[jjenholland]

I have a chronic neurological condition where 4 years ago, for no reason, my body started producing too much spinal fluid. Because of this and a ********************py neurosurgeon I lost all of my peripheral vision in both of my eyes and have had 25 surgeries to date to try and correct the problem.

I do have a shunt from my spine into my abdomen draining the extra fluid but I have had every possible that can possible happen. Anyway, obviously I deal with pain 24/7. Vicodin, Percodet, Darvocet, Dilaudid and even MS Contin doesn't help. The only thing that really helped was Demerol and I am up to taking 100mg to 150mg and even then it sometimes doesn't help the pain.

My neurosurgeon understands my pain and says she will help me try and control it. I have had suggestions to try the Fentanyl patches but they scare me. Addiction runs strong in my family, but my husband feels that if I am not addicted yet, and I am aware of it, I should give it a try.

My mother-in-law, yes, the wicked mother in law, says that they only give that to cancer patients and my pain isn't that bad. Ok - 25 major surgeries in 3 years with scares from boobs to bottom on both sides and extra "things" in my body that I wasn't born with and I don't need any pain meds....

Anyway, sorry to go on and on but any help or suggestions would be great!

Thanks!
Julie

[Robert_325]

The thing that seems obvious to me when looking at the meds you just listed is that every one of them is an instant release medication except for the ms contin. Don't know what dose you were on of that but it's not important right now. My point is that when people are going to be on pain meds permanently or very long term then these instant release meds you listed are fine for whats called breakthrough pain but they are not good for us in large quantities. They are tough on the liver.

Sounds to me like you need some extended release or long acting medication in your system. Has anyone mentioned methadone? It's really a good pain med and not near as bad for your body as the meds you listed. The fentanyl patches are an extended release med too and would be better than all the instant release meds you are taking now. But I would talk to the dr about the methadone if I were in your situation. If you were on a reasonable dose of methadone probably a smaller dose of oxycodone or something similar without all the apap would be enough to take care of the worst part of your pain. That is just my opinion. I am not a dr. Let us know how you are doing. God bless.

[jjenholland]

Thanks Robert. I didn't know what drugs were used for breakthrough pain and what were used for long term or chronic pain. I have an appt. next week and will definetly discuss your opinion. Thanks again! Julie

[Robert_325]

Originally Posted by jjenholland

Thanks Robert. I didn't know what drugs were used for breakthrough pain and what were used for long term or chronic pain. I have an appt. next week and will definetly discuss your opinion. Thanks again! Julie

Glad to be of help. That is what we are here for. Please do me a favor and let us know what your doctor says following the appointment. This could possibly help someone else in the same or similar situation. God bless.

[palehorse25]

