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So sad and afraid

thenadetthenade Posts: 137
edited 06/11/2012 - 8:40 AM in Depression and Coping
Today I am feeling so sad and afraid of the future. I feel that there are some very caring and understanding people on this forum. I had TLIF on L4-L5 oct 26/09. Did fine for the first couple of weeks, I think really only felt surgical pain and it was minimal. Slowly my right leg pain has returned and has also now involved my left leg. Sitting, laying, standing and walking all produce burning pain in legs and feet. Saw my neuro on Dec 15. I told him about pain returning. He seemed not that concerned. Said he will order a CT scan. Gave me a referral for PT. I have been a couple of times and find it very hard to do and it produces more pain. All I can do is lay in bed and wait for the pain to diminish using ice and laying still. Try to go for short walks, unable to stand for long. If it wasn't for my husband I wouldn't be able to take care of my self. I know I'm early out but this feels different. I just needed a place to express my feelings.


  • i want to tell you how sorry i am that your pain has returned. there are many of us here who have gone through surgery and found ourselves still in pain.
    it is still only a few months since your operation. the initial lack of pain may have been the effect of steroids that may have been used during the process.
    swelling may still be a factor. hopefully in time you will receive more relief. i have been told it can take over a year to gain the full benefits of your surgery.
    in the mean time follow the instructions of your your surgeon.
    i hope your condition will begin to improve.

  • Welcome to Spine-Health.

    Please know that you are among fellow pain sufferers... people who can relate to whatever you are experiencing, during your recovery and anytime afterwards.

    It is difficult adjusting to our limitations and it takes time to grab onto patience. Somedays, it will feel overwhelming... but try to remember that it will get better. We learn to develop coping skills and Spine-Health is such a wonderful place to ask questions. There is a lot of valuable information throughout this site and it has helped me a great deal, to read through the articles and different postings from others.

    Sitting and standing is still an issue for me, but walking is becoming more easier with time. Physical therapy can be a blessing, but can also bring on additional pain. I have had to take many breaks from PT over the past year. I do implement the exercises I have learned from PT at home on my good days. The more stretching and walking we can do, the better our bodies feel. Just doing little calf stretches, helps the blood flow.

    There are many forums to where you can post on Spine-Health and you will meet a lot of great people. We are here to support others, share our experiences and most importantly... make it known that you are not alone in your suffering.

    I hope tomorrow will be a better day for you and the pain eases up.

    Take good care,

  • Thank you all for posting your comments. There are a lot of kind and understanding people out there. My family doctor called last night regarding another matter and I told her how poorly I was doing. She suggested I go back on the morphine 10mg that I was discharged with for now. I am to come and see her next week and we'll see where to go from there. I have been trying to ride this out with only extra strenght tylenol and ativan for sleep. She suggested taking some Advil or Motrin for a few days and see if that helped. I asked her if it was ok to take it. She Thought it was. Of course I have read that it's not good to take anti inflammatories. So I am confused. My neuro didn't give me any instructions regarding such matters. I never expected to be pain free after surgery. I don't think anyone can expect that. But I thought it would be better than this. Thank you for letting me ramble a bit this morning. Jane, all the best to you for your Thursday surgery and hope that your recovery goes well.
  • I'm not entirely sure about the anti-inflammatorys, but I know they are recommended for herniated disc. Is it possible to see your neurologist?

    I've been feeling similar lately. Took 3 years to get to the point where I was off medications, took a new job, was physically active, and happy (it CAN happen!) to enjoy it for 3 months. It was fantastic to feel pain free and be conscious of it. I've reinjured last week of November and have been on bed rest and morphine for weeks now. I live alone, in Scandinavia known for the short winter days, and am feeling miserable. I feel like I'm fading away. I'm not a part of anyone's daily life anymore. I have hardly any human interaction, except when I go to the store to bring home the lightest food I can find. My doctors are sick of seeing me. And I found out last week that Workers Injury rejected my claim. It even hurts my back to cry! I'm having an especially hard day today, it just feels nice to have somewhere safe to say it.
  • Oh gosh can I ever relate....

