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Old 01-29-2010, 02:38 PM   #1
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Is There A Normal Again?

Hi everyone, I am a 53 year old male who in the last 8-10 months has taken the term “falling apart” and turned it into a nightmare. I've been dealing with DDD since the 2000. I've worked hard my entire life and very seldom ever missed a day of work. Aches and pains were never an option for me. I knew I had to work for living and I accessed my pain as a fact of life. But this nerve pain is a totally different animal. In June of 2000, I had the typical sciatic leg and low back pain in my right leg. I went through the normal bureaucracy that doctors and insurance companies puts one through. At the end of a year dealing with it, my then NS told me that it wasn't bad enough to operate and to live with it until I couldn't stand it anymore and then come back, see him and he would then fix it for me. In the Spring of 2009 it really started to effect my normal living. At the same time, I started to notice two spots on both shoulders about 3 inches down my arms, that felt like someone was basically holding a cigarette to it and also my left shoulder (not my dominant side) was feeling really weird and started getting weaker with any kind of activity at chest high or higher. This wasn't causing me great concern at the time, but now know the significants of it all. The right sciatic leg and lower back pain was my main concern and the most debilitating. Summer was coming and my summers are spent moving heavy furniture, using floor scrubbing machines and lots of floor mopping and waxing. My GP finally ordered an MRI for my lumbar in May of 09 and found my problem. He forwarded me to the NS I had seen in 2000. At this point I am literally pulling my hair out with the sciatic leg pain. I asked my GP and my NS both about whether I should be working or not, neither, once ever told me not to work. My first visit to the NS and all he wanted to do was the same old bull, PT and steroid shots . I told him what he told me 9 years ago and he basically called me a liar. He ordered steroid shots and later I told him I would not return to see him and found me another NS. The first visit to the new NS and one look at my MRI and he told me surgery was probably only way I could get any kind of relief. Again, he never once told me, not to work and this was the middle of June. I worked right up to the day before surgery. I did my summer work and actually finished it before school started. I had my lumbar surgery on July 21, 2009 (Micro Lumbar Discectomy Rt L4-5). I still have a lot of pain and weakness in my right leg and I can't stay on my feet for more than an hour at a time. Anyways, I got through that and then about a week into my recovery I started noticing my left shoulder was really giving me trouble and it just kept getting worse. A week before I was to return to work. I seen an orthopedic surgeon for my shoulder. Thinking this was solely a shoulder problem. I started the PT and also went back to work, again no one told me not to work. After a week of PT, I was back in his office and had a steroid shot in my shoulder and an MRI scheduled. The shot did nothing for the shoulder. By now the burning and pain was getting unbearable and I had a touch of TMJ for some reason. After the MRI he told me I had several problems in there but really couldn't tell me anything until he got a scope in there. I scheduled surgery and on October 8, 2009, I had a shoulder decompression, several bone spurs removed and my clavical bone scraped. When I woke from surgery I noticed a numb spot from just behind my thumb, to my elbow and it degenerated from there to my shoulder and my TMJ was unbearable. I could not eat anything solid and not able to use the arm or shoulder as it was in a sling, I just thought it was part of the process. In the mean time my right shoulder started the burning and pain the left shoulder had. My visit back with OS and I alerted him of what was happening. He suggested that his surgery would in no way cause this and started me in PT in hopes of it resolving itself. It didn't, by now though the pain did calm down somewhat, probably because I was using lots of pain medication. I finished the 3 week PT. The last day my left arm and both shoulders were really getting the best of me. When I returned for my final visit to the OS he did an XR and finally conceded to an MRI of cervical spine. In the mean time I seen a local ENT doctor and had a steroid injection in my jaw. Still couldn't eat. Upon receipt of my MRI findings the OS immediately sent me to have steroid injections to the c-spine and told me I had a very narrow congenital spine(Spinal Stenosis). The first shot did nothing and the second was the same. By this time my nerve pain was getting to terrible. The numb spot in my left arm and both shoulders were so sensitive, I couldn't even wear a heavy coat or shirt because it would irritate the nerve endings so bad. I could not do any kind of activity that required my arms or shoulders because the pain would haunt me later. Finally my OS sent me back to my NS. He at first wanted to try other things, shots, PT and the rest. I told him I had did all that and I wanted some kind of relief before I go completely nuts with this never ending burning, tingling and pain. He agreed and I had my third surgery (ACDF C5-6 and C6-7) on December 23, 2009. I'm right at 5 weeks post-op and I've really seen little or no relief. I have had afternoons that I sit and cry because I feel so terrible. My TMJ has finally calmed down now and I am eating more, but I really have no appetite anymore. Mornings are the worst and pain medication only dulls pain enough to at least give me a feeling that I have some kind control of it all. I had been taking Hydrocodone 10/500 up until my last NS follow up and he gave me a prescription for Darvocet 100/650. The Darvocet don't seem to help as much as the Hydrocodone. I'm currently taking 2 on good days and as many as 4 on bad ones. Where as the Hydrocodone, I could almost always get by on 2 and sometimes one a day. Is there any reason why I can't ask for a prescription change? The Darvocet also make me very weak, yucky and drowsy feeling. I mean, I feel like I can't even function with them. Getting to the point of my post. I have asked on several occasions, to both my OS and NS, will I ever be able to do the kind of work anymore or not? I can't get a straight answer from anyone and I'm running out of options. I worked about 4 weeks after my first surgery in July and am really beginning to wonder if I'll ever work again. I have exhausted all my sick time and vacation days trying to get through all this. I think sometimes, I am literally going nuts because of it all and I wonder if normal is ever going to happen again. I do nothing but sit in my recliner because with any kind of activity, I pay for later with pain and burning. I feel nothing has been accomplished with 3 surgeries in 6 months. I'm back to square one with no relief in sight. Is there any hope for this kind of stuff or do we just learn to live with it? Thanks for listening and I have enjoyed reading all your post here.

