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Change of plans for Ming

MingMMing Posts: 1,127
edited 06/11/2012 - 7:42 AM in Back Surgery and Neck Surgery
Hello my fellow spiney's. I'm so sorry that I haven't been on here lately. Some of you may already know that I was going thru the SCS trial. I ended up in hospital for 5days with spinal headache due to the lead scraping my spinal cord producing small spinal leakage.

Since then the back pain has increased and the numbness and tingling is getting worse so I called the new neurosurgeon's office to let them know as I wasn't scheduled for another appt for 2wks and I was concerned. They had me come in yesterday and I had a complete meltdown. I'm so sick of laying in bed all the time cuz I am in so much pain and that's the only semi-comfy position and not being able to get out and do things with my family and friends. My toes are starting to go numb on me and the tingling is getting constant.

The surgeon informed me that the 2 broken screws have now pushed thru and are pushing on the s1 nerve causing this pain, numbness and tingling in legs, feet and toes. After reviewing my films again and the fact that I had the compllications with the trial he has decided that another fusion would be my best chance of having a better quality of life.

So yes, i'm going under the knife again on April 19th. I wanted to wait until after Easter or else they would've done w/in 2wks cuz i'm in agony. I may ask to have date moved up tho not sure yet. He is going to fuse L4-S1 posterior with rods and screws and said they don't use plates anymore because they tend to slip. He said I'm the perfect examply why their office doesn't do ALIF and don't use plates. He said they are not as stable and the plates can shift and in my case 2 screws broke.

Like Tony (aka straker) I've been told there maybe 50% reduction of pain which is still better than where I am now. He also described this is a tough surgery and mine will be atleast 1yr and I may have to go into rehab facility.

Sorry for being so long. I'm trying to get everything in there. I haven't been on much cuz I've been in so much pain and the meds make me so tired that I spend most time in bed sleeping.



  • I forgot to mention that the neurosurgeon has suggested that I work on cutting down on pain meds before surgery and I'm going to try to lose weight before. I've already lost 27lbs.

    He did stress recovery is going to be hell but worse if I'm still taking large amounts of pain meds such as mscontin.

    I have an appt with my pain mgmt doc today so going to talk to her about that. I better go get ready cuz I have to leave at 9:30.
  • Sorry about the pain you going thru.Well it sound like you might be 50% pain free in fulture That sound great.Its about time you get some relief.You know you will be in are prayer.
    By the way great job in losing the weight.

  • This sounds like a sensible solution to me. I don't quite understand why he thinks your recovery is going to be so much more horrendous than it would be otherwise. Why is this more than the usual two level revision surgery?

    I must be missing something because to me, this sounds like a positive development for you. It sounds like they have figured out the source of your pain and will be able to do something to fix it. Unless the nerve has been severed due to the screws, which it does not seem it has, there is always a chance it will heal and your pain will be much reduced. Of course, this could take awhile, but I am a firm believer that nerves can and do heal, even years down the road.

    This sounds like a really optimal solution. It would be much better to find a permanent solution instead of having to deal with a neurostimulator for the rest of your life.

    I know you will go into all this with a positive attitude and I pray it will all turn out well for you.

  • Michele...sorry you are still in so much agony but it sounds like you are really taking control. You got an earlier appointment and you have a plan now! Please let us know if the date move b/c we'll clearly pray for you.

    How did you lose 27lbs? Darn...I would love to lose 10lbs in the next 3-4 months.

    (I guess I need to stop eating my oreo flavored birthday cake).
  • You've been through a lot and I'm sorry to hear you're in such agony and having to face another fusion. I hope this surgery relieves your nasty pain and that it will begin a road to recovery that will allow you to get back to some kind of life. You're going to be okay, I just have a feeling. :)

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled

  • Sorry that you have had such a rough ride lately.
    It sounds like you have some hope now, that there might be a solution on the horizon. The days until your surgery will be rough, but you now have hope for the future.

    I'll be praying while you wait for surgery and also that this time, it will be successful, and be the right path to a better life.