    I've had back troubles for many years, and they have recently gotten worse, I have two old herniated disks that have gotten to the point where there are no disks left at all, and I have arthritis and DDD.

    I live alone too, and that just makes my feelings of sadness and being worried about the future even worse.
    It's nice having this forum to talk to others and give each other support.
  • No, no, Do not take NSAIDS, things like Advil, Motrin for at least the first three months after fusion. There have been sufficient clinical studies done that show it can interfere with fusion. Even if there is a small risk, you do not want to have to worry about that, too. (You could take it for a couple days just to see if it helps, but do not take it any longer than that.)

    Walking is the most important activity for you. If the PT is making you sufficiently sore that you cannot do your walking, I would suggest backing off the PT for a bit. The major time for forming scar tissue is from six to twelve weeks, approximately. Walking is the best thing you can do to keep the scar tissue from forming around the spinal nerves. Walking stretches out those spinal nerves. It gets freshly oxygenated blood to the surgical site, which is not well-supplied by blood vessels.

    Try not to be discouraged. But sometimes you can just tell when something isn't "right" and sometimes you need to push the surgeon for a MRI or CT scan to determine if there is a problem.

    Try to take several small walks each day...even if it is a block and back. If that doesn't hurt too badly, add a few more steps. When it starts to hurt, cut back. If you have all that burning, it is a sign of continued nerve compression, or at least nerve irritation. I know protocal differs from country to country. In the US, you would be slated for a steroid injection that would be given in an attempt to settle the irritation. Left-over surgical inflammation that does not resolve on its own is enough to cause major pain and problems. (a little aside: I had a lami-foraminatomy last Jan. at L5-S1 in an attempt to quiet my S1 radiculopathy that I had since my L4-5 fusion the previous January. The surgery was a breeze and I felt great immediately after and for about two weeks after. Then, at the point where I was still not allowed to drive, my elderly mom with Alzheimer's Disease ended up in the ER and hospital three times within a week. The hospital was 40 minutes by car from our house. All the riding back and forth, standing around the emergency room, sitting in horrid plastic chairs, etc. caused such inflammation that my surgery was ruined. I healed fine, but the nerve never had a chance to completely calm down and now I am right back where I was prior to surgery...so I know very well how much inflammation can harm the nerves post-surgery.)

    If I were in your shoes, I would try to convince the surgeon that your pain is more than normal post-surgical pain and see if he can't do something to quiet down the nerve pain....Are you taking Lyrica or gabapentin? That would be another thing to try.

    Try not to be discouraged. We all go through this, but it is not constructive. You are still early in the process. There is plenty of time to still recovery. So try to move forward, thinking positively and finding meaningful actions that will propel your progress in a forward direction.

  • Revisiting this thread after a couple of weeks have gone by. I am now at nearly 13 weeks post surgery and things have not improved. I have had a ct scan(posted about it on another thread) on New Years day in ER. Just yesterday my surgeon's assistant called and advised that the doctor had reviewed the scan and everything looks good, screws, etc. I've read that on this site so many times.I am not able to see my surgeon again till Mar 02. I have been seeing my family doctor. We discussed medications and I told her that if I had less pain I wouldn't need antidepressant. Trying gabapentin for now but it is not really working. I am having the usual side effects. Because of this I am so so down. I go for walks. Sometimes not too far but other times I push myself trying to be the person I was before. The pain is unrelently but varies in intensity. But it is always the burning, stinging sensations that we all know and hate. I try to be pro active. Just getting surgeon to review CT and get back to me took since Jan 1. I try to have a game plan every morning, but it disappears. I feel my hopes for a reduced pain life are slipping away. I waited for 15 months for this surgery during which time I watched my mom become very ill and pass away. I guess I don't have much fight left in me. Prior to surgery I had hoped to travel again, enjoy my garden, resume my volunteer work, wear nice shoes. Now I just hope the pain will lessen and I can get through the day which seems so long. I am a different person even I don't recognize. Thank you for letting me speak. And thank you Gwennie for your insight.
  • I'm sorry...I didn't check the dates on the posts, and see most of it is a bit old....I reread your list of issues and when you mentioned you'd waited 15 months for surgery, it occurs to me that your nerves were compressed for a fairly long time.