Hi. If someone responds to you with some advice that helps, could ypu please let me know. I, too, am dealing with thhis type of pain. My situation os a little diffrent, but the basis is the same.
In 1988, while serving on the Army as a paratrooper in the 82nd Airborne Division at Fort Bragg, I was involved in a parachuting accident. We were jumpimg out of a C-130 at Fort Bragg and the guy in front of me dropped his static line as we got to the door. It wrapped around my arm as I was going out the door, so I ended up being towed by my arm behind the plane.
It was pretty violent (next time your going down the freeway at 70 m.p.h. stick your arm out the window. Then double that (the plane was doing 140+) and apply it to your whole body. That's what I was going through, but spinning, banging the side of the plane, smashing my head into the side of the plane, all the while being hit by others as they exited. As loud and as violent as it was, it all of a sudden got real peaceful and calm as I fell backwards, my feet coming up in front of me towards the sky and my chute coming out from behind my head.
Not long after this, I was at Flight School @ Ft. Rucker, Alabama learning to fly helicopters. I started having headaches and went to sick-call. The doctor didn't even look at me. He said, "You're just dehydrated. Drink more water".
When I got back to my unit, my training officer pulled me aside and said,"Look, you're about to become a pilot. You don't go to sick-call for headaches. You just take Bayer aspirin, Goodys powders, whatever you have and deal with it. Or, they're gonna ground you and you'll never fly again.
So, that's what I did...FOR TEN YEARS.
Then one night while at a local high school football game, I was walking across the field at half-time to the snack bar. All of a sudden, it felt like someone ran up behind me and stabbed me in the side of my head.
The next day, I went to the E.R. and had a C.T. done. Monday, they sent the results to my doctor. He called me in the next morning. Tuesday, I went in and the doctor said I had a condition callled "hydrocephalus", also known as "water-head baby syndrome". I was sent to a neurosurgeon the next day and had my first brain surgery that night.
That was in 1998. Since then, I have had to have >30+ diffrent procedures. After one surgery, I lost all use of my right side. Since then, I have regained almost full use it again. However, I'll most likely be on pain-meds for the rest of my life. I too have tried all those other meds, the two that have worked the best and are safe for me are Demerol or Oxycontin. When I was on the Oxy, I was taking 120mg 3 times a day. I was pretty happy with that med because I didn't get the "peaks and valleys" feeling. But, thanks to all the dumb-asses looking for a fix, breaking into drug stores, crushing them and shooting up with it, people like me can't get the pain relief we need. So, I've had to go back to using Demerol. It's not as long lasting, but it helps.
Unfortunately, since I've been on it since the '90s, and now way almost twice as much as I used to, my Demerol isn't working like it should.
It used to be that a 50mg dose would last me for hours. Now, I can take 100-200 at a time and not feel a thing. Sometimes, I think the only thing my medicine is doing is keeping me from going into withdrawl.
I don't want the lightheaded feeling addicts seem to prefer, just relief from pain. As a professional pilot, I'm a control-freak. I hate the light-headed, out-of-control feeling. But given the choice of pain or the blah-feeling, I'll take the latter.
But the Demerol isn't working anymore for me, so if anyone gives you some solid advice, would you please let me know. I would really appreciate it.
Thank you.
Sincerely,
Scott W.
palehorse25@hotmail.com

[Robert_325]

That is quite a story. First of all thank you for your service to our country. I have two personal friends who were in the 101st Airborne during Vietnam. The stories they've shared are incredible. The airborne paratroopers do some of the craziest stuff of everyone. You have my most sincere respect.

I can hardly imagine going through what you experienced for ten years! That is very sad. It's unreal that a superior would have such little compassion to tell you to take some aspirin. What an idiot! I understand soldiers having to suck it up and endure some pain but give me a break. There has to be a limit. They knew what you had been through during the accident. Of course all of that is history now, so what to do next is the question of the day.

Surprisingly demerol never did all that much to help me either for the serious pain I've had to deal with over the last forty years. I'm really not all that surprised to hear what you say about the demerol not working very well for you. There are alternatives to demerol.

After thirty "procedures" for this condition what kind of a prognosis are you getting? What do the drs say about your future? Are they saying you will have to take narcotic pain medication for life or are there any kind of reasonable alternatives available according to the professionals? I can only assume that the government would be financially responsible for whatever you require?

I would assume that it's illegal for a pilot to be under the influence of narcotics while flying. I know nothing about the actual regulations but it's only common sense that being "stoned" (or whatever one wants to call it when we are taking narcotics) whether prescribed and legitimate or not, would have to be unnacceptable. You know the regulations I'm sure.

I have to wonder about your prognosis as that would be what I base my advice on. If there is a medical procedure, or a serious of procedures that would "fix" your problem, obviously that would seemingly be the way to go. If you are doomed to live with pain medication forever then my advice without a doubt would be to seriously look at switching to methadone. It doesn't get you high when used properly (it would be much safer for a pilot than RX pain pills as there is no euphoria), it's much safer physically than lots of RX pain meds as it doesn't put toxic amounts of medication on your liver, it's probably the safest med for you to take if you're going to be doing this type of treatment for life. Most importantly methadone has outstanding pain relief benefits, it's not just for heroin addicts trying to kick their habit. So if you don't mind me asking what is your prognosis? I wish you the best of luck and God bless.