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Very Frustrated, And Can't Believe Local Docs Still Don't Get It.


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I went to Cincinnati Children's Hospital for my EDS check up, and my geneticist/EDS specialist said I need to follow up with the orthopedic surgeon who recommended surgery.

The cervical/cranial instability------------I'm told surgery is needed-------a fusion of c1-c2.

The problem is getting this to actually show on an MRI or x-ray. Since it's instability due to the EDS---joint instability---ligament instability it's not easy to see this on MRIs/x-rays. This is common with EDS folks. I'd like to have one more opinion on this instability from another reputable medical institution---------maybe John's Hopkins before having major surgery. My pcp recommended them, and I faxed records, and they welcomed me there to see EDS specialist, but said they did not have a treatment plan for my other issues. HELLOOOOOOOOOOOOOO! I'd be coming there to see someone about the instability, missing vertebral artery on the left causing the one on the right to be enlarged and press on the brain stem, and the combination of this with the EDS and other spine instability and congenital stenosis ect, ect.

JOHNS HOPKINS----------ARE YOU SURE YOU CAN'T figure this out? Johns Hopkins, are you kidding me-----is this a joke?

I thought this was one of the best hospitals around. My records show some pretty serious issues, and they seemed to not have any interest at all other then seeing me for EDS.

Now I have swelling near my right clavical, and I have no idea what is causing it, but my EDS doc thought it might be from my clavical dislocating/subluxating.

I'm disgusted, as not one doc in my town has a clue, and I'm tired of traveling out of town. So far I've been to Chicago for surgery on my neck, NY, Cleveland twice, Ann Arbor Mich. which is only an hour away, Milwaukee, Baltimore at NIH, and Cincinnati. The consensus is that I definately have instability in cervical/cranial area, and also other parts of my spine.

I'm wondering if the bulging above the clavical near my lower neck has something to do with the issues from the instability.

I'm having lots of problems lately, too hard to explain. Basically like I've been run over by a train, and the bulge really gets intense when I'm walking around. The right side of my head hurts on and off more then my usual, and some rather scary sharp shooting pains that feel like they're going to kill me.

My husband and I are remodling our kitchen, and we have a little money left for a few other things like doors, custom blind, gutters, and maybe carpet. This means we have been in and out of LOWE'S A LOT. Mostly together, as I can't handle going in there for any length of time alone. I found that walking around in there has created havoc on my jonts like never before. My legs have never hurt so terribly----knees, feet, and now my hips. My whole back just feels broke, and it gets so bad my vision gets blurry. I often wonder how I walk still. My bladder seems to retain urine, it's more difficult to swallow, and the cold I had a month ago seems to be haning on in the sense that I still cough up mucus. I also seem to have more head congestion, and I never have had something like this so long. I also choke easily on my own spit.

Do any of you who might be able to get more insight on the combination of my instability in cervical/cranial junction, the pressure of enlarged right vertebral artery on brain stem, the congenital cervical spine stenosis, and pannus growth/aka tissue growth on odontoid bone---the bony covering on c-2? I'm afraid with the combination of this and the joint instability from the EDS could be dangerous. I'm already told my right vertebral artery is already being kinked from the very loose neck----and the overly large range of motion. I'm literally wobbly.

You all take care--- ;)

Maxine :0)

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I'm sorry you are struggling so much.

As for Johns Hopkins---I'm not sure I'm following your post clearly but to me it sounds like everywhere else....they evaluate you in bits and pieces. If you want other issues addressed you can request other consults but they may not occur over the same visit and even with all of that you are still lacking a Dr who would coordinate your total care. I don't find many facilities are good for coordinating total patient care....Mayo clinic comes closest but they are not the best to go to for all problems---it depends on what you are dealing with and what your current goals for treatment and evaluation are.

I hope you get things sorted out soon and find someone to coordinate for you.

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The problem is that so many doctors are "specialists" and only treat the conditions that they specialise in. What we all need are caring compassionate doctors who understand holistic health care and are willing to work with all of the problems we bring to them. Unfortunately these sorts of doctors are rare beings and are often already overflowing with difficult complicated patients so not taking on any new patients.

In the UK our healthcare is all arranged through our general practitioner (GP) so in theory at least they co-ordinate everything between the different consultants. The problem is when our medical problems don't fit neatly in one box - and that is often the case with us!

For me trying to get my cardiologist, EP cardiologist, neurologist, rheumatologists, immunologist and ENT surgeon to work together is proving to be a nightmare.

