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Old 04-23-2005, 09:38 PM   #1
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gmonsterfrog HB User
Post My situation and need advice please!! :)

My first post about my situation, a bit long, but who's story isn't huh? For me my back pain started way back in the early 90's when I used to work for handicapped people independently, (personal care) so there was a lot of lifting involved, among other things. I was there for about 8 years. I was young (late teens when I started there) and instead of doing things the right way and use the lifts (for the ppl who had them) I used my body Young and dumb I call myself. Through all the back pain I had I was able to tolerate it. A couple of things I would do were to lay on the floor, crack my back and almost always wore a back belt after about 2 yrs. I saw an Ortho back then and he only took xrays and gave me cortisone shots while I was with him. 2 shots in total. The only meds were anti-inflammatories - Vioxx. Didn't help me.
I have done many labor intense jobs, lifting, bending, receptionist, owning homes which needed lots of TLC, etc.
What pushed my back over the top was when we build a ramp for a friend who actually was from where I worked at, there was dew on the ramp one night and I was not paying attention. I was walking out to the car and slid and fell right on my behind and hit my arm and head also. That's where my real problems started. After that I was just about bedridden. I couldn't do anything around the house. This happened about November of 03, I was in surgery in May of 04. I don't feel the surgery helped me much at all. I am able to get around a little more but I am still in bed most of my day. The Dr. is now talking about a fusion. And this operation is much more complicated so he wouldn't feel comfortable doing it for me. The buldging starts at L2-3 and gets worse at it goes down to L5-S1. After my surgery he told me this disk was ruptured. My latest MRI shows as if nothing was done during surgery, maybe it's my eyes but...., on paper it sounds as if he did a lot.
I have problems with sitting, walking, (when I walk at times my left leg will just give out), driving, bending and lifting, coughing and sneezing also hurts.
My list of procedures to name a few:
MRI of the brain
multiple MRI's of my back
EMG for my numbness in the left side of my body
Bilateral L5-S1 decompression, and diskectomy on the left side L5-S1
Physical therapy before and after surgery
Epidurals - 3

As for medication I have been on Vicoden ES for about a year and a half now. I've been asking for something else because I think my body is becoming immune to this med, he did try to put me on Oxycontin, that was absolutely horrible for me. I got the worst headaches/migranes that lasted all day and night. Went back to Vicoden. I've asked what else there is but I'm not getting a good responce from him. He sent me to a PM Dr. and his suggestions are 1. surgery, 2. epidural, or 3. medication. But does not recommend medication because I am young. I am actually going to ask if I can go see another RM Dr. at my next app. I haven't mentioned my age yet, I am only 30. Scary thought of my road ahead of me at this point. I've had problems with anxiety attacks and nervousness. Have also been on Paxil and Xanax for that, no longer on Paxil, I stopped myself. I've lived with pain for years and I feel now that I no longer can. It is truely unbearable. I am thankful my Dr. gives me the Vicoden because my prior wouldn't even send me for an MRI, he told me "your fine, your young". If I only did get one that long ago, just maybe things wouldn't have gotten out of control the way they are.
Other meds I've tried, probably more but can't remember:
Neurontin 600MG
Vioxx
Celebrex
Naprosyn
Darvocet
Valium

Another problem-due to my back? I'm not sure.
Have had lots of headaches, neck pain, facial pain and numbness, left sided arm mostly pain and numbness. For this we've done xrays for the jaw, Duplex Carotid Doppler, EMG, c-spine MRI. And nothing has been found. Having problems finding comfort from the TMJ as well. If it is TMJ, I say yes, Dr's say no.

What I was wondering was if anyone can suggest how I go about asking for different meds, and if anyone can suggest something, I would greatly appreciate it. I will be visiting my Dr. on the 27th. I've been reading through these posts and I've noticed ppl have been having luck with the duragesic patch. I'm wondering if this is something good for me.

