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Spinal fusion recovery (Page 12)

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September 7th, 2010
I had my 1 month check up 2 weeks ago and they took xrays. I was in such incredible pain during that check up that the immediate issue was to get the pain under control: my xray results were never discussed. I was told by the Dr., that they had to stretch the muscle a great deal due to foot drop. I don't know of any other adjectives to describe the pain:like a severe burn to the skin. I was also under the impression that due to our "hardware", we could no longer have MRI's...True or False?
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replied September 7th, 2010
Experienced User
Definitely false I have had two or three since my surgery. If they stretched the muscle then they possibly damaged the nerve. Lyrica is supposedly good for nerve pain, but you are on a tiny dose. They can't give you a big dose just like that they have to build it up, as far as I can remember. I think you should contact your doctor and ask for a higher dose if that's possible. It sounds awful. Don't put up with it. You are the patient nobody can tell you how or what you feel. Don't be patronised. You need an MRI, stronger medication and answers to any questions you have about the way forward. Good luck, remember we're here for you!

Quaver
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replied September 7th, 2010
Pain Meds
To badfoot52: My surgeons nurse said there were some meds available and she will discuss it with the Dr. Some of these are anti-seizure meds which tone down the signals. I will post again when I find out more. Fare well on this journey!
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replied September 7th, 2010
hi badfoot sorry tour in pain mate we are all in it together had my op 5years ago made me worseanyway a good nerve pain blocker is amitriptyline thats what its called in uk not sure of your location good luck
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replied September 7th, 2010
hi everyone new on here had 3 level fusion cages pedicle screws and rods it was 5 years ago but my pain is worse than ever . i take oxycontin 80mg and oxynorm 20mg among a host of others what worries me is people seem to only get pescribed them over short periods i have been taking them 12 years has anyone else been taking these as long the side effects are terrible and i know they are addictive but when in so much pain what can you do. neil uk
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replied September 8th, 2010
Badfoot52: I was prescribed neurontin 300 mg 3 times a day. I took one before bed as told last night and I had the best night yet. I still have back pain but the burning sciatic irritation seems to have disappeared. I will give this a try and post more later. Maybe I can get off the couch for a while and do some walking. Take care!
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replied September 9th, 2010
Quaver and all,
Thanks for all your replies:although I feel I have a great neuro, I can say that the "aftercare" program has SUCKED. My biggest problem has been getting any phone calls/messages returned, much less timely refills on my meds. After my husband called and pretty much told them as much (he feels helpless to do anything but hold my hand when I am in agony with nerve pain on the couch) I got a return phone call from the surgical nurse whom I've met with 4 times, who acts like she does not know who I am, refused to up my dosage of 50mg TAD of Lyrica (I've been on it for almost 3 weeks). I finally called my primary physician and explained what has been going on and how I feel I've slipped through the cracks and she took immediate control of the situation. She's upped my dosage to 100mg TAD, and has already filed a complaint on my behalf. She knows me...she knows I have taken no drugs previous to surgery...she knows I am a very active person & work in the ski industry, and has dealt with this back pain for 2 years prior without pain meds. She knows this is not my normal behavior to have to cry and beg for pain relief. For the 1st time since this surgery, I finally feel like someone is finally looking after my welfare. So sad...we have the technology, but it seems like the human element is what has been the biggest obstacle,like I've read on an earlier post...they either have the passion and do a great job, or they are just collecting a paycheck...indifferent and no follow up/follow thru. I pray like hell that the Lyrica does the trick...one trick I did learn from my neighbor who has chronic pain from arthritis was, to put a pillow at the very end of the bed to keep the sheets/blankets from pinning my foot down or locked in a single position. Did it last night, and had the first full nights sleep...did not even wake up to take scheduled pain meds, and woke up feeling pretty darn good. Who knew something as little as a pillow, could make such a big difference. I guess now it's all about the little things...going to go try to eat some yogurt/granola/berries, as I've had zero appetite the past few days because of the extreme pain. I have lost 18lbs since surgery...pretty much all muscle, and you can see in my arms and legs the dents from muscle atrophy...starting hydrotherapy on Monday and I can't wait...anything is better than surfing the couch. All I can say right now is , being perfect does not mean you are happy...it means you have chosen to overlook the imperfections.
Happily Imperfect,
Paula (aka badfoot52)
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replied September 9th, 2010
Paula,
I couldn’t agree with you more. My surgeon is a good guy and very knowledgeable but once the surgery is over so is the care. I have spoken with numerous people who have had the same situation after various types of surgery. If I want anything done I must push for it. My most effective strategy is I have gotten to know the main nurse in his office very well. She gets my requests filled. I hope the Lyrica works for you and you may find some relief?
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replied September 9th, 2010
To Badfoot and others: I also found a few individuals who do just about anything to help me in out in bad moments. However, at one point after surgery, I felt as if my left ankle was broken, my wife asked a nurse for assistance and was told "He's not my patient" AARGH! Post op I have been dealing with my surgeons nurse and have been very happy with the response I have received. Also, the associate physician has been very helpful who converses with the surgeon and seems to get me going in the right directions. There are still moments when the pain hits hard. The neurontin seems to have taken the edge of for the most part. Once again however, we must demand proper medications for our discomfort and pain. That was in a document I received from the hospital. Only you know what pain you are experiencing and you are entitled to relief. Just for information purposes, I went through Twin Cities Spine Center and have been impressed with their staff. I do however question some of the staff at Abbot Northwestern hospital. I did express my views on that subject in a survery I took. Thanks for letting me vent! Everyone take care!
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replied September 9th, 2010
nyga1mar
When was your surgery and what did you have done?
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replied September 9th, 2010
to Imreichel: Surgery was July 29,2010 TLIF L4-L5-S1. That is decompression and bone graft material inserted between the vertebra. 6 pedicle screws and 2 rods were installed to stabilize things. I tried non instrusive treatments for a year before we decided this was the next alternative. I was a bit startled to see the x-rays at my 5 week post op, even though I was shown on a model what the Dr was going to do. Hope things are going well for you.
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replied September 10th, 2010
Experienced User
Dear All,

