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7 weeks P/O- Having a scare today

LC84LLC84 Posts: 599
edited 03/20/2014 - 11:07 AM in Recovering from Surgery
I've had continued nerve pain in my buttocks and leg since surgery. My recovery has been up and down, but today I had an experience I never had before. Today I awoke from a nap with stabbing pain a couple inches down, and to the left of my tail bone. I stood up and the pain significantly increased and constant shooting pain started to radiate down the entire back side of my leg. The pain was so intense it about knocked the wind out of me. I tried to walk a bit to see if it would help loosen me up if it was muscle related. I had to hold on to something as I walked very slowly, then my left leg and top of foot began to go numb. I immediately laid down and it helped to relieve the numbness and shooting pain down my leg. The stabbing pain was, and is still there along with pain and spasms in my left cheek and upper thigh. However, the pain is not quite as intense while I'm laying down. I cannot stand right now. I called my surgeons office right away and there isn't much that can be done today because he is in surgery and will not be back in the office until tomorrow. She mentioned trying ice and heat or going to the ER. Ice only irritated things and I don't feel the ER will be able to help me much. I'm going to try to wait it out until she consults with my Doc tomorrow. I may be okay as long as I don't move too much. It's probably muscle and nerve irritation, but I have never felt such an intense pain and numbness in some of these specific areas before. I hope I make it through the night without an ER visit.
Progressive DDD
Osteoarthritis
Chronic S1 Radiculopathy
Discectomy L5-S1 2002
Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
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Comments

