"Suffering the Slings and Arrows of Outrageous Fortune"

A casual visit to the doctor, which the average person is able to accomplish without a second thought, is rarely casual for us. I sometimes have a serious case of envy when I look around the waiting room, watching the people who come and go with ‘normal’ problems.

Our latest misadventure was with the opthamologist on Friday – Em had to go in for her yearly check up. I had several important things I wanted to discuss and I was quite sure the topic of high intracranial pressure/ externally communcating hydrocephalus/Diamox would come up. I really wondered what he would make of it. It quickly became evident that I was utterly foolish to ever believe that he would listen to my concerns and that he might have a sympathetic ear for us regarding Diamox.

He was quite dismissive of the whole concept – flat out told me that he saw absolutely no signs of increased pressure and, if it were there, he would see it. When neurologists are worried about this type of thing in their patient, they send the patient to him and he ALWAYS sees it – IF it is there. He almost became a neurologist so he knows about these things.

Then, he told me I needed a second opinion regarding high intracranial pressure. When I told him Cincinnati Children’s was hit and miss for real EDS knowledge, he told me to just head to Denver or to CHOP (Children’s Hospital of Philadelphia) and I would find loads of experts who would be able to share their boundless expertise.

How does one even begin to reply to that….

First of all, we live in western Ohio. Denver is not exactly just around the corner, nor is Philadelphia for that matter. I don’t know what world he lives in where he thinks the average person can just take off to Denver to see a doctor who would be ‘out of network’ for our insurance and thus, we would have to pay out of pocket. Referrals, insurance coverage and money issues are very real for those of us in the EDS trenches. Unfortunately,  the enormous medical issues that we are faced with do not magically increase our financial resources – funnily enough, they actually tend to deplete those resources quite rapidly. Maybe they didn’t cover that in his Opthamology classes. I wish I had all of the money in the world to throw at my daughter’s medical problems, but all the money in the world would be totally useless if there are no doctors who have real knowledge and real answers. Which brings me to the second point…

There are precious few experts on any aspect of EDS anywhere – including at the most prestigious Children’s Hospitals in the country. Just because this particular opthamologist thinks he knows all there is to know about EDS and was trained at CHOP himself, does not mean there is a stronghold of EDS experts hiding there.  Or anywhere else, sadly. When you throw poorly understood neurological issues into the mix, I don’t think there is a single neurologist or neurosurgeon who knows everything.

Yes, there are a some doctors/surgeons who know more than others when it comes to the neurological component of EDS and are working to learn more but there also is a hint of that stereotypical surgeon’s arrogance that comes into play in some cases: We are the experts and we know best, so what we say is the absolute truth and you need to listen to us – check your opinion at the door. While I acknowledge that they are highly skilled and well trained in their fields, I can’t help but think that no one really knows much of anything when it comes to EDS. And anyone who says otherwise, is selling us the same cloth they sold to the Emperor for his new clothes.

So, anyway,  this guy also told me that I really should consider having cervical fusion done on Em and that if the surgeon says it should be done, he has his reasons and I should listen. Cervical fusions are quite harmless these days and are not at all scary. I have to wonder if the surgeon’s knife were hovering over HIS child, if his attitude would be quite so cavalier. He also pointed out the dangers of Diamox and suggested a shunt instead. I found it astonishing that he would casually recommend the most invasive possible treatments while chiding us for trying the least invasive treatment. The arrogance of doctors never fails to amaze me.

I tried to politely express our concerns and how challenging our situation is, but he was too busy lecturing me to hear what I had to say. I wasn’t left speechless by his ignorance, but I may as well have been for all the good saying my piece did.

The end result was, he lectured me about following the lead of doctors who know more than I do and he totally blew off my real concerns that I was desperate to have addressed. So, instead of getting actual much-needed support and help from him, I got lectured and my concerns were totally ignored – the result being, once again, I am on my own to figure out the answers for my child. That is getting awfully old, to be honest with you.