Cervical Spine

C2/3: Unremarkable

C3/4: Small broad-based posterior disc osteophyte complex eccentric to right causing mild central canal stenosis and mild to moderate right neural foraminal stenosis.

C4/5: Broad based posterior disc osteophyte complex slightly eccentric to the right causing mild central canal stenosis and mild to moderate bineural foraminal stenosis

C5/6: Broad based posterior disc osteophyte complex eccentric to right causing mild central canal stenosis and moderate right greater than left neural foraminal stenosis

C6/7: Broad based posterior disc osteophyte complex which causes no significant central canal stenosis, but cause mild right greater than left neural foraminal stenosis

C7/T1: Unremarkable

Impression:
Multilevel degenerative changes most pronounced at C3/4 through C6/7 levels where there are multiple posterior disc osteophyte complexes causing varying degrees of central canal stenosis and right greater than left neural foraminal stenosis as detailed above.

Lumbar Spine

L1-2: Mild diffuse disk bulge present. There is a mild to moderate bilateral neural foraminal narrowing

L2-3: Mild diffuse disk bulge present. There is a mild bilateral neural foraminal narrowing

L3-4: Mild diffuse disk bulge present. There is a mild bilateral neural foraminal narrowing

L4-5: Mild diffuse disk bulge present. There is a moderate right posterolateral disk protrusion present. There is a moderate to high-grade right L4-5 neural foraminal narrowing. Moderate compromise of the right lateral recess is present

Impression:
Moderate right posterolateral disk protrusion L4-5 with moderate right lateral recess stenosis and moderate to high grade right L4-5 neural foraminal narrowing. Please correlate with distribution of any radicular symptoms

Last edited by justme53; 01-29-2010 at 02:44 PM.

 
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Old 01-30-2010, 05:20 AM   #2
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Re: Is There A Normal Again?

First let me say Im so sorry you are suffering so. Your post brought back memories.
Even though meds are only a bandaide & speaking for myself I strongly dislike taking them, they allow me some kind of life. You are on very weak meds for spinal problems. I dont see any mention of pain management. If your not in PM get a good pain management doctor. A good one will treat the pain & keep looking for causes & long term solutions if there are any. They can give you some life back. If you are in PM get a new one.

