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Thank you so much for the comment and the extremely kind words!

Thank you so much for your comment. Can you share more about using oxygen via cannula at night? I use saline nasal gel also and find it very helpful. I just wish there was a way to administer it without a plastic bottle (regular saline too).

@bendybodiespodcast I did a breathing study that showed my oxygen levels dropped below 85%, cumulatively, for 70 minutes that night. So I was put on 2L oxygen at night using a nasal cannula. They said I didn't stop breathing enough times for sleep apnea. However, low oxygen can lead to heart problems just the same. I feel I sleep more deeply with the oxygen and don't hurt as much as when I travel and don't have it with me. A couple of times, I've flown to my sister's, and the medical equipment rental company let me borrow a concentrator, but they don't deliver and have limited hours. That means I either have to rent a car or my brother-in-law has to take off work for pick up/drop off. If I drive, I can drag the big beast along, but it's not worth dealing with it for short trips.

@bendybodiespodcast I use Ayr gel from a tube. If I have bag congestion or a bad smell in my sinus, I mix up saline and use a squirt bottle designed for the purpose.

Thank you for your question. Unfortunately, anaphylaxis CAN occur without IgE activation.

So how do we manage trialing foods and discovering our food triggers? Will all mcas patients experience anaphylaxis?

Not all MCAS patients experience anaphylaxis. The question of trialing foods has come up a number of times so I will cover that in a future episode.

I'm already dying to listen to it!

@@felicityporter8375 I hope you will find it helpful!

Yes, latex-fruit syndrome is serious and anyone with latex related food allergies should be under the care of a knowledgeable physician!

@bendybodiespodcast Had mouth-bleeding from a food and the allergist's nurses who administered allergen shots had zero clue as to why. Should have brought it up with the allergist...

Yikes! I am so sorry to hear this. Any concerns should definitely be brought up with your care team.

@bendybodiespodcast Thank you. Took me a long while to figure it out. Here it's an uphill battle and living on and island compounds it.

Thank you for your comment and I will add alpha gal to the list of things to mention soon!

Thank you for your comment. I took BPC157 (injection) for about 3 months a few years ago when I was recovering from an injury and it seemed to help. I stopped it though because I did not feel like there was enough benefit to keep taking it. From what I had read prior to starting it, BPC157 seemed to be pretty safe. We desperately need more data to know how effective peptides are and when they are most helpful (if at all).

You are most welcome and thank you for your comment. I have never heard of someone getting tubes at age 40! I will add central sleep apnea to the list of things to mention in the near future.

Did you have a chance to watch the interview with Dr Hansen yet? th-cam.com/video/IbMBZWd6Ilg/w-d-xo.htmlsi=lh47tks0E1H0w1qi

Also, my functional doctor recommended never to use steroid nasal sprays because I have a history of mold illness/fungal infection in sinuses.

And I use nasal strips almost every night, it helps my sleep 😊

Thank you so much for the kind words!! It means so much to me. Did the sleep apnea improve when you were a bit farther out from surgery? Do you have a favorite Bendy Bodies podcast episode?

@@bendybodiespodcast I find helpful information in all your episodes Dr. Bluestein. Thank you so much.

@@lisabreton9236 thank you so much!!!💜💜💜

Thank you for your comment. Have you found anything that helps?

@@bendybodiespodcast not particularly. I am not sure what increases their occurrence or decreases their occurrence. As a dental hygienist, I remember in practice a patient coming in with them and my own very apt. Dentist /boss knew nothing about them and didn’t agree with me but sent the patient to an oral surgeon..

@@lisabreton9236 fascinating. I remember when I had them being so confused about what was going on. I had never heard anyone discuss tonsil stones before and am SO grateful mine are GONE!

I am so sorry to hear your husband's story but greatly appreciate you sharing it with me! Rib problems are SO painful but so often missed. Wishing him a speedy recovery!

I have very small eustasian tubes so have had ear problems also. We can have plenty of other problems that are not Ehlers-Danlos Syndromes related 😱😱😱

Thank you for sharing that!

Thank you so much for your comment and excellent points! Diagnosing younger children can be challenging but yes, crucially important to their quality of life and ability to function! And balancing this as the mom is SO tough! The new guidelines address these challenges and specifically state "Prepubescent children cannot be diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) under the new guidelines." There did, however, create multiple categories of HSD to try and cover different presentations. www.ehlers-danlos.com/diagnosis/new-diagnostic-framework-for-pediatric-joint-hypermobility-v2/

​@bendybodiespodcast That makes so much sense now because she was diagnosed with HSD, even though I was diagnosed with hEDS.

