How can I get across to the doctor that I'm in Pain

[tazmanforever]

In 2000, while at work, I had 5 rolls of chain link fence fall on my head and neck.  Before this event, I had severe headaches/migraines, but after the accident, I began losing consciousness and losing weight as I had no appetite and was nauseated quite a bit.
My worker's comp doctor decided to send me in for an MRI of the brain and found a 5cm x 5cm sized sub-arachnoid cyst in the posterior fossa of the brain between the occipital lobe and cerebellum.  The doctor immmediately referred me to UC San Francisco med center, (about an hour and a half from my home in the Central Valley of California), where we discussed treatment options and decided that fenestration of the cyst was the way to go.
In March 2001 I went in for the surgery expecting a miracle, I guess, but my symptoms actuall worsened.  I began having seizures, (which the Dr.s called "non-epileptic episodes"), the headaches/migraines grew increasingly worse and, it seemed, I ended up in the E.R. 2-3 times a week.
In Aug. 2003, it was decided that I needed a VP Shunt placed and so it was done.  I became so bad at this point that I was crawling everywhere that I had to go and was vomiting profusely.  I dropped alot of weight and it really scared my wife and children.
In December 2003, thanks to an E.R. doctor and a good CT scan, it was discovered that the shunt was over-shunting and that my brain was literally shriveling inside my skull.  The neurosurgeon ended up tying off the shunt and I became better than I was, but still had all of the original syptoms.
In April '04, I went in to UC San Francisco to have the shunt completely removed.  It was a "same-day" procedure and they sent me home.
I had lost my job by this point due to all the time I had taken off because of my illness(s), (as would be the case over the next few years).
Anyhow, when the Dr. sewed me up after the shunt removal, he apparently didn't do it right as I had CSF leaking out of the site,  I went to the hospital that night, signed in at 7:30 p.m. and they were packed so when I hadn't even been triaged by 10:00 I decided to wait it out at home because I didn't want to get any infections, expecially with the CSF leaking out of my head.
The next morning, I went in at around 4:00 a.m. and was seen right away.  The E.R. doc called UCSF about my condition and they told him to sew me back up.  Instead, he used staples and sent me on my way.  It didn't fix the problem, but I had set up a few job interviews and wanted to be there for them.  I made it to one interview and sat through the entire interview blotting the back of my head with a handkerchief because I was still leaking.
That night, after I'd gone to bed, I woke up at about 3:00 a.m. and my pillow was soaked.  I changed pillows and went to sleep on the couch, but woke up about an hour later vomiting profusely and each time I'd vomit, CSF would literally squirt out the side of my head and hit the wall beside me.
By the time my wife woke up that morning, I guess I looked like death warmed over and she called an ambulance.  I could not walk or crawl at this point and had a high fever.
As it turned out, I had contracted Bacterial Meningitis.
I have managed to find gainful employment, even being honest about my health, but it seems that my illness gets in the way every time; Migraines, Loss of Consciousness, Non-Epileptic Seizures, etc...and now that I have been placed on State sponsored Medi-Cal, none of the Medi-Cal doctors will prescribe narcotics anymore.
The last 2 years, with insurance, the doctor saw my condition and kept me comfortable while still making sure that I was taking my medicine as prescribed, but now I lay in bed most of the time with the shades drawn, once again nauseated and losing weight and constantly in pain, although I am currently on 2000mg day of Valproic Acid and 100 mg a day of Tramadol.
As I've said, I have a wife and 4 children ranging in age from 3 years to 14 years and I don't want them to remember a Dad that couldn't be a part of things because he was always in pain.

Any and all suggestions and help are appreciated.

[Tuckamore]

We don't think you are whining. We all vent. Most of us have been in similar situations. Keep searching for an understanding PCP. They are out there.

I'll be thinking of you and watching for your updates.
Take care, Tuck

[Ghilly]

Have you considered finding an attorney? It sounds to me like you might benefit from one at this point.  It CAN'T be considered good medical practice to do the things they did to you and then leave you in the lurch like this, and if you got legal help and were able to get some monetary compensation, say from a malpractice suit against the any of the clowns who worked on you, you could at least have the means to go to a regular doctor instead of a Medi-Cal doctor.  Then maybe you could get the pain relief that you so obviously need.  

