Being told it is all in my head!

pylestone · #1 (**permalink**) 06-26-2010, 06:07 PM

I was in a car accident in 2002, I think I had a laminectomy in Oct 2003 at the L5S1. I had on and off pain that I could handle up until Nov 2008 where I had a fusion of the L5S1 with flex rods, I keep having problems doctor did a MRI found that the disk above it was now bulging, she did nothing but sent me to a pain doctor that sent me to another doctor that ordered a diskogram that came back positive, I changed surgeons at that time because I lost faith in my first one for not listening. I now have a fusion of the L5S1 L4 without flex rods, I have been is so much pain at times I do not get out of bed to this day! All MRI with dye and myelogram with CT say there is nothing there, Dr is not telling me it is all in my head! Well let me say not being able to get out of a tanning bed and the pain I felt from the myelogram was real in fact the worst I have ever felt I just want someone to find out what is going on and give me my life back I am only 30! Someone please help!!!

Kelly from Ohio

mmglobal · #2 (**permalink**) 06-27-2010, 01:14 AM

Is your fusion solid and in a good configuration?

mmglobal · #3 (**permalink**) 06-27-2010, 01:15 AM

back pain % compared to leg pain?

dshobbies · #4 (**permalink**) 06-27-2010, 07:00 PM

Welcome Kelly,

You are not the first person who has had a doctor tell them their pain is in their head. We hear you and understand. Unfortunately and depending on your insurance, you need to keep looking for a doctor until you find one who believes you.

Perhaps someone on this forum can recommend a doctor in Ohio. If not, are you willing to travel? Also, curious if your doctor told you of other options instead of a fusion?

I'm sorry you find yourself in so much pain. You have learned the hard way that the right doctor is the highest priority.

I wish you much luck, Dale

Keano16 · #5 (**permalink**) 06-27-2010, 07:39 PM

Quote:

Originally Posted by pylestone

I was in a car accident in 2002, I think I had a laminectomy in Oct 2003 at the L5S1. I had on and off pain that I could handle up until Nov 2008 where I had a fusion of the L5S1 with flex rods, I keep having problems doctor did a MRI found that the disk above it was now bulging, she did nothing but sent me to a pain doctor that sent me to another doctor that ordered a diskogram that came back positive, I changed surgeons at that time because I lost faith in my first one for not listening. I now have a fusion of the L5S1 L4 without flex rods, I have been is so much pain at times I do not get out of bed to this day! All MRI with dye and myelogram with CT say there is nothing there, Dr is not telling me it is all in my head! Well let me say not being able to get out of a tanning bed and the pain I felt from the myelogram was real in fact the worst I have ever felt I just want someone to find out what is going on and give me my life back I am only 30! Someone please help!!!

Kelly from Ohio

Hmmm... Sounds so familiar! We were in the same situation.

Get a second opinion ASAP.

Maria · #6 (**permalink**) 06-27-2010, 08:40 PM

Hi Kelly!
I've been told this long ago after my L4 discectomy failed leaving me in horredous pain that I didn't have before my surgery (it was episodic pain and not so diffuse and then became chronic low back and nerve burning pain thru buttocks and bilaterally lower extremites) which lasted strongly for 5 years post 2nd discectomy.

The surgeon who did the surgery didn't say it was all in my head but the buddy OSS he referred me to did!

8 years later I really started actively looking into potential surgery to correct my pain and I had many opinions. In 2000 I was told I should have a 3 level global fusion by several surgeons (I didn't) and in 2003-2005 thanks to Mark M. I got at least 3 more opinions that thought I might be able to have a 2 level ADR (I didn't) and in 2005/6 I was told it would be better to do a fusion at L5S1 and ADR at L4 (still did nothing).

But you see... it wasn't all in my head which I think is more of a statement when a doctor isn't going to take the time to figure it out himself or has no desire to or even to help. That's a good way to get the patient to scoot so to speak/go elsewhere (depending on the doctor says it because if he goes over your films and does a very thorough assessment/exam/diagnostics and then says that along with explaining how pain is processed thru the brain (central nervous system) then I can hear someone saying that to me in that manner but not bluntly and rudely/dismissively.

So what this guy did for you is to "push" you forward into getting a 2nd and maybe 3rd/4th or however many opinions you can get.

Don't settle for what one person tells you and esp. if it's something like that and you are still feeling horredous pain. It's quite possible the pain is truly "in your head" in terms of how pain is processed thru the central nervous system however even then there are medications that can help with that and a Pain Management Specialist could be recommended if there isn't anything obvious that needs surgical attention.

