SpineUniverse Community Advice
Get help and share your story with others who know what you're going through.
Please register or log in to join the discussions!
Posted in: Surgery.

Scheduled for Surgery

Started by CBK92 on 11/03/2010 12:42pm

Hey all
I am scheduled for sx, on 11/11/10 at MGH in Boston and I am a wreck. After months of horrific pain in my legs, NOT back, I have had the cortisone, shots, only last about a month, and have 2 opinions on the surgery. I THINK and I go tomorrow, on Thurs, that it is a fusion and decompression, L1 L2
L4 -L5 a spacer in 4-5, I am confused, and absolutely terrified after reading all these posts. I have never had the constant OR bad pain in my back, it is my legs and now my hips anyone else? I don't know if I should wait, try gabapentin???
Please help
I have stenosis, spondylolisthesis and some scoliois, the sco, far less concern, yet it is a concern.
I am freaking out........

Thanks
Cynthia

Do you find this discussion helpful?
0

12 Responses

Like/Dislike
0

Hi, join the game, everyone on this site is having issues. I had L1,L2, L4, and L5 fusion. I had it May 2010, and remove Sept 2010. I suffer with back, hip, leg pain and now I have spondylotisthesis, RSD, and getting ready to try a spinal cord stimulator. I want you to know I never got a second
opinion from another neuro doctor, and I wish I would. have. My days are spent mostly in the bed
and sleeping. Please do your research, and get other opinions...I will pray for you, keep in touch let
me know how you are doing....

Sunshine!!!!!

Like/Dislike
0

Hi, join the game, everyone on this site is having issues. I had L1,L2, L4, and L5 fusion. I had it May 2010, and remove Sept 2010. I suffer with back, hip, leg pain and now I have spondylotisthesis, RSD, and getting ready to try a spinal cord stimulator. I want you to know I never got a second
opinion from another neuro doctor, and I wish I would. have. My days are spent mostly in the bed
and sleeping. Please do your research, and get other opinions...I will pray for you, keep in touch let
me know how you are doing....

Sunshine!!!!!
Sunshine, where are you? Did you have ortho doc or neuro? I am sorry it sound horrific. Why removed? What is RSD? The weird thing is my doctor told me to come to this site, and now I am seeing soooo many ppl regretting their surgeries. I want to puke, GRRRRRRRRR

Cynthia

Like/Dislike
0

Hi, I'm in Texas, I have a great Neuro doctor, I had a accident in 1993 and at that time I refuse to have surgery, so in April of this year my back problems got worst, pain in my hip, leg , and left me with no feeling in my right foot. RSD is a condition that attack your nerous system, there is no cure for it, if not a condition that can be cured. It can get worst over time, if a doctor don't catch it early. Your limps swell, elbow, feet, toes, you get headaches, you forget things. I have to use a four wheel walker for life. Sometime I look at my right foot and it is blue, due to the swelling. A neuro dr is what you need to do your surgery if you decide to have surgery. My surgeon is in Austin and listed as one of the top surgeons in the world.....I did my reseach on him....He is great, and he always tells me the truth, he also told me he will help me with my disability....he told me I will not work again due to my back condition and RSD.....My hardware was removed due to the screw all were bent and went into muscle, and not bone. the rods and plates he put in my bodies could not adjust to it. My pain was worst after surgery with the metal, than before. So, after he removed it, I had so much scar tissue that he removed alot of it, but my nerves were tangle up around my spinal cord...so he hope the spinal cord stimulator can help my nerves relax, and my pain.....I will do a trial of the SCS on Nov 15, 2010....if it don't work I don't know if I want to try anything else. I been waiting since May for a decision on my disability. I have not been denied or approved....thats a good sign I put it in God hands, and I pray all the time for the pain to go away....

