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Would you consider doing a segment on bracing? When, where and what types are appropriate?

Have you struggled to find a PT who understands hypermobility and connective tissue disorders like Ehlers-Danlos Syndromes?

THANK YOU FOR EVERYTHING YOU DO! AM "ALL OF THE ABOVE". I have a rough time with diagnosis because I am not in constant pain. thank God I am not, but I am out in the abyss too. I am in Northwest Ohio. Do you know of a data base for me to research for a PT "in the know" here? Or perhaps you can give a referral. I have been searching for a long time. Thanks, C.C.

I listened to this episode a day or two ago and then I listened to the Tarlov Cyst one and felt compelled to come here to comment. Dr. Bluestein- you have my complete admiration now even though I already was a fan of your’s and in awe of all that you do day after day to help us EDS’ers. You have been through so many serious physical health issues and have overcome so much and learned how to improve your health in such a huge way that you can continue to accomplish so much… WOW! I just want to bow down to you and say THANK YOU again and again. #ZebraStrong

Wow I had no idea you had a tarlov cyst! I rarely see kt discussed in the EDS community online so im really glad you decided to talk about it, especially with one of the top surgeons. It turned out I had tethered cord as well and Dr. Schrot was able to treat both which was fantastic. I only found out about the tarlov cyst after I finally convinced my neurologist to at least refer me to get a lower lumbar/sacral MRI to check for tethered cord which is wild because he had already written me off before then and even after seeing the imaging, dismissed the results but also had no other ideas for what my urinary, neurological, and other symptoms could be despite it being fairly textbook for tethered cord and/or a sacral tarlov cyst. 🤦🏻

It's been an absolute nightmare living with this issue. I had an MRI of my whole spine because I was having CSF leak symptoms and feeling very unwell. I was revealed I have Tarlov Cysts on every level bilaterally of my spinal nerve roots. I have pain in different areas. I had two Decubitus Myelograms to rule out a CSF leak via a cyst ( venous fistula) nothing definitive was found but I still very very unwell. I don't have any headaches but feel unwell being upright sometimes a d the Thoracic back pain keeps me in my bed more than 50% of the time. My sacral area also is bothersome. I had an in person consultation with Dr F in June and he identified a sizable cyst in my Thoracic area that could account for my symptoms. I flew back to my home state and I am having an issue finding a provider to perform the DNB for me. In the mean time I had a cervical disc replacement that has been nagging me for years and still continue to see my pain management practice that has been helping me with my whole spine pain until I can get some real help. It's hard knowing you have a spine full of them and may require more than one surgery. There is a lot of medical gaslighting and the mental and physical trauma dealing with the dismissive attitude from Drs, the stigma of taking opioids and just the day to day struggles and suffering I endure. I can't work or do much of anything anymore.i still believe there is a possibility of a leak somewhere but not wanting to risk any more invasive procedures. I had my DNA sequenceced to shed some light on a possible CTD but I'm not s geneticist. My naturopathic Dr put in a referral to one in a larger city near me. I did have a telehealth yesterday with a anesthesiologist who will do the block. I just need to send him my discs so I'm hoping to head back to Dallas to perhaps have the surgery,get to a place I have less pain and a bit more function. It's been a difficult set of events and invasive testing and it's a mental assault to jump thru all these tests and hurdles. I'm very depressed and losing hope. I feel my case is complex and trying to get any help seems out of reach. I know that I will never have complete healing. I'm trying to accept that fact.

Excellent! Two of the best EDS resources!❤❤

THANK YOU THANK YOU THANK YOU. This podcast has answered so many of my questions and validated my physical symptoms. My recent MRI shows an expansive TC that has grown since the first MRI, 5 years ago. However, as noted by Dr. Feignbaum and you, it was noticed but not included in the report,

Has any surgeon from Brazil learned this 3.0 technique?

Motility can be VARIABLE. Seems like it only activates every few days, and then suddenly it's on hyperdrive for a few hours. Any ideas why that is occuring??

All of this is so fascinating. Because with ADHD it's already a struggle .... just eat, damn it!! But then GI problems leading to restrictions of what I manage to eat are really having a bad impact. So hearing that mind-shift of: - change how you eat it - change how much of it you eat These are huge. I recently found myself devastated over struggling with salad I've been eating for years and frequently. Cause surgery + UTI loop lead to 7 rounds of antibiotics within half a year ////orz//// and my gut just "Nope"-ed out on me on things I used to eat. Then I noticed that I COULD eat my salad but only small portions. And now I can have bigger ones. I had figured that much out but this episode brings my attention how there's an actual importance to how I can re-introduce and modify what had already worked for me. I'll be experimenting more 🤩

Have you adjusted your diet to combat your hypermobility related symptoms?

