8
Aug, 13
128
COMMENTS
Kenneth Goldschneider, MD, FAAP

About the Author Kenneth Goldschneider, MD, FAAP

Kenneth Goldschneider, MD, FAAP, is director of the Pain Management Center and is a leading expert in treating complex chronic pain conditions in infants, children and young adults.

Comments:

  1. Is anyone aware of a doctor, or clinic, or PT or OT who treats EDS in New York City or Long Island? My teenage daughter has EDS and it causes pain in most parts of her body, including her hands. She has been unable to write for 18 months, so that area is a priority for her. I appreciate it.

    Mike - September 26, 2014 at 1:43 pm Reply
  2. My 6 year old son was just diagnosed with type 3 EDS. I am looking for physicians that work with pediatric EDS patients in the San Diego area. Thanks for your help.

    Emmanuel Hunter - October 2, 2014 at 9:41 pm Reply
  3. So glad to see someone talking about a pain. I went to med school at UAB and trained at Mayo Clinic. Had to give up my practice finally due to EDS with multiple complications including spinal disease, migraines with micro infarcts, GI dysmotility, autonomic instability, etc. autoimmune arthritis, and narcolepsy among other problems. I made it 40 years without taking daily pain meds. I have and continue all other modalities you list for pain control. but it gets to the point where not taking pain medication daily is impossible. I know you are referring to kids. If I had had any sympathy or assistance or recognition of disease from anyone when I was younger it would have made living with this so much easier so I applaud you. Currently, most states are experiencing hysteria regarding use of pain medication even in clearly appropriate situations. In west TN where I live, it has become impossible to get appropriate care. Parents who have a child with EDS in pain. please look into your child’s future and know that if you want them to be able to have any relief from severe constant pain. you need to get involved in the fight to keep pain medication available for those without cancer who legitimately need it, can prove they haven’t and won’t abuse it, and follow all the rules. The other meds: antidepressants. anti-epileptics, etc., have serious side effects for many and don’t relieve pain at all for many but because they are not considered habit-forming, they are all that is likely to be offered. People in severe pain don’t get high from opiates, they just have less pain. Please excuse bad typing and grammar as sending this message is a real stretch for me. Thanks all and best!

    Holly - October 14, 2014 at 6:10 pm Reply
    1. Thank you so much for writing this Holly!
      I am currently in medical school and trying to find someone who can make the diagnosis- doctors comment on me being very flexible, but still say chronic pain is idiopathic. Mother has MCD, many generations of connective tissue issues and joint disorders on both sides of family, brother who would have exceeded 9 on B scale, brother with CRPD, nephews with loose joints, etc. Surprised when we learned about EHD in school, and touching thumb to flexors being abnormal. Everything was fine growing up, multi-sport athlete, dancer, artist, but now chronic pain and fatigue make everything harder, some of my favorite things impossible; before pain meds it got to the point that I would lay in bed acutely aware of how much energy breathing took, Dilaudid makes it possible for me to get out of bed, things are still hard, but at least possible now. Felt like the movie Awakenings getting pain meds, I get 2 hrs of moderate relief where I get to feel almost like myself again. Pain changes everything.
      Not all doctors will be good ones, Rheum, Pain specialists, PT, I’ve found ones that were terrible. If anyone reading this is in pain, don’t give up until you find a doctor who listens to you.
      Holly, Everything you said was important for me to see, Thank You.

      KS - January 10, 2015 at 3:51 pm Reply
  4. I have EDS type 3 I’m 14 and looking for answers right now I’m going through a series of test to find them, and be honest is there an answer? Will I actuality get help or am I just wasting my time?

    Haley Buchanan - October 28, 2014 at 12:59 pm Reply
    1. Fortunately, at 14 you have a diagnoses. I’m 57, and recently I found a rheumatologist who confirmed I have EDS-hypermobility. I knew I had it 4yrs ago after a friend of mine did research and found we but had it. I still research and do as much as I can to help myself and bring awareness as many are mis-diagnosed. Since your young you can do as much as you can to protect yourself from injuries,ie. avoiding high impacts sports, strenuous work and activities. See a rheumatologist and cardiologist to get a echo-cardiogram to see if you have mitra-valve prolapse and periodiacly have your arota checked. Finally do a lot of research because many doctors no little or nothing about EDS. That’s my best advice. If your on Facebook, join a EDS or Zebra group there sometimes called. God Bless you.