Thanks for letting me vent. I am truely glad I found this place. Lots of good information, thanks to all of you!!! Mary
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Old 04-24-2005, 12:12 AM   #2
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Join Date: Mar 2005
Posts: 116
Read66 HB User
Re: My situation and need advice please!! :)

Wow you have been through alot. You have come to a great place. There is lots of valuable info to be gained. I am truely sorry for all the pain you have endured. The most I can say is Second, third and forth opinion if needed. I am scheduled for fusion on May twelve for L4-5, and then on to my neck later on. I know how much pain I am in just from that. I can't imagine what you live with day in and day out. Stay strong, and keep looking for a doc that will HEAR what you are telling them

As for pain management. A good PM doc does and tries multiple things until they find what helps your leval of pain. My PM has me on MS Contin (morphine) 3x aday. I started with 2 a day for a month and went to 3 when that did not do enough. I see him once a month to evaluate. He would have gone to 4 aday he said if I had needed it. But three was enough. Something else he told me was not to miss a dose. Keep the meds in my system to stay on top of the pain. Don't skip just because I may not hurt as bad at that time. Has helped sooo much. Still have pain all the time, but is more barable.
Find a PM that will work with you to find which combination of meds will help you until you decide on surgery.

Good luck, stay strong and keep coming back to let us know how your doing or just to vent.
Barb

 
Old 04-24-2005, 12:27 PM   #3
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Join Date: Nov 2004
Posts: 30
bback HB User
Re: My situation and need advice please!! :)

Hey Mary, Im sorry your having so much trouble with your back. I really feel for you. It sounds like a broken record of myself. I too am in my early 30s and am on vicoden ES. Im just waiting on my second fusion and third overall in 15 months. My first was at L4-L5 and now L5-S1 has failed and L3-L4 is causing problems also as indicated in my discogram. My neuro is going to connect all 3 with 2 rods and 8 screws. I first hurt my back almost 3 years ago and tried everything else to avoid these surgeries but nothing worked. I never ever went to a doctor until I hurt my back. I ran in 5ks, golfed, played tennis and was a real fitness buff. Now I go from heat to ice, and from bed to the couch just to get buy till my fusion in a couple of weeks. Enough about me, if you are not happy with your PM doc keep looking until you find one who you are 100% comfortable with. Thats what I did. Good luck and try to stay positive.

Last edited by bback; 04-24-2005 at 12:33 PM.

 
Old 04-24-2005, 12:45 PM   #4
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Join Date: Apr 2004
Location: Fl
Posts: 571
Bionicwan HB User
Re: My situation and need advice please!! :)


Hi Mary -

So glad you've found the board. You'll see many people here in the same boat as you and sadly some are even younger than you!

You've indeed been through a lot ~ and I'm sorry that all of your problems have led you here. While our problems, symptoms and diagnosis are different we're all the same in that we're IN PAIN.


Read is 100% right in that a GOOD & reputable PM doc will continue different meds and NOT stop until YOU advise him that your pain is at a manageable level.

What strength Vicoden do they have you on & how often?

While many get relief with the Oxy - I had the same results as you, couldn't take it.
When you switched from the Vicoden to try the Oxy, did you stop the Vicoden all together? if so it's possible being on it a year & a half, your migraines could have came from physical withdrawal of the Vicoden? Of course I'm not saying that's what caused them, but it could have. The oxy's just made me ugly mean & nasty.


While 30 is young to have such issues with your spine I hardly think that's a reason NOT to give you medication to help with your pain?....I would see another Dr until you make a decision as to proceeding with surgery or not.

Do you also have DDD? Often if you do it's quite common for the disc to degenerate & or herniate further after decompression or a lami.
At least that's what happened to me after mine.

As for the TMJ, I have it too. I once read an article that stated TMJ and DDD go hand in hand - something about the deterioration of cartillage? unsure if it's a fact but I wonder....I don't have it bad enough to consider surgery for it and if mine flairs up I usually take a valium and apply warm compresses and it settles now - my stepdaughter had the sx for it (she's only 21) and 6mo after her sx her jaw was popping out again.

as far as "how to ask" for more medicine.

Don't ask TELL THE DR basically, exactly what you've shared with us in this post!!

Tell him your pain has become UNbearable and your not yet ready to commit to fusion.
TELL THEM you need help.
IF they choose not to listen or help you, then YOU keep looking for a Dr who will!!