If the main issue at the moment is whether or not to have spinal surgery then I would seek out opinions from orthopaedic or neurosurgeons who understand EDS.

Good luck,


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Hi flop,

I agree, coordination of care can be a nightmare. Here in the states, except for at only a few places (Mayo being one), it's up to the patient to coordinate everything. I suppose, in the past, it was the GP, but like their name says, they are "Generalists". If you don't fit into a general category easily, they may refer you out, but if that doesn't lead to a diagnosis, you start over again...and eventually, at least where i live, they tend to either give up or label you as a hypochondriac b/c you keep coming back to their office again and again complaining.

Just my 2? on a tough issue. Many of you "oldies" know my feelings about finding a great doc--it's hard to do, like the proverbial needle in the haystack...and when you do, you tend to hold on until they retire or move away!

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WOW Maxine...all I can say is HUGS TO YOU ~!!! Gentle ones of course.

That IS more than one person can handle. ITs probably more than the medical community can as well. What I would do ..is..well..pray for guidance.. that the best docs do their best. I meant it. ASK to be guided to a spirit filled DOC or two who are willing to help in just the ways YOU need it. I have done that. LIterally closed my eyes..prayed to the HOly Spirit (and I am not that religious beleive me) and found the most incredible doctor who assisted in my miracle.

Good luck.. I'll not only be praying for you..but your BEST CHEERLEADER!!

WArmly Jan

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I don't understand the EDS, but I do understand your feeling of not knowing what to do about these DOCTORS , I suggest you do some extensive research on finding the best Doctor for this problem and contacting them, before you agree to anyone cutting into your spine and you must feel comfortable with the information they provide you, besides them just saying "we need to do this surgery" and if they don't give you the answers you need or make you feel confident in what they wanna do don't do it!!!! Just because some one refers you somewhere doesn't mean they are the BEST its all A Connect thing with Doctors they are all BUDDIES sharing the cash . And basically WE are experiment projects or research studies Unless they have Done exactly what you need.

Mae***** stay strong

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Thanks for your replies, support, and understanding----- :).

I find the main problem is finding any other doctors who will not be afraid to evaluate the cervical/cranial junction specifically, other then the orthopedic surgeon I'm currently seeing. I like him, and he has a great understanding of EDS and it's relationship to instability in this area. However, my EDS doc also said I should have a neurosurgeon involved as I also have this vertebral artery pressing on the brain stem, the congenital cervical spine stenosis----------------just a lot of neurological involvement.

I think a lot of medical institutions are afraid of liability, and many doctors do not want to deal with the cervical/cranial junction. A lot of them do not have extensive knowledge of this area, and don't fully understand the more subtle symptoms that can point to a dangerous consequence. Right now I'm dealing with the sharp shooting pains that are very disturbing, and it feels like it has something to to with the enlarged vertebral artery, but I'm not a doctor, and I can only say how it "feels". And if I do this the docs look at me like I'm nuts. Aren't we supposed to say how we feel-----isn't that the whole reason we see doctors-----------because something doesn't "feel" right.

My aunt went to her doctor with complaints of vague headaches and strange symptoms, and her doctor told her she had anxiety and prescribed xanax. It turned out she had a brain tumor, and it affected parts of her autonomic nervous system. You all know the strange symptoms WE get. She collapsed a few days before Christmas, and fortunately she was taken seriously then, and fortunately she didn't die before they did. She had the tumor removed the week following Christmas, but still has a tiny one left in an area of the brain they can't reach. She's taking things day by day now, and still doesn't get taken seriously when she complains of symptoms.

The doctors where I live are absolutely behind the times, and know very little about EDS, and different type of spine instability, and chiari related conditions. They may know about chiari in a general sense, but for the most part they don't deal with the many complications that can arise from chiari, or cervical/cranial instability. Dr. Grubb lives and works closely to where I live, but I won't burden him with all this. I know he has a good understanding of the many different problems that come along with POTS, but I can't give him this responsibility----------------this is something for my PCP, but as you all know a lot of PCPs have very little knowledge of this, and have a difficult time making a decision on where to refer us. They have to have more knowledge of these specific conditions to have an idea on what would be the best possible specialist to send us to.

Some days I get beyond frustrated, and feel angry----------VERY.

Meanwhile, here it sit with what feels like a charlie horse in the right side of my head.

Maxine :0)

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I feel so bad for you and hope you get some answers soon, I will keep you in my prayers and I really wish you didn't have to have this daily pain. I know it must be extremely difficult and you have some support here I will pray for God to lay his healing hands upon you and lead you in the right direction.


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