      Toni

      Toni Ivory - November 25, 2014 at 4:33 pm Reply
  5. Do you know any PHysical Therapists, Pain management doctors, etc. that specialize in EDS in adolescents in the south Florida area (West Palm Beach, Palm Beach Gardens,etc)?
    Thank you!

    Alissa - November 6, 2014 at 5:49 pm Reply
    1. Hi Alissa,

      I reached out to Dr. Goldschneider, and he regrets that he does not have any contacts in south Florida for the specialties you mention. However, he did mention that you might want to try contacting a genetics clinic in your area for a recommendation.

      Rachel Camper - November 11, 2014 at 11:41 am Reply
  6. I’m an adult who fits all of the criteria for EDS vascular type. I’m currently being worked up for RA and vasculitis, but none of the tests come back abnormal. I’m in the Cincy/NKU area and wondering who I should see for this disorder. My family doctor doesn’t really know much about it. My condition keeps getting worse and this seems to be something many docs are not familiar with.

    Nicole K - November 12, 2014 at 9:14 pm Reply
    1. Hi Nicole,

      I reached out to Dr. Goldschneider and he recommended that you contact someone in our Connective Tissues Clinic in genetics to see how they might be able to assist you. They can be reached at 513-636-4760 or skeletaldysplasiacenter@cchmc.org. More information can be found on our website: http://www.cincinnatichildrens.org/service/c/connective-tissue/patient-referrals/

      Rachel Camper - November 14, 2014 at 8:21 am Reply
  7. I’m so happy to see this site! I am 52 now. When I was 39, I was diagnosed with a heel spur. After heel spur surgery, the pain from the incision was so intense, I pulled out the stitches. The podiatrist sent me to a neurologist who dx’d idiopathic neuropathy. I didn’t believe him. I’ve been on a 12 year quest to find out what this is.
    I took a CRP class from a lady whose Mom had EDS. She saw that I was in pain, asked my symptoms and told me about EDS.
    How does one go about getting a diagnosis? I had never heard of EDS and I have been in the medical field for 20 years. I have an appointment with a Geneticist 4 hours from me in April.
    I would like to get help before April. I have trouble discerning all the ‘types’. I have severe joint and skeletal pain with spasms and chronic diarrhea. Thanks for any information and THANK YOU for this site!!!

    Weeza - November 17, 2014 at 11:21 pm Reply
    1. I was told I have Ehlers but my eye doctor wants to make sure I have it. Can someone tell me how they test you for this. I have an appointment with my rheumatoligist next month but I want to know how they go about testing you.

      Patti - December 15, 2014 at 8:56 pm Reply
    2. Hi weeza
      Can you not just be specific and ask/tell your doctor that you want to be referred to a hypermobility specialist because my doctors were ridiculous for years I suspected hypermobility as a cause to my many symptoms but they never followed it through
      Until a rheumatologist and myself specifically asked for this refferal. Geneticists might take too long. hypermobility diagnosis you can know by the Beighton test. The specialists in this field will pick it up in minutes. Be sure to take your medical history makes diagnosis a lot quicker and easier. I was unwell for my appointment but my medical history spoke volumes. Be sure to demand /pay for this don’t let them fob you off. (The gp).
      It’s best to be straight and tell them exactly what you want. Don’t take no for an answer as you have lived with this for long enough.

      Son son - January 12, 2015 at 2:27 pm Reply
  8. I am so happy to see that EDS is becoming more recognized. I am 46 and was just diagnosed this past summer. I have spent my whole life in pain and tired. I was always so flexible (especially my fingers and knee joints). My childhood was plagued by daily stomach issues and essential tremors. By the time I was in 7th grade the fatigue, spontaneous bursting of vessels in my fingers, Raynaud’s, pain, and Syncopy had set in. I had suffered from Plantar fasciitis all through my younger years and cried in pain every time I put on ice skates. My parents called it growing pains and all the doctors deemed me nuts. I never knew what a normal day was like and probably never will. When I went in for out-patient surgery three years ago to rid of fibroids the result was a right collapsed lung, muscle atrophy, and pain that wouldn’t quit. It wasn’t until then that the doctors suspected something was off. Even now very few people are sensitive to my daily torture, because I look healthy (except for days when I’m wiped-out). I was an avid runner and biker. I loved being active, but by the time I hit 30 I was wearing thin. No one has any idea what this is all about unless you’re living it.