    Take care
  • Michelle,

    I do hope this surgery does help you and reduces your pain by the 50%. My surgeon does the same thing with the percentage on reducing pain. Hopefully you will get more than the 50% reduction though. As far as the nerve healing I have to agree those things take a long time to heal, so be patient with it. The wait will be hard anticipating the date, but I can understand why you want to wait as well. Good luck with the additional weight loss efforts, and eating healthy can go a long way in your recovery as well. Hang in there at least there is a light in the tunnel. Hope your pm had some answers for you reducing the meds as well. Take care.
  • I'm sorry you've been through so much this past year or so and lately. I'm glad your Surgeon will be doing your surgery soon to get you out of pain. It's just not right what you've been through. I hope you get pain relief plus you deserve it! Good to hear of your weight loss event though it was lost through your tears of pain.. Hug to you and prayers and if you need more prayers this time I will pray harder. You're such a good Mother and hope you can find next year crouching down hiding those Easter eggs for your children no matter how old they are. Heck my Mom still hides my Easter eggs and I'm 49 but never had the joy of having my own children. Stay strong. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Sending well wishes and prayers your way Michelle. I know the wait seems endless, but knowing that you have a plan and knowing that you can have 50% less pain sounds awesome!

    I'm sorry you have had to go through so much. But I am confident there is light at the end of the tunnel. I often think of the statement, "it is darkest just before dawn".

    I know it is hard and definately challenges your sense of faith. We are all here for you!

    Congrat's on the weight loss! That is awesome! How did you do it? I had/have sooo much swelling. My belly extended out past my breasts~sorry guys, after surgery, it was just shocking. It has gone down significantly, at least 50%. Today at P.T. they measured to be able to document the progress in re to swelling~36 inches! I am 5'2". I don't want to "diet", but this swelling scares me. I have been counting weight watchers points, just to be sure I don't over snack. I know after surgery it is recommended to eat high protien, low fat/sugar. I would love to hear how you have lost weight. It is difficulty to do when you can't exercise and get your heart rate up, so congrat. You should be very proud!

    Hang in there Michelle! We are here to support you! Shari
  • So sorry for all that you have been through, but hoping that this will help you. You are having the same surgery I had last year. It is heck the first 2 weeks, but after that, it starts to get better.
    Why the rehab? Do you have anyone to come and stay with you? I found after a week at home, that things started to get a little easier and I was along during the day. I dont have kids to tend to of course, so that makes a difference.
    Have faith my friend, that this will be a big positive change for you. It is a long recovery, but I know how strong you are, and you are a fighter, and do not give up. So things should get better for you. I will be thinking of you. Take care, Robin
  • HI Michelle,
    All I can say is I wish u all the best. What a terrible thing to have to endure again........God b with you

  • Hey Ming hope all is well glad they have found the problem I just had the fusion surgery on the 20 Jan 2010 it has been a very tough road and it is a difficult surgery I am still having problems I hope that you get the relief you deserve I will be praying for you keep us posted
  • Thanks everyone. I can always use extra prayers and even though I haven't been on here so much I still keep all of you in my prayers everyday.

    I lost the weight with a combination of using alli, OTC weightloss med which works best with low fat/calorie diet such as weight watchers. I was a lifetime member at one time so I try to follow weight watchers to the best I can w/o journaling or going to meetings cuz I can't afford it. My biggest thing that I need to cut back or off is my nightly bowl of icecream. I can't exercise so controlling what I eat is the only way. I really don't eat much though and prob less than I should except for the icecream lol.
  • I forgot to mention that although they won't be taking out the screws that are broken or the plate. Instead the new neurosurgeon said he will have to grind down the part of the screws that are pushing on the S1 nerve.

    Luckily, I don't have any permanent nerve damage as far as I know. I just had another EMG in Jan or Feb 2010 that confirmed this. So I'm hoping the leg pain, numbness and tingling will clear up pretty much immediately.

    I'm mentally prepared for this surgery and have an idea of what to expect postop as it was only a little less than 2yrs ago that I had the ALIF L5/S1

    Thanks for all the prayers, thoughts and kind words.

    Your spiney friend,
  • Oh Ming, I am SO very sorry this is happening :(

    Please do let us know how the appt.today goes with your pain Dr.
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • My appt with the pain mgmt doc went good. I basically told her my strategy of weaning off the mscontin before surgery and she went along with it and I'm going to try to reduce dosage of norco from 10/325 to 7.5/325 and maybe even down to 5/325. It's going to be hard cuz I'm going to be in so much pain.

