Tomorrow I go to the hospital for a Medial Branch Rrhizotomy. For the past year I have been a patient of a progressive Spine Pain Center. They’ve been trying to figure out why it’s so hard for me to walk.
They still don’t know.
Of course there are theories. I rode horses growing up and at night my legs felt like the circulation had stopped. It was unbelievable pain. My mother called it “growing pains”. This Christmas she and I talked about those days and she remembered how much pain I was in. I would take aspirin and that would fix it. I learned to lie down and not move until the pain stopped. During a school trip in the ninth grade to Washington, DC, my friends had to carry me to the bus because after a day of sightseeing, I could no longer walk. All my girlfriends desperately went in search for aspirin. Someone found some and I sat in my seat, not moving and hoping nobody could tell I was in excruciating pain.
When I was 18 years old, I don’t remember getting any tests done, but our family doctor put me on quinine. That helped but when I left home for good after turning 19, I had no health insurance, so I couldn’t afford medicine. From then until I was in my mid-40′s, I knew that if I stood over 6 hours, I would suffer extreme pain in my legs and feet. I’d mention it here and there to doctors but nobody investigated. They said I should exercise more and wear different types of shoes. Eventually I could no longer take aspirin or quinine because they made my ears ring. No other over the counter pain medicine had any effect.
Holistic Care
It’s funny how we make subtle changes in our everyday lives to accommodate pain. I stopped going to museums, for example. Friends and family took my kids to amusement parts because I couldn’t go. I used to love to hike but that stopped. I could run and walk miles because I didn’t do that for 6 hours and I wasn’t standing.
I’ve had every type of massage therapy and lots of things I no longer remember the names of. I worked with oils, meditation, relaxation, and tried every bit of pain management except hanging upside down from the ceiling. I went on cleansing diets. Prayed. Stretched. Took exercise classes. Stopped eating. Tried macrobiotics. I even went to school to learn shiatsu in the hopes I could fix myself.
Give me Drugs
Finally, it was obvious to everyone I had a real problem. When 2 hours of standing was enough to land me on the couch for several hours, I went to my family doctor and surrendered. I’ve been on pain killers for about 4 years and can now stand for 15 minutes tops. Everything after that is me making sure nobody can tell it hurts like hell to be walking or standing next to you unless I’ve taken my pain medicine. To avoid addiction, I choose to be in pain as long as I can stand it.
I have so many doctors and none of them agrees on what causes me pain. Slipped disk, but it’s a minor one. Arthritis yes but not severe. Tipped pelvis is my favorite one because the doctor said it explains why I have a rear end “Hollywood women would die for”. (Yes, a doctor really told me that.) “Knock knees” was pointing to, as was my bust. Really? I can’t stand without pain because of a 40C rack? I have fascia pain. Muscle pain. There is a very obvious dip in my lumbar spine. The crux of it is that I think it is structural and gets worse as I age, but I don’t know why.
Work Goes On
The only time any of the pain interferes with my work is if I would do something like dumb like go the shopping mall and then try to work. A trip to a mall requires a day of bed rest. I work with computers and need my brain and hands, and they work fine. When I travel, I try not to groan in pain in front of anyone. If I can’t beg off an invite to dinner that’s a “short walk away”, I buck it up and go. After my last trip to Chicago for a conference, I was on bed rest for 3 days and doubled up on pain killers.
This is why they are burning off my nerves tomorrow.
I’ve had 2 epidurals and they offered no pain relief. They then did 2 diagnostic medial nerve tests where they poke you with needles and try to figure out which medial nerves are the ones screaming at me the most. I cried during the first one and I never cry. I have a personal code about crying. One of my friends says my pain is because I don’t express the crying emotion. He also thinks it’s a past life injury. Whatever.
You know how it feels when you hit your funny bone in your elbow? That’s what it feels like from my sacrum to my toes and it doesn’t stop. It’s sciatic nerve pain. When my family and I went to Disney World last August, I envied the people in their wheelchairs. To get through one day at the Epcot center, I took 5x the normal dose of my pain killers so I could at least pretend to not be in crippling pain.
Why Tell You This?
I only recently shared the truth about my legs to my moderating staff at Cre8asiteforums because I’ll be down and they’ll take over the Ship. There is a 50 – 85% chance that in around 8 weeks I may be pain free. At first, after they slay the nerves, they will fight back. I’m to expect to be in pain for awhile but able to work. Well, that’s nothing new.
I wondered if writing about this would interfere with my professional reputation. Finally, I decided that I’m tired of not only living with and managing pain, but also pretending I’m not in it at all.
Whoa, Kim. No one should have to go through this, esp. for as long as you have. You’ll be in my prayers. Sure hope the next update brings good news. Hang in there.
We’ll all be thinking of you, Kim. Really hope it goes superbly well, and you surprise everyone – including yourself – by springing back and being pain free really really quickly.
Wow, Kim, I’m so sorry to hear what you’re going through. All the best for 2010 — I hope the problem is isolated and completely removed!