Another great one. Thanks Linda. Did she send you the red flags table from her book you two talked about in the 15 to 20 minutes section?

So...the timeframe. Best to get treatment at about a month. Does that mean those of us with chronic pain are out? Or, might it work with a new injury on top of an old injury? I've been in pain for 45 years. I also fell a few months ago which has resulted in my 3rd shoulder surgery and potentially my 4th hip surgery & possible THR. I would love to avoid surgery, but don't want to pay a ton for a low likelihood of relief. Thank you for this information!

This is a good idea!

Heard one doctor talking about how MCAS could trigger hypermobility instead of the other way around… It’s very interesting to hear different studies and perspectives.

Yes, thank you again for helping so many of us. I’ve mentioned before that mid 2023. I was diagnosed with HSD (probably HEDS). Approximately 2 1/2 years ago my now 40-year-old family member had a large brain aneurysm, then they discovered multiple in her spleen. Once she recovered from the brain aneurysm, they had to do a very extensive removal of her spleen, piping the aneurysms because there were so many it must’ve been engorged with blood, too much for her to lose during the surgery. Now they were watching something in a lung blood vessel, and they found another aneurysm in her brain forming on the surface ther side. She has been on Medicaid because of these issues and psychological issues. She went to a geneticist within the last two years, but they never gave her any diagnosis of vEDS. or HSD/heds. Her fingers bend backwards and her hands look like they are those of an 80 year-old. I can’t believe she’s not gotten a diagnosis and I don’t know what more to do to help. They are watching her blood vessel issues closely, but it’s been a very scary route for our family. Her two daughters have extreme flexibility in their fingers. I’ve never looked at their other joints, but I’m concerned that this could be going undiagnosed for them. Looking back I think my mom had this as well. She passed away four years ago from a hemorrhagic stroke. (Also had tachycardia, major GI Issues, random body pains, etc.. This family member has also had open heart surgery at age 8 for large atrial/septal defect. They are watching her aortic valve closely for years now. Any suggestions/thoughts?

Your interviews are always so packed with amazing content! It inspires hope that inch-by-inch all these pieces of the puzzle may help restore a quality of life. It is also hopeful that PCPs can find easy to understand explanations on your site, which has become something of a virtual library. Thank you so very much for the work you are doing!!!

Have you or someone you know faced challenges in getting an accurate diagnosis related to symptomatic joint hypermobility?

Thank you for your podcast and for sharing your experience as a EDS fellow and specialist. It is so helpful. After listening many of your podcasts, I have talked to my NHS doctors, here in UK, about Naltrexone. They are not specialists in EDS and do not want to prescribe it to me. It is unlicensed in UK. I recommended your podcast to my doctors and have printed some papers explaining the benefits of Naltrexone on EDS patients. They are not willing to read it and learn from it. They prescribed Amytriptiline for pain starting at 10mg. It doesn't help me and I don't want to increase it as it gave me so many Dysautonomia symptoms.

Found this very helpful. Thank you

Great listen. Except. Sick of hearing about how great vit. D is! Always gives me anxiety. Always. When I tell others with EDS/HSD this, I feel like I'm getting gaslighted all over again, as if they forgot we're each Zebras on a Spectrum. (Yes. I have MCAS too. And suspected POTS).

Alo Oh goodness you had such low Vitamin D, too? My last one was 10 and my GP said "there's no lower than 10" (with that lab, I suppose) and he sounded like that's a first for him 🙈

Kinesiophobia is so real 😭

What did she do tho?

I love this, thank you. You’re giving me hope

Thank you Dr. Linda …I’m beyond grateful for your videos and shared experiences, from one bendy body to another, Thanks from Australia

Have you ever had to experiment with treatments for your chronic condition?

I'm listening to your story now. It's so good to hear. Thank you for putting it out there and being so vulnerable while sharing your experiences.

how does anyone afford? I can't get care in Canada but can't afford US care.

I was diagnosed with EDS this year and have been trying to help my mom this year with her issues now that I know whats wrong with my body. But I have been trying to get her tested for EDS cause she has all these same issues, and now shes getting nodules in her lungs. This info has bene helpful

I got arachnoiditis years after my meningeal cyst. Surgery. The cyst has to be inside and outside the spinal canal to get arachnoiditis.