  • LC84LLC84 Posts: 599
    edited 03/21/2014 - 7:19 AM
    Even though no one replied to my post it still makes me feel better to write things down. My neurosurgeon thinks something irritated my nerve. He asked about my activity level and the day before this happened I probably did too much. I'm not back to work yet but I stopped in for a meeting, then ran an errand, made dinner, did homework with my Daughters and helped with their showers before bedtime. I was very careful while doing these things but I'm worried I messed something up. The symptoms are still there today (much worse when I stand) so he wants me to rest all weekend and call Monday if I'm still having problems. My biggest fear is that one of the discs re-herniated, but hopefully it's just irritation. The nurse discussed another round of oral steroids in the meantime. I hope the rest and meds help. At just over 7 weeks post op I had hoped to be feeling better by now. I'm trying to stay positive and hope for the best.
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • in the acute recovery period and flare things up for a bit........three months is the time frame for the acute post op recovery period, which is why we are all told not to do things and listen to the post op instructions.
    Hopefully the steroids may calm things down and ease the inflammation......I hope so for your sake.
  • Thanks for the response. I have followed my Dr's instructions as far as activity. I don't always have someone available to watch my children and I've been so careful. They are 7 so they are old enough understand. I watch the way I bend, and I don't twist or lift anything over 5-10 pounds. That day was the first I had driven in weeks, and I was cleared to drive. Maybe it was just too much in one day. I've had some other muscle problems post op as well, I was told to walk to help with that issue (which I've done as tolerable). It's been very up and down. It's hard to find the right balance of movement and rest. I will definitely be in bed ( besides restroom breaks and eating) until I follow up Monday.
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • LC84LLC84 Posts: 599
    edited 03/21/2014 - 4:47 PM
    I got to thinking about the 3 month acute recovery period you mentioned. I had a 3 level Discectomy and Laminotomy. There was nerve compression and irritation at more than one level. Prior to surgery my surgeon expected I would be back to work in 6 weeks, and I have a physically demanding job. Things did look worse when he got in there but he never mentioned a 12 week recovery. I guess I'm a little surprised that I would potentially return to work prior to 3 months. Of course I'm not a Dr, but I would think that there would be a higher risk of re-injury if things are not completely healed. Am I incorrect In this way of thinking?
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • Sorry you are having a flare up. I know it's hard to take it easy when we feel good and there's so much to do. After both my surgeries, I would do the same thing....and pay for it. Slow and steady. Have a great, relaxing weekend!
    Monica
    April 2011 C1-C2 Fusion (Brooks wiring)
    January 2012 C1-C2 Revision Fusion (Harms Technique)
    2010 - current: Trigger Point Injections, Epidural Injections, Bilateral C2-C3 Radiofrequency Ablations
  • It is hard to take it easy but lesson learned. I've had many flair ups of back pain before, but this was different. Once I get over this hump, slow and steady is definitely the way to go. Thanks for the response.
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • I read your posts and can totally relate. I had a decompression at L3/4 and L4/5 about 30 days ago. I was expecting (silly me) to be free from the sciatic pain but nope, not me. It's been every darn day since surgery. The dr says it can take a while with some people but it's oddly not reassuring to hear that while you read the web where it says people get I stand relief! My incision is still slightly swollen but healed nicely. I feel best when walking but the dr said not to over do it. When I lye down I often get numb in the behind and feel funny nerve twitching in my legs. I've become a shell of my former self. This has been the hardest year of my life and when I finally decided on surgery I was so hopeful. I have a feeling you know exactly what I mean.
    Please try to rest and I will say a special prayer that you get over this hump quickly!!!!!
  • Thank you, I hope your symptoms improve as well. I've heard as long as 18 months for nerves to heal. I do know what you mean, I was hoping to be one of those that woke up without sciatica symptoms. I've had a few bumps in the road as far as my recovery. At one point walking helped me a lot too. It helped with the muscle problems I was having. I don't know what I did this time, but it's a new pain and the sciatica is worsening. Prayers our greatly appreciated. I do hope it's just a minor hump that will improve. I can also relate to not feeling like yourself, I've had a pretty rough year too but I try to smile and be pleasant as often as I can. I still feel hopeful that the sciatic pain will resolve, or at least lessen to a more manageable level. It takes a lot of patience, which can be difficult at times. On the bright side, I am catching up on a lot of good movies this weekend :) I wish you well and thank you for responding!
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • Hi .. I feel for you. I am one month post two level TLIF. Thursday I was taken by a friend for a coffee five minutes away by car and it was a strain getting in and out of the car. He also pulled a garden trolley for plant pots for me. Friday, Friday night and all today have been murder .. Would willingly go to hospital and beg for 24 hours unconscious in bed. Knowing how much is too much seems very difficult to judge until after the event. I am still taking slow release OxyContin twice daily plus small dose diazepam and amitryptyline at night ... Lots of small but very painful spasms today, surgical area 'burning' left leg weakness and general exhaustion. Despairing as I have had some reasonable days ...
