weaknesses. You can work with an occupational therapist that will help you with motor planning, sensory integration, handwriting, and visual motor coordination. You can work with a physical therapist that can help you with core stability, balance, proprioception, and graded strengthening. Working with a neuro-optometrist or ophthalmologist can help with visual tracking, convergence, and oculomotor rehab. And lastly, educational psychologists or learning specialists can help you tailor your work or school accommodations.
[26:15] So Meg, I hope that was helpful information. Learning difficulties in EDS are so common and they often stem from motor planning, um, just like dyspraxia, visual coordination, like convergence insufficiency, and cognitive fatigue, not intellectual impairment. These reflect connective tissue related proprioceptive, autonomic, and neuroocular dysfunctions, and multimodal therapies can greatly improve function and confidence.
[26:42] Okay. Do we have another question?

[26:42] Shanti: Okay. So we have another great question for you, Maureen, who has been listening to your podcast since its inception. And she says the information you provide your audience is invaluable. And I would have to agree. She is asking about EDS and she writes in about one of her children. One of her children was diagnosed with hypermobility EDS at 15 and has dealt with a long list of complications, including eye issues like retinal lattice degeneration, which has required laser treatment. She wonders if eye health and ophthalmology could be explored more deeply on the show, since she hasn't really seen that covered as much related to EDS. Maureen also brings up dyscalculia, a learning difference that's rarely discussed in the United States and expensive to diagnose and treat. She's curious why there's such a limited access here compared to countries like France and Canada, where diagnosis intervention are more affordable and available. Some tricky questions in there for you.

