Anyone have a child with severe pain,Chiari &EDS? No one will treat her pain. (Comments on Kennedy Krieger Pediatric Pain Clinic)

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I have a 16 year old daughter. For 3 years her right leg has been going numb. We live in the Baltimore area (supposedly the best doctors are here, Johns Hopkins, etc), When we told her first pediatrician that her leg was going numb, she explained the symptoms and he said she was making it up. There began a round of doctors, many who knew nothing (or next to nothing) about what was wrong with her.

Severe headaches. Fatigue. Right side of her body going numb, starting with her foot. Trouble balancing. Dislocations. Joint Pain. According to her doctors, she was "making it all up" and I was stupid enough to be conned by her.

One of the many doctors we saw was Dr. Howard Levy at Johns Hopkins who said she did not have Ehlers Danlos Syndrome. Several neurologists. Along the way, she needed hand surgery for some pinched nerved in her hand but first we had to see 5 "hand surgeons" before we found one who knew what was wrong with her hand (Dr. Hugh Baugher, Union Memorial, was great).

Finally, Dr. Clair Francomano diagnosed her with Ehlers Danlos Syndrome. Started us in the right direction, with the right doctors, and she is not diagnosed with Chiari Malformation and Tethered Cord.

Here is my point. Along the way, my daughter has been in excruciating pain. She cannot get out of bed at times, cannot walk. Severe muscle spasms. Her head, neck, shoulders, back and knees hurt 24 hours a day. NO ONE and I mean NO ONE will give her any pain medication.

So I made her an appointment at Kennedy Kreiger's Pediatric Pain Clinic. We spent 5 hours -- YES, FIVE HOURS -- being evaluated by the staff there. Physical therapists, psychiatrist, and others. The pain controls my daughters life. She is home schooled, she can't walk through a mall, she cannot even spend time with her friends because she has all - consuming chronic pain. She opened up her heart to them, told them how she felt, was she has gone through.

Finally, Dr Sabine Kost-Byerly came in. She told my daughter to walk for 30 minutes every day. THAT'S IT!!! We went in there with doctors notes showing she has EDS, Chiari and Tethered Cord. Severe, disabling Migraines. So, my daughter said, "can I just have something for my migraines, please?" The doctor said, "No."

Has anyone else encountered this? How do you handle it? AND WHY ARE THEY TREATING HER LIKE THIS? It is breaking my heart seeing her in so much pain every day and no one will help her. WHY? It it because she is 16? Because she looks healthy on the outside? Any ideas or stories would help.

Thank you for reading my long story.

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I sent him a message. As soon as he gets back to me I'll let you know

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Thanks, Big Red. At this last visit, I actually started crying. They were our last resort. When you are treated like this, it makes you feel like dirt. Like my daughter doesn't matter enough to live without pain.

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I know. I've been treated that way and with my ptsd I'm surprised i haven't knocked someone out by now, I cannot imagine my child being treated this way. If I told him your entire story he'd probably send his marine brother after them lol

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I saw that you are having trouble being treated for pain, too. I am so sorry.

Why do they do this? It is fear of lawsuits? Do they think we are lying? I've gotten comments that I am drug seeking. Really? I WANT to get my 16 year old drugs for fun? Really? So I can have an addict for a daughter? No thanks.

Someone should sue them for leaving people in pain. Pain is real, just like appendicitis is real and a heart attack is real. If a doctor doesn't treat those things, he could get sued. But tell someone to just deal with severe pain, and there are no consequences. AND AT A PAIN CLINIC. What do they do there, then? Tell kids to walk and take Ibuprofen?

My daughter told them how her pain averages a 7. EVERY DAY. Sometimes a 10. It gets so bad she throws up. And the Dr. said, "I don't feel comfortable giving you pain medicine".

Johns Hopkins (JH) is linked to Kennedy Kreiger (KK) and they were questioning me why I saw another doctor after Dr. Levy at JH. I said because he did not answer why her right side was numb, so I knew something else had to be going on. Maybe they think we are "doctor shoppers"? Well, yeah, because no one knew what was wrong with her, and no one will treat her like a real person in pain.

Sorry for my rant. I am just really upset. Thanks for listening (reading).