Please keep us posted
and again, we're ALL glad your here
BionicWitch

Last edited by Bionicwan; 04-24-2005 at 12:50 PM.

 
Old 04-24-2005, 04:08 PM   #5
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Join Date: Jun 2003
Location: fl
Posts: 654
cardinal HB User
Re: My situation and need advice please!! :)

Hi Mary, oh boy can I relate. I just started methadone, and , well not pleased with it. I have tried everything, maybe I give up too fast but after 5 yrs on Paxil, gaining 30lbs and being a "zombie" I got off it. Now after cervical fusion, failed, and lumbar getting worse don't know what to do? I have a back that is basically ddd, osteoarthritis and all discs bulging just about. I've had 4 discs surgery both lumbar and cervical and as of my last mri 4 more were bulging. Waiting for another mri. I want my "senses" so I will slow down when needed. When I take a strong drug I get too "weird" don't like that. So what I am doing is alittle hydro in the am , later I have a few beers, no hard stuff. But I'm not saying booze is the answer! for me, it works, but with a price! its a depressant, not good for one suffering... I am such a type A and can't slow down, although my life has taken a severe turn with tv and my recliner. I am in pain management and my doc is overwhelmed...I am going to do whatever gives me "relief" for now but the issue remains, non fusion and other discs along with nerve issues. All I ask for are the "facts". Once I find exactly where I stand I'll go from there. No accidents in my past, just started failing in my early 20's, why, who knows? I'm without health ins and really suffering so whatever gets me through til my ins kicks in, well, gotta do it. This board is my saving grace, knowing I am not alone. Best wishes,
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Old 04-24-2005, 05:48 PM   #6
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Join Date: Nov 2003
Location: Missouri
Posts: 2,128
carol632 HB User
Re: My situation and need advice please!! :)

Mary, hello...and welcome to the board. I would suggest seeing a different doctor for a second opinion. If your doctor is "uncomfortable" with doing a fusion, then he is not the right doctor. You need one who is much more practiced. Besides, everyone should get a second opinion.

You probably need a new MRI as well. Perhaps other testing such as myelogram or discogram. But I urge you to find another spine specialist, either ortho or neurosurgeon and see what they can do to help you. You should not have to live this way; you should not have to be basically bed-ridden due to improper pain management, either.

I wish you the best and hope you will be here often.

Carol
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2 lami's, 3 fusions
bone spur removal
cerv. fusion, 1 level
morphine pump

 
Old 04-24-2005, 10:11 PM   #7
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Join Date: Nov 2004
Posts: 47
lee6kids HB User
Re: My situation and need advice please!! :)

Another problem-due to my back? I'm not sure.
Have had lots of headaches, neck pain, facial pain and numbness, left sided arm mostly pain and numbness. For this we've done xrays for the jaw, Duplex Carotid Doppler, EMG, c-spine MRI. And nothing has been found. Having problems finding comfort from the TMJ as well. If it is TMJ, I say yes, Dr's say no.


Thanks for letting me vent. I am truely glad I found this place. Lots of good information, thanks to all of you!!! Mary[/QUOTE]

Hi Mary
I too have all those things youve described and have had all the xrays and c spine mri. I had a full back spine recently and I thave a herniated disc t6/7 and the only thing I can put mine down to is that. I am still waiting to see my spine specialist so I am not 100% sure that this is what is causing them.
I use a natural ant-inflammetry cream that I rub around my neck and upper shoulders and arms 3 times a day and it helps a bit. I also take tegratol for the pain. The only thing I have ever taken that takes the headaches away completly is pethadine, but of course that is not prescribed long term because of the addictiveness.
I hope you find some answers soon, I have been like this for 7 years and it takes away from the quality of your life

Best wishes
Lee

 
Old 04-27-2005, 12:00 AM   #8
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Join Date: Apr 2005
Posts: 14
gmonsterfrog HB User
Re: My situation and need advice please!! :)

Hi all!!

This place is very great and welcoming. I appreciate that. I've been reading and reading. There truely is so much info in here. I want to thank everyone who posted and gave me their time and thoughts. Tomorrow is my appointment with my PCP. This is the man who help me with my meds. I am fortunate to have found him, thus far he has helped me as much as possible. I think? He is the man who also sent me to the PM Dr. who said no to the meds. I will ask tomorrow to send me to another PM Dr.