Like/Dislike
0

Hi, I'm having my surgery for L-3-L4, L4-L5 after Thanksgiving and I wish it was tomorrow. I've known since the 1980s that this day would come but my doctor back than said to wait until technology improved. I had C5 done in 1988 and they took a piece of my hip to make the disc. I was told in 10 years the next level would need to be done and almost to the day C6 blew. Unfortunately donor bones were used and I lived in Florida by then and had nothing but trouble for a few years with terrible headaches and my arms were a mess. Then I found a great surgeon who cleaned up the problems in my neck and did 4 levels with plastic infused with protein. He wanted to do my back in 2003 but he did my neck. He wanted to do my back when I was having serious pain in 2006 but because of personal family problems I put it off again with PT and pain management. And now I have screwed up another level so it isn't just L-4-L5! I am 60 so I can not put this off any more if I want some quality years left. My MRI says I have L4-L5 grade 1 spondyloslisthesis, severe posterior facet joint osteoarthritis, especially at L4-L5 and moderately large right subarticular focal L3-L4 disc protrusion encroaching on the ventral subarachnoid space. My surgeon said I'm at a 12 degree tilt. All from a car accident in my 20s and maybe a little from being thrown from a horse as a kid. If you trust your surgeon as much as I trust mine and have a positive attitude that is more than half the battle! Living in pain and on drugs is not a life. I have been doing that since 2006 and I don't want to do that any longer. I've had 2 injections since August and they are gone. I go for massages, have a tens unit, pop hydrocodone like M&Ms and would love to walk more if I could. I've taken off 10 pounds since I've made the decision to go for the surgery and wish I could do another 10.
I'm sure I will be freaking out as we are driving to the hospital because I'm a control freak :-) I'm more worried about my house being a wreck while my husband is in control so I'm trying what I'll be able to do with a grabber for 3 months while I'm in rehab. If I come out the same at LEAST I have tried to improve my situation but I think I will be much better! And I think you will be too. But your mental attitude is SO IMPORTANT! It is the fear of the unknown that always gets us. Too often it is the angry and the ones in pain I think that write looking for an answer. The ones who had a good outcome are out living life!!!! So go for it and after your surgery you can talk me in off the ledge before I have mine :-)
Sorry to have gone on so long but when my husband had stage 4 cancer we learned a lot about how to survive in the medical world.

Like/Dislike
0

skmoore

thanks, you have to go to rehab? I absolutely cannot do that........grrr, I live alone, and have 4 dogs, one I work in show........anyone in the boston area?

you sound great, why am i such a wreck, and i'm not a control freak, lol lol lol

i think its the whole maybe the pain will be worse than this, that is getting to me, I am actually thinking about trying gaberpentin/neurontin? I am on no meds, except tylenol.

Like/Dislike
0

cynthia...
i live in the boston area and have had 7 surgeries at MGH. i may know your doc....who is he?

Like/Dislike
0

I am having 2 levels fused so I will need to wear a brace type of thing for 3 months but be able to drive after 3 weeks. But won't be able to bend for the 3 months which is why I am trying to do things with a grabber. My husband will have to empty the kitty litter for the duration so you are lucky you have dogs. I can pick up the cat dish with the grabber so when the cat pokes me to be fed I can still do that :-). Laundry and things over 10 pounds are off limits for me. But talk to your DR. about what you will and will NOT be able to do. I was hoping I would be able to have the latest procedure which is done on an out patient basis but 1 my insurance will not pay for it and 2 my back isn't right for it now. Each person is different depending on age, weight and physical condition. I'm older, and not in the best shape I admit --too many years of living in pain will do that to you. But take Pain meds they really help take the edge off. Today after cleaning too much I'm sitting here with my tens unit going full blast just so I can sit still. Tomorrow morning I get to hear what the surgeon says about the MRI. I just hope it is still going to be laproscopically done because otherwise it is a huge surgery. POWER OF POSITIVE THINKING!!!

Like/Dislike
0

I hate to say it but I think my unhealthy lifestyle of eating bad and not doing enough exercise messed me up. Not to mention all the chemicals in foods, water and air. If you just research any of those things it will overwhelm you! I believe my job ultimately did me in. However, when I tried this diet called the paleolithic diet, my pain decreased by 50%. Not only that but my mood lifted and I had a lot of energy. It even got rid of my trigger finger. I went off the diet cause it is hard to stay on and the pains came back, so did my trigger finger. My doctor even told me to go back on it.

I had a 360 fusion with hardware in May of 2008 and it didn't fuse. One of the screws are loose too. So I have to get it redone. Not looking forward to that! Very long and painful recovery last time. My pain easily got 50% worse after the surgery. So I say if you are not laid up and in agonizing pain, don't do it!

Good luck whatever you decide.

Like/Dislike
0

Pete
Tks, wow, thats alot of surgeries. I am going to Schwab, he is an ortho, not neuro, b/c, of the scoliosis, however that is NOT really bad, it is the L1 L2 L4 L5, that he is talking about fusing. I AM not on pain meds, the most pain comes when I am getting up from a sitting position, or lying down. I never had pain in my back, just my legs.......I am really not sure yet if I am going to do this, I meet w/them today for pre op stuff, I function pretty well actually, but the leg pain is insane at times. I have had injections, and it is then that I feel normal!! My doc is at the ortho/spine clinic at mgh, tell me about you, and what is going on.
Thanks

Like/Dislike
0

I may try gaberpentin, before, surgery. There are soooo many issues around this surgery, that is limiting, on many levels, and that, is what concerns me the most. I have so many questions. What will be my QOL after surgery, can they guarantee the outcome? Will I be able to live alone, will I have flex, how long will I need pain medication? MGH, states in their rules and reg that if you need pain meds beyond the 3 month period, then you will be referred to the pain clinic, however that pain clinic does not do narcotics, what do ppl do? I hate narcotics, and have not had to use them, to date, but I am reading here, that ppl use them even after surgery had been done awhile ago????
I am soooooo upset. Grrrrrr