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Thanks Beeba. I appreciate your advice. In the past, I just moved on. But JH is supposed to be so good. So I guess I had my hopes up. Our experiences with JH have been so terrible. I was just trying to get her pain treated while we are waiting for her surgery with Dr. Henderson.

I guess I was also wondering if this is a problem in general with Chiari (and EDS) or if it was just because she is 16. From what I've just been reading, it looks like it is common for doctors to not want to treat this pain, and/or they do not know much about Chiari.

Beeba said:

Just a recommendation. I am 4 weeks post op. dr Jon weingart is one of the most respected drs in this area perhaps you could give him a try. He was the first dr I saw (and I have seen to many to list and had even already had a failed surgery by another dr) he didn't question my pain,symptoms when I asked if something could be wrong with my neck because I feel like I can't hold my head up. His response was nothing more is probably wrong with your ne k you just feel so bad and have been through so much you ate just worn out. Do you have any idea how good it felt to have someone not discuss stress,rebound headaches and all the the other bs these people say to us. I am still in significant surgical pain - today - yesterday was a great day running errand ,cleaning the house and taking care of the kids. Life will get better for her with the right dr. I can't imagine what it feels like to watch your daughter go through this. My advice to you is stop taking it personal and we do not live 100's of miles from drs we are the mecca of medicine. Start saying you will pay your copayat the end of the visit and see how things go. Lol. When I say don't take it personally I mean no disrespect but just move on... If you have to go to 50 drs until you find the right one that that is what you do...I became so defeated by drs last year I really just though o g I am gonna die and they are all doing nothing!!! It wasn't until I took back a little of the control that I actually got things done. One appointment does not a relationship make. Keep changing until you find the right one. Do not let these people hurt your feelings and question yourself - you hold it together and walkout and call em the asshole they probably are and move on. If you aren't crazy don't let people try and convince you otherwise.
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Beeba,

Thank you for sharing your experience. This surgery is such a scary thing to go through at any age; it is so good to hear that she will feel better afterwards.

If Dr. Henderson does not work out, I will certainly take her to Dr. Weingart. From what I am learning, the skill of the surgeon is very important for this surgery, in particular.

The Dr. my daughter just saw at JH is actually at the only children's pain management center in Maryland. They had it all over their website that they treated/worked with children with these problems. Which is why I was so shocked about it!

Again, thank you for sharing your experience and advice, and I am so glad that you are feeling better!


Beeba said:

I have read very good reviews of dr Henderson (Bethesda?). That is what you need. My surgery was done at JHH. And although am very happy with surgeon I thought the place didn't exactly live up to what I imagined it to be. Very honestly the best hospital experience I ever had was at Atlantic general just outside of ocean city - had I not been in horrible pain I wouldn't have gone there for gall bladders surgery let alone even take a splinter out. Couldn't have been better - even let me stay an extra day since I wasn't going to recover at home and I was scared!! I was in the hospital less time for brain surgery than a gall bladder taken laparoscopically!!! Lol. Just shows it it more about being Comfortable with the surgeon than the establishment. I can't imagine why drs are letting your daughter suffer in any way. I can't imagine how you are even keeping your composure as well as you are. How long until your appt. with dr Henderson. - if you have to wait to long my only suggestion would be a pain magmt. Center. Obviously a desperate and non appealing option but my other one was to buy them illegally so it is a thought if it got her through to the appt. I know very little about the eds but with her other two issues she is going to be sooooo much better after surgery. Releasing that cord stops that pulling in her spine that is basically like having a vacuum in the back of her head sucking her brain down. As for the decompression - from experience - ok first one not done complete enough - had an awful recovery because I basically still had chiari but there was actually some relief of symptoms for a while. I am only 4 was this time but almost all my chiari symptoms are gone. Surgical crap - yeah still really sucks!! Not gonna lie. But my heart beat has slowed to a normal pace,not out of breath all the time, stabbing g pain between shoulder blades gone, low back pain that I thought was just be ause I am 43 and all my friends complain about their back I didn't even think it was related. Woke up from surgery and that was totally gone. My "sinus infection" that I have felt like I had for two years - gone!! So I am just hoping to assure you that things will get better with the right dr. I wish you great success with dr Henderson and if you need a second opinion please consider dr weingart. He has an office at JHH and in lutherville.
Ps JHH obviously doesn't do everything perfect - I was born there and 43 years to the day I wAs back having brain surgery - both on good Friday!!
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I am so sorry for all of your frustration! I have been back and forth to doctors for years and it gets tough. I have been going to Hopkins since I was 16 and I am 22 now, I see Dr. Peter Rowe. He is AMAZING! I have chronic fatigue syndrome, postural orthostatic tachycardia syndrome and chiari malformation. But he also specializes in Elhers Danlos. Also, I just had my decompression surgery in August at Hopkins. I saw Dr. George Jallo who is also a pediatric surgeon. I highly recommend him. He did such a great job and is so very friendly. I hope this helps and I hope that you are able to get some answers.

