Spinal pain and Parkinson's
 

I read once that people with Parkinson's (PWP) don't have pain. That's a bunch of el torro poo-poo! This is a long post, but I believe talking it out will help. (and yes, Virginia! There is pain with PD!)

Does anybody have severe low back pain - neck pain - numbness and tingling in your legs or arms/hands? I have suffered from all of the above for about 5 years now. They tell me that it is PD related due to the improper gait of PWP, and I am sure sitting long periods at the computer doesn't help.

I have had two cervical fusion procedures done (3 levels) due to herniations in my neck - no trauma other than getting rear-ended several years ago, and I do have pretty flagrant dyskinesia at times. (I think Jackie, a friend who posts here, calls herself a "Bobble-head.") I had this incredible neck pain and was losing the use of my arms when the neurosurgeon found the herniations on an MRI. Cervical fusion was the remedy at the C5/6 and 6/7 levels. Then one year later I had another herniation and cervical fusion at the C4/5 level. Did it help? Tremendously!

Now I have been suffering from low back pain, which I have had for 10+ years, but not as intensely as recently. Although an MRI shows a "buldge" in my lumbar spine (L 5/6), the pain radiates to the sciatic nerve and isn't bad enough yet for surgery. But I've had 3 babies, and it didn't come close to the level of pain I've had with the sciatica. I sometimes get spasms in my hip and upper thigh that sure isn't a picnic! So I am referred to a doctor who specializes in pain management. He suggests a series of three injections into the area around the buldging discs.

I had the first injection, and although it really hurt going in, the relief from the pain was well worth it. However, when I went to have the second injection, he kept "hitting" something that ached horribly, sending a sharp pain from my low back to the tip of my toes (right side only). It felt like sciatica, which I have had several times, only much, much worse.

The next option was to be sedated – he called it some type of L5 ??? block. I was supposed to be sedated so that I wouldn't jump and mess up his injection. I fasted from midnight on – had to be at ambulatory surgery at 7:00 AM the next day, and everything seemed to be going well. Then the RN that admitted me blew a vein in starting the IV. I lay there in holding not even close to being “sedated” (I guess they don’t realize that I’ve been taking heavy duty drugs for 14 years). Anyway, around 9:00 they take me back to the OR. The sweet Egyptian doctor has a wonderful bedside manner, but he can’t seem to give me a nerve block without killing me.

The doctor shot that stuff in there and I came off the table! He asked, “What kind of pain are you feeling?” I told him it hurt like a serrated-edged knife being drug down the back of my leg from my hip to my toes. Then he continues and does it again. By this time the two nurses in the OR are coaching me like I’m having a baby (but trust me – none of my births felt as awful as this). They were shouting “Breath in and out! In and out!” and were holding me down. The doctor was yelling “Almost done.” And I was literally biting my pillow and in my muffled voice saying, “I can’t take this!” I don’t know how, but I survived.

As I was leaving the OR I said to one of the nurses, “I thought I was supposed to be sedated.” She says, “We did give you a sedative (what ? Tylenol PM?) and we couldn’t put you all the way under because we have to know where the pain is.” That was obvious!!!

In spite of thinking I was dying, I have felt much better after two days of hell. I believe they suggest a series of three injections, but they can mark my name off the list for the last one! I still shudder when I think about it.

There! I already feel better. I was just wondering if any of you have had similar experiences?

Peggy

sorry to hear of your troubes
 

I know I did not feel a moments pain during my DBS. If they can do that, there is no doubt in my mind, that a competent anesthesiologist could have made it a pain-free procedure.
IF you ever have to get it done agaiin, I would insist on it!!



Charlie

Thanks, Charlie. (I said: Compeency inn some sreas is questonable.) *

* this is what you get when you take an ambien and try to type. I have no idea what that says! lol
Peg

sciatia........ugh!!!!!!
 

Hi Peggy.....:)

My lower and middle back is pretty bad shape due to the years of severe dyskinesia. I have 3 ruptured discs and 2 bulging discs.....had a lamenectomy at L6 ing 2002 and one at L5 in 2003....the first one helped but the second one made the pain worse. I also have moderate to severe arthritis in my back.

I had sciatic nerve pain for about 6 months in which about all I did was crawl around the house in pain that I can not describe.

I too tried the injections into the spine but after experiencing one injection I never went back for the rest.

The pain has lessened in the past 3-4 years but I am in pain to some degree pretty much all the time. I can only stand for 10-15 minutes before my legs turn to jello and I have to sit down.

yes!!!
 

I can totally relate to everything peg leg. My lower back is very messed up, pinched nerves, piriformus and sciatica pain, etc. I am always in severe pain in lower back and pins and needle pain in shoulders. I get botox in shoulders which unfortunately doesn't help. He said I may have dystonia in shoulders.
As to injections, I too am having them between L4 and L5. It was so swollen in that area, that's what they told me, that it was hard avoiding hitting nerve. He hit nerve and I could feel it sparking all the way down my leg. They injected pain med after that and it put tremendous pressure on said nerve causing more pain. Next injection, they said it shouldn't be as swollen thus less pain. So on next injection He hit nerve again with pain worse than first. The relief after shot was good, but only lasted about 1 week. I am due for my 3rd injection next week and really dread it. I asked to be sedated and they said we usually don't sedate for this procedure but they will check with doctor.
I am going to follow thru with it, I think I can, I think I can, ..... After this fails I am going to try acupunture.
My body is so twisted due to injuries suffered in car accident and parkinsons that I walk like quasimoto. My doc also says pain is usually not part of pd, but that is absolute bull#$^&*.
I see my neuro on Monday and am going to try and get recommended for long term disability with my company. I sit in front of computer all day with lots of mousing. Makes the pins and needles in shoulder hurt like hell and sitting all day is hard on my back. Don't get me wrong, I love my job,, but physically it is getting pretty bad.
:hug:
dbiker2, just noticed you're in Seattle area. I too am from northwest-spokane, wa.

I get very severe neck stifness where I can't even turn my head any way, up down, left or right. I end up seeing stars when I turn my head from the pain. In addition, my arms and hands go numb when I put my head to my chin. The Sinemet helps loosen things up some, but still it's always there.

John

Hi dbiker (didn't you post here a while back? what's your first name?)
and hello libra

I appreciate your replies. dbiker, when my sciatica acts up all I can do is cry - and it takes a lot for me to cry over something not emotional. We have a wheelchair for when it's acting up - I cannot walk either.

But when my PD meds are working, and this back pain is under control, I can do about anything. You wouldn't know I hhad PD if the dyskinesia was not present .
Peg

jcireon - your reply came in just when I pushed "send." You sound like you need to get to a neurosurgeon right away. Did you know that when you have a herniatioooon such as what I had (and possibly you, too) that a fall could result in paralysis? Please don't wait!

Thank you, Peg. I'll talk to my neurologist about this. This is very scary since I fall quite a bit. :eek:

John

????????
 

:Wave-Hello: :shocked: :Sob: jeeeeesh peg....you dont remember me from the other forum.......:Speechless: it has been a few years though.....My name is Darrell....grandson named Joshua.....who is 7 yrs old and in the 2nd grade now.......ringing bells now??????? you were the first PWP that I met online........:):):):)