I wasn't notified of any activity on the forum since my last post. It's taken me ages to catch up! Artistneil I too have a cage support and titanium spacers and screws. I have an L4/L5 L5/S1 fusion. I have been taking oxynorm for almost a year in conjunction with Butrans patches which are also opioid. As far as I can see the side effects are tolerable. I am also on Lyrica 150 mg twice a day. I feel pretty spaced out but have got used to it. My pain specialist says if you need the medication then take it and worry about addiction when you don't. I can't see myself ever getting off the meds because without them I couldn't function at all.

I am under the London Spine Clinic and could still go and see the surgeon any time. He also has given me an email address and I sometimes email him or the pain specialist. I suspect I am very lucky but none of them have any answers or solutions. One of my GPs gave me the lecture of my life for taking what my specialist recommended and her colleague prescribed. I was absolutely livid and burst into tears when I got out. I eventually wrote to her and she apologised to a degree...!

I am please that Artistneil is in the UK as I suspect most of you are US based. It's good to know I am in the country of someone else in the same boat.

Wishing everyone a pain free weekend (Oh I wish!!)

Quaver
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replied September 17th, 2010
Hello there, I also had a lumber fusion at L4-5 in december 2009, I am still in recovery and have to now have a sacrioliac fusion, I am nervous but ready for this pain to end finnaly..... Sarah
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replied September 17th, 2010
Good luck Sarah! I am only at week 7 of L4,L5,S1 and am still experincing pain. Some days are better than others, but I am hopeful things will keep getting better, albeit slowly but sorely. Keep us posted on your next procedure!
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replied September 18th, 2010
Experienced User
Hi Sarah and everyone,

Good luck with the sacroiliac fusion and keep us posted. What are your current symptoms? I am interested particularly as I think if you shared this with us all perhaps others with similar symptoms could ask their sugeons to consider the procedure. It seems most of us have L4,L5 and/or L5, S1. I personally would be very reluctant to embark on more major spine surgery. As we all know it's no picnic. However let's face it all of us would give if not anything then a huge amount to be pain free and have normal mobility. Best wishes to you all!