    Wish you better and hope our next messages are more cheerful!
  • I'm so sorry to hear you're in so much pain. It doesn't sound like you did anything too strenuous. I thought I was being very careful while doing those things, but maybe that was still too much. I didn't feel too horrible the morning after, my low back was a bit more sore, and I had my normal morning stiffness and nerve pain that's been constant since surgery. After my nap was when it all hit me. Recovery can be so up and down its hard to tell what might irritate things even more. I questioned going to the ER initially but I figured they would offer me meds and send me home ( I already have meds). I find some relief when I'm lying down, but the symptoms are still there. I too feel a burning at times but it's in my buttocks and back side of my upper thigh (even when I'm off my feet). I also struggle with spasms and I am taking Valium as well. I'm still having restless nights and minimal improvement at this point. I hope you begin to feel better too. It can be quite discouraging to have set backs.
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • Hope you are improving ... Good news is that I seem to be over the worst of this episode. Rested and slept a lot Saturday and sunday with improvement both on the pain and the panic fronts! Woke at 4 last night needing help to go yo the bathroom as could feel spasms starting, but ok. Here we are Monday morning, the sun is shining and loads of Valium later I am ready to face a new week and whatever I think I can do I will reduce my expectations a and be very careful. These setbacks are very depressing. Everyone seems to have similar stories ... This is no picnic! Have a better week.
  • I'm so glad to hear you're improving, and positive! My symptoms are less intense. I still have the pain near my tailbone which worries me a little because it was not there before. I stayed in bed all weekend, apart from short walks around the house to loosen me up a little. I did watch a lot of good movies :) Pain is still worse while on my feet but it's manageable. I'm still going to check in with my surgeons office today, but I feel I'm on the right track. I agree with you, I have reduced my expectations as well (which I'm okay with) and no more overdoing it. Slow and steady as stated above. Enjoy the sun! It's quite cold and gloomy here. I hope you have a better week as well, thank you!
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • LC84LLC84 Posts: 599
    edited 03/24/2014 - 1:02 AM
    Strange things have been happening since the site went down. I think I lost my posts from yesterday ONLY, and this was my first post this morning that didn't want to post initially. It's okay about the lost responses, I just didn't know if others were having the same issue.
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • Yes, it is scarey.. I have been fighting paralysis, increasing pain and leg weakness, all the things you mentioned here, for the past 7 months.. What is the most scarey is: The quacks all have the "call 911 .. I'm busy" freaking attitude.. I even had an "assistant" tell me, when asked if a more thorough MRI could be arranged, "well we are limited since we have to protect the practice"... Personally, I am looking in an entirely different direction for relief.. Naturopathic or Orthopedic or a combination of the two.. I hope your situation is much better than mine and you recover quickly... Good luck
    carl
  • LC84LLC84 Posts: 599
    edited 03/25/2014 - 1:46 AM
    Last night was nothing short of a nightmare. The pain came back full force. I felt like someone was stabbing me near my tailbone, there was sharp pain, spasms, and numbness in my left leg, even while lying down. I tried ice/heat interchangeably, breathing techniques, I turned on my music and read a magazine to try and divert the pain, and biofreeze was NOT a good idea. I tried walking around a bit but it only made it worse. I'm already being treated for this "flare up" ( I hope that's all it is) but it's been going on since Friday (not every night has been like last night) but it's been rough. I almost went to the ER, but then my realistic way of thinking kicked it and I knew they couldn't do much since I'm already being treated. (Started an oral steroid Friday, Valium every 6 hours, Percocet every 6 hours, and I'm still on Lyrica). It would have been nice to get a call back from my surgeons office yesterday, but that didn't happen. I don't know what else they can really do for me anyway except maybe order another MRI to ensure one of my discs didn't re-herniated. I hate to complain, but this just doesn't feel right. I wonder if I've built a tolerance to the Percocet since I've been on it pretty consistently since July. My goal was to kick the meds, not need more. I'm trying to stay in good spirits, but I've had continued nerve pain since surgery and my muscles got so irritated at one point it looked like an Alien was about to bust out of my back (AKA- strange swelling). I will be calling my Doc AGAIN today.... End rant.
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • sciaticjennssciaticjenn Posts: 36
    edited 03/25/2014 - 2:51 AM
    Hi! Just thought I'd check in to see how you were doing???? I hope things this week have improved. I'm about the same :(
    This is so difficult on your self esteem.
    I had an apt with a DR yesterday who is a physical rehab specialist. It was really worth while as we discussed where to go when I'm released from the surgeon and how to proceed with my rehab. He has PT that he works with and he writes detailed scripts as to what he wants done. He can also deal with ongoing pain through the rehab process. Not sure where you ladies live but perhaps it might be worth looking into? I felt like I had a clearer plan when I left and I start PT and see him again in two weeks. He did say it takes nine months plus for some nerves to remilate(sp?)
    Hoping brighter days ahead for us!!!
  • I just saw your post :( that just stinks!

