Confused and feels like going in circles.

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rab266

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Well just a bit of general information I had a spinal Fusion T12 to L4 with hardware (three cages, four screws and a rod) I had the surgery done when I was 16 and now I am 24 and having increasing pain and "weird" sensations. My surgery was for a scoliosis correction so I had no pain prior but now I feel as if each day the pain increases.

The Question: I have gone to two Ortho surgeons the first was the one that preformed the original fusion and the second was because i moved away for school and he came recommended by a friend. It seems like each time I go in I get the same response from both of them....I am too young to be having this kind of pain. I didn't think pain levels were age related but apparently the docs do. I digress, the point is I am 8 years out from surgery and I was wondering if anyone else out there experienced more pain as the fusion "aged"

What has been done: I have been on a verity of meRAB but the ones that stuck around was Soma and Vicodin (not taken every day only when needed) I have had a nerve block done but I broke through it only after three days. Apparently my nerve cells adapted to the cortisone. (I'm a bio student and I talked to a cell specialist at my school and that was the only thing he could think that would cause it.)

Vent issue: I feel as if no one else understanRAB the problem, my mom is a doc and always says the patient knows their body best so if one doc does not solve it go to another one. However being as I am too young to have these issues I feel as if the docs are A) not believing me B) think I am there just to get pain meRAB C) usually end up removing me from the equation and just talking to my mom because its the doc to doc thing. As a student at a University I really dont have the money to go around and find a doc and get more test and xrays done. So in the end I just end up living with the pain which some times gets so bad I end up passing out.

So if anyone out there has an old fusion and went through the same thing or even has a bit of advice please let me know. I am going back to the first doc because I will be going home and mystically he had an opening that was not five months from now and I would like to be able to chat about other options than just deal with the pain.

Thank you
RB
 
SounRAB like you're between a rock and a hard place! We lived in a small town for a few years, only 3500 people, and you're right, everyone knew everyone else's business. So much for HIPPA laws!

When I had my first surgery, my mother said, "I know how you feel" as I laid there in a body cast. I asked how she could possibly know, as she'd never had major surgery and never been in even an arm cast, much less a body cast, chin to hips. She got her crocodile tears out and said, nodding 'wisely', "I know!" That just drove me crazy!

As far as the car, I completely agree with the doctor who said that about the low car. It took me a long time to realize what a difference it made, since I was pretty stable for a long time and had cars with standard medium height seats. We got a new car years ago for me, and I loved it for the first week. It was a little Geo Metro. The seat was quite low, and yes, it did put a lot more stress on my back, both getting in and out and while sitting to drive. Then I traded with my husband and got to have the Volkswagen Vanagon. The seats in that were more like chairs, as they were so much higher. I could drive in that for hours without putting extra stress on my back. Too bad it finally died! (But my hubby still has the Geo and loves it.) When we had to get another car for me, I think we tried about 30 models looking for the one that would put the least amount of stress on my back. The dealerships were very understanding and let us take the cars out for a good 1/2 hour or more so I could really tell. We ended up with a Honda Odyssey, and it's been pretty good for me. There was another, the Kia, that was good, but my tall kiRAB didn't fit in the back so well. Whenever I have to ride someplace in my husband's car, I'm immediately reminded why we got the Odyssey! It really makes a difference for me to have a higher seat.

You're not alone, and although that won't give you any pain relief, there's something comforting in knowing that there are people out there who do understand. Sooner or later, you'll find a doctor who will help you. Just keep making it clear that you don't want to stay on pain meRAB, that you need them for now, but you want to get to the bottom of it and deal with the root of the problem.

I wish you the best,
Emily
 
As far as the car. I think it makes all the difference in the world and I have not had a fusion but with all my other back problems I find that a SUV or Minivan is the best. I drive a Toyota Rav4 and will not trade it for anything. It has the chair like seats. When out with others I always offer to drive due to my back and I have the handicapped plates. Everyone has come to understand after more than 15 years. If I spend 5-10 mins in my hubby's low car I can't walk. My friend's and family let me drive and they chip in for gas or the parking.
Best Wishes on becoming pain free.
Cindy
 
RB, I feel for you! I am 37, look younger maybe, and got those comments ALL the time- YOU are too YOUNG for back pain. No one took me serious. It took me two years of docs to get some real help and it took me crying in his office and then swearing I was not mental. I think he saw the desperation on my face or something. I swore to him I had no intent of back surgery and did everything to avoid it.

If your mom is a doc and gets into conversations with your doc and you are 24 years old, I would suggest going alone. I think you would get to ask more questions for yourself, and have them explain more to you.

If you are in the medical field, than you know, docs are triggered to think by worRAB like weakness, nurabness, increasing pain, etc. try to stay away from worRAB like weird sensations, try to describe it a little better. A doc would have no idea what a wierd sensation is. You might throw off his thinking by saying that.

Pain and back problems are not age related, although for a large part of the population the older you get the more your back will ache and deteriorate. I cant believe though that with your prior history of scoliosis, that they are brushing you off like that. Take me with you, I will lay into them haha.

If your insurance will