I went a couple yrs. without one & felt exactly as you do now, it was a nightmare & no life. I was left wondering is this it? Anyone who has been in pain for as long as you have should be in with a PM. They can attempt other methods of pain control & due further testing when needed.
I have cervical & lumbar problems to & what you take would not do one thing for me. No wonder you in such pain. There are other types of meds also & treatments you should know about. Im wondering why your current doctor has not recommended you to Pain management? Crazy that your suffering so.
Its not always easy finding a good PM but it sure can be worth it. You have evidence of your injuries so getting help with a PM should not be difficult.
Remember theres more then just pain meds that can be tried.
Please dont waste anymore of your life, you deserve much better care. Ask about a good PM. I sure wish I would have not put it off. I went through the exact same, shoulder decompression (no fun) only to find i had cervical problems causing alot of my pain & problems. I have the TMJ to & I find it has become much worse with the chronic pain, I grind & clench when my pain is up. Its better all the way around if my pains under control. I now have a mouth full of chipped teeth to show for my years of pain.
Good luck & god bless, Sammy

Last edited by sammyo1; 01-30-2010 at 05:27 AM.

 
Old 01-30-2010, 06:22 AM   #3
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Re: Is There A Normal Again?

I agree with what Sammy said and wanted to just add some food for thought. Back in November of 07, my GP referred me to a NS. When I asked around about this NS, I was told by several people that they didn't like him at all. I was then told about a fantastic group of NS, and I wanted to go to one of them. Since you can not make an appointment yourself with a NS, you MUST be referred by a doctor. When I went back to my GP and told him I wanted to be referred to this other doctor, he told me that he had referred me to a good NS, and that was that.

As soon as he made that statement, I stood up and with a loud strong voice I asked him, "who do you think you are telling me that's that? It's my body and I have a right to to see the doctor of my choice. I demand that you change my referral to the doctor of my choice or I will report you to the AMA".

The patients in the lobby heard me and his staff scrambled around trying to quiet me down. I got my referral to the NS of my choice. I had my surgery for a herniated disc (C-5) back in April of 2008. I'm still dealing with neurapathy, but an MRI before and another one after surgery showed a very successful compression release.

My point being, do your homework in search for a good NS in your area and request (demand if needed) an appointment. It's so important to feel good about the NS who needs to preform surgery.

Last edited by islandjohnny; 01-30-2010 at 06:25 AM.

 
Old 01-30-2010, 07:54 AM   #4
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Re: Is There A Normal Again?

Thanks for the advice. I did ask my Orthopedic Surgeon after the shoulder surgery to send me to some kind of pain management facility and he explained to me that the doctor who was to give me my spine epidural shots was a pain management doctor. Alls he was interested in doing was giving me the shots and if they didn't work, to send me on to the NS. He didn't even want to give my second shot after I told him the first did nothing for me, but I told him I was there and I couldn't give up on some kind of relief before the surgical solution. As far as my NS, I picked him myself. My insurance is BCBS and I do not need a referal if the doctor is in the company's PPO services. He is a good doctor, but my opinion of all doctors is pretty dismal. The all herd you in, do their thing and then send you out. I have called my NS twice this week to ask for a medication change. The first time I called, my return call was 24 hours later only to find out I had called the wrong nurse for medication. She transferred me to the right nurse. I left a message Thursday and have yet to receive a return call. This whole experience has been an eye-opener for me. I told my GP over a year ago that there was something going on inside my body and that I was falling apart. He pretty much laughed at me and just kept leading me on for return visit after return visit to suck my insurance. This past year has been pure hell and not one doctor has wanted to willingly give me any pain medication. It was like somebody wanted to pull their teeth. I will be demanding PM at my next NS visit which Feb. 9. Thanks for the input and from now on I will take more control of whats happening .

 
Old 01-30-2010, 01:11 PM   #5
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Re: Is There A Normal Again?