CB

Like/Dislike
0

hi again CB....
as for my condition....my bones grew too much as i had a tumor in my pituitary gland. as a result i have a lot of spine conditions such as ddd, facet hypertrophy , ligamentum flavum, stenosis and neural foramen narrowing. i have trouble all through my spine. i first went to the ortho dept at mass gen because of leg pain just like you. at the time my L5 area was the worst. the surgeon recommended surgery on the disc and said i had a 90% chance of improvement. i then went to the neuro dept and the surgeon said my whole spine was bad and he couldnt fix or operate on my whole spine. however the neuro dept did do a lot of surgery and it helped a little but didnt CURE my condition. like you most of the pain is in my legs. unfortunately i need a power wheelchair to get around now.
as for your situation if its the vertebrae out of position and causing stenosis my guess is its not going to get better on its own. the longer you have pain the more chance of permanent damage. in my mind you are smart to have the surgery now.
there is always risk such as infection. i think the docs usually tell you 3%. i had that in one surgery and the dr went again in to clean that up. but in my mind scar tissue is the number one thing to fear. it happens as a natural process of healing and if it entangles the nerves you will be in a lot of pain and you are stuck with it. i think 10% of surgeries cause failed back syndrome which basically is caused by scar tissue. the surgeons never warn you of this up front. that amazes me. ask your surgeon for some info on it as i'm sure he wont volunteer the info!!!
so there are no guarantees. you need to look at the percentages and make a gamble that all will come out ok. i always shot the moon and tried to improve my situation. i didnt win but i imagine if i did nothing i'd be even worse off. one dr told me i'm lucky i'm not paralyzed!
i dont know your surgeon at all. all three surgeons in the neuro dept that i used were great.
i did use the pain clinic at mgh and found out after the 3 months they would not write more narcotic perscriptions so now i get a perscription for my dilaudid from my primary dr. dr gilligan in the pain clinic is excellent.
so when i wish you good luck i really mean it because it truly is the luck of the draw.....pete

Like/Dislike
0

What's gaberpentin? I just got back from my Dr. and I'm scheduled for 11/29 after years of trying everything else. He only said one thing that has me troubled. I have a bulging disc at L3-L4 but on the right side. Since I have no pain on that side he is going to leave it alone and just do the left side L-4-L5 issues which he said is enough work because of the degrees I'm tilting. BUT he said in a few years I'll end up having to have the others fixed. Why not just fix it all while I'm there and not risk going under again when I'm even older? So at my next and last pre op appointment I will insist on fixing everything because this is is one and only shot at fixing my back surgically. There has to be a very good reason --like it would reduce the likelyhood of the rest of my back doing well---for me to change my mind.
I'm glad he is conservative but why have 2 surgeries if you can just have one? $$$$ might be the issue but I hope not.
My left leg has been slightly numb for so long I can't remember what it would feel like to have 2 legs and I mean decades. So I doubt if full feeling would ever come back. I just want to be able to stand at the stove or sink for more than 5 minutes without extreme pain down my back and leg and having to go sit down or lie down. I'd like to sleep all night. Back issues are serious and living with them creates all kinds of problems in your life. Pain management clinics that are chains I've heard horror stories about but I'm lucky I have a wonderful pain management dr and all of my other doctors know he is in charge of everything. They all work as a team and everyone is on the same page. Be an advocate for yourself and demand that your questions be addressed by your doctors. If they brush you off it is time to go to another dr. that you have confidence in. They are NOT god but put their pants on one leg at a time like everybody else. Bernie Segal writes excellant books on serious illnesses and one, Help Me to Heal, has some great tips on how to take charge of your medical care and how to be the Captain of your Health Care Team. I think he is out of Yale. We read him when my husband had cancer but his tips would work for anybody facing a life changing medical situation and for caregivers as well. You must remind these professionals who try to keep their distance for their own mental health that you are a PERSON and YOU NEED ANSWERS. You want to be treated like they would want a member of their own family and not just another number. Be positive and proactive --I have to keep reminding myself that too since when you are in pain you get grumpy and either withdraw into yourself afraid to take risks or get mad and do destructive things so you don't get better. No pain, no gain is a bunch of *#!^ Get rid of the PAIN and if it means using narcotics then do so. I just got a steriod pack for 6 days to reduce the inflamation so I can do some last minute work around here because those things are a miracle drug. It is just too bad they are so bad for you.......Again I have gone on too long, perhaps it is the drugs :-)

SHOW MAIN MENU
SHOW SUB MENU
Cancel
Delete