[27:48] Dr. Linda Bluestein: Yeah. Yeah. Yeah. I, I, first of all, Maureen, thank you so much for the kind words. I really appreciate that. And definitely I do plan to cover ophthalmology more in the future. Please let me know if you have guest suggestions because we always try to find somebody with, you know, a high level of expertise. So if you have— Maureen, if you or anyone else has suggestions for an ophthalmologist to talk about eye issues in EDS, please let me know. Otherwise, Shanti has been working on finding someone and we have some ideas ourselves, but we're always open to suggestions.
[28:22] Okay, so let's talk about dyscalculia and how it relates to EDS. So first of all, dyscalculia is sometimes called math dyslexia, but it's actually a specific learning difference involving number sense and quantitative reasoning. So people with dyscalculia might struggle with understanding quantities, like what 5 feels like, sequencing or following steps in math operations, estimating time, distance, or money, memorizing math facts or formulas, spatial organization such as lining up numbers or keeping track of columns. And this affects actually about the same amount of people as dyslexia, 5 to 7% of the general population, which is really surprising because Maureen is right that there's so much less attention paid to dyscalculia than there is paid to dyslexia. So her, I really appreciate your question, Maureen.
[29:09] So why is this relevant in EDS and hypermobility? So many people with EDS or HSD have co-occurring neurodevelopmental traits, as we've just discussed. Contributing mechanisms may include visual-spatial and proprioceptive challenges. Joint instability and poor spatial awareness definitely can affect perception of distance, direction, and patterns. Working memory and executive function difficulties, things like chronic pain, fatigue, or dysautonomia can reduce cognitive bandwidth for stepwise tasks. Things like oculomotor or convergence issues like we just talked about, um, can cause visual instability that can disrupt spatial organization of numbers on a page, for example. And also we see things like cerebellar and cortical connectivity differences. Research suggests that shared pathways between coordination, timing, and numerical processing make these processes difficult.
[30:03] So what are some signs to look for? Trouble learning multiplication tables or with mental math, confusion about left, right, or directional concepts, difficulty estimating time, like how long will this take, anxiety when handling money, scheduling, or navigation. And adults, this can involve avoiding budgeting, difficulty following medication schedules, or getting lost easily.
[30:24] How can we support people with dyscalculia? In school or in work, we can use things like visual supports, charts, color coding, number lines, and manipulatives. We can use technology aids like calculators, phone apps, calendar reminders, and time trackers. I am so heavily reliant on all of these things. The time trackers, the calendar reminders, the notes apps, all of these things. Um, we can ask for extra time on tests and step-by-step instructions. We can pair verbal and visual cues that can help us narrate math steps aloud while writing them down. Clinically or at home, we can consider neuropsychological testing to confirm strengths and weaknesses. We can consider occupational therapy or educational therapy for visual, spatial, and sequencing skills. And definitely breaks are essential. This can help with fatigue, pain, or dysautonomia that can worsen math performance. So you definitely want to build in pacing and hydration breaks.
[31:20] We also want to normalize and empower people that are experiencing dyscalculia. We want to emphasize that dyscalculia is neurologic and not a reflection of intelligence or effort. Many with dyscalculia actually can excel in creative, verbal, and big picture thinking. And in the EDS community, these individuals often develop strong pattern recognition and adaptive problem solving in other areas. We also want to highlight the need for understanding, not shame. Learning differences are so, so common, and they're part of the neurodiversity spectrum. And I also wanna point out that even if someone is doing well in school, we should be keeping our eye out for these kind of problems. I wasn't diagnosed with ADHD until I was in my forties, um, but there were signs of it going back into childhood, but I did well enough at school, so nobody was looking for that.
[32:09] Okay, so let's talk briefly about how dyscalculia is diagnosed. Dyscalculia is diagnosed by formal testing by a licensed psychologist, neuropsychologist, or educational specialist. And these evaluations can include a cognitive assessment for IQ and problem solving, academic achievement testing, especially math calculation, reasoning, and fluency, working memory and processing speed measures, and review of developmental, medical, and educational history.
[32:35] So what are the diagnostic criteria? A diagnosis of dyscalculia is made when math performance is significantly below expectations for age, education, and intelligence. Difficulties have persisted for at least 6 months despite appropriate instruction. Problems interfere with academic achievement or daily life, and these issues are not explained by other conditions such as vision problems, lack of schooling, or intellectual disability. And this aligns with the DSM-5 criteria for specific learning disorder with impairment in mathematics.
[33:04] There are a variety of people that can diagnose dyscalculia, including neuropsychologists. They tend to be the most comprehensive and they often include cognitive and attention profiles. Um, I often recommend neuro-cognitive testing and neuropsychiatric testing for my patients because I feel like we very often miss ADHD, autism. We might miss, you know, personality disorders and other things that could greatly influence how people are interfacing with the world. And having that information could be super helpful. We also want to work with an educational psychologist. They usually focus more on learning and school performance. We could also have a school-based evaluation through an IEP or 504 plan. Or a private evaluation that's more flexible, but there's a higher out-of-pocket cost.
[33:49] Since Maureen did bring up cost, I want to mention that. So first of all, if you go through a public school psychologist, it's probably going to be free. Um, it might be hard to access this, but this could be available if learning difficulties affect educational progress. Um, but the results might take months to achieve the scheduling and the results. If you go through a private psychologist or neuropsychologist, um, like a licensed PhD. This could cost between $1,000 and $3,500. Your insurance may or may not cover it, but this could include full cognitive and academic battery of testing. You might be able to get this scheduled faster. You might get a more detailed report, which could be helpful not only for accommodations, but for things like, you know, determining other, other, um, modalities that you might want to employ. So that could be really useful. Um, you could also consider a university training clinic. Sometimes if you work with a graduate clinician that's supervised by a licensed psychologist, that could cut the cost down significantly to $300 to $800. Um, it could have a lower cost but longer waiting times. And lastly, there are lots of different online assessments that people can do. The cost of those is significantly less, like $100 to $400, but that would be for screening only and cannot be used for a formal diagnosis.
[35:03] Definitely check with your insurance because insurance coverage is going to vary greatly. Some plans will reimburse evaluations if coded as neurodevelopmental or cognitive disorders rather than purely educational. Some of the next steps that you could consider after diagnosis include educational accommodations such as extended time, use of calculators, tutoring, visual aids, multisensory math instruction. You could also consider therapeutic support, educational therapy, cognitive training for working memory, and occupational therapy if coordination is also affected. I would recommend a reevaluation every 3 to 5 years or so, or if educational demands change.
[35:37] So our takeaway here is that, um, math, time, and spatial reasoning can often be a struggle, and this is not laziness or lack of effort. It could be dyscalculia, a brain-based difference that often coexists with EDS and other invisible conditions. Understanding it better can allow us to build better supports and reclaim confidence.
[36:01] So, as you know, we end every episode with a hypermobility hack, and today I have two hacks for you. We're going to get to a neurodiversity hack in just a moment, but in the meantime, I want to tell you about a hack that I literally just learned yesterday. So if you're watching this on video, you probably noticed that my hair looks better than it has in the last few recordings. I just got my hair done yesterday. So my hairstylist knows that I always struggle with, um, being in the shampoo bowl. I don't know, Shanti, if you've ever struggled with that, but I have. It hurts. It hurts. It hurts. I have chronic neck pain and I literally, when I moved to Colorado, I went to a new salon and their shampoo bowl was the most uncomfortable shampoo bowl I had ever been in. And I liked the stylist a lot. She was really nice. I thought she did a really great job, but I didn't go back because the shampoo bowl was so uncomfortable.