Sorry you’re starting the new year in such a lousy way, but best of luck with the surgery. I hope it makes a difference. It’s amazing (in a bad way) how much medical science still doesn’t know about pain.
Kim,
So sorry to hear about your troubles. Best of luck on it, you’ll be in our prayers!
-Mike
Best of luck with your procedure. I’ve been a longtime reader of your blog and hope to see your posts again very soon
Wow Kim, I can only imagine what you’ve gone through, and it’s a real credit to you how you have handled it with such grace. I know I convey the sentiments of everyone in saying that I hope the procedure and prognosis all go well and the pain goes away. I have high hopes, though I am sure you are smartly keeping yours conservative. We’ll be praying and cheering for you. And by the way, my esteem of you has not lowered, but only risen higher. Burn, baby, burn!
I know what you’re going through – it’s tough when the doctors can’t figure out what the problem is, much less, how to fix it. Hopefully this procedure takes care of everything and you feel better. Keep us posted!
It must have been good a thing to share this in my blog and Facebook because I’m doing REALLY well!
There are 4 meridian nerves in my back that have been burned away via radiofrequency waves. For each nerve, there are 2 holes in my back. One for the local and the other for the xray guided radiofrequency needle that goes in and burns away the nerve. They test the nerve and I felt it (like sticking your finger in an electrical socket) but the local kept the pain down. I was also given something to keep me calm.r
The nerves they fry are not motor nerves. If someone was to kick me in the back, I will feel it. I had 4 procedures in the past 6 months to help them figure out which meridian nerves were the ones causing me so much pain in my legs and sacrum area. The fried nerves may regenerate in about a year and I may or may not return to the pain level I was in. Some people remain pain free and I’m doing so well that I’m hopeful I’m one of them.
Success rates are all over the place. I could be pain free in 2 weeks to 8 weeks. Some folks improve right away, which is rare. Some get a fight back from the nerves, in that they create a jerky feeling. There are side effects, like a sunburn feeling.
I’ve had no side effects and already can go from a sitting to standing position without screaming pain. I don’t groan. I was crawling up stairs, but can now walk up stairs. I slept a lot but that’s what happens when I’m pain free. I refuse to move, LOL, because it feels so good to not be in pain.
I was at a constant 6-10 pain level and am now at a 1-2, which feels more like bruising and body annoyance at being stuck with needles.
The true tests are yet to come. I have to be able to stand more than 15 minutes, clean the house (always ended up in severe pain), walk more than a mile, go to the mall and not have to sit down all the time, and the real test will be going to a museum!!!
I read a lot of patient feedback on this procedure and they scared me. I saw only one good experience and the rest bad. I’m convinced that the prayers and good thoughts helped me. I also have a fantastic doctor who believed me. (I had others who thought the pain was in my head.)
I’m prone to overdue it when I’m out of pain, so I’m trying to behave and just sit here and catch up on emails and get back to work.
Thank you so much to everyone who sent prayers and loving thoughts. I’m convinced you all helped me through this
Sweet! This is great news, thanks for updating us, Kim. We’ll keep saying prayers, and you keep getting better. Sound like a good deal?
Wow. I had no idea Kim! Given I only see you at shows during the day, but you have amazing will power. I hope this all works out and the pain subsides. I’ll be thinking about you. And thank you for sharing. Not sure how this could negatively impact you in any way professionally. I have more respect for younow than I did 5 minutes ago. You are an inspiration.
@Matt, call me crazy, but I could tell I was supported. I was pretty nervous because I read some scary stuff on the procedure on the web. My doc and his team were perfection. Constant pain is something I had learned to live with. I get a little worried that the pain level, which is low right now, won’t stay that way. It’s fear and I know it. Definitely there is power in the positive thoughts coming my way.
Thank you!
Glad to hear you are feeling better Kim! I’m sending you very good intentions of a very successfully recovery.
@Kate LOL I hid it from everybody! I think part of the battle of chronic pain is not letting the drugs take over. I was more scared for my liver. It’s also why I always use caution at conferences and limited my drinks. I’m sure some hardcore folks figured I’m a wimp but tough. I was in bad shape at SES Chicago. Felt crippled when I got home and stayed in bed for days until the pain went down. I had too much work to do to let them do the procedure earlier, so I think I picked a good time. I really didn’t want anyone to know but I guess it will be ok
Kim, you amaze me. You are such a wonderful, talented person and I’m so happy to hear you are doing better. You have accomplished so much in your life in spite of being in what sounds like constant agony. I agree with Kate, you really are an inspiration. I hope you continue to do better every day and can’t wait to see you again soon.
@Lauren…remember Rand’s wedding? I was in killer pain at the reception. I can’t wear heels but had to, so that aggravated my spine. I couldn’t feel my feet by the end of the night. But I had a fantastic time with you all regardless!
Kim, it is fan-TASTIC that you are doing better. We’ll keep thinking good thoughts and saying prayers. Each day with less pain is a small step to a success story! We all hope you keep improving – there is a lot of strength to be found in the suppoort of people that care!