    Sam - November 20, 2014 at 10:26 am Reply
  9. living with Ehlers Danlos Syndrome is a life changing event with a lot of ups and downs but u have to learn to take advantage of those good days

    Trevor Scott - December 9, 2014 at 1:27 am Reply
  10. […] Pain Experience […]

    Pain Basics | Shoe String Schooling - December 10, 2014 at 2:36 pm
  11. EDS Hypermobile and ChiarI / Cerebellar Tonsular Ectopia

    Hi,
    I’m 40 and have had EDS 3 Hypermobile dx for about 13 years, though I am inly soon going to see a rheumatologist that really understand all the complications of it.

    Several MRI’S have mentioned that I have incidental Cerebellar Tonsular Ectopia 2.5 mm.
    (This means the bottom part of my bra / cerebellum hangs out of my sckill & down in my spinal column).

    The MRIs there is notation that “there is no crowding”, meaning my signal chord to brain aren’t compressing each other?

    As these images wee taken on my back, gravity was pulling my brain to the back of my skull rather than my toes…..

    Question, in someone with hyper extend collagen (Ehrlos-Danlos Hypermobility ),

    How likely is it that My Cerebellar Tonsils WOULD/could drop farther into my spinal column if I were standing? Because of EDS-H, thus causing crowding/chiari?

    I have major neurological issues, Dismotility, disautonomia, periphrr6al Neuralgia, pain can be are a symptom of EDS….

    But is whatever hold your brain in your soul subject to the same stretching as the skin or ligaments?

    Could this type of thing be effecting more people with eds and above symptoms, but falling throghb the cracks because it is a positional form of chiari?

    Is there a test to see if my “brain hands low” when standing?

    Imajenn - December 30, 2014 at 5:41 am Reply
    1. Imajenn,

      From our own experience, some patients pursue further evaluation and opt for surgical management. Of those, some seem to do better and others notice no change in their symptoms. The problem with the Chiari malformation is that the symptoms of autonomic dysfunction are highly similar, if not identical, to the autonomic symptoms that EDS patients without Chiari experience. Our opinion, therefore, is to pursue every nonsurgical management option first, with good attention paid to the treatment of autonomic symptoms. In some locations, neurosurgeons prefer to evaluate patients with “upright MRI” scanners. In the state of Ohio and many areas close to Cincinnati, radiologists have removed these machines, as their quality was not considered adequate. Thus, our experience with this technique is limited.

      Derek Neilson, MD - January 6, 2015 at 8:48 am Reply
  12. Soooo…now I have had 4 orthopaedists, 2 neurologists and a rheumatologist “suggest” to me that I might be an EDS-Hypermobility. I’ve always been considered rather “loosey-goosey,” but this came to a head a few years ago when I began to need a series of hand surgeries for bones that were, in some cases, too long, joints that would slightly dislocate and trap a nerve, tendons jumping all over, etc. The worst part wasn’t the surgery…it was finding out that I have CYP2D6/3A4 issues, meaning I do not metabolize any oral pain meds. Add to that an allergy to the adhesives used in the pain patches, and the silastic used in pain pumps and this leaves me with a need for IM/IV pain meds ONLY when the blocks wear off. NOW comes the big whammie!! Even though my primary care physician and whichever surgeon I might be dealing with write letters for me to carry, when those blocks wear off and I am in need of IM/IV pain meds, when I go to the ER – the only way I can get the meds I need – I am told I am a drug-seeker, drug addict, that my doctors should get a bottle of drugs and make themselves available to me 24/7 for pain relief, that’s it is “Not their job” to take care of me, etc. Yes, I have a pain management specialist, but they do not keep these drugs in their offices, and even so, after hours, I would have to go to the ER, right? Fortunately, the only time I need pain medication is following injury or surgery, BUT…when I need it, I DO need it, and I frankly take far less than a normal surgery patient who would be taking whatever every 4-6 hours until their first post-op visit. MY only problem is in the manner of delivery. What exactly am I supposed to do?