    It can take a long time for the nerves to regenerate. Do you have pain other than the nerve pain? (I see your comment to your family doctor...)As you know, most medications do not help with nerve pain. As a matter of fact, I don't get any relief from the "nerve pain" medications like Lyrica and gabapentin. They help for the tiniest part of my nerve pain, but not the part that really hurts!

    Pretty much all you can do is to keep walking, use a heating pad and/or ice...keep pestering your doctor...and wait and see. There are probably some other things to try...I should know, I've been doing this for two years....I'll write more when I think of them!

    Are you in the UK?
  • I live in Canada, just outside of Vancouver(home of the 2010 Olympics). You and I "talked" on the surgery forum when I asked for comments re my CT scan. No I only have nerve pain. Would doctor prescribed anti inflammatories help? I have never had an injection even prior to surgery. How have you been able to cope all this time?
  • I remember the conversation...I just couldn't remember whether you were outside the US, as my comments might not be relevant if you were!!

    I've actually had radiculopathy for more than five years. It took me three years to make up my mind to have surgery. The first thing I was offered was fusion and it just sounded so extreme for my leg pain! That was back when I knew nothing about spinal problems....now I know more than I care to know!! @)

    Sometimes a caudal injection or an ESI where they bathe the nerve root in steroids is just enough to get the body over the hump and allow the nerve to recover from the irritation.

    I take Celebrex for inflammation and I notice the difference when I stop taking it. It makes all my joints feel better...but it won't calm down nerve pain.

    If it is tissue swelling that is pressing on the nerve, I don't know what, other than time, will take care of it. I think there is more nerve pain involved when there is some instability involved, such as your anterolisthesis. More soft tissue is "rearranged" and everything has to get to a new position. It takes awhile for all of this to get sorted out.

    Are you taking a good B complex vitamin? There are some "nerve pain" supplements out there, which mostly consist of B1 and B12 that will sometimes help. There is a supplement called Zyflamend that some people think helps with over-all inflammation. Other than things like this, you are left with doing things that make the nerve pain feel better.

    My pain is in my right leg, but both legs seem very susceptible to cold now. When the weather is damp, it cuts right through me and makes me ache terribly. So on those days, I keep my legs warm with a layer of silk underwear and warm socks or shearling boots. I use my car seat heater even in the summer when driving as it feels good on my lower back and legs. I use an infra-red heating pad twice a day on average. I have an electric mattress pad that I crank up when in pain. I drink a lot of tea and soup just so I don't feel cold all over. And if my next fusion does not provide any relief, I'm thinking about buying land in New Mexico. ;)
  • well gwennie,there is that wonderful sense of humor! let's see if you can find land in New Mexico,and I can find that morphine pump on the infomercials for 19.95(shipping and handling not included), and we will be good to go!
  • Thanks again Gwennie for sharing your personal experience. I tried not to take the gabapentin yesterday and awoke last night in terrible pain, unable to sleep, burning foot and leg. I decided to go back on it for now. Maybe I should just give it longer and to heck with the side effects like feeling out of it and tired. I can't do much anyways so it's not like I have to be super alert. Today I wrote a letter to my surgeon listing all my pain symptoms and what has been done so far by my family doctor. She has done various blood etc tests to eliminate any other cause for the pain. None found. I remained clinical and straight to the point. I wanted him to have the whole picture. I am going to fax it to his office. I need him to look at it and decide what the next step will be. He is a very busy man. In his office only 1 day a week, operating, teaching at the university and working at a private clinic. But I can't believe that he's done with me. It's only 13 weeks. I'm not aware that we have doctors for pain management alone in Canada. It's
    up to your family doctor. Anyways I am rambling...
  • You might as well try Neurontin a bit longer because there aren't a whole lot of options for nerve pain. It is usually the kind of side effect that goes away as your body gets used to it.

