advice for humiliation

A situation that is haunting me... Yes it's in the past, but the memory keeps tugging at me. It leaves me wondering, What should I have done then? What can I do now to make peace with the situation? I so wish I knew the answers.

What happened was this:

In 2004 I was at school on the east coast. (i'm at home on medical leave at the moment) I had a new GP there who seemed great and was affiliated with a well-known and highly respected teaching hospital.

In October, I suddenly developed all the symptoms of shunt failure. As it was a Friday, my GP advised me to go to the ER at her hospital, which I did. The ER docs were excellent. A CT of my abdomen seemed to show something wrong with the distal end of my lumbar shunt. A spinal tap showed that I did indeed have high intracranial pressure. The ER docs felt it would be best if I were admitted overnight for pain control and neurosurgical evaluation.

My optic nerves looked fine at this point. Which is consistent with my history of not showing papilledema (optic nerve swelling) even with very high intracranial pressure. There is a decent body of medical literature out there about intracranial hypertension without papilledema. It's a well-documented variation of the syndrome, and ICP cannot be judged by the state of the optic nerves alone. Some people, like me, do not show papilledema most of the time but then mysteriously have it at other times. As of yesterday, my nerves were badly swollen.

So, I was admitted to the hospital under the care of one of my GP's partners-- We'll call him Dr. Gold. He seemed nice, and called for a consult with pain management. The pain doc came by and prescribed a muscle relaxant and increased my dose of amitriptyline. A neurosurgery fellow came in and went over my history, etc. I was then told I should stay for a psych consult- the psychiatrist on call that weekend came by, seemed nice enough, okay.
Saturday the chief of neurosurgery also comes by and takes a thorough history. I never see him again.

I lose some time... God only knows what happened, I was so sick, upset, tired, bored, lonely, that I really don't remember.
They still don't discharge me or offer to fix the broken shunt. It's now Monday and a different psychiatrist comes around. Dr. Gold comes by with one of the fellows from clinic, and I am under the impression that neurosurgery is still considering the shunt problem and best approach to management.

Tuesday the psychiatrist comes by again. I complain to him that neurosurgery has not been back to see me since Saturday, and that I am also clueless as to what is going on- And one thing I do not like is being left in the dark. He asks me if I might find it helpful to meet with all of the doctors so that they can all talk to me at once and tell me what the plan is. I agree that such a meeting is a good idea, and he leaves saying he'll set it up.

Wednesday, no meeting. On Thursday, six (count 'em) MD's walk into my room and stand around my bed. Now, I don't know about you, but my idea of a meeting involves sitting down on equal footing to talk to these people. It is highly uncomfortable for me to be entirely alone with no friends or family to support me, and so many people towering over me in the damn hospital bed. This is not the kind of meeting I had in mind. But okay, roll with it, it's okay.

Dr. Gold is there with a couple of his associates. The neurosurgery fellow is there. The psychiatrist is there. The chief of pain management is there. Here comes the humiliation.

The neurosurgery fellow takes the lead and tells me there is nothing wrong with me. Nothing. I am absolutely stunned. I thought I was done dealing with people to whom I have to prove my history. I counter him with questions about shunt function and my clearly abnormal opening pressure from the spinal tap. He blows me off in an extremely rude manner.

Me: Tell me how I knew my shunt wasn't working, then, if there's nothing wrong with me?
Neurosurg: Well I think your shunt hasn't been working for a LONG time and you just happened to choose to come in now.

What? What the hell is he talking about? Why is he talking in such a condescending manner? Why would I lie about something like this? I tell them that unfortunately, yes, I do have pseudotumor.

Pain Mngmt: But you don't have papilledema. You can't have pseudotumor without papilledema.
Me: That's not true. There are plenty of cases- It's called pseudotumor cerebri sine papilledema.
Pain Mngmt: [turning to neurosurg] Really. How often does that happen?
Neurosurg: [looking directly at me] It DOESN'T.

Who is the pain guy going to believe? The young patient, or the "experienced" neurosurgeon? Surely not the patient.

Me: What about the Chiari malformation?
Neurosurg: You don't have that, your MRI is fine.

Not exactly. The MRI that he was looking at was very old, done before I ever had a shunt. I did have 4 mm of tonsillar herniation in those films, which by itself might not be considered diagnostic of Chiari I malformation. But with a retroflexed odontoid, flattening of the skull base, and a heap of other "small" abnormalities it all adds up to decreased CSF flow, a crowded foramen magnum, and a diagnosis of Chiari I.

In my more recent MRI, which he did not look at, the herniation was much larger, and the CSF spaces around the cerebellum were all but obliterated. Cine-MRI showed greatly decreased CSF flow both anterior and posterior to the cerebellar tonsils.

Dr. Gold: That diagnosis was based on a bad paper from an even worse journal. You do NOT have Chiari.

What?? Why are these people talking in such militant tones?? My regular neurosurgeon is considered one of the leading Chiari experts in the country. He has worked with these people and they know him. They know that he is well published and respected.

Me: But Dr. Frim is the one who diagnosed me with Chiari. Haven't you talked to him about this?
Dr. Gold: Doctor Frim agrees with us that there is nothing wrong here.