Another doctor, who I really liked, goes into the idiot pile, which is getting pretty crowded. At least he has plenty of good company.


Comments on: "Yet another Dr Rant" (6)

  1. Oh Beth. All I can say is that I am so sorry that you had to deal with that jerk. I have seen fusion in adults and older teenagers – I can’t imagine doing it until there is no other option left and I can’t believe that fool said it is quite harmless. You behaved better than I would have – that type of bad behavior has caused me to respond with “Are you willing to bet your license on it? Last time I checked x is not your specialty so now I am wondering if you are as incompetent at what your specialty is as you are at your non-specialty.” It doesn’t make me many friends but it feels really good to say. I am so sorry that Em is going through this. Diamox has helped me immensely. Being able to move your eyes without pain is a wonderful thing. Please email me if you want to vent further.

    • Well, you know, apparently he IS an expert at neurology – since he ‘almost’ became a neurologist. I guess that is why he only ‘almost’ knew what he was talking about! 😀 The sad thing is, I really liked him the first time we saw him. Needless to say, don’t care much for him now. As much as he blathered on about all of the EDS patients he sees, I would bet that my daughter is his only patient. At some point, I didn’t even care enough to ask and put him on the spot. I lost interest in conversing with him around the time he told me Em should go ahead with a fusion and I couldn’t get a word in edgewise. Sadly, I think he got the impression I appreciated his ‘valuable input’ – he was clearly too full of himself to grasp the fact that I was obviously not buying his load of crap.

      I actually may email you – I was reading some of your blog posts about your son having convergence insufficiency. When I looked it up, it totally fits my daughter. I have strongly suspected for a couple years that she has accommodation issues but hadn’t run across convergence insufficiency – it explains so much. For most of the last year, her eyes were the least of our concerns but now we can start investigating it.

      Last year, this doctor told me her eyes were fine and she didn’t need glasses. On the way home she was practically in tears and said ‘but I can’t see, how can he say my eyes are fine’. This time, he told me her eyes were fine, but since she was having trouble with fatigue and pain, we could go get her a mild prescription for glasses – even though the optomotrists would tell us we were wasting our money. He totally blew off my concerns – I didn’t expect him to offer a lot of help, but I did expect him to at least listen. He is quite young so I had some hope going in that he would at least have a clue. So, now I am on my own – again – to try to figure out answers. I have a few leads on vision therapy locally and my husband says he knows an opthamologist who is ‘really nice’ (I’ll believe that when I see it!) and might be able to steer us to someone who would be in network for us. Anyway, I have meant to comment to you on your blog but have been so busy. When I get a chance, I will head over and read some more and maybe email you to pick your brain. At some point I will write a post about about it, but I am just too blah at the moment!

      Thanks so much for listening! It is so helpful to talk to people who just get it!

      • Convergence insuffiency was a huge discovery for us in helping Nick. Email anytime. Take care of yourself so that you can take care of Em.

        I know what you mean about being able to talk to people who get it. It makes it so much easier when you don’t have to explain yourself or every other term while venting.

  2. rachel said:

    Beth, I have recently found your blog and am loving it. I am a 32 year old mother of 5 and wife to a us soldier. I too have eds and pots like ur daughter. My 5 kids have eds and my oldest has been having symptoms of pots lately. I too have been following the Driscoll theory but didnt really try it as i didn’t have access to my head circumference when i was little, so I didn’t bother. But by accident, during Christmas time I had had a cold for a month and no cold medicine was working and my husband finally told me I needed to take something just so i could sleep since i was getting very bad. So I took a generic sleep aid and all my symptoms went away within 30 mins. Well when I thought that was funny for a sleep aid to help me, I looked at the ingredient and it was benadryl, lol. So from then on I started looking at the Driscoll theory more serious. So I have taken benadryl and zantac and have been able to do a few things a day which is a huge improvement. I was wondering since i haven’t tried zyrtec, and benadryl has worked is there a reason why people do the zrtec instead of benadryl? Also my doctors thought my headaches were cause of cervical instability. Well I finally got referred and insurance approved me to go to Dr. Goodman at the Arizona mayo clinic, which was a huge feat as they have never sent someone that far away and insurance cover everything! But while I am out there only 12 miles away is Arizona Doppler that can check for ccsvi. So I am going to take the time and money to see if that is what I have and then zee what the doctors will do from there. I hsavent tried diamox, as i don’t want to keep bombarding my doctor since it took so much to get to the mayo. I think he will just say, wait and see what the Dr there says and go from there. But I did want to bring something up that has helped me sooo much. I know there is not alot out there yet about this with eds but I have dine prolotherapy on my hips and soon will be doing it on my neck. My hips went from subluxing 20x a day to 3 just with the first injections. My doctor has been waiting on another doctor that was on leave to be back to do my neck. I should have it done probably April 12th. So in the meantime of waiting to see about ccsvi, I am going to see if i have as much of amazing results with my neck that I did with my hips. It isn’t going to change the pressure if i have ccsvi, but it probably can relieve the other headaches and pain that I have from the neck being out, and muscles spasming. But it is one thing at a time since it is hard to convince doctors to listen about things. I had been on flexeril daily and did pt for my neck as well as many other body parts. I had to get off the meds for some testing and i found that the flexrril was causing more harm then good being on it daily, now I will use it for emergencies only but not daily or even weekly. I found that it relaxes all my muscles and the ones I am having problems with it only takes the edge off. But by relaxing all the other muscles I was having more pain all over my body instead of just in certain spots. Anyway I thought I bring the prolotheraoy and flexeril up cause it has been so helpful for me. I would however make sure you find an amazing Dr for prolotherapy cause I have heard of bad ones. Thanks for your blog, it has given me insight and hope with trying the Driscoll theory as well!

    • Hi Rachel,
      Thanks for stopping by and please thank your husband for his service for me!

      The Driscoll Theory is pretty amazing – we just lucked out that we had access to my daughter’s head circumference info and it helped us figure out what was going on. For adults, it gets a little more complicated. I certainly understand what you mean when you say you don’t want to bombard your doctor with too much info. I firmly believe that someday, Diamox and mast cell treatment will be standard treatment but that isn’t much help now. It is definitely challenging to share this info with doctors in a way that they can absorb – I still have doctors look at me like I am a crazy idiot – but I know the Diamox and mast cell treatment is helping my daughter. For what it is worth, my best advice for getting a doctor to consider the Driscoll Theory for you, is to print it off and give it to them so they have time to read it and absorb it. The ones who have actually read it are able to have a real conversation about it. It is very, very challenging at best though. And CCSVI is even more controversial. I think if you are going to be close to someone who can check you for it, it would be worthwhile to look into it.

      As far as why Zyrtec is mentioned frequently, I think it is because it tends to be less likely to make you sleepy, but any of that class of antihistamine will work – Zyrtec, Allegra, Claritin, Benedryl – in combination with an H2 blocker – Zantac, etc. It is really a matter of which one you respond best to. You might have a particular combo that works best for you. My daughter takes Zyrtec in the morning and Benedryl at night and Zantac both morning and night.

      I have looked at prolotherapy and think it is very interesting. My daughter has a big aversion to needles, so it just isn’t a possibility for her right now. I figure it is an option she can consider when she is older and making her own decisions. I agree that you definitely would want a very experienced doctor, if choosing to give it a try. I am glad you have had good results from it. I hope you continue to do well with it and find answers for all of your issues. EDS is a huge challenge and I hope you find doctors who can help you!

      Good luck and thanks so much for commenting!

  3. […] Yet another Dr Rant « Our Life with Ehlers Danlos Syndrome. […]

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