Pain Management

[braveheart26]

I have been out of surgery for 20 months now. There are days that I am in total pain in the area of my surgery and down my legs. I have numbness and a tingling feeling at times in my legs but have learned to ignore it until it turns me into Frankenstein and I am bent over and walk very stiff. My doctor gave me a year of pain meds after the surgery which I am almost complete with. But there are days that I need to double up the dose to get by. Perhaps putting on 15 pounds has something to do with the pain. Still I do not think I am too overweight. I weigh 195lbs and am 6'. I was very active before the surgery 180lbs and cycled almost 200 miles per week. A couple of times I was literally bent over in pain. Does anyone have any suggestions about talking to my doctor about pain? I had my MRI in Oct and am still tumor free so I now go for annual checkups instead of every months? Is there any stretching or mobility exercises that will help with the pain? What pain meds should I talk to my doctor about? How do you folks manage pain and how do you approach the subject with your doctor?

[betty]

Hi. I'm 1- weeks post surgery.
Pain management is a big issue and so individual.
Your Dr or physioterapist/PT can help you evaluate pain issues.
I stopped prescription medication at 3 weeks and I so natural things. The discomfort is
still there and once it aches lot I just have to ice and rest.
Good luck to you,
Betty

[cbrantley]

i had surgery in jan 05 for tumor in spinal cord c1-c3. as a result, i have problems w nerve pain particularly in my extremities and very hypertense muscles from neck to thighs. for neuropathy, i take gabapentin. i've been on several different muscle relaxers and hit the jackpot w robaxin. it enables me to move normally and i experience alot less spasticity. for pain in general, when i changed from my md to pain mgmt specialist, he prescribed methadone instead of oxycontin that i'd been using because it's better for relieving nerve pain. this regimen has worked out pretty well for me although nothing makes the pain go away entirely. i also recommend massage therapy and acupuncture.

[sarah87]

Hi, I posted on here several months ago asking people about their chronic pain, and reading answers as well as other peoples' posts is very helpful. I have another question for you guys out there, well first my situation is that I had a meningioma taken out 12/08 between L1 and L2 and have the nerve pain still but manage it with over the counter pain relievers, (I now found out I have a second meningioma or possibly neurofibroma a few vertebrae lower that I'll need removed once its big enough) but anyways: has anyone tried B12 supplements to help repair nerves, and has anyone had great results from acupuncture? I'm really curious about trying acupuncture in 6 months or so if my nerve pain hasn't improved.

[ccollette]

Please help--
My daughter suffers from pain in her extremeties, as well as her neck, flank and back. It never fails, one day one body part, one day another body part. On a bad day, more than one body part. Sometimes she will just lay down and not want to do much, or worse, sleep and sleep. I can tell she is hurting when she can't even stay awake. It is like she gets so fatigued she just goes to sleep. I don't think they are taking it too seriously because they think her symptoms are "vague". From what I understand everyone with these tumors has "vague", "nebulous", etc etc symptoms, and this is one of the reasons why it generally takes an average of a year or so before doctors correctly diagnose a SCT, like the case was with my daughter. What I know is that she is not a complainer, and I generally have to pick up on her pain by her body language, or how she chooses to do things. She rarely makes a big deal out of it, except on the really bad days. When those days comes, I know its bad, she isn't capable of being a 'big girl' about it. She tells me. She also suffers from numbness and tingling in her legs/feet. I don't always know what the best option for her is. She is so little, I certainly don't want to load her up with drugs, and I am hoping there are other solutions.
Any suggestions will be helpful...

[darren]

braveheart, its been 8 months since your post, i hope you've found a good paid med since then. if not, you might ask about Cymbalta, its good for nerve pain and depression, which often comes with chronic pain. its worked very well for me. even with the Cymbalta I still sometimes need an OTC like Advil.
I've done stretching and exercising for 23+ years. it will help with the pain mobility. my biggest problems are in my legs so I do alot of hurdler's type stretching. you can ask a PT about other types to help you.

ccollette, did the dr do an MRI on your daughter and found the tumor? just wondering. I was 14 when I had my first surgery. it was a rough age for me, and I'm sure it is rough for your daughter too. There are probably some very good neurosurgeons in Atlanta. If you need a second opinion, I would highly recommend Dr Vaughn Allen in Nashville TN. His late brother, Verne, did my surgery and I'm so lucky to be walking today. About the pain, I was only given Advil when I was a kid, I guess they have to be careful with strong pain medicines on children. Before surgery I was going to a physical therapist. She was putting me into a whirlpool bath and gave me a "tens" unit for the pain. The tens unit produces a electromagnetic field that targets a pain area. That's something you might try. Best of luck to you!

[ccollette]

Thank you for your response.
Yes, she has had oh 6 MRIs at this point since December of last year when this all started. We are quite literally just sitting on the edge of our seats waiting for the most opportune time to intervene- you know how it goes when risk=benefit.
We actually started out with Duke Children's hospital, then I farmed outward to the hospitals with experience with SCTs, so I made sure we had continuity of opinion, surveyed providers with experience, and then settled on the Dr I felt had the most tremendous ability to help her, Dr. Jallo at Johns Hopkins. We are also seeing Dr. Sponsellar for her scoliosis and he and Jallo are working together on her.
I feel pretty confident in those choices however, I do greatly appreciate the referral.
I think your recommendation for whirl pool therapy and tens usage is a good one. I actually already own a tens unit for my own personal joint hell that I go through. That's a story for another time. I will talk with her docs about getting PT going and your recommendations, I think that could be a great potential for relief.

Anything anyone can provide is helpful. I want to make sure I am open minded and it is that much more beneficial to hear from the individuals that experience the scenario, not just those that treat them.
thank you!

[chefpattyo]

I was diagnosed with a ependymoma c2-c7 in 2000 and had a biopsy but was not removed due to the danger of paralysis.The pain since has been incredible.Along with the spactisity of the muscles.I am on Baclofen for that and I also experience( Which I havent heard anyone else ever experience)severe I mean severe itching in my left arm and shoulder because the tumor lies on the left side of the spinal cord I take Topamax and for the pain I am on Fentanyl Patches and oxycontin. What is nice about the patches is they are a constant flow of medication so you dont get the surge of pain in between doses of pills.The pathes come in different strengths and you move up as your body adjusts to the medication.This is for cronic pain not post op pain.I get this through my primary care Dr. cause pain mngmt.does not write scripts for narcotics were I live.Talk to your Dr. see if its right for you!



patty