[36:48] Shanti: Oh, that's bad. That's a bad one. It must have really hurt.

[36:49] Dr. Linda Bluestein: It was. It was really, really bad. And I've had, you know, neck pain off and on, but I can manage it quite well. And so I'm really concerned about being in a shampoo bowl like that and putting myself into a flare that, you know, is going to set me back. Right.

[37:06] Shanti: So, yeah.

[37:06] Dr. Linda Bluestein: So I really want to avoid that. So now I've been going to a new stylist and I've been going to her now for over 2 years. She's wonderful. Jess, if you're listening, you're amazing. And so when I saw her yesterday, she said, do you want to try going face down in the shampoo bowl? And she had just had a client who had had neck surgery and who could not at all go, you know, face up in the shampoo bowl. So what she did was she put a towel in front of the person's face and then she put towels around their neck and everything and then had them face down. And we're going to include pictures on the YouTube.

Shanti: Genius.

[37:44] Dr. Linda Bluestein: Yeah, on the YouTube. Yeah, absolutely genius. So even with her better shampoo bowl and using the padding, I've still struggled a bit with, um, with this. So like I get my hair foiled, I get my hair colored. I do the foil cuz it doesn't then touch the scalp. Um, but anyway, I always sit up while she takes all the foil out. Sometimes I have to take breaks in the middle. So if this doesn't work for you, those are other things to ask. Like, can I minimize the amount of time in the shampoo bowl? Can I take breaks? Um, et cetera. Um, so, and then also using extra padding, of course, also helps. But this face-down technique, so let me describe it. So you've got, you know, a towel over your, over your eyes and you need to hold it fairly tight without putting too much pressure on your eyes. The towel will get wet, um, and the back of your neck will get wet. So Shanti, when she was doing this, I was literally giggling the entire time because the water like just tickled my neck so much. And I was like, almost like screaming. I felt like people are going to just wonder what is going on back there.

[38:40] Shanti: I can imagine. Like, you're like, there's water everywhere.

[38:48] Dr. Linda Bluestein: Yeah. Yeah. My clothes didn't get wet, which was great, but it tickled my neck so much. So we'll include pictures on the YouTube so that you can see what, what this looked like. But anyway, so, so I, I propped my elbows in in the neck rest. So in the neck rest, instead of my neck, it's my elbows. And then my, and then my hands are over my face like this with the towel. Okay. Okay. Um, I did have to switch my legs. So like at one point I was on both knees, then I was on one knee. And I also was switching my back between like, um, I guess that would be cat, this would be cow, right? So cat, cow, cat, cow, right? Like that. So I was doing that with my back so that I wouldn't strain my lower back. Um, but it was much better for my neck and we got through it. And so I wanted to share that hack with everybody. What do you think of that hack?

[39:35] Shanti: That is a great one. I might, I might actually ask if I could try that because you know what, I've got like a lot of neck pain too. And like sitting in that is torture.

[39:48] Dr. Linda Bluestein: It is. Even when they put a towel behind you, it's torture.

[39:50] Shanti: It is torture. Yeah, it is torture. That's a good idea. Yeah. I don't know why it's so painful, but it is so painful. And it seems like no matter what I've done in the past, it's not less painful. So I'm, I was so excited to share this hack when this happened yesterday. I was like, yay, I can share this hack tomorrow. I love it. I love it. I think everyone, I think we all, we have to try it.

[40:10] Shanti: I'm trying it next time. I'll let you know.

[40:12] Dr. Linda Bluestein: Okay. Try it. Try it. Try it next time. And, and I want everyone listening right now, if you try this, please let me know. Or if you also have struggled with shampoo bowls. Please let me know if you have any other alternative ways that you have gotten around this problem. Please send us a message. Please message us on social media. Go to the, you know, the bendybodyspodcast.com website. We love getting messages on, on there, and that really helps us formulate the questions for these shows. So please give us your feedback. Let us know what you've tried.

[40:48] Shanti: Yeah, we love questions. Yes, we love questions. We love feedback. We love hearing from, from all of you. So thank you, thank you, thank you for those messages.

