29.4.05

often we have no choice about our battles

My body is not very good at cooperating. Apparently while my mind was absorbing all those lessons on "group work" and sharing in the second grade, my body was busy readying itself for battle with... itself. It's a painful battle.

::sigh:: I am frustrated over all the medical stuff lately. Above all, I don't understand why doctors don't listen-- I have never yet been wrong when it comes to my body, my health. Every time I've said a shunt was broken/malfunctioning/siphoning/overdraining, etc, I've been right.

This most recent hospital stay was a nightmare as far as anyone listening to me. At the end of February I told the local docs that the incision on the back of my head was infected. They looked at it and said it was fine, not infected, don't worry about it. I left for surgery, and in pre-op told my neurosurgeon I thought it was infected. He also said it looked fine... So I woke up from surgery to find that, gee whiz, when he opened the incision a bunch of pus came spilling out! They had to debride it pretty extensively and shoot me full of antibiotics for several days. (I am pretty damn lucky they were re-opening that same incision rather than making a new one, or who knows what might have happened before they believed me.) They couldn't finish the operation because of the infection, so they stitched me back up and said they would finish things once the infection cleared.

Also before that surgery, I told my neurosurgeon that, in addition to the lumbar (LP) shunt being broken, my ventricular (VP) shunt was not working. He said that it was fine, he had no reason to believe there was a problem with the VP shunt. Fortunately they were going into the abdomen anyway, so he had a look around in there and found that the VP shunt was plugged at that end. He moved the tubing and cleared away the tissue that was blocking it.

THEN, after surgery, I was very ill. As soon as I would sit up, I would start having huge spasms of my diaphragm... Like hiccoughs X 1000. The spasms were terribly painful. I also began vomiting. The vomiting kept on and got so bad that I was throwing up blood. I told them that the VP shunt tubing had to be sticking me in the diaphragm. And I also told them that it was broken again.
They told me no, it couldn't be broken again so soon because they had moved it, yadda yadda yadda. When I went into surgery for the second time, they found that the tubing was indeed poking me in the diaphragm, and it was also clogged with scar tissue.

Those are just a few examples. I hate this feeling that I am fighting constantly to be heard. I shouldn't have to fight the very people who are supposed to be helping me.

8 Comments:

Blogger Dreaming again said...

Soooo frustrating. I have a group of doctor's I rarely have to fight with or for anything. (well, they sometimes fight with me ... as in ... you NEED this knee surgery ...um ... I'm too busy! you need it ... I'm too busy ... Pk you NEED it. OUCH! HELP! UNCLE! Schedule the dang surgery!)

But I have had to argue in the past, but your battles with your docs remind me of my fights with my sons special education system.

Making me fight for services that are DESPERATELY needed, that I would just as soon my son not to have to need to begin with! It is something I don't want to be a part of my life and you throw it back in my face as a constant reminder by making me FIGHT FOR WHAT I DON'T WANT TO BE IN EXISTANCE!!??!??!?!?
how uncompassionate is that?

Sorry you're going through that! Wish there was more I could do to support you! Pamper yourself a bit, you deserve it OK!

9:13 AM  
Blogger blue said...

The most beautiful words I have ever heard from a doctor -- I almost laughed with hysterical glee: "We'll check it out. You're usually right about these things."

Nice blog, btw. :)

8:48 PM  
Blogger imfunnytoo said...

You've hit it on the head. Great Blog.

I've had similar fights, the one where I *know* I've got a pinched nerve in my lower back and have known for a decade...but because I'm fat, they won't listen...or because I have cerebral palsy or both.

I went to Vocational Rehab in July of 2003 and told them I would need help retaining my current job because *something* I didn't know what, was slowing my typing (never that fast to begin with) down. they said and I quote "You figure it out."

I didn't but a physiatrist did ---but not til April of 2004...Carpal tunnel.

The cerebral palsy the asthma the IBS the depression, *they* weren't enough by themselves to put me on disability...but carpal tunnel was. *&^%$#!

Sigh.

5:17 PM  
Blogger Dr. Charles said...

the vomiting and hiccups sound like torture, in addition to everything else of course. when i am sick it really saps away my will to live. you must have a very strong constitution to do as well as you do.

5:54 PM  
Anonymous nikki said...

Our family never had much luck getting the medical community to listen until I started coming to the medical visits with family members in a suit - I'm an autism consultant and I had a suit on so they listened to me - dress anyone up, have them wear their glasses down on their nose, give them a title ( I always wanted to try astrophysician myself) and the docs tend to take an extra look! Not right but it works!

9:12 PM  
Anonymous Anonymous said...

I have brittle bone disease. I had day surgery for a small ortho problem, woke up from the operation and realised my leg was broken. I was in a world of pain but no one would listen. They actually tried to force me to get dressed and go home at which point my husband started 'the yelling phase'.

Why must patients have to yell or their family have to yell before they are listened to ?

Yep, the leg was REALLY broken and I ended up spending my next 3 months recovering after having another surgery to fix the fracture.

I can't tell you how many times I've not been listened to, then end up in worse shape because the Dr's ego is more important then my health.

10:58 AM  
Blogger bronwyn said...

Thanks to all of you for the comments...

PK: Ugh, what is it with the education system?? It can be so similar to the medical establishment... Everything centered around bureaucracy and the need to cover one's arse.

Blue: Thanks! And those would be beautiful words indeed. :)

imfunnytoo: Wow, I don't know if that is slightly ironic or just plain sad. Thanks for stopping by!

Dr. Charles: Thanks much for the flattering take on things. I need to get back to writing about other stuff, beyond my own experiences. The internet is just so conducive to whining. ;p

nikki: All's fair in love and war, right? Too bad getting good medical care sometimes seems like war.

Anonymous: My God... These people knew about your condition and still managed to foul up that badly?? I can believe it, but it's still horrifying. How awful.

3:16 PM  
OpenID jeizbuff said...

haha, good on ya!!

ive had the same problem with my GP, Doctors and neurosurgeons!

i tell them there something wrong with my shunt, they tell me its fine, if it gets worse come back. well it doesnt get worse, it stays like it! it just reoccurs.
(GP)

i have one of my seizures when the headache get really bad, i get called into my local hospital, they know eff all about shunts!!
they give me obs through the night tell me they will give me a CT, but never do!! 'it all comes down to stress, or migraine!) Grr.

i go to Great ormond street my specialist hospital, they give me CT scans and Xrays, nothing shows up but i still know somethings wrong!! 'its migraine'
no its bloody not!!...after about a year and half of these seizures, something shows up from my opthalmologist 'you have papillidema, its urgent you must be admitted, you have pressure building up! we will fit you an intercranial pressure tap into your head to measure this pressure!' WHY DIDNT THEY DO THIS BEFORE?!?!
shows that my pressure was at 95 when it should typically be at 5-10

that night i had one of my seizures and surprise surprise i get rushed into an emergency shunt revsion, when they drill imto my head, fluid squirts across the theatre!!

mayyte we have to trust our instincts and drill them into these people! i cant fault great ormond street, afterall they saved my life and they were the only hospital to take a step to finding out what was wrong instead of leaving it and waiting for the worst.

12:31 AM  

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