You are most welcome and thank you for your comment! So many of us have sinus problems but do not even realize it is not normal! Have you watched any other episodes?

Very interesting. Have you found anything that helps? What did you think of this episode?

@bendybodiespodcast The stones are few and far between, so I haven't really worried about them. I've had Long Covid since 2022, so have been working on a dysautonomia/PoTS diagnosis. Cannot be upright, sitting or standing, more than 10 minutes or so. My ENT also told me I am not allowed to blow my nose, as the reason I was seeing her was because I had managed to give myself a black eye from blowing it too forcefully!

And this episode was excellent, like they all are, but was definitely of special interest to me. Haven't heard/read a lot of ENT hEDS-related info.

@@truecrimenana say WHHHHHAAT? What are you supposed to do if you cannot blow your nose? I understand after surgery but otherwise.... wtf????

@@truecrimenana thank you so much for the comment and the kind words! This episode definitely resonated with more people than I expected! I am thrilled you found it helpful!!!!

Wow! I am so glad your surgery was so successful and thank you for your comment! Have you had a chance to watch any of the other episodes?

I stopped my Nasonex last year and got worse, so I am sticking with a steroid nasal spray regardless of how bad it is for my collagen. I've been using them for 32 years, but I have both allergic and non-allergic rhinitis. They actually worked great for me until I developed chronic sinusitis, which overrides everything. Good luck.

Thank you for sharing that. I used to be on steroid nasal sprays but now do great without them. It is so important to consult with our own medical team and do what is best for each of us! Have you watched any other episodes?

I really appreciate your comment. Will you come back and let me know how things went?

Thank you so much for your comment and extremely kind words about the channel. It is so important to share credible information about these complex conditions that are so often neglected leaving people feeling hopeless and with despair! Do you have a favorite episode?

Sore throat, sleep apnea, failing to swallow fully so I cough, or have water swirl back out the mouth, the feeling of a sore lump on the front of neck/throat near the thyroid, hiatal hernia, sinuses with a permanent state of infection, and thin, single nostril thin discharge, etc have all been issues. Had tonsils removed as a child. Find I have fewer infection issues if I eat moderately spicy food a few times a week, especially around or before noon. My eyes water, too. I'm the only person I know that tears up from spicy food...

Yes Dr Russek focuses now on education but there are other great physical therapists as well and I don't just mean the one listed in directories. Have you listened / watched any other episodes? I have interviewed many physical therapists. In the episode with Dr Lilian Holm, and the one with Dr Wendy Wagner, they give tips for finding a PT!

​@@bendybodiespodcast I think I've seen the one one featuring Dr Wagner. I sure appreciate the reminder and also the tip to watch the episode with Dr Holm! Thanks so much for all you do!!

@@katherinetkillian3176 you are most welcome and your feedback is truly appreciated. We are conducting a survey right now of listeners so please visit the website to share your thoughts and enter to win a free session with me if you want. www.bendybodiespodcast.com/

Thank you so much for your comment. We stop reporting our symptoms because we just don't want to deal with being dismissed anymore. I talk about that in my newsletter as well. The one today on Substack has a new graphic I created. I would love it if you would be willing to share that.

That is a question that only the surgical team can answer. Sorry I cannot be more helpful.

Thank you for your question. Most referrals are initiated by the PCP. I can ask Dr Herbst what kind of specialist would normally see these patients. Unfortunately, I don't think these problems fit neatly into one specific wheelhouse.

You are most welcome. Were you able to watch the entire interview? What part was most helpful?

The 3D is really exciting! I am very happy to know that research of EDS is happening in labs, which gives real HOPE❤! Also very enjoy to know the two young people are very passionate especially the male “ Double D” in future. And touched by their own life stories and feel connected. Life is not very easy, but the young scientists is working hard.

@@michellezhang6638 totally agree! It was so inspiring speaking with Jeevan and Delaney. They are our future!

Unfortunately, I do not know of anyone to recommend. Sorry I can't be more helpful. I hope you found the episode helpful!

