Saw An Orthopedist At Cincinnati Children's Hospital

[Maxine]

My husband took me to Cincinnati yesterday. It's a three hour drive there. I saw an orthopedist from Cincinnati Children's Hospital who was recommended by my EDS doctor from the same hospital. My appointment was in the afternoon, so we made the trip in one day.

A while ago I had e-mailed him about a fractured tooth that needed to be pulled, and I was scared because of the instability in my cervical spine/cranial area. I also told him my fears regarding the lidocaine, as I have systemic circulation causing a TOXIC reaction. He immediately e-mail me with some helpful information, and then said he would like to see me in clinic ASAP in regards to my spine instability. This was in April.

The Orthopedist is Co-Director, Musculoskeletal Tumor Center Co-Director, Center for Spinal Disorders, Assistant Professor, Pediatric Orthopaedics, and has worked with just about any kind of problem you can think of relating to the spine. Also, Musculoskeletal Tumors, spinal deformities ect.

He looked at all my MRIs and other films from 2002 to 2006. The news was not good, as he said my instability does in fact exist, and it's getting worse. He said Dr. Heffez is correct in that I have myelopathy, and that he is also correct that it's caused by the congenital cervical spine stenosis.

I have the small posterior fossa, but not really much of a chiari. However the combination of the small posterior fossa-(lower skull), and the retroflexed odontoid bone--(c-2 bony covering) with pannus growth formation, and the instability at the cervical spine/cranial junction isn't good---not at all. Basically all of this is insult to the upper spine and brain stem area. He said the "pannus growth" is what confirms the instability, as it has grown quite a bit just in two years.

I asked him if this is why I can't take the heat, and he said this was more related to the ANS dysfunction--------- my inability to handle heat---or cold. There is only a small window of temp. that I can handle. He explained how it all works-----I was very surprised on how much he knew about ANS dysfunction. Of course he knows all about EDS, and he said my spine is greatly affected. He wants me to have another MRI of cervical spine in flexation and extension, and he also wants me to have an MRI of the thoracic and lumbar spine.

We talked about surgery that would involve using some kind hinge/and cadavor bone--------------and not having to cut the ligaments/muscle which is bad for anyone with EDS. Basically helping to correct the problem without causing further instability which can often happen with people who have spine problems related to their EDS. He also told me my sleep apnea can be caused by the spine problems and EDS.

All of this is based on my appointment with him, and as you can see by my signature line, he's pretty close to what the other two neurosurgeons are saying. In fact he was very interested in the pannus growth, and how much further it grew in just two years. He listened to me, and answered all my questions fully, and with sincerity. He also had a good sense of humor.

I guess I can't asked for much more then that. I have a lot to think about, and although I knew my problems were pretty intense, I'm still often surprised when a doctor believes me and validates how bad things really are. You want to be validated, but at the same time, you wish all this would just go away like a bad dream does when you wake up.

Oh------I met another woman there who has EDS, and she just had cervical spine surgery with this same doctor-------she really likes him too--- . It turns out she lived in my town before she moved to Cincinnati. She also knew my husband's brother, as she was a teacher at the school he works for. We wrote eachother's ph#---e-mail ect down. Small world----

Maxine :0)

[Ernie]

Hi Maxine,

Well I can certainly relate to being valided and not wishing to have the disorder. When doctors were telling me I had conversion disorder I was wishing it was it because I knew it was curable. When I got the real diagnosis and I found out it was genetic and incurable I was really mad because for all those years (30 years) of being told it was all in my head and now I have the medical proof that it is physical but I am so sick that I have no life anymore.

When I was working I had one client who went to the hospital because he had phlebitis everywhere in his body (legs, arms, lungs, etc.). They did all the tests and could not find the cause. So they were saying it was psychosomatic. Well they cut both his legs and he died the same day. I wonder if someone dies of a psychosomatic disorder! I was so upset when his family called me to give me the news. On his autopsy report they wrote the cause of death as cancer. It's funny how when someone dies they need to find a real disorder to write on the autopsy report!

It upsets me to see all the mistreatment that you go through before finally getting validated.

Anyway, I am glad that you got finally validated and that you have some treatment options.

Love

[delphicdragon]

Ernie - Scarily enough people can die from a psychosomatic disorder. Tests were done on this a long time ago where they told people they were bleeding to death and people actually died! The mind is a very powerful thing. That said, I really wish doctors didn't jump to psychosomatic disorders SO fast when the initial treatment fails. I was diagnosed with Asthma about 5 years ago - textbook Methocholine challenge test- yet when Albuterol sent my heart-rate up to 180 and I refused to take it, I was suddenly told I didn't have asthma... such fun.

Maxine - I'm glad you found a doctor who can offer some help. I've found Orthopedists to be the most helpful as they know about EDS and can work from there. Best wishes to you.

Sara

[Maxine]

Thanks for your replies and support--

I have some other very nice physicians who have validated my health problems, but this was after a long battle with dismissive and rude doctors.

However, even some of the supportive physicians were a bit skeptical on the cervical/cranial instability, but I stuck to my guns about the instability because I can feel it so strongly----(EVERY DAY IN FACT). Only one physician/neurosurgeon before the orthopedist said I had this instability. I just wanted to find one other doctor to verify that this instability exists.

I struggle to type now because of the instability----even on my lap top. I'm so sorry I haven't responded to as many posts as I used to. Just lifting my arms affects the neck/cranial area.

The orthopedist saw the pannus growth, but I didn't think he would say I had instability, and never expected him to say it's getting worse. He said the pannus growth alone validates the instability. With the other spine issues, EDS and POTS it's a bit overwhelming. I still have not heard back from the oral surgeon, even after I went for another consult. He looked at the tooth and said it did not appear to be infected/absessed ect. But it still bothers me.

It's hard to tell if it's that or my cranial area pain. When I lay down and take the weight of my head off my neck and the pain level improves, then I know it's not the tooth. The bad tooth is under a bridge. People with EDS are notoriously known for their dental problems. The molar has to be pulled, and of course that is not an easy task with this instability, and my toxic reactions to the lidocaine agents to numb the area.

One thing to always remember------------------you have to advocate for yourself, or you won't get anywhere. It's exausting, and can be terrible at times, but we can't let some of the medical professionals beat down our confidence. For me it wasn't necessarily a confidence issue--------------it was more like I'm just worn down, and I would get tired of fighting, and just plain too sick to handle it. But believe me---------------REST UP, save your strength for the long arduous battle for better health care, and just as important-----your self respect. In the long haul of things, your helping others as you help yourself.

Maxine :0)