Being told it is all in my head!

pylestone · #1 (**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 · #2 (**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 · #3 (**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 · #4 (**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 · #5 (**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