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Old 04-04-2011, 09:35 PM   #1
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Unhappy I'm falling apart, looking for someone to talk to

Hello everyone,

I have been a member for some time now and mostly read the posts and learn. I have a great respect for those of you who have been dealing with this for years and years. I now stand at the threshold of the doorway to cronic pain but can't get a final answer from the doc (great neurosurgeon). I am all out of patience and am wearing thin. I just want to move on with life and hate the toll it's taking on my family.

I'll give you a little background. I had my first surgery in Sept. 2008 in which the did a "dynamic stabilization" of the L2-L3 vertebra and it seemed successfull. The doc used NSpine's Nhance pro rods. I returned to work and was active for three months. I was even off of all pain meds. The pain returned and it was found that I had developed a quickly progressing spondolesthesis of the L2 vertebra. The doc was dumbfounded and had never seen that occur. Ultimately I knew it would have to be fused to prevent it from further going into my spinal canal. That was done in August of 2009. Recovery was much harder and the pain has never gone away. At about 16 months post op they did a CT and found that I had not fused at all. The doc didnt want to give up and gave me a bone growth stimulator. I just had another CT last week. I am now 20 months post op.

My body tells me it is not fused. I still have a lot of pain that gets much worse with activity. Some pain in the legs that seems to be mostly positional dependant and cramping in the calfs. I get a section of my middle back (just left of the spine), that is about the size of a coffee cup saucer, that goes numb and tingles. From what I have read from others it all could be much worse for sure but for me it is enough to ruin my day, activity level and pretty much everything else. I was so hoping for a difinitive answer when the doc's office called with the newest CT results although it would come with more decisions. Would I take a third surgery or just take a medical retirement from work and go into the world of pain management to have a family life again.

I had received the CT results in the mail and understood most of it. The endplates of the vertebra had began to harden. Now I also have more bulging disks (degree unknown) at L4-L5 that was new. I also have an old herniation at L5-S1 that was done in 2005 but was not touched in any of the surgeries. Anyway the nurse called today and all that I got from her was "the doc had seen some growth but it was not "bridging".". He wants to give it MORE TIME. It was my understanding that if fusion did not occurr at two years, that it never would. What are your thoughts?

I am so tired of waiting and hurting. I just want answers and to move on from all of this. The meds that they have me on are not sufficient. I finally got my doc to switch me to a LA med last week. He put me on Oxycontin 20 mg with 5-10 mg oxycodone every six prn. I had been taking 20mg of 10/325 every four prior to this change. When I went to the pharmacy to pick up the new med, I was disappointed, to say the least, to find "OP" printed on the pill. I have read the posts about it and was worried. So far it seems to be working but I still have to take a lot of the IR tablets. I think the 40mg OP is about where I need to be and will communicate that to the doc (tactfully).

Sorry for the long post but I guess that I just need someone to talk to. I CAN NOT speak of this at work. I would be screwed for sure. I have to have the insurance if another surgery is required. I am so tired of waiting for answers and hurting. I have accepted that I will always hurt now but I want it to be a manageable level. A second opinion is in the works. I look forward to all of your comments for sure and hope this turns into a good conversation.

Thanks in advance,
"Joe"

 
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Old 04-05-2011, 07:32 AM   #2
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Re: I'm falling apart, looking for someone to talk to

I'm sorry for all the heartache and pain. It's a miserable life living with pain. I think that right now, you need to be referred to a good PM doctor that will try some different modalities and will work with you to get your pain under control. I'm not sure of your PM knowledge, but you need to be aware that no PM doc will medicate you so that your pain is gone. Their job is to get you to the safest level that allows you to have a vialbe life and to be able to work-if needed.

I am surprised that your surgeon wants to wait...although fusion isn't seen until about 6 months out with full healing at a year. You certainly need to have another opinion on this. And even get two if you aren't pleased with that you hear. That way you will know what your options are-besides pm.

The pain that you have down your leg and across your lower back sure sound like nerve pain. You have a nerve that is being comprimised and that causes your spasms and pain. I am waaayyy too familiar with that. I spent last night for an hour in the bathroom battling that pain. I had shut the door so my hubby could sleep. It's a dark and lonely place we exist in, us pm'ers.

Keep posting-there are wonderful folks here who will chime in and offer suggestions.

 
Old 04-05-2011, 09:45 AM   #3
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Re: I'm falling apart, looking for someone to talk to

Hi. I am so sorry you are going through this. If it were me, I would seek a second opinion, perhaps from an Orthopedic Spine Specialist (not a regular ortho, but one with a fellowship who limits his practice to the neck and back). Fresh "eyes" looking at your tests...the actual films....may see something that has been missed. Or, the doctor may have a different take on what needs to be done.