I am SO SORRY to hear what you are going through.  I am of the belief that people are too quick to call their lawyers for frivolous things today, however in your case, it has left you with absolute ZERO quality of life and someone should be held responsible!  100mg of tramadol a  day wouldn't take care of a serious toothache!

Ghilly

[nick30]

don't worry, we understand your frustration, we have all had a gutful of the health system from time to time. hopefully if you can get your original injuries treated properly you may get a reduction in pain. I've never been prescribed pain meds from a Neuro so that's not unusual. Perhaps just a good local fmily practice kind of doc might be your best bet. I hope you have someone local who knows you well. If not, it's time to find one.
Best of luck with everything.

Nick.

[tazmanforever]

Thanks for all of the support.  I went for a head and neck MRI yesterday and I believe I have a great neurologist, she simply refuses to prescribe pain medications.  She believes that I'm in alot of pain, but it's just her rule to leave it to primaries and unfortunately, I've been to 4 primaries and 1 internal medicine DR through state insurance and they all refuse to give pain meds.  To boot, there is no pain management clinic in the area, or within 100 miles, that will accept my insurance.
I am, therefore, forced to pay cash to see a decent DR.  In the interim, when the pain gets bad enough, I go to the ER and get a shot of Dilotid which helps for around 24 hours, but the pain is never completely gone.

I really don't mean to come across as a whiner or with a "poor little 'ol me" attitude, I am just extremely frustrated with the system at this point.  Thanks for all of your advice and I will keep in touch.

[Tuckamore]

Hi Taxman,

Welcome to the Pain Management Forum. My heart goes out to you. What a tragic story for anyone let alone someone so young with 4 children to raise.

I think that even with state insurance there should be better care and better medication available to you, even if that means you may have to search the state of CA. Or move!! Your health and well being is worth it.

Don't be content with what you have now. In my opinion you must be assertive with you health care. Don't be afraid to leave one clinic or physician for another. Have you contacted a local official that may be able to give you more guidance?

In my opinion whatever you decide to do will be better that what you have now. Please keep in touch with us and let us know how your plight for medical care that meets your needs is going. We are here for you to support you and listen. I'm wishing you the very best and will look forward to your updates. Take Care, Tuck  

[nick30]

That all sounds like the mother of all stuff ups. I wouldn't be going near any of those dr's again. nor would thier opinions ever be something that i would listen to. Hardly surprising that you've contracted BM with a hole in your neck spurting out CSF every time you puke. You may be lucky that you're even alive. I'm not a Dr but leaking CSF can cause death.
As much as I sympathise with the pain, I would be more worried about the other things. One thing I would like to mention though. You are on Tramadol. I and many others(in reality though, only a few % of all people taking tramadol)experience seizures from either taking it, or ceasing to take it.
Did you have seizures BEFORE you took tramadol? I'm not saying that you should stop taking it(which should never be done w/o Dr's approval), I'm ot even suggesting that it is the cause of your seizures, but it is a possibility that you might want to consider taking up with Dr's. I certainly hope your pain is controlled adequately whilst you are searching for better healthcare.
I wish you all the best.

NIck.

[Mollyrae]

Hello tazmanforever and welcome to the Pain Forum:

That is a horrible story and I am very sorry that you've had to endure the constant pain and struggles with this.

Your first priority is to find better care. You are your own advocate and must start looking for a new Doctor. It sounds like you live in California so there must be quite a variety to choose from whether you receive state aide or not. You must start calling or get referrals from other Clinics. Sandee had some good advise in getting into a Pain Specialist, it might be one of the first calls to make.

Googling may be an option. I do know of other members who have found good Pain Management from surfing the net.

In my opinion, the next step would be to find a really good Neurologist and be re-evaluated. An MRI with contrast wouldn't be a bad idea.

It sounds like your plate is full with the health issues and trying to raise a family and making sure that they have everything they need. My heart goes out to you. I wish I had additional advise for you. We are always here and a great place to vent if nothing else. Please keep in touch and good luck with everything.

My best,
Mollyrae

[sandee1818]

I am so sorry your in so much pain. Have you checked with all the doctors that take the state insurance? I think with your injuries there would be one that would help you. There are pain management doctors who see Pts on a cash basis. Here in Fla there are several that charge 250.00 for the first visit and then 60.00 a month after that. It is pretty affordable.