This is the first time that my MRI of lumbar spine reported the presence of a " mild perineural cyst.". Aka a tarlov cyst...sigh. I guess it has been present.but not mentioned. I have been experiencing CSF leak s/SX for the past over three years and have felt like I've been relegated to hell. I have been told I do not have a leak.even though the only imaging that showed a leak was a cisternogram that showed contrast fluid outside the thecal sac.. all other CT scans, MRI's did not show a leak. Brain scans did not show leak sequelae. I had given up as the neurosurgeon I saw, insisted the cisternogram imaging was an anomaly... However just continuing to live with the s/sx of a CSF leak as I mentioned is hell.so....I asked my PCP to reach out to Dr. Andrew Callen and I will see him at the beginning of December. Thank God

I am super thankful for the timing of this episode! I wish that the connection between Tarlov cysts and tethered cord syndrome would have come up, but this is still extremely useful. I've been dealing with lumbar back pain for many years but about 4 years ago it went from annoying to life altering. It is this pain, coupled with several other complications, that finally took me over the edge where I could no longer just avoid doctors and "push through" anymore and set off my serious health diagnostic journey. Now with hEDS, POTS, MCAS, and many more diagnoses confirmed, I still haven't nailed down the diagnostic cause for the lumbar pain, sciatica, pelvic dysfunction, and leg numbness and burning (also intercranial pressure headaches, occipital skull/upper cervical stretching pain). I have already seen 1 spinal surgeon that told me that nothing looked "too problematic" but that I definitely have spinal arthritis with calcification, minor spinal stenosis, degenerative disc disease with narrowed and slightly bulged discs. I asked about possible tethered cord or complications of stenosis being more severe due to the hypermobility and was told that they didn't have the expertise to address these issues. I'm seeing another spinal neurosurgeon later this week for a 2nd opinion. While going over the paperwork I received from the first doctor, I see a note on my MRIs that states there were several Tarlov or meningeal cysts observed, despite no mention of these during my visits with the first doctor. This will definitely be something I can now follow up on and ask about. Thank you Dr. Bluestein and Dr. Feigenbaum!

Have you had a pain block procedure in the past?

When I was in my early 20's I had a cyst on my lower left side of my spine. It was big enough to see and it was causing me sciatica pain. This was 30 years ago. My family doctor wanted to drain it in his office. I was too afraid to let him do it because it was on my spine. So I left and just dealt with the pain. Eventually it went down on its own. Now 30 years later I'm finally diagnosed with Ehlers Danlos. This is just one of the many weird things that I have gone through that I can point to eds.

What's helped me the most is realizing that I am not my body. I am the person observing my body go nuts and hurt. Sometimes it is scarey and I wonder "is this the way it will be forever?". But I catch myself. I refuse to catastrophize everything. I remind myself that the future is unknown. I can make changes to affect the outcome. So I observe my body and then distract myself. Often when I come back to it, the body symptoms have changed. It's such a roller-coaster

it is sad as I have been taking Meloxicam for 17 years. I started out low dose and not every day but the older I get I am taking 15mg daily. I also take Vitamin D and Turmeric daily and walk and do other exercises. But now at age 66 I have tried to back off on the Meloxicam, but the pain all over my body, is so bad that I can't function. Also, HRT, is important to manage some of the types of pain.

Amazing informative Interview. Thank you so much

What if your body is self fusing...I don't know of hEDS providers in Washington state...

Do you feel comfortable speaking up about your body in rehearsals?

😢 I've had to give up my practice 😢. I'm a yoga teacher. It's been devastating if i really stop and allow myself to think about it 😔. I've practiced since I was 16. I'm 60. The supportive and stabilizing muscles... Just DON'T. And then it's a domino affect. I've tried everything. All the body work, tools, everything. I want to be able to continue walking, so I've minimize my physical practice. 😢

Thank you so much, Dr. Bleustein! Do you know of anywhere reputable in the Asheville, North Carolina or Greenville South Carolina area? I see pain management for a failefd three disc ACDF( I believe due to my HSD). Also, I have Botox injections for migraines. No one ever said I had CCI, but it is exactly how I feel when I hear your and your speaker’s descriptions. I’m looking for alternatives rather than more ablations, more injections and Botox every three months for migraines. Thank you in advance.

Thank you 🙏🌻💜

Only if I modify most every pose and listen to my body

Has yoga been beneficial for your hypermobility?

I was doing yoga twice a day, it made me feel so good physically & mentally, but then one day I woke up feeling like Gumby and in extreme pain. Fast forward to my hEDS diagnosis (along with MCAS, hyperPOTS, MCS..) I cannot do yoga or barely stretch anymore at 46; I miss yoga so much.

This isn’t directly related to but wanted to ask where/if one can find information on HRT pros and cons for hEDS patients.

Do you have experience with regenerative medicine? I would love to hear your stories.

It is so hard (almost impossible) to get in to see a geneticist so this information is crucially important for how to best obtain more (credible) information for yourself.