Certainly, pain management is something to be considered, but I would get that 2nd opinion also. As it sounds like a nerve is being pinched, pm can only treat the symptoms, but cannot release the pinched nerve. As you probably know, the longer a nerve is pinched like that, the more chance of permanent damage.

You might want to post this on the back pain message board as well.

Please stay in touch and let us know how you are doing.

Carol
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Lumbar surgery x 7 over the last 30 years.
cervical fusion...2 levels
medtronic pain pump implanted
Last surgery Oct, 2010, 3 levels

Last edited by maltluver; 04-05-2011 at 09:47 AM. Reason: adding to the response.

 
Old 04-06-2011, 06:44 PM   #4
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Re: I'm falling apart, looking for someone to talk to

Thank you two for replying,

Ibake,

A second opinion is in the works. The unfourtunate thing is that I still have complete trust in my doc. I know that my patience has worn thin but I feel as though he is holding on to a hope that will not materialize. My body tells me it will not fuse and even if it does, I may be relegated to this amount of pain. Not that I am in a rush for a third surgery. Quite frankly, I don't know if I could do it again but there lies the insurance problem. If I loose my job, then there goes my outstanding insurance. My injury is not work comp at this time. There is a question as to weather or not the first surgeries failure was due to work.

As for pain management, I don't expect to ever be pain free. I just hope that pain management will allow me to at least be comfortable enough to be a productive member of my family. I have a four year old little girl and the prospect of spending 70% of the day in bed is not appealing. I just want to be able to push the pain to the rear of my mind for a while.

I hope you are doing better!!

Carol,

I have read MANY of your posts and have seen you recommend an ortho spine surgeon frequently. My doc is a neuro and I'm curious what an ortho doc could do differently or what your experiance was. I guess I'm a bit bittered. When this whole back thing kicked off, I was referred to an ortho for my first consult just after physical therapy was started. He was about as kind as a rock and I left the office livid. I have a mistrust of docs due to the military and my trust is hard earned. I have ALL of my films and they will definatley go with me. I'm worried that he/she will look at my films and say "I'm not touching another doc's work.

Thanks again for both of your responses!!!! To say this whole ordeal has knocked the wind out of my sails would be the understatement of the year. I am having a hard time seeing the bright side of anything right now. Everything is clouded by uncertainty and pain.

 
Old 04-07-2011, 01:36 PM   #5
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Re: I'm falling apart, looking for someone to talk to

I'm sorry you had a bad experience with the ortho you saw. Was he fellowship trained and did he limit his practice to the back and neck only? There is a big difference between an ortho and an ortho spine specialist.

I know that there are wonderful neurosurgeon spine specialists. I just have never had a good experience with any...and I have seen about 4 of them. A neuro was my first surgeon and I was naive, going along with whatever he suggested. I had 2 surgeries in a matter of 3 months and continued having severe pain at which point he told me it was all in my head. I then sought a second opinion and an ortho spine specialist came highly recommended. He was SO different from the neuro. He did a fusion and all my pain was gone. After he retired, I made an appt with another neuro and was treated like I was a cow.

There are exceptions to everything....I just have personally had much better relationships with the 2 ortho spine specialists who have treated me and no relationship with the several neuro's I've seen. I absolutely believe that if you are comfortable with the specialist you have and believe you are in the best hands, then you should stay with him. On the other hand, if you have problems that aren't being addressed to your satisfaction, then another opinion is the way to go. Each of us must make that determination ourselves, and we must be content with the dr. in whom we place our trust.

Wishing you the best.

Carol
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Lumbar surgery x 7 over the last 30 years.
cervical fusion...2 levels
medtronic pain pump implanted
Last surgery Oct, 2010, 3 levels

 
Old 04-08-2011, 09:28 AM   #6
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Re: I'm falling apart, looking for someone to talk to

Carol,
I see that you are in Missouri. Do you know any good ortho spine docs in the KC area.

Thanks,
Joe
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Herniated L5-S1 in 2005
Herniated L2-L3 in 2008
Dynamic stabilization L2-L3 in 2008 (failed-spondylolesthis of L2)
PLIF L2-L3 in 2009
PLIF failed to fuse

 
Old 04-08-2011, 03:57 PM   #7
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Re: I'm falling apart, looking for someone to talk to

Re your meds, as well as the oxycontin and the percacet, there are 2 other (non narcotic, non addictive0 meds that you could add to try and boost the releif you are getting

One is a long acting antiinflamatory painkiller called meloxicam - a singly 15mg tablet once a day gives pain relief equal to taking 2 Advil 4 times a day, without causing stomach irritation or ulcers, it can give a boost to the releif you get from your narcotics.