Thank you so much for the extremely kind words. Comments, follows, and reviews are so appreciated as is of course sharing the podcast. It is so important for people to get the information to improve their care and recognition amongst healthcare professionals (and family / friends:).

Tarlov cysts and perineural cysts are the same and some of them are foraminal. I hope that helps. Have you listened to any other episodes?

@ not yet but I will.

@@takeya2224 awesome and I hope you find them helpful!

Agree! Lara and the Society are doing amazing and important work! Thank you so much for leaving a comment. Have you been able to watch / listen to any other episodes?🎙🧬🦓

@@bendybodiespodcast Actually, yes! I listened to the episode with Dr. Hakim and found it very interesting! It was a question that was on my mind for a long time, concerning the discintion between hEDS en HSD, and the current state of research around it.

@@SFae-dd6vp I am so glad you enjoyed that. I asked Dr Francomano how she handles patients with historical joint hypermobility who otherwise meet hEDS criteria. If you haven't listened to that, I would love to hear what you think after you do. 💜🧬🎙

Yikes! I am so sorry that happened to you. How are you doing now?

@@bendybodiespodcast Thanks, you kick high and wide, because you can, right? (ha!!) All good, now - resistance training for 40 years so have skills to adjust. Don't feel as unsure now that I know how to lock into joints before doing reps:) And I don't work at the full range of extension like I used to. Thanks!

@@HelenDriscoll you are most welcome and I can totally relate. What do you think young bendy people need to know? It can be so hard to modify behavior BEFORE you have run into problems!

@@bendybodiespodcast Interesting question for a few reasons- young bendys may not be as good at trad sports because of the proprioceptive issues but good at bendy activities like dance or yoga, which can exacerbate joint problems. I remember being so happy I could stretch further than others in my aerobics class, for example, since I'd spent years feeling less athletic/strong than my classmates. So you do more of what you can do, which might not be so good, ultimately. I do think everyone should know their genetics b/c then you can figure out work arounds. (I don't make the enzyme that builds fast twitch muscle, but I can build more fast twitch with resistance trainings) Maybe kids won't understand or they might internalize the information in an un-useful way. If I knew what my starting point was, in terms of athletics and physicality, it may not have taken me so much effort to arrive here. Funny, the first person who pointed out my sway back and high ribcage was a friend who was a world champ kickboxer/kung fu black belt. (but she is trained to find physical vulnerability!!) She cued me in to why my kick didn't have much power.

Thank you for that @HelenDriscoll! How did you find out about the fast twitch situation?

I don't know but Dr Hansen's office probably does. Thank you for your comment!

Ugh! I am so sorry and hope you are doing better now!

Thank you so much for the extremely kind comment. It means the world to me and keeps me going! Do you have a favorite episode or tip?

​@@bendybodiespodcast I think my favorite episode is the one with with Dr Bolognese. That said, there's great info and action points in all of them!

@@katherinetkillian3176 I am so glad you enjoyed that one. It was LONG but there was a LOT to talk about!!!!🧬💜🦓🎙

@@katherinetkillian3176 I really liked that one also and am so glad you find actionable items in all of them. That is the goal! 🎙🦓🧬

In my experience, even docs that understand the triad often don't fully understand EDS. I'm sure I don't help as I'm not great at explaining it so that one can comprehend it, at least in a general sense. For me, work on that is ongoing.

@@katherinetkillian3176 I also find that to be true. Each of these conditions is so complex on their own that it is hard to be up to speed on the others. Have you seen the episode about the nonprofit documentary on the triad I am making with a team of HCP? Each of us has slightly different expertise which helps!

It can be very challenging. Fortunately, more healthcare professionals are getting educated by this podcast and other resources so hopefully that will improve. In the meantime, there is a lot that can be done even without an official diagnosis. I hope you listen to the podcast for more tips!

I order imaging for my patients when it will change management.

Thanks for sharing!! I am so glad you found someone!

Thank you so much for the kind words. Have you listened to other episodes?

I've watched many! Thank you so much for educating viewers!

You are most welcome and thank you for watching. The more people who watch, the more TH-cam will suggest the videos to other people.

Have you listened to / watched episode 94? www.bendybodiespodcast.com/94-support-and-bracing-for-hypermobile-joints-with-susan-chalela-mpt-and-guest-cohost-scott-borj/

I haven't seen a physical therapist, but would love to work with one who understands hypermobility and its complications in the way you present these things here!