A bit of fear ran through me. I know my neurosurgeon better than to believe that, but... what if he really did agree with them? Who was going to help me now?

At this point I began to cry. It is rare for me to cry about anything at all, but I was caught so off-guard by this. Like being punched in the gut. I didn't get it- why didn't these people understand? Why were they being so hurtful and insinuating that I was only there seeking some kind of sick fulfillment? They all but said the word Munchausen's.

Tears literally pouring down my face at this point, I could hardly talk.
Enter Dr. Gold: Well, Bronwyn, what I want to know now is why are you crying? We just gave you GOOD news. Shouldn't you be happy about that? What's so upsetting about the great news that you've just heard?

Me: [literally choking on tears at this point] I am crying because you're wrong.

Things went on from there, but writing it out in this detail is just upsetting me all over again. One of Dr. Gold's fellows literally shouted at me at one point, after I asked why they bothered to keep me in the hospital for so long if they didn't plan to help me. She took this as a personal insult and totally lost her cool.

Nothing is wrong, nothing is wrong, nothing is wrong. So discharge me then. Fine, we will. We've scheduled you for an ophthalmology consult tomorrow morning, even though we know it won't show anything. All you need to do is follow up with psychiatry, because we think this is more of a psychiatric case. And check into acupuncture sometime.

They shuffled out and left me there, sobbing because I felt so let down. I had trusted these people. I stayed in the hospital for almost a week believing that they would help me. Instead they pulled the rug out from under me. Told me it was all in my mind. But go see the eye doctor anyway.

I was so upset I very nearly cancelled the eye appointment. But I went, and after a dilated exam and photos of my optic nerves, guess what the ophthalmologist's final diagnosis was?

Pseudotumor cerebri, chronic. I hope to God that the ophthalmologist's letter made it to every single person who was in that room brow-beating me for almost an hour.

There are a few crackpot neurosurgeons out there who will diagnose anyone and everyone with Chiari and do surgery on them- These neurosurgical "hacks" do exist, and have even been featured in mainstream media for their radical practices.

My regular neurosurgeon is not one of those hacks. He is chief of pediatric neurosurgery at a large teaching/research institution. He publishes frequently in respected, peer-reviewed journals. He treats both children and adults with Chiari and related problems such as pseudotumor.
My brief fear that he agreed with those six doctors was unfounded. He backed me up, and helped me where they would not. I never have to see any of those six people again.

But that "meeting" still haunts me. What did I do so wrong that they would not help me? That they decided I was crazy? What can I do to seek closure? How can I restore my dignity? How can I let them know that what they did wasn't right? That it was hurtful and humiliating? Indeed, that it was the most humiliating experience I have ever faced?

Maybe I didn't portray the situation very well in my writing here, I don't know. Writing about it has me crying again, though, and my back is sore from today's spinal tap. Severe papilledema and my highest opening pressure ever. I wonder what they would say to that.

I'm so upset about my current situation, the past, just.. everything health-related right now. I wish I could wake up one morning and just ignore all this. As if that were possible, when my sight is at risk and my head is pounding.

God knows if this entry even makes sense. So much for keeping my chin up tonight. I'm sure things will look better in the morning, though.


Blogger Carrie said...

{{Hug}} I'm new here.

If you can, find out who is HEAD of that hospital. Put this entry in letter form. Send it to the HEAD of the hospital. If you want, also consider contacting a lawyer who works on contingency and sue the bastards.

I was so upset for you, reading this. I hope that you called out your own specialist on this and got his apology for allowing himself to be lead astray by those other doctors. No one deserves to be treated as you were. I'm so sorry this happened to you.

11:23 PM  
Blogger Dreaming again said...

I posted a long response earlier, then lost it :(

I wish I had an answer for you. This next week marks 13 years from my diagnosis with Myasthenia Gravis & 15 years from when a neurologist told me there was nothing wrong with me but stress & depression. When I asked her if stress & depression was doing this to my body, should I see a psychiatrist her response was a very rude "No, you should just stop being a baby about being a new mother!"

It's been 15 years, and that exchange still colors every action with new doctors today. I wonder if they're going to believe me. I wonder if they're going to dismiss me or write it off as 'depression'.

What Dr. H didn't understand is that I'd have given ANYTHING, (and still would!)for this to be a truely psychological issue ... to be a truely depression issue. I could pop some prozac, I could do some psychotherapy & gone would be the weakness and fatigue & mouth sores & pleurisy & monthly blood work as well as the constant medications that I take & frequent doctor appointments.

I wish I could tell you this would go away, I can only tell you that I hope that you find a way to compartmentalize it better than I have. I've had literally thousands of appointments & dealings with doctor's ( not thousands of doctor's ...thousands of appointments, meetings interactions etc) and well over 2 dozen doctors.

I've had 5 or so bad experiences.

Yet the 5 bad experiences put me in a place of always being on my guard.

It is not fair to us that they do this. It is not fair to our families. It is not fair to the good doctor's who won't get our trust but deserve it because they betrayed that trust.

But, it's the way it is.

