Thalamac Pain Syndrome

[Lynard36]

I have quite a complicated history.  39/w/f Diagnosed at age 30 with pituary tumor.  Treated with Parlodel and tumor reduced.  Ancillary finding of cavernous malformation at posterior third ventricle w/evidence of previous bleed. Bled again at age 32 causing blockage of csf necessitating placement of vp shunt. H/A relieved.  Gamma knife to lesion 4/96.  H/a resume 10/96.  Numerous shunt revisions due to continuing headaches. Shunt removed in 1999.  Headaches continue.  ICP on lumbar puncture w/ h/a measures 24 one day and 10 the next when there's no h/a.  During the past seven years, I've been on narcotic pain medications for relief of pain (Percocet, Oxycontin, MSContin, Fentanyl) Also have taken many anti-depressants and anti-seizure meds.  Only narcotics provide relief from pain.  Many drs. suspect rx the cause of pain (rebound) and recommend detox.  I did so in 1/02 but pain persists however, I remain drug-free.  I recently discovered this condition - thalamic pain syndrome - and wonder if this could be the source of my pain as the lesion is located near the hypothalamus.  With all the drs. I have seen, no one has ever suggested this as the cause.  I have no pain other than the headache.  I have had ganglion nerve blocs with no benefit.  The only suggestion as the source of the pain is that the lesion swells, fluid backs up, pressure builds, pain comes, I rest, systems slow down, lesion shrinks, fluid drains, pain goes away.  With the information I have provided, any suggestions on whether the thalamus could be involved?  In Orlando, who would you suggest I see for help

[legalone]

Good for You, Harold, way to go! You've got the right attitude.  That's all we can do, get on with our lives and that's exactly what I do too.  The more we sit around and feel sorry for ourselves and moan and groan, the more we are going to feel like sitting around and moaning and groaning, right?  I can't work as a legal secretary anymore, my career is gone, but I can go on with my life and enjoy it as much as I possibly can. People who see me would never know there is anything wrong with me or that I'm in such pain and they would never understand anyway, I've given up even trying to explain! There is no cure, I have the meds to help handle the pain as much as it can possibly be handled, but we have to live with this demon, and the busier I stay, the less time I have to think about it. I fight depression and have to say there have been days when I have had to battle that, but since finally finding the right medication, have found help for that.

I wish you much success in the weight lifting contest in Reno this week - that sounds just way too cool! Good luck and let us now how it goes!

Sandy

[Harold1]

After five years and now at age 54, I have now found a way to deal with Central Post-Stroke Pain (CPSP).  That is accept it.  Of course medications assist.  Neurontin, by far is the best.  Mixed in with a bit of lamectal, I have reduced this debilitating pain to a manageable level.

I have had two strokes and a heart attack. A year after the heart operation, I could the pain dibilitating so I sought relief in weight lifting.  Now four years later I am attending the world power lifting competiton in Reno, NV, this weekend.  The trick is, that I do not accept the pain a debilitating issue in my life, even though it exists similar to the levels when it started.  I have learned to put the pain out of mind, therefore if it does not exist in my thoughts, then it does not excist at all.

All that I have read on CPSP is true.  The cold has a signiicant affect.  I live in Seattle.  There are very sharp and painful  spasms.  However, there is no relief and I have learned to accept that.  

As I understand that the population in the US is very small with this injury.  Around 20,000 plus.  This is too small to find new medications.  However, the pain component in anti-seisure, appears to be the best.  As a new medication is found in this category, then relief will continue.  Until then, it is more about acceptance and getting on with life.

[legalone]

I have CPS as a result of a mild stroke last year.  There is nothing that will ever help the pain of CPS - My nerologist referred me to a pain management clinic and the doctor I have is wonderful.  He has been working with me on a combination of meds to help "relieve" the pain.  I have been taking Neurontin since the stroke, and thought at one time it wasn't doing anything to help until I told the doctor and he slowly decreased my dosage. That's when I relized it did help much more than I realized.  Needless to say, I am very pleased with my Neurontin!  The doctor has tried me on a number of other anticonvulsants in combination with the Neurontin.  I do not have epilepsy, however, this medication is helpful with this type of pain.  I have been taking Topamax along with the Neurontin for awhile and as I said nothing seems to help with the pain; I will go to the pain clinic in November and see if there is anything else we can try that might help more.  It's really a vicious circle.  We CPS victims need funding for research so that some day, hopefully, a cure can be found for it like so many other diseases out there.  I also had polio as a child and although I have never been officially diagnosed with post polio syndrome, I'm sure a lot of my pain is caused from that also.

Good luck to you.

[CCF-Neuro-M.D.-JT]

Thalamic pain syndrome is a well known entity that is described in patients who have had a stroke, or less commonly a tumor in a very specific region of the thalamus producing numbness on the opposite side of the body and then pain in those regions as some of the sensation comes back.  They are hypersensitive to any stimulus to the affected parts (arm/leg/trunk) such as temperature change, pinprick, and sometimes even music, but again just to that part of the body that was affected by the stroke/tumor. It is NOT manifest as recurrent headache which is what you describe.  

COnsider a pain management program, we have CCF branches in Naples and Ft Lauderdale that you can look into. Otherwise any academic facility such as the University of Miami and Florida system can be of help. Your case is complex as there have been many surgical interventions and neurological problems that complicate the problem. Getting of the narcotics was a very good start. Good luck.