[40:56] Dr. Linda Bluestein: Okay, so the next hack we're gonna talk about is for people with neurodivergency, which includes me. I have ADHD and it's something that I did not know, as I mentioned, until I was in my forties. So, uh, it could, it could be a struggle for sure. And actually there was an article that came out today in Forbes. Um, somebody interviewed me about my ADHD, me, they interviewed me and another physician about our ADHD. ADHD and really wanted to focus on were there things where our ADHD actually was helpful. And I think for me, it actually is because in some ways it helps me to see connections between things that I think maybe some more linear thinkers might not think about. So, um, so that was a really interesting article that just came out in Forbes, uh, I believe today.
[41:40] Okay. So our hack for neurodivergence is externalize everything. So why does this work? Both neurodivergent folks and people with EDS often deal with executive dysfunction, fatigue, and sensory overload. When we keep too much in our head, this burns precious cognitive energy— energy that you need for pain management, mobility, and daily living. Shanti, this totally explains why I have— I have lists everywhere. Um, I have lists in my Notes app. I have— I have an entire— I have this entire, like, you know, I always keep clipboards in multiple places in my house so I can write everything down. So I I already was externalizing a lot of things, but I think there's gonna be some other, hopefully some other tips in here that people are gonna find helpful.

[42:27] Shanti: Absolutely. Yeah.

[42:27] Dr. Linda Bluestein: Okay, so what can we do? We can use visual cues instead of mental lists, things like sticky notes, whiteboards, or phone widgets that you see every day. And I will leave things sitting out as a reminder that I need to do various different things, especially if it happens when I'm like going to bed at night and I don't want to turn a light on to write something down, I will instead like put my toothpaste in a weird spot so that when I go to reach for my toothpaste and it's in this weird spot, I go, wait, why is my toothpaste in this weird spot? Now, of course, that's not a specific cue. Like I don't, I have to try to, I have to remember why I did that, but at least it's something that is a cue, right? So, so that often helps.
[43:10] Okay. Also, we can create body double systems, work alongside someone virtually or in person to help us stay on tasks. We can build pre-decision kits. We can pre-pack our medication, braces, snacks, or compression gear so you don't have to rely on memory or last-minute energy. So I always pre-pack my supplements, and when I run out, if I don't have time to like do the big pre-packing, I get so stressed out because then I have to remember every morning, every evening, okay, which are all the things that I need to take? So I'm I'm a big, big fan of prepacking the medication and supplements. We also can automate routines with alarms, Alexa reminders, or if this, then that triggers. For example, if the heating pad turns off, then it's time for a hydration check. Shanti, have you ever read the book Atomic Habits?

Shanti: No.

[44:02] Dr. Linda Bluestein: Oh, it's a fantastic book. And actually that book is a— they totally stress if this, then that. Um, so they like it. Yeah. So they, they talk a lot about like small habits and how they can make such a huge difference in your life. Atomic Habits, that's where you get the name, small, small habits. But also, um, if you take a habit that you want to add and if you connect it with another habit that you're already doing, it's going to make it more likely that you do it. I like it. I think I'm gonna have to read that one.

[44:31] Dr. Linda Bluestein: Yeah, it's, it's in my favorite books list on Amazon. So yeah, definitely check that out. And you can also pair this with micropacing. Take breaks during your activities into smaller, more gentle chunks that can respect both your joints and your nervous system.
[44:46] Shanti, thank you so much for being here. It was really fun. Thanks for having me. I love being here with you and answering all of our fans' questions and seeing, you know, all the fun things that they write in and share. Yes, yes. We have the best fans. Thank you so much to each and every one of you for sharing the podcast, listening to the podcast, and giving us your feedback and your questions. We really, really value each and every one of you.
[45:09] Okay, well, that's it for today's episode. We love your fantastic questions. Please keep sending them in to bendybodyspodcast.com for a chance to be featured in a future episode. You can help us spread the word about joint hypermobility and connective tissue disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions. Did you know that I also offer one-on-one support for both clients and healthcare professionals? Whether you're living with a connective tissue disorder or caring for someone who is, I've got your back. Check out my coaching and mentorship options on the services page at hypermobilitymd.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, Twitter, or LinkedIn at hypermobilitymd. You can find Human Content, my amazing producing team, at humancontentpods on TikTok and Instagram. You can also find full video episodes up every week on YouTube at Bendy Bodies Podcast.
[45:59] I'm so glad you're enjoying the Bendy Bodies podcast. We love bringing on guests with unique perspectives to share. However, these unscripted discussions do not reflect the views or opinions held by me or the Bendy Bodies team. Although we may share healthcare perspectives on the podcast, no statements shared on Bendy Bodies should be considered medical advice. Please always consult a qualified healthcare provider for your own care. To learn about the Bendy Bodies program disclaimer and ethics policy, submission verification and licensing terms and HIPAA release terms, or if you have any questions, please visit bendybodyspodcast.com. Bendy Bodies Podcast is a Huma Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.