Re: Saw my pain doctor for first time

From: DT (
Wed Dec 21 19:34:36 2005

Hi Lindy,

Thats not the first time I've heard a Dr. that thought the problem was due to "nerve damage" from the surgeries. I do not feel that accurately describes my condition...after 14 surgeries in 12 years I know the source of

my pain. Its not nerve damage...its adhesions that have bound up my intestines to my bladder and then to the pelvic wall, so that I could not stand, sit or lie down without excruciating pain. Yet even after the amount

of history, background information, and research I shared with my Dr.s (up to but excluding my most recent one) they almost to a one would say the same

thing at the outset ..."its probably nerve damage..." Oh least they are accepting your pain as being real. That's a promising step in the right direction!

I can't speak to the Hypogastric Injection - never had one and I'm not familiar with the treatment. I can help you a little bit with the Neurontin. This is all just my experience. I'm not advocating it or telling you to avoid it - you need to decide that for yourself. I was prescribed Neurontin by the Pain Mangement (PM) clinic I've been going to for the last three years. Neurontin is an anti-seizure medicine that has been touted as a "nerve pain" relief medicine. Many Dr.s in the PM field believe strongly that Neurontin is a first-choice foundation drug...i.e. the

drug that you take every day, several times a day, in addition to any narcotics or other pain medicines. This drug is dispensed in 300mg capsules

and it can be taken up to 3000mg per day, although the standard therapeutic dose is supposed to vary from person to person. Your Dr. will want you to gradually increase the dosage to determine if you are getting any benefits or if there are any side effects. If you have EVER had seizures, or if there is a history of seizures in your family - tell you Dr. because you should be closely monitored.

I was on Neurontin 2400mg for 1 year 4mos. To me it was the biggest waste of time and money and I never noticed any beneficial effects. However my pain management Dr. would ONLY prescribe Neurontin at first and would not even consider another medicine until 6mos of strict Neurontin. Only after I

did not demonstrate any pain relief would he consider adding another medicine - this time the Durgesic Patch. He would not let me stop the Neurontin, however. He said it was helping even though I did not feel the effects. I kept taking it for about 2months more but then I tapered off and

discontinued taking the medicine myself. I do not want medicines I don't need.

I'm not saying it won't work with you, I'm just saying that it is an experimental medicine in terms of its use in PM practices. You will probably have a very bad headache for a couple of days but that will pass. If you don't have a history of seizures or a family history of seizures then

you may wish to just try it out. The frustrating part of all of this is if you refuse certain medications, especially non-narcotic meds - many of these

Dr.'s will treat you as though you're only in it for the narcotics. Its a load of BS but its part of the process. Just don't forget that its your body and you are ultimately in control. Besides, there have been some recent articles regarding Neurontin's efficacy in PM and some questions are being raised about whether it actually does any good. Keep an open mind!

There are other non-narcotic meds a PM Dr. might suggest, such as Methadone,

Marinol, and Ketamine. Each has its pluses and minues and you should carefully read up on each (side effects and effect) before making your decision. The narcotic medicines are wide and varied. The good thing about

the Durgesic (Fentanyl) patch is that you wear it 24hrs a day. It delivers a steady dose of medicine. You can take breakthrough narcotics with it. I've been at 150mcg patch now for over 2yrs. I'm decreasing the amount of breakthrough narcotic (should be at zero by Christmas) I take right now because I had surgery a few months ago and I'm still having pain, but I need

to know if the pain is from the adhesions or from continually taking the pain medicine. There have been studies suggesting that people who take pain

medicine for long periods of time feel pain even when the source of the pain

has subsided. I want to be sure that I'm not feeling "pain" just because I've been in pain for so long. It sounds nuts but I think there's some validity to it.

Anyway ... hang in there and work with your Dr. as much as you can. Also, read up on Pain Management practices yourself. If you've got internet connections at home you can get a lot of info online. If not - go to your local library or a college and use their computers. You could even go to a local hospital and check with information to see if there is a medical research library.

I wish you the best of luck.


>----- Original Message ----- Sender: (Lindy) Subject: Saw my pain doctor for first time > > I saw my pain management specialist for the first time this week. I > have had pain issues after multiple surgeries on my abdominal and pelvic > area for cystic ovaries.

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