    Another thing I forgot to mention was about 2-3 months ago my husband hurt his back. I ended up taking him to ER and my new neurosurgeon happened to be on call. After a couple appts with him CTscan, MRI and xrays we found out he has 2 herniations in his c6/c7 disc. It's causing numbness and pain down his arm all the way down to his fingers. He definitely had a change of attitude. For all of you that have followed me you will remember that he was not supportive at all and very against me taking pain meds. He ended up on oxycodone but just weaned himself off. He now has a better appreciation and more sympathy for what I am going through. He's been unable to work for about 2 months so it's been tough for us financially but we will make it through this tough time. He may need fusion or ADR but he's actually starting to feel a little better so he is going to put off talking surgery till I'm recovered from PLIF.
  • Thank you so much Jane. That is so nice to hear and I'm glad that I could offer some help, encouragement and support for others. I only wish I could've been on here more to help other new members who didn't get a chance to know me.

    God bless all my spiney friends!

    :X :-X :love:" alt=":love:" height="20" />
  • I'm actually glad you are going to have another surgery! I know that sounds terrible but to think for awhile you thought you weren't a candidate for surgery.

    In 2005 I had leg pain but didn't know it was my back(my mom had RA so thought I was getting it plus was a band mom so I carried heavy unifroms, up/down the bleachers, etc) until I just opened a door and all the sudden had excruciating pain. I couldn't sit,stand,sleep, move at all and no meds helped.Once the MRI was done they sent me to the spine dr for surgery. I had a lami/discectomy/etc but within a few weeks the relentless/severe pain was back from my groin down my legs, with tingling/numbness...all the same symptoms you have. The dr told me I would need a fusion but nerves take time to heal,see how it goes and try to wait as long as I could because it's a big surgery.So I lived(actually just existed)trying to do what I could for my family but most of the time I couldn't walk at all and was in bed with heat,meds, miserable,etc., you know exactly what I'm saying.I lived like that for 3 years and ironically, it would have been longer, if I didn't end up with the same unrelenting/excruciating pain where I couldn't sit,stand,lay down, no meds helped and the BR issues arose. The dr saw the MRI and scheduled me for a fusion the next week. He admitted in hindsight, he should have done it right away and apoligized, he realized I had a high tolerance for pain but didn't realize until then how much I had put up with.

    I think you have been trying to survive the daily pain for so long that it's wonderful you have a dr to help you. I do still have some nerve issues and some pain but it is so much more tolerable than before. Yes, I would do it again in a heartbeat. I dread knowing the recovery now.When there is a next time(he's told me there will be) I hope to not wait too long and have surgery before the unrelenting excruciating pain strikes. But back to you my friend, since the tests say you probably don't have permanent nerve damage I'm hopeful you are going to be going to feel more than 50% better! But any reduction in pain will make it worth it, right? I know the next few weeks will be unbearable as you try to cut back on the meds. Boy, if it gets unbearable try to reschedule surgery to get it over with! I'll keeo you in my daily thoughts and prayers.

  • I am so glad to hear that you may finally get some relief.

    I am just as guilty(probably more so) of not being here much lately. I have been going through my own personal hell and have just not had the time to be here.

    So don't feel bad or guilty when you have issues to deal with and are not able to be here as much as you would like to.

    I think that it is understandable that sometimes we just have to take the time to deal with life.

    Good luck and keep us posted (when you can).
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,732
    I just wrote a post to your thread and it went poof! to much of that happening to me lately!
    I've been following you posts for a log time now. and I'm happy that the mystery has been removed for you. The 50 % will be huge. And possibly more.
    I'm really sorry hubby had to get hurt to see the light. But glad he has more compassion now. I just had an other fusion and I had a verry short time to cut back on my meds. It is hard when your suffering pain like that. I just hope this answers all of your prayers. And the recovery turns out to be shorter than they say. I think that often they try to give you the worst case scenario.
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • Kathy, Your situation does sound exactly like mine especially the part where you mention just trying to exist. That's where I am now. Your situation is inspiration and gives me more hope.

    I'm glad that he changed his mind and I'm very confident that I found the right surgeon. His asst said to me yesterday that he goes thru the patients films all the time and may come in one morning and say call so and so up and have them come in. I was very surprised when they didn't hesitate to have me come in 1wk before my regular appt.

    I think I may ask to have surgery date bumped up. I'm just trying to decide if I want to be in recovery during easter or be like I am now. Either way I will be suffering some sort of pain. I think I will make my final decision on Monday.

