Billye
 

with the cancer exper. with my son,I found as a parent,that it can break,
up husband and wife,which breaks a family...But most of all the burden
that child must feel...It's so sad isn't it studies show the stress can cause
just to much for some people..But we were the grownup's,oh sad,very sad.
Dear hevens 12 yrs. old..I think you have taught us something,no you have.
Hugs to all...Sue Bless them all Billye

Hopefully they talk to him about how he feels? I know I'm pretty open about how I feel guilty for what my pain does to my family. I know rationally I can't control the pain but it still helps to get the feeling out. So hopefully they get which can be hard for a 12 year old boy but to communicate his fears,anger,sadness. My mom always says there is nothing that hurts like watching your child suffer. I wish I could take her pain away. You know when I was at the clinic they had the Ronald Mcdonald house with kids. They had such a spirit about them. My heart really goes to them.

so Sorry to hear about your Grandson, 12 is so young to have a stroke, but in the context of having a burst vessels in brain, he is lucky to be alive! I met a nurse a while back whose son had a stroke when he was 10 months old, initially it paralysed his whole right side and affected his vision to some degree but that child mad fantastic improvements, by the time he was 3 he had a slight weakeness in his right leg and his fine motor skills were still a little off but the hope was that it would continu to improve. It seems that growing kids still have more plasticity in the CNS, so that damaged areas re route etc. hopefully at 12 he is still a growing boy he may ne lucky and still have some of this repair over time.

as for centralized pain, it is something i have dealt with for over 20yrs, Finally 6 years ago i had a syncromed pump implanted that gives me low dose morphine directly to the fluid around the spine. It is considered a last resort type of treatment but for me i calll it a life saver ( i was close to suicide due to uncontrolled pain despie massive doses of medication), i wa albe to get back to wrk part time and now have the pain controlled most days. Had i been referred to thiss pain clicnic earlier i maay still have 2 legs, the pain was so bad that i had my right leg amputated but as the pain was now centralized, it did little to redce the pain and added phantom paininto the mix too- i would alway encourage anyone with chronic pain to insist on a referral to a pain management clinic, it really is such a specialized subject that few MO's really understand

Kebsa:

I learned much from what you wrote. I learned that there are people out there who go through such torment, and still survive.

You actually had a leg amputated due to pain??? Mind if I ask what your diagnosis is??

You are a very very brave individual. I don't think I can ever complain about pain ever again. I had to say to myself "okay, you have arthritis, (my knee is killing me, so I ice it, and when the weather changes, well, it drives me nuts). But then I came on the computer and BAM, saw what you wrote.

Believe me, took away all my self-pity, even for one day.

I wish you a very nice Thanksgiving, and a pain free one at that.

Good for you that the implanted pump is doing it's thing for you. I remember that Jerry Lewis had the medtronic pump. About 5 years ago, my husband was in a period of pain where he was going out of his mind. He had been diagnosed idiopathic PN for over 10 years by that time. We went to a doctor in NYC, who ultimately determined it was not his back (every single doctor said "no, it's not his back), and they were correct, it's not his back. My husband has an auto-immune disorder that results in his having PN.

But 5 years ago, we were sitting in the doctors waiting room and we came upon a leaflet talking about the Medtronic pump. We asked all sorts of questions and the doctor said 'no, this is not right for you, because we don't know why Alan has PN". But if you want to give it a shot, we put it outside the body for one week, so you can test it to see if it stops the pain, then if it works, we implant it"

So we continued our journey to find out why my husband had the PN. Last year, he had a spinal tap and they found protein, which led them to say"you have auto-immune stuff going on". Why no one thought to do a spinal tap 15 years ago, is anybody's guess. We've seen more doctors than you can count on one's fingers.

The one pain med that definitely worked for him was the Duragesic Fentanyl pain patch. Stopped his pain completely (especially with the Vicodin for breakthrough pain). But he kept having to up the dosage and they stopped at 125 of the patch. Then my husband found a chiropractor neurologist who literally saved his ***, and weaned him off of the patch. That led to specific exercising and massage, and well, he takes no pain meds today.

Yeah, he still has pain, but nothing to the level of where he was 5 years ago.

Also, when his pain hits, he uses this thing from Brookstone, that has different levels, (I can't even pick the thing up, it's so heavey), it's not the magnassager by the way, that thind did nothing.

He calls it "the vibrating massager thing from Brookstone". Well, it has different settings, and he actually puts it up to the highest vibration setting of 10. (Might even be higher). I mean, think about it. He places it on the side of his thighs and the blood is then moved around his leg and all the pain between his toes, goes away.

I don't like anything that vibrates on my legs (I have a slight case of diabetic PN). Alan and I are very different in what works for us. I use Methyl B-12 and it stopped most of my burning. Didn't do a thing for him.

So we keep trying to find what eases our symptoms.

I just wanted to let you know that your posting moved me.

Have a nice day.

Melody