    If it makes you feel better I had a week of nasty tailbone pain too. It was awesome! And my leg is numb as well has my behind when I lie down. So I know it's hard to rest that way! Have you tried on your side with a pillow between your legs?

    Maybe you should think about getting to the type of DR I mentioned. Maybe they can help with the pain?

    I feel for you.
  • Remember, he's working for you, not vice versa. Call them every hour on the hour if you have to. I hope you get some answers and some relief soon!
    Synovial cyst removal in 2008. L4-L5 facet joint.
    Lumbar fusion at L4-L5 in December 2013. TLIF posterior entry
  • Yes I've tried all sleeping positions. I do plan to discuss with my surgeon a referral for ongoing treatment ( there are similar options here). I just don't want any false hope. I want things given to me straight and I think my surgeon has been a bit too optimistic. I know he can't say for sure what will happen, but if there is a possibility that I'm going to have constant nerve pain (which I know is possible) then I can deal with that. What's most frustrating is the ups and downs, the false hope he gives me that I'm going to continue to get better when maybe I'm not. I like both my surgeon and physician but neither are equipped to deal with ongoing pain long term. I'm glad you have a plan of action and I hope your symptoms improve also. I think I will feel better when I too have a plan.
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • I called twice yesterday and once this morning. I will be calling again this afternoon if I haven't heard anything. I'm just not sure what they can even do for me.
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • Poor you .... I felt as wretched as you on Sunday. It seems it takes two or three days to get back to where it started to get worse. For me today has been a minor miracle and I hope things ease up for you too. I see my surgeon tomorrow for my first post op follow up. I get the feeling with the surgeons that once they are done, they prescribe your meds to come home with and then via the odd phone call (through the secretary) they just reassure you that all these horrible aches and pains are part of the the process. I also thought about getting myself readmitted on Sunday ... thought somebody would take pity on my and put me back on a morphine pump or sedate me. However ..... it DOES pass and we just have to find our own way of dealing with it ... be it cold, hot, a weep, a walk, a sleep ... I was told NOT to use ice because the 'heat' is part of the healing process, so no Biofreeze or ice. I find, oddly, that lying on my back pretty flat with no pressure into the base of my spine is sometimes better than on one side as the muscles in my thighs and hips are tight. Diazepam seems to work well for me as a muscle relaxant and allows me to sleep - and when I have interrupted nights, there is still enough in my system to allow me to fall back to sleep (when it is one of the luckier nights). I am learning this is a mental battle as well and that 'accepting' all the limitations of the pain and lack of movement is very difficult. I feel guilty about my husband being so restricted in what he can do ... over the weekend I was in such a state he only left my side to bring me food and drink as I nearly fell. I didn't even shower one day ... unheard of for me ... but he just didn't want me doing anything to further aggravate the pain. I hope you feel better too and sort out a plan for your meds. I take amitriptyline for the nerve pain and find it very effective and it has no side effects for me. I am still on Oxycontin and still unable to reduce the dosage ... this will take time .... and more time ....but will be worth it in the end not to have the same pain as before which had no chance of improving. Hang in there ... if you will, I will!
  • LC84LLC84 Posts: 599
    edited 03/25/2014 - 12:55 PM
    I'm hanging in there. I'm glad you are as well. Even though it's hard needing help, it's nice that your husband is there for you. I know my post was a unhappy one but I hadn't slept so I was a bit more irritable. I finally fell asleep for a 3 hour nap, was awoken by my phone and went to answer but I was too late. It was my surgeon's office. They closed over an hour ago so I can't get through and she did not leave me a message. I waited all day for that call so I am a little frustrated. I'm going to put all my energy into gathering a list of questions/concerns I'm having, including my long term options, and I plan to discuss them at my Friday appointment. I had specific instructions, try ice/heat therapy, rest all weekend and call Monday. Then I don't hear back until Tuesday night and she doesn't even leave a message. I just needed guidance as to where to go from here. I'm glad you're having a better day. I know there is hope, I just need a plan in place.
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • Just checking in to see how your follow up went. I hope your doing better!
  • Thank you for checking in. I may have posted in the wrong spot, but if you look under the chronic pain threads you will see my update. In short my surgeon diagnosed me with a couple other problems and I'm being referred to a physiatrist for ongoing treatment. I posted under chronic pain because I was hoping for some insight or information regarding my new, probable issues. How are you holding up? Any improvements?
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • My update was moved to SI joint problems. Guess I posted in the wrong place.
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • Error occurred, just noticed the post was not intended for you. Sorry about that, I think it happened during the site issues. I'm sorry you're having continued problems, not just physically but with the staff. I hope your situation has improved.
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • I saw you last post. Any improvement?