    It also depends on how this weening off meds goes. He wants me to atleast try to get off the mscontin just so my recovery will be easier cuz the pain meds will be more affective. I don't know if 1 months is really long enough to ween off that much. I do have a very high tolerance to pain meds so I'm afraid recovery is going to be extra tough for me. Plus even though I've lost weight, I still have another 75-80 to go so that's considered obese at this point.

    Jim I know that you have kept up with my history and I really appreciate that. I very lucky to have such a wonderful support group. I talk to the nurses and neurosurgeon and any other docs I come across for my back issues about this site and tell them they should refer their patients to this site. I was originally referred to this site by my 1st surgeon but didn't realize it. That's where he got the info on the ADR and I was going thru paperwork one day and see spinehealth was the site he printed it from.

  • I'm sorry to hear your husband has developed back problems, but at least it will make your life a bit easier. Hopefully he will be more understanding now of your issues.

    I think you'll find it is hard to wait now that you've made up your mind to have surgery.

  • I'm so glad that you now have hope that this surgery will be able to sort out your problems.

    I'll be praying for you, both while you are waiting and also during surgery and the recovery afterwards.

    My surgery is next Friday. It is my first surgery, so feels a bit like doing a bungee jump!! (No, I haven't done one) I don't quite know what to expect, but feel quite well prepared. This site is so good for informing us, and for emotional support too.
    Thanks to all for being so caring and supportive. :D
  • In some ways I'm happy that you're going to have revision surgery and hopefully you'll get that 50% ++ reduction in pain eventually. You've got a light at the end of the tunnel now.

    It's going to be sooooooooo hard weaning yourself off some of the Oxycontin, and I hope you'll be alright.

    I didn't realize that ALIF plates could move and so I'll be extra careful now that I've stepped up the exercise.

    Here's a big hug.


    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
  • Nobody wants to hear that they need surgery, but it is such a relief to know that finally there is light at the end of the tunnel.
    So sorry to hear that your husband has spine problems now as well, but at the same time how wonderful is it for you that he has a better understanding of your situation and is much more sensitive to what you are going through?
    I will keep you and your family in my prayers.
  • SpineAZSpineAZ WiscPosts: 1,084
    sounds like you have been through SO much. I wish you the best for your upcoming surgery!
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • Ming, so sorry that you are in so much pain, and have had all these issues. I am glad to hear that it sounds like you have a top surgeon, and too it is a good fit for you - best part, he seems to KNOW what is going on, and how to fix it! I will continue to keep you in my thoughts, and send positive energy your way!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Michelle, I am sorry you are going through so much. I too suffered long before my fusion, so, I understand what you are going through waiting for the revision. I also know about the financial loss. It is almost as hard to recover from that as the surgery. I have followed your posts a lot and you are kind to everyone. And give great advice. I hope your recovery is faster than expected.

    Hugs Gently,
  • How are you? I might have missed another post so forgive me, but did you decide to move your surgery date up or try try to make it to the date you set? I hope you are doing ok. I know you are miserable but hopefully you can see the light at the end of the tunnel now! I think it will be nice to be recovering with daylight savings time and nicer weather.

    I hope your husband is feeling better. I'm sure he has realized how strong you are now and how much it takes to get through a day.

    My husband and I are quite a pair, limpy and gimpy, since he started having back pain a few months after my surgery. He actually went to PT the same time I did! He's at the beginning of his journey with the MRI revealing issues at L1-2 but his L5-S1 is his main problem.He had 2 epidurals and was feeling relief, then right after the 3rd epidural he let his OCD take over when he lifted the couch to put the coaster back under the leg instead of waiting for help....another story for another post! LOL!

    Take care and keep us posted. I'll try to check in more!
  • What am I gonna do with you girlie? First I'm going to send you a huge but gentle cyber hug.. >:D< >:D< >:D< I'm sorry about all of this and I hope that this fusion will alleviate your pain and suffering. I can't believe what happened to Hubby..how unfortunate! Both of you need help now and right now you must hold on to each other in this journey b/c only together can you both get by. How are the girls? How are they dealing with both of you in pain? Kids are resilient and adjust really well so don't worry too much. They can also pitch in and help out in little ways too. I'm so worried about you Michelle but I know that you will come out ahead because you are a strong woman and you'll do whatever it takes. Please let us know how we can help you...we're all behind you and we pray that you will be okay. Hugs, Meydey
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