I wanted to ask about an Ortho. He has been my only real back Dr. I did get a second opinion before the surgery but I feel since he's my Dr. for my back and this is where my pain is mainly steming from he should be helping me with my meds? Is this not the case? I'm not sure if I posted this originalIy but about a month after surgery he cut me off totally. I have only gotten the run around from that office and ever since I told the nurse "it's like pulling teeth to get anything from you", meaning the office with helping me with meds, there has been no more. I have read about seeing a spine specialist. I am going to do this. I was also wondering since I had my operation, "Bilateral L5-S1 decompression, and diskectomy on the left side L5-S1", I read about a discetomy? Should I have gotten this also for this surgery or only for the fusion? I am scheduled for the 3rd epi on 5-3-05, I also read some people believe that if it didn't work the 1st time why do it again, my 1st worked for about a month, 2nd nothing, so do any of you agree with a third? And should I ask about steroid injections, or is this the same? I'm reading but am not familiar with everything. Also I was under the impression that when I got the lami, the buldging piece was going to be sort of sliced off and made equal to my spine. My Dr. says no, they just take the piece that's touching. What exactly is the purpose of that? I would assume it will through time just slip out some more and I'd be right back where I was. He is quite strange after surgery I told him it didn't work and he told me there was nothing else he could do for me and I should go to the University that's like 2-3 hours away from me. I can't even drive. He's also done this to me a few times after surgery, we are in the middle of the appointment and I guess when he feels like time is up he'll stand and slowly start backing up towards the door and one time I was actually talking to him while he was in the hall trying to get away. I am one of those people who do go to the Dr.'s with my lists, My mind doesn't seem to remember as much as it used to once before. The reason he told me he wouldn't be comfortable to do another operation on me was because he said it would involve more than one disk. I myself don't have the confidence in him any longer. I've actually told my PCP that's it feels like he did the operation got paid and now it's like whatever, I don't need you anymore! He laughed but it's quite sad. I and people like myself rely on Dr.'s to help us get better and to feel like this just isn't right.

I know I need a new Dr. I did go to another one time and he asked what I wanted of him. I told him and he said I should go back to him because he had his own problems-patients to deal with. It wasn't his job to finish up what another Dr. started. I also live in the woods so I don't have too many options and I've called a few other places and have been told the Dr. won't see me because I've already been operated on? What do you do when you keep getting the door shut in your face?
I'm sort of venting thanks for listening, there will probably be more to come so I hope you don't mind.

[QUOTE]
BionicWitch
What strength Vicoden do they have you on & how often? 750? Not to exeed 6 in a day. Ya right!! I can not function
and actually need something better now. It sucks to say but the vicoden just isn't doing what it's suppose to do anymore.

Do you also have DDD? I forgot to mention that, I've had DDD for years, it's gotten much worse over time, that's when the cortisone shots started. The spaces are black on the MRI and there has also been talk about the surgery with the cages, he said possibly in the near future. [B]Question:[/B] Do you think back then when I received my second and final cort. shot, while I was on the table he hit a nerve. My left leg did this sort of reflex out to the side left kick thing. Could that have also damaged a nerve. I was told that it was normal, by Him.?

When you switched from the Vicoden to try the Oxy, did you stop the Vicoden all together? if so it's possible being on it a year & a half, your migraines could have came from physical withdrawal of the Vicoden? Yes, I do notice withdrawls when I stop taking the vicoden, and I did just stop and switch. I guess it could be a possibility. Maybe I'll ask him when I see him tomorrow. Funny thing is at the time I had an appointment and I brought the meds with me and I told him it's poison to me, he pocketed it. I heard him walking around with the jingles in the pocket. I was thinking of asking for them back. LOL!! THANK YOU BIONICWITCH!!
[/QUOTE]

Thanks to all of you as well!! Maybe they'll be a great breakthrough one day for all of us!! Mary
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Last edited by silverdmd; 04-27-2005 at 12:04 AM.

 
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