    You would have laughed at me today at my surgeon's appointment. I asked my remaining questions and then booked my surgery. He had his first opening on Feb. 12th but I told him I couldn't be unconscious for the Opening Ceremonies!! I finally decided to wait until March 2nd when the Olympics are finished. Also, the weather will be a bit better so I can walk outside with at least a chance of having clear roads -- when we do have snow in March, it usually doesn't last a real long time.

    I got fitted for a brace. This will be a new experience for me as my other surgeon does not use bracing for surgical patients. I feel sorry for my doctor. I keep questioning why he does things a certain way...and he patiently explains everything. But every time I learn something new. Today in addition to all the stuff pertaining to my surgery, I learned that with a lumbar fusion you should not lift the leg above about a 110 degree angle -- just enough to be able to do steps. Any more than that and it has the same effect on the new bone as twisting. This was the first time I had talked with my doctor's physical therapist. They have worked together over twenty years and I can tell the PT is a fount of knowledge. A new brain to pick!! Yippee!
  • Interesting about how high one should lift leg after fusion. If you don't follow the blt rule what exactly happens? Does the new bone not form? What is the process? I believe I did follow no blt but I may have sat too long at times and got in and out of the car starting at about 3 weeks. On my walks I did do some steps. My ct didn't mention bone formation. Neuro said that it is very doubtful any would be seen at this stage of healing. I keep wondering if I did something wrong and therefore I have this pain. Very unsettling. Great that your doctor will answer any and all questions. I hope all have been answered to your satisfaction. Yes our whole city and province are gearing up for the Olympics. It's a big deal! But it feels like spring today. That will be great for those trying to get to events held in the city such as skating,hockey,curling etc. They keep saying there is enough snow in the mountains for the alpine events. I hope so.

  • Sorry to hear that you are still experiencing pain. What dosage of gabapentin are you on? Maybe your doctor can up the perscription. Also, we do have pain management clinics here in Canada, (I'm in Ontario), just ask your doctor for a referral. You might find some if you google it. There was actually an article on CTV news a while ago, about a study done by a dr here in Kingston, my pain management doc is actually good friends with him. He said that they are having good results with patients who take a combination of gabapentin and nortriptyline (a tricyclic anti-depressant) for nerve pain. I'm now on both, and it does help, I still have pain, but it is better than what it was.
    I have a lot of friends out in Van working for the Olympics, I'm a little jealous I'm not there, too, but then again, they're all sleeping in tents, so I'm glad I'm not!!! LOL.
    You're still not far out from your surgery, but it's so hard to be patient isn't it? With time, you'll find that you do feel better than how you do now, just hang in there!!! Hope you do find relief soon!!!
    Just found the link for the article, here it is, in case you're interested:
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • It is understandable that we have expectation that after any invasive process we will be better than before and that is understandable, we should not have to think that this will continue and even surmising that this level of pain could continue after you procedure would seem negative if anyone suggested this as even a thought let alone a possibility.

    Finding a suitable strategy for the now does take time and perseverance, trying to be the person you once were is now very difficult and maybe unattainable, we do not want to let go of who we once were and in doing the thing we once did perhaps we could in some way be that reason again.

    You have had a lot to cope with and are doing well, not as well as you would like but good anyway. It is a balance of what you can do and do not pressure yourself to do more that you can physically cope with, does anything make it better or worse use that list to plan what you can do rather than what you would like to do and pace even more effectively.

    Letting go is never easy and seems as if we are giving in when we are not we are just using what we have now and our capacity to do the best we can given our current circumstance, sadness take time to develop and it is understandable and normal for you to feel like this, we al did and do even with experience over time. Perhaps develop a no sad strategy and examine what things specifically make you feel like this and try to work through each element, it is not easy or fair.

    My walking has all but gone now and I have developed alternatives to doing the things I like doing and substituting those with similar things, I may never do the things I once did and they are gone forever, I have learned to appreciate alternative activities that attempt to replicate the joy of doing all those things I now miss so much and it is not easy.

    Take care you are adapting well and will come though this.

