Meds for pain: Marinol and Namenda

[suemck2]

Hi all
I'm a lurker; I don't post much. I've had CP for about 7 years I had multiple neurosurgeries for brain/spinal cord problems; placement of a neurostiimulator which my body rejected ...

My neurol. suggestted and my PM doc aggreed I can try Marinol (active ingredient of marijuana- side effect gives you the munchies - to the point that it's used for anorexics to stimulate appetite. I DO NOT need to gain more weight and am just getting to be active again after last years' spinal cord detethering surgery.

The other is Namenda- an Alzheimer's drug but apparently it's been used successfully experimentally for treatment of migraines and "headache".

Just curious if anyone has any experience with either. I'm at a point now that I'm for the first time I'm able to handle the pain of muscle strngthening of PT and do not want to make any med changes (currently on oxycontin with fentora 600 mcg for breakthru 3x day) to rock the boat. I really need to strengthen my back/shoulders b/c I'm fused skull to C6 and now c6/7 is showing stenosis and the neurpsurgeon says if I don't build the muscle to support the fusion I'll need more surgery. NO MORE SURGERY!!!!!!!!!!

OK that's enough- thanks for any help you can provide
Sue from Raleigh NC

[Nana4&cntn]

Hi Sue, and welcome to BT!

My name is kathy and I just spent some time looking up the meds you mentioned. Honestly, I don't understand the rationale, but I am not the Doc.:confused: Will the ins. co. even pay for these meds? All I saw they were used for was eating disorders. I just don't know, you have a tough decission to make.

I would also be a bit concerned due to the weight gain, not so much for vainity reasons, but because how it can cause more spinal damage. I also think you are right about strengthening the regions of your spine that are haven't been fused.

I have blabbed and not helped much, I am so sorry you are going thru all of this. I would have a very serious talk with my doc and express you concerns. You have been thru so much to as you said "rock the boat"

Take care,
Kathy

[suemck2]

Hi Kathy-
Thanx for thaling the time to look into this for me and for responding. After 3 neurosurgeries, each 6 months apart- the last 1 1 year ago I've put on 30 pounds - which for me is alot of weight - I was 125-130 pro-op- well actually I was 115 preop b/c I was so sick and had dyspagia (inability to swallow) so I could barely eat and was throwing up a lot frow head pain. Ah- the sick thing is- I liked looking that skiny and my boyfriend has a warped sense what looks like a "healthy" body - we both know know and talk about the fact that his view isn't normal or healthy but I can't help but be affeted by it .... ok... got off track.

I'm gonna talk to my neurologist a little more about this when I see her next month. By PM is a great guy, but he's more of a technician than he is knowledgable about meds. Plus he knows I've got a doctorate in neuroscience so he defers to my expertise a lot. If I come in a say I want to try X, more often than not he'll say OK.

I'm gonna start off by checking with the Ins co about if they cover it. I know my PM doc said the Namenda is $160 a month so it's not outrageously priced - I guess it's been around for a while.

Anyway
Thanks againand be well,
cheers :)
Sue

[Mark N]

Sue, I don't know about the meds your doctor is suggesting but I agree with not rocking the boat when you have adequate pain relief. I hope you can keep your current pain meds and continue to do the PT to strengthen your muscles so you can avoid any more surgeries.

[suemck2]

Thanks Mark- that saying- "if it ain't broke don't fix it" rings true.

But I'd love to get off the opiates or at least diminish them- but I agree- as long as I'm making progress in PT I shouldn't change anything b/c the last thing my spince needs is more fusion. I'm already fused from skull to C6 so stenosis of C6/7 means I'd be fused from skull to almost my rib cage! And I don't do well with surgery.

I sterted all this out several years ago with an occipital neurostim and my body rejected the occipital electrode paddle (medtronic quadrople). Now I've gone full circle and the NS that operated on me suggested a neurostim - not remebering my history and that another NS had tried that before I came to see him. I had read thru the patent literature a few years ago and there were some elctrodes in development for brain stim that were coated with anti-inflammatory compounds to prevent rejection ... I may contact a Medtronic rep. and see if they've got anything in the pipeline ...
Pain sucks ... speaking off.. I'm off to the dentist!

Thanks again for your input! :)
Sue