The second is amitriptyline. A 50mg dose at night can help control pain, and also help you sleep. Best to start off with 12.5mg at night, and slowly work up to 50mg at night over 2 weeks.

Both these drugs have been widely used and are known to be safe and non habit forming, so your doc should be willing to give you a trial if you ask. A month should be enough to see wether they work for you.

Also, you can buy a TENS machine online for about $100, it might be a good investment, to see if that can help control your pain - I brought one for my sister, who has chronic back pain, and she loves it. They dont work for everyone, but the only way you will know is to try.
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Old 04-08-2011, 06:12 PM   #8
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Re: I'm falling apart, looking for someone to talk to

John,
Thank you! I'm willing to try anything at this point. As for the TENS unit, I actually have one. It just doesnt provide much relief. The pain seems to be too deep. It's almost like its coming from the bone itsself and spreads outward. The more active I am, the further outward it goes. Eventually ending up between my shoulder blades with a feeling like I have a knife shoved in. I don't know if that makes any sense.

As for the meds that I am on, they really aren't giving much relief. 20 mg oxyconting (OP) and 5-10mg percocet every six hours. I once saw a physiatrist who recomended Duragesic but I didn't take it at the time due to the narcotic policy with my Neuro. I have a feeling thats where I'll end up. I hope not.

I see my doc on the 27th and have a second opinion scheduled for May 4th. I pray for some answers and not more of the waiting game. The doc viewed my most recent CT and saw that the endplates of the vertebra have hardened but still no bridging of the fusion. He wants to wait longer. I'm already 20 months post op and out of patience. My career hangs in the balance. I know that it's done but I need to hear it from the doc and hopes that he supports my theory of why the firstt surgery failed. If he does, it will make it a work related injury. That would be helpfull for a medical related retirement from my state retirement account. As of right now he could provide no medical reason for why it failed. The first surgery was a "dynamic stabilization" of the L2-L3 vertebra using the NHance pro rod by NSpine which has been bought by Synthes (?) a Swiss company. I could find no information about product failures. All that I could find was that they were recalled from the market recently for what the company said was "packaging integrity issues". However they are no longer selling them.

Sorry John, I'm just searching for an expanation. I'm about out of faith. I have read so many of your posts and you have no idea how much I appreciate your response. I look forward to hearing from you again. I will definately research your suggestions and run them by the doc.

Thanks again and be well my friend.
Joe
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Herniated L5-S1 in 2005
Herniated L2-L3 in 2008
Dynamic stabilization L2-L3 in 2008 (failed-spondylolesthis of L2)
PLIF L2-L3 in 2009
PLIF failed to fuse

 
Old 04-09-2011, 11:41 AM   #9
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Re: I'm falling apart, looking for someone to talk to

I am so sorry you have not had sucess with your fusion. We have very similar stories, however my fusion was somewhat sucessful iin that most of my pain is relieved. It is hell living with pain with no end in sight I have used biofeedback to get through my own pain . It may be something to look into in addition to changing your PM doc. Good luck to you I will say a prayer of hope for you I know how you are feeling I was once there.

< edited >

Last edited by hb-mod; 04-19-2011 at 12:19 AM.

 
Old 04-09-2011, 11:48 AM   #10
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Re: I'm falling apart, looking for someone to talk to

Dove,

It's kinda funny, I was just reading your post in the thread about fusing. I agree with you. It is definately a private hell. The worse thing for me (in addition to the pain) is the uncertainty while waiting for answers. I can feel myself falling into depression.

I have no idea what biofeedback is. Your not the first person to mention it on here though.

Thank you for your input, it is appreciated. I'm glad you are doing better than I am.
"Joe"
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Herniated L5-S1 in 2005
Herniated L2-L3 in 2008
Dynamic stabilization L2-L3 in 2008 (failed-spondylolesthis of L2)
PLIF L2-L3 in 2009
PLIF failed to fuse

 
Old 04-09-2011, 12:25 PM   #11
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Re: I'm falling apart, looking for someone to talk to

Biofeedback is a type of visual imaging but is better explained if you google it. What also worked for me was pretending to not have pain, I know it is childlike thinking but it did get me through some hellish times. I know 2 years is too long to expect fusion to occur I hope you are not a smoker, my doc said if I smoked the fusion is less likely yo take. Additionally I had a growth stimulator 2 days after surgery and still use it daily. Did you have a bone graph? thanks for ur reply. Linda

 
Old 04-10-2011, 03:43 PM   #12
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Re: I'm falling apart, looking for someone to talk to

my heart goes out to you I am so sorry for the pain you are going through. I'm praying that you'll find the help you need. adrienne.

 
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