    Susan - December 30, 2014 at 11:46 pm Reply
  13. My six year old daughter has been diagnosed with (a rule-out really) Probable Ehlers-Danlos Type I/II vs. III. Are there any specialists in the Nashville TN area that you are familiar with?

    Tamara - January 9, 2015 at 3:13 pm Reply
    1. The genetics dept at Vanderbilt Children’s Hospital in Nashville sees both kids and adults. I was diagnosed with type 2 EDS by them (at age 38). I recommend them highly.

      Jilly - January 15, 2015 at 5:51 am Reply
  14. Hey Holly,
    I checked into everything natural and i started on Genacol. This has alot of colagen in it which helps lubercate the joints so they don’t crack as much. I got this at a health food store and i take 3 tablets on a empty stomach before i go to bed. The reason for this is colagen builds at night in your joints. Try it, its safe since its all natural. Hope it helps.

    Patti Hannon - January 12, 2015 at 9:36 am Reply
  15. I’m 23 and hypermobility EDS (I scored a 9 on the Beighton scale). I also have had a sports injury in my lower back for over 3 years now. Many failed treatments later (including physical therapy, massage therapy, prolotherapy, and many other types of injections), my back has made no improvement at all. My latest physician, whom I have been seeing for over a year now, diagnosed the issue as an illiolumbar ligament sprain. It sounds like the injury may be linked to my EDS but I am not sure. Would it be worth seeing an EDS specialist for this? Are there EDS specialists that are highly experienced with sports injuries? I live in Austin, and I have heard there are some good EDS specialists in this area. However, I don’t know what kind of doctor/physician I should be looking for.

    Anthony - January 13, 2015 at 11:25 pm Reply
  16. My daughter had a fall in high school gym class, she hit her elbow but tests showed that it wasnt broken, the pain did not go away and in fact intensified, her pain shot down from her elbow and into her hand causing spasms and numbness and pain there. Her pain increased and started to shoot from her elbow to her shoulder and then across her shoulder to her neck. We have seen nerve specialist, bone specialists, muscles specialists, we have tried physiotherapy, acupuncture. The only diagnosis we have is that she has regional chronic pain syndrome, and EDS. She is in constant pain and now, 5 years down the road has begun to have her shoulder, knee, and even shoulder blade dislocate. We finally got a referral to the Mayo Clinic hoping that we would finally get a diagnosis and treatment help. After waiting for eight months for the appointment and travelling there (we live in Canada) and spending two weeks running test after test (we have no medical coverage in the states) they came up empty . They wanted her to remain there for three more weeks to learn techniques to live with her chronic pain. Im sorry this is so long and drawn out but thought maybe someone here would have a similar experience and be able to help us out. As a parent i would gladly take the pain for her if i could, its heart breaking watching this time that should be the best time of her life become a constant pain filled existence.

    Jim Peterson - January 14, 2015 at 1:52 am Reply
  17. my 19 year old was diagnosed by a sports medicine doctor with connective tissue disorder. She is now having more issues with pain and chronic fatigue. It there a specialist in ED in Columbus, OH?? I see conflicting recommendations between a rheumetalogist and geneticist.

    Karen - January 14, 2015 at 7:05 pm Reply
    1. Hi Karen,

      I reached out to our doctors and they said that they are not aware of any specialists in Columbus; however, they would be happy to evaluate her here if you’re able to make the trip to Cincinnati. Connective Tissue Clinic: 513-636-4760 or skeletaldysplasiacenter@cchmc.org

      Rachel Camper - January 15, 2015 at 2:37 pm Reply
  18. One of my 4 eds kids is in chronic pain from constant rib dislocations and other things . She is seeing a p.t, psychiatrist and POTS doc. She wants to smoke pot for anxiety and pain but feels judged for it and hesitant to talk to docs. We do not allow it in our home. She has now found a group of friends she can do it with rather than pursuing a green card. She is 19. Any thoughts?

    Sara - January 16, 2015 at 1:40 pm Reply

Leave a Comment