Keep posting, keep talking, keep communicating ... :)

11:41 PM  
Blogger bronwyn said...

Carrie- ((hug)) back, and thank you for your comment, I really appreciate it. I plan to call Dr. Gold tomorrow... And I will make it clear that if he doesn't want to speak to me, he has the option of speaking to my lawyer instead. UGH

I dropped by your blog- Once I figure out how to modify my blog template to add links (blogger confuses me, lol), I'll link you.

Dreaming ... Thanks for the insight.. The doctor that said that to you should be strung up by her thumbs! What a terrible thing to say. I can see why it still colors your interactions with the docs.

I've had a number of bad experiences with doctors, but being verbally attacked -- Not to mention them trying to turn my own emotions into weaponry against me-- by the entire group of them takes the cake at the moment.

Going an entire night after abdominal surgery with no pain meds is up there, too.

I know what you mean about wishing they were right. I wish every day that I could get up and ignore all this, or work it out somehow. Unfortunately my body does its thing whether I approve or not.


Oi. I'll have to write an entry soon about the good things that have come of all this, because there are many. I've met many brave and kind people, and learned something from each of them.........

12:42 AM  
Blogger Dreaming again said...

Try www.blogrolling.com

You register, then it gives you a code, you put that in your template, and then you go to blogrolling to add names & pages instead of having to add each one to your template. MUCH easier!

4:00 PM  
Anonymous Anonymous said...

geez - what a bunch of ass clowns. how insulting to leave you there in thehospital, as if one ice while they condescendingly assure themselves of their assumptions. i'd be really upset too. hopefully writing about it was therapuetic at least. for links you can also go into your template section and cut and paste some html code. check out my "source code" under the view menu in you internet browser... or blogrolling works too as mentioned above.

9:59 AM  
Blogger Dreaming again said...

Hey there. Just checking on you. How are you doing?

12:08 PM  
Blogger The Clerk said...

Wow. I can't imagine how afufl that must have been. Can I offer a bit of advice though? You obviously know a lot about your condition. Doctors should love that, right? They should say - 'excellent, this patient can tell me what's wrong with her and make my job a little easier.' What they think in reality is - 'this patient has some crazy ideas about what's wrong with her...better call psych.' It's ridiculous, but it's reality. Maybe the best thing to do in situations like that is to feign ignorance, at least at first, and see what they come up with.

10:13 PM  
Blogger bronwyn said...


No offense, but I think you're way off base in this particular situation-- For starters, you go to the ER and they ask you, "Do you think this is your shunt?" And then they proceed with all their tests.

By the time I got out of the ER, we all knew exactly what the problem was.
When they started telling me nothing at all was wrong with me, I couldn't just play dead an go with it. I needed help!

If I had gone along with them, they would have tossed me out the door with a bottle of depakote.

9:13 AM  
Anonymous Anonymous said...

Hi -
Nothing like traversing Wonderland a'la Alice, no? The Madhatter himself has nothing on the medical community at large nowadays...surprised the Red Queen didn't fly in with "off with her head!"

I have had 7 years of insanity myself as per the medical machine, well oiled with the mandatory routine "psych" consult - once while I was coming out of a hypoglycemic crisis, blood sugar reading at 46!

Have you had decompression surgery for the Chiari? In case you haven't seen it, there is a whole new set of criteria for the recognition and treatment for Chiari now, as per "Chiari I Malformation Redefined: Clinical and Radiographic Findings for
364 Symptomatic Patients"
[Clinical Studies]
Milhorat, Thomas H. M.D.; Chou, Mike W. M.D.; Trinidad, Elizabeth M. M.D.; Kula

If you haven't had decompression, or even if you have, its VERY important that you avail yourself of the information in the document.
Also, you will find all the support, direction and help you need at The World ACM Association Support Group

Please, please and triple please do yourself a favor and go on over there after reading the Chiari Redefined doc.

1:49 AM  
Blogger bronwyn said...

Thanks for the concern, anonymous... I have indeed read that article and kept myself well-informed of the latest data for both ACM and pseudotumor.

I post occasionally to the Yahoo group, but I don't usually have a ton to offer. I'm also only borderline welcome there, since I am not militantly pro-TCI. (though I am not "anti" either, btw!!!)

Again, thanks for the notes. :)


10:52 AM  
Anonymous Anonymous said...

I just happened to stumble on this. I'm also a Chiari patient of Dr. Frim. And 2 doctors told me it was "stress" or something else (I have clear Chiari, not even borderline). It took 5 years to find Dr. Frim and have surgery (eventually twice, as my CSF was totally blocked again). And my optic nerves look "anomolous" all the time. Good luck! Jeanne

8:26 PM  
Anonymous Anonymous said...

Just curious, if a person cannot receive treatment such as yourself..and you find out what is wrong and the only ones that will treat you is TCI(I have since found another NSG that believes all the tests)but they were the FIRST to believe in me and my pain issues.
I have a friend that I has been referred to Dr Frim with ACM/SM as an adult will he help her?
Thanks..and sorry while I am NOT militant TCI, I am thankful that they are there when no one else would listen to me. They ran the tests to find out what the problems are with me

4:44 PM  

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