  • Thank you for your comments

    Smiley735- I am taking 300mg about every 8 hours. The doctor already said I could up it to 600 every 8 hours if I can tolerate it. I'll see. I'm kind of out of it. Thanks for the information on the combination drug treatment. I'll keep that in mind. I have heard of some of the hospitals having pain clinics but not individual doctors. Some of the hospitals have over a year wait. But I'll have to check it out. I know we have physiatrists. Maybe that's what they do. Well if your friends are sleeping in tents at least it's not that cold. Lots of rain. It will be a crazy time here that's for sure. Hopefully all goes well, so much concern about security. Looking forward to seeing the Canadian men's hockey team in the finals eh? By the way, I see you were in the military. Where did you serve?

    John-Thank you for your thoughful comments. I am trying to make adjustments in my thinking. Focusing on what I can do, not on what I can't do. But it is very hard. At times everything provokes a feeling of sadness and I become overwhelmed. Remembering just 2 years ago I could do pretty much anything and now here I am. Why? Why? Well I just wore out my back I tell myself. That was difficult for me to accept. I don't want to reinvent me, I just want to be the old me. Then the long wait for surgery and now the lingering pain and all the unanswered questions. I know that I will have to change, accept and adapt in order to survive. And if my pain levels improve and I am better I feel I'll be a changed person forever. I think of the people that have been dealing with chronic pain for years and years and have the strength and courage to go on. This is something I never really thought of or understood until my own experience. It's a world like no other. Thank you for taking the time to speak to me. Reading your words gave me a lot to think about today.
  • trust me, I had my 2 level PLIF in Dec 2008 an d am 13 months and still having pain. I have had 9 surgeries in 2 years, so my surgeon is giving it 6 more months to let it heal some more. I had my hardware out in Oct in hope it would relieve some pain. I think you need to try and give it some time as you are really still very early in your recovery. I know, yada yada yada. Been there done that. But some people take longer than others and nerves are very very slow to heal. I had my problem for 2 years before they figured out I had torn discs. So i was glad they finally found out what was wrong and that I wasnt just a nut job. I hope that you will find something to help your pain a little bit. It is hard to deal with every day, and keep your chin up. Keep posting here to your friends, cause we all do care. I have found some very wonderful friends here, who have given me alot of support when I was dreadfully down. PM me if I can help, Hang in there, Love,Robin
  • I'm going to see a physiatrist for the first time in a couple of weeks myself. I think they do help a little with pain mgt, I'm actually going to see him as my pain doc figures I have fibromyalgia, and a physiatrist can diagnose. My pain doc is actually an anaesthesiologist, so he mainly administers injections.
    I'm still in the military, (im)patiently waiting for my medical release, lol. It's such a long process, but all to our benefit, as they want to ensure that you are as "fixed" as you possibly can be before you get out. I spent most of my career at CFB Petawawa, here in ON, but was lucky to get a year in Whitehorse before getting posted here to Kingston. Loved it up there, and am planning on retiring there!!! It's so weird to say "retiring" as I'll be under 40 LOL, but I will have put in 20 years by the time my med release goes through, I can't believe time has flown by so quickly. Who knows, maybe one day we will meet up, my boyfriend's family are between Whitehorse (yes I met him there, lol) and Kelowna, and we do plan on going down to visit lots, I never got to spend much time outside of the airport in Van, lol.
    Anyways, I hope that you do find some relief, keep searching and talking with your docs to find something to help you. I went up to 3 X 600 mg of gabapentin in early Dec, it has helped, but I'm still not where I want to be with my baseline daily pain. Oh, to be at a 2 or 3!!! I'm getting there, it's been a lot of trial and error though, so be patient, hang in there, and you know you have us to talk to!! Take care;
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own

  • Robin, you have been through a lot. I have followed your story for about a year. Thank you for your supportive comments. I know you are still going through so much and are still looking for answers. I hope you can find something to lessen your pain. Thanks--Naida

    Smiley735- Thanks for your comments. Yes at 300 mg 3x a day the gaba is helping somewhat. I don't feel like I can up it right now cause I am very dozy and don't like the feeling but am putting up with it.Boy 20 years in the military. Thanks for your service for our country. Take care.Naida
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