Quaver
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replied September 18th, 2010
sarah gray story
Hi everyone, I will tell you my story, I had a herniated disc at L4-5 so I had a fusion in Dec. 2009. and immediatly after surgery I had excruciating pain in my right buttock/ spine lower than the fusion, to the point where I cant sit from a standing position, stand from a sitting, climbing stairs is horrible, I cant walk without a limp, I cant roll over in bed, I cant sleep well at all. I have had several injections and epidurals, which only help for a very short time. I have a 2 year old and let me tell you how hard it is to take care of her in all this pain. I am ready to have the SI fusion and be done with all the pain meds I have been on. I am ready to get my life back!
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replied September 22nd, 2010
Back pain recovery
Hi Badfoot and other pain sufferers. I'm new to this and somewhat daunted by the gist of the thread I've read. It seems to be a general opinion that when you've had surgery you are on your own apart from the mandatory follow ups. I'm getting the feeling that we as patients must take ownership of our own recovery and eventual wellbeing. I spoke with a spine Dr recently at a social function and did not let on that I was a sufferer. He indicated to me that many spinal patients become partial psycho cases as a result of their pain and some drs pass the problem on by saying they cannot help any further. I'm constantly searching for alternatives to surgery, so if anyone out there knows of successful alternatives, it would be good to hear from you.
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replied September 22nd, 2010
Extremely eHealthy
HI BASIL

WHAT IS YOUR SPINE SITUATION. HAVE YOU TRIED ANYTHING TO HELP THE PAIN. WHAT DOES THE DR SAY?
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replied September 22nd, 2010
Hello everyone, I was asked to update all when I had gone to the UC San Francisco spinal clinic and here goes. As they are a teaching hospital with a very fine reputation I was hoping they would be able to let me know what is wrong. If you’re new to this forum my story is in previous posts. The surgeon was very thorough and took all the time I needed. Over 3 hours with my wife and I. 3 people reviewed my MRI and CT. The summary of my examination was my original fusion, posterior L4 – S1did not take. There was dis-union in the vertebrae and the bone did not fuse properly around the screws. He showed me on the films exactly what he saw and there was something there but as I am not an expert in reading these I have no idea. Since I have constant burning in my legs and pain in my lower spine the surgeon wants to address everything. First he is going to go in posteriorly and grind down the old fusion and redo it while replacing the screws. Then he is going to do an anterior fusion, through the front, of L3 – S1 which should ease the decompression causing the leg pain.

Since this exam I have been completely dazed. This will be my 3rd surgery and I have basically been recovering for the past two years. The thought of facing another that will be more than the previous 2 combined is overwhelming. I am still going to go for another opinion but at a certain point one must realize that it is was it is. I had a bit of an epiphany last week. I had gotten spinal injections about 5 weeks ago. My back was in more pain than normal due to the trauma of the needles. Last week I woke up and felt much better. For 4 days my pain never went over a 2 and I felt like a new man. It was incredible!!! I went to see my daughter cheer at a football game for the first time in two years. I was reasonably active and thought maybe I had found the elixir that would save me. Unfortunately, on the 5th day all the pain came back and now things have returned to the previous state. Just that small glimpse as what it was like to be normal again makes me believe that this surgery might be worth it. I certainly have tried everything else.

The one thing I have gotten from this forum is we are all looking for an answer. Perhaps it is not the same for everyone and there does not seem to be a magic pill so more drastic measures are necessary. I can honestly say that I would never go under the knife again but here I go. I have my surgery in the middle of November and will keep you all posted. Wishing the best for all, Michael
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replied September 23rd, 2010
Experienced User
Wow Michael!

I wish you all the luck in the world for that!! You say that your MRI was studied by 3 people. Did they all agree with the diagnosis or did one see something that the others didn't? I'm asking because I am told my fusion looks good on MRI... I am wondering whether someone else might spot something significant. Like you I have sworn never to go under the knife again. As we all know the recovery is hideous, but.....

What Basil says sounds like medics protecting their reputations. It's probably better for them to describe people like us as psychos. I have been told that all pain is in the mind, which it is of course, but it is NOT always imaginary. My husband will testify that last night I was just dropping off to sleep when I jerked and literally screamed with the pain. This pain cannot have been anything other than all too real.

As for us taking ownership of our pain I agree. Personally my back is now vastly better since the medical professiion stopped sticking needles in me and manipulating me. I know my limitations. The more I do the worse my back is. If I stay up late and socialise I have to take extra oxynorm.

I am heartily sick of being categorised as an "interesting" case or as simply barking as far as the medics are concerned. However, oh for an end to the pain and the mobility limitations!

Keep smiling everybody! A big group hug from,

Quaver
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