  • LC84LLC84 Posts: 599
    edited 04/03/2014 - 5:37 AM
    Unfortunately I'm having a very difficult time. My last "flare" is not so much a flare, but an ongoing problem. The pain has me very limited right now. I can only manage short walks around the house and even while lying down, the pain/spasms of my left buttocks and leg is constant. The numbness/ tingly feeling comes and goes and affects me from my hip to my toes. Some of my symptoms such as the stabbing pain near my tailbone is worse while standing, while others are worse while lying down. My heating pad and Valium help lessen the constant spasms, but they don't take them away completely. My surgeon thinks I'm dealing with a combo of nerve damage, SI Joint Dysfunction, and Piriformis Muscle issues. He also switched me from Lyrica to Neurontin so I'm hoping the Neurontin helps more with the nerve pain and with fewer side effects. The transition is making me a little foggy so I'll be glad once I'm off the Lyrica. I'm still waiting to hear from the physiatrists office. I'm hoping to get that scheduled soon so I can move forward with additional treatment. For now I'm just taking it easy and trying to manage the pain the best I can ( taking 800mg ibuprofen 3x daily and Percocet every 6 hours). At times it acts up so bad nothing really helps. Right now I can't sleep for very long periods, but I think it's my body telling me to get up, move around, then do my best to try and fall back to sleep ( sometimes I can and sometimes I can't). I appreciate you checking in and I wish I had better news. How are you holding up?
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • sciaticjennssciaticjenn Posts: 36
    edited 04/03/2014 - 6:11 AM
    Reading your post brought tears to my eyes. I truly know how tough this is. It's so frustrating to have gone thought the surgery with hopes of pain relief to only struggle on the other side. I'm really thinking of you and hope the coming days you find relief and some answers.

    I'm about the same :( my incision has healed nicely but I still have swelling (I'm at six weeks out from decompression on both sides of the foreman L 3/4 L 4/5 and micro disc on L5) I'm still having sciatic pain in my thighs and at time into my legs. I get this insane twitchy feeling in my legs when I sit or lie down. I still get a numb big toe on the right at times but that's nothing and I'd never complain if that was all I had! I'm not sleeping because I'm getting horrible anxiety from worry that this is now my life at 43.
    I can walk and started therapy but I was told I was walking too much but it was keeping me from going nuts.
    I think I've kind of pulled away from people because I feel "damaged" and I'm tired of feeling like this injury defines me. Do you know what I mean?
    Before this I was a marathon runner and in amazing shape. I feel like a shell of my former self but then feel like a total witch because it could be SO much worse.
    I had a follow up on Tuesday, my six week mark, and the Dr said it could take time for my nerves to heal but I'm losing hope at a steady pace. They were compressed for a year and he said they were inflamed and flat as can be. I was told the same thing by my rehab DR but for some reason I just can't think positive. Sigh. Then I get mad at myself for being so negative. In every other way I'm a really lucky girl. Great husband, three super dogs, a comfortable life! We are in FL right now at our winter home. I chose to have surgery here thinking rehab would be easier with the nice weather. I thought when we head home in May I would be my old self again. I guess I was too ambitious.

    I'm sure I sound like a fruit cake! Thanks for listening and I'm praying for you, I really am!
  • LC84LLC84 Posts: 599
    edited 04/03/2014 - 7:31 AM
    Thank you so much for your compassion and support. It's comforting to know that you are sending payers my way. I am sending prayers your way as well.

    I truly believe that there are ways to manage the pain, whether it's medication combinations, physical therapy, and the ever so frustrating, giving it time etc. I understand the way you feel, as if pain defines you. I too get angry with myself when I focus on the pain rather than all the things I'm grateful to have: 2 beautiful daughters, my fiancé, a supportive family, and an employer that's giving me as much time off as needed and allowing me to come back with restrictions. I also enjoyed running, weight training , and being active. I think it's a matter of getting to the point of acceptance, knowing our lives may be different , but can still be fulfilling ( once the pain is better controlled). I'm just ready to move forward with whatever treatment is recommended.

    I'm truly sorry to hear that you are still having trouble, are you taking anything for nerve pain? Hopefully the physical therapy will help. I think finding the right combo of treatment to reduce pain also takes time, but once you do, what you're feeling now will not be your life. I believe things will get better for the both of us. I know I will not lead a pain free life, but hopefully a reduced pain life. I'm so ready for it to get warm here. The gloominess and inability to get out of bed for long is my biggest struggle. I'm trying to stay positive, I hope you do as well!
    Progressive DDD
    Osteoarthritis
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
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