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Hi Beeba,

First, thanks for asking.

Her Chiari surgery went well with Dr. Henderson, as did her following tethered cord release (her tethered cord was actually very severe). In fact, I remember my daughter coming to me years previously asking “what is this lump on my lower back?” Not knowing anything about any of this, I had no answer. Turned out, it was all kinds of “stuff” wrapped around the base of her spinal cord, pulling it down. The surgery took more than twice as long as expected, and afterwards, the lump was gone.

Unfortunately though, due to EDS and some other suspected (specifics unknown) hereditary disorders, she is still in daily pain - joint pain, other back pain, fatigue, depression, etc.

The disorders we have are still being tested for, but they are rare blood disorders that “may” run together with some Chiari and/or EDSers. It is still in very early stages of investigation, but could be the cause of the “brain fog”, easy bruising, and fatigue that many of us suffer from.

My advice would be that anyone with Chiari (and or EDS) see a hematologist to check for rare blood disorders, particularly ones that cause thick blood (which I discovered I have).

I am now recovering from tethered cord release surgery (1 week post surgery) and 1 month post surgery for Chiari malformation , and feeling better every day. Unfortunately, my daughter is not as lucky, as she still is either healing more slowly or has something else going on.

I hope all is as well as can be with you. Gentle hugs.

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Dear jlutrzyk,

Thank you for the info.

Does he manage care long term? If so, I will take her there. Dr. Henderson is a wonderful man, but is a busy surgeon, so his care is limited to pre-op and post-op.

So glad you were able to find a doctor who takes good care of you.

Is all going well with you?

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Sure, Beeba.



I have Hyper coagulation - when blood clots too easily. My blood was multiple times thicker than normal. The doctors and nurses were in a frenzy after my brain surgery, when it was discovered, giving me more than doubled doses of Both oral (coumadin) and injected (lovenox) blood thinners, just to get my blood closer to normal. (Giving both meds is common practice at first, but my doses are high, and I have to stay on both meds indefinitely)



I believe the other concerns, besides the obvious increased risk of blood clots leading to stroke, heart attack, etc., is that when blood so flows slowly, it could cause strain on the heart (beating harder or faster to pump blood properly). It could also cause multiple miscarriages, which, luckily, I did not have.



The possibility of any connection between hypo coagulation and other disorders (inluding Chiari, but more likely EDS, and I would add Fibromyalgia) is very preliminary, just something being speculated on and explored right now by a couple doctors.



Also, there is a very definite connection between Chiari and Ehlers Danlos Syndrome (EDS). And EDS is often misdiagnosed as Fibromyalgia.



But it is so dangerous, and so few people ever get tested for it, I wanted to mention it here.



My family history was a clue with multiple, sudden deaths at young ages (between 36 - 62 years of age) from: causes “unknown”, an enlarged heart, stroke. My symptoms were also a clue. I dont have a complete list of significant symptoms, but from my best memory of discussions and my knowledge, some symptoms includes: not bleeding after getting blood drawn, racing heart with no cause, fatigue, cold extremities, and possibly brain fog.



If you suspect you have it, get tested. Especially if you may be having brain surgery, or any surgery, for that matter! I recently discovered that my grandmother, who died when i was a child, died of a stroke (blood clot) while recovering from some sort of brain surgery.


  • Mdmom