NO! Sorry but I honestly don't think there will ever be "NORMAL" again. I do however hope there will be a "TOLERABLE" again. As for some of the pain you are feeling. Some of it sounds a lot like mine and I was dx with fibromyalgia soon after my cervical laminectomy. Fibro can be caused by trauma. I have read that spine problems is one of the leading causes. You might want to look into it. I hope you don't have it because it is a horrible, painful and incurable illness. I'm sorry you are going through all this. Good Luck and Good Health.

 
Old 01-30-2010, 02:30 PM   #6
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Re: Is There A Normal Again?

How do they DX Fibro? Is it just a matter of how much pain you have and does Fibro effect you everywhere or just certain spots? My most serious pain is my shoulders and my left arm. Right now the rest of it seems petty compared to these areas.

 
Old 01-30-2010, 03:17 PM   #7
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Re: Is There A Normal Again?

Fibro can be hard to DX. There is an 18 pressure points test and if you have 11 of them that hurt to touch is one way to Dx it. Most Dr's will send you for a bunch of blood test to rule out other possibilities. There is a lot of good info on the fibro board and you can research it on line of course.
As far as how it effects you, everyone is different. It can effect you everywhere especially during a flare up. Most of my pain from it is in my legs and feet. As far as your shoulder and arm pain, that probably is due to a cervical disc problem.

Last edited by elle45; 01-30-2010 at 03:20 PM.

 
Old 02-28-2010, 06:12 PM   #8
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Re: Is There A Normal Again?

You've told an absolutely horrific story and my heart goes out to you. I do wish, though, you'd ask for a D3 (not sure of the right terminology) blood test. My pain was nothing compared to yours, but it was there. When I started taking OTC D3, it cleared up in an amazing fashion. If you live somewhere above, say, Georgia, you're not getting the requisite D3 from sunlight from about October through April. D3 actually isn't a vitamin but is a precursor hormone that affects every cell in your body. Cheap, over the counter, non-toxic even in amounts that some docs find alarming (I take 5000 units a day and have never felt better). Check out the vidoe by Michael Horlicks on D3. It can't hurt. Can help, and that's what we all want, right? Right!

 
Old 02-28-2010, 06:32 PM   #9
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Re: Is There A Normal Again?

To follow up, I've had 3 post appointments with my NS. He did a complete blood work-up, full chest, abdomen and pelvic CT. I am a smoker and I think his first thought was some kind of tissue disorder. Everything came back normal. Not one thing out of line and no tissue masses. he wanted to know if my GP knew of my current weight loss, but as I told him, I've been under his care and my Ortho Surgeon for six months now. My pain level had did little to subside and the NS will not concede to signing any LTD papers or anything else for that matter. My daughter was with me on my last visit and she grilled him about what my future holds, but to no avail. I see him again the 7th of April, which is my 180 days off from date. He did tell me that he will order a new MRI then, but until then, he will not make any kind of decision. So I'm still in limbo, still dealing with nerve pain and getting a little crazier ever day. Who knows what's next!!!!

 
Old 03-01-2010, 06:05 AM   #10
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Re: Is There A Normal Again?

Sound like you may need a new doctor.



Quote:
Originally Posted by justme53 View Post
To follow up, I've had 3 post appointments with my NS. He did a complete blood work-up, full chest, abdomen and pelvic CT. I am a smoker and I think his first thought was some kind of tissue disorder. Everything came back normal. Not one thing out of line and no tissue masses. he wanted to know if my GP knew of my current weight loss, but as I told him, I've been under his care and my Ortho Surgeon for six months now. My pain level had did little to subside and the NS will not concede to signing any LTD papers or anything else for that matter. My daughter was with me on my last visit and she grilled him about what my future holds, but to no avail. I see him again the 7th of April, which is my 180 days off from date. He did tell me that he will order a new MRI then, but until then, he will not make any kind of decision. So I'm still in limbo, still dealing with nerve pain and getting a little crazier ever day. Who knows what's next!!!!

 
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