I'm sorry you're in so much pain however for what it's worth I do welcome you to the forum and hope you will find some answers here. Good luck.

ans · #7 (**permalink**) 07-03-2010, 10:59 AM

I second, third what Maria says re: opinions, opinions!

I hate this all in your head bull and if only the doc felt that pain for a few days, right? Of course..

Pls. do so and it's worth traveling to see Mavens in your region imo.

Warm Regards, ans

pylestone · #8 (**permalink**) 07-07-2010, 01:20 AM

Sorry I am just getting back to this they did that myelogram and I was on my back for 5 day leaking fluid and had a bad head ach. I have had two different surgeons now four pain doctors ( One just wanted to keep me Drugged, the other was no longer taking on patients that were on meds ect..) I have great insurance and I am willing to travel out of Ohio, if I can be lead to the right Dr. As for pain in my legs compared to my back, my lower back has more pain but when I started PT I started getting leg pain again some of it going to my feet and I have never had that. My lower back is so bad that I wake up around 4 am take pain meds so that I can get up around 10 am, I have to have that first wake up and go back to sleep or it is really bad! As for in the head thing it has been explained to me and I can tell when I am having that kind of pain because my whole body aches and I cannot get enough meds or Benadryl to put me to sleep fast enough!! Those are the nights that I just what to ends this whole pain cycle, I am truly blesses to have a wonderful husband and 2 daughters that get me through those bad nights. Sorry I am just going on and on I just want my life back.

Crystal33 · #9 (**permalink**) 07-07-2010, 05:08 AM

I'm no doctor, but maybe some nerves were treated too harshly during the recent operation, but will slowly recover and settle with time. If one month is better than the previous month, would be a good sign. Our bodies try to fix things and reduce pain, often with success. With spine injuries getting your life back in the short term is often not a reality, even in the long term on occasion.

dridobits · #10 (**permalink**) 07-08-2010, 08:30 PM

I'm so sorry you are going through this! I am in agreement with others on getting more opinions. I probably had 20 opinions in a ten year period. I would get in touch with the top notch guys.

As for who is top notch, we all have our different ideas but Global Networking I think might be a great way to go. I hope this isn't considered advertising but on my journey I really got some great ideas and advice even tho in the end I did stuff locally. They can get all your info and do so much of the leg work on finding someone who is top notch!!!!!

I think most of us have been through the whole "gaslight" thing where docs try to make us think we are crazy. Keep posting, we are here for you.

pylestone · #11 (**permalink**) 07-13-2010, 01:46 PM

Just called the Dr I hope I do not get brushed off by his staff again. When they did the myelogram the found a bone spur and one of my screws are already backing out but the bone spur is not on anything because they made a wide opening when they fused me and they say it does not look as if the screw is on a nerve so, the guy reading the CT said that he is putting it as unfounded, he did tell me that I should get a MRI with contrast, I just had one of those about 2 months before this and it showed nothing not even the screw, I am so confused! I have been to the Cleveland Clinic but they are the ones that told me that I did not need this last surgery even though you could see that the disk was herniated, the person was a non-surgical Dr not sure if that matters. Again if anyone know any Dr that are willing to look over records talk with me or see me let me know my Kids deserve a mom again that can do things like I did before!! We went to an old flour mill yesterday and by it was the Little Mimi River with a trail, I could walk the flat one but had to stay back because on had stairs, it killed me not to go but I know my limits and I will really be no go if I am in crazy pain but I am not sure which was hurting more my heart or my back? They did get to see it my husband took them down but we did that stuff a as a family, and to see the faces of my children when they see new things still amazes me like the day they were born funny thing is, one is 13 and one is 7!

dshobbies · #12 (**permalink**) 07-13-2010, 04:11 PM

If you're able and willing to travel, I'd recommend Dr. Regan in Los Angeles. There's also a chance, if you can digitalize your films, Dr. R can view them on the internet with a phone consultation. If nothing else, it will save you the plane fare. Please contact Mark at GPN Artificial Disc Replacement ADR for help with this. He has helped many of us and for me, I wouldn't be where I am today without him.

There's also Dr. Baumbach in Germany who is an absolute expert diagnostician, however I'd start with Dr. R.

Living with pain is a very different type of life than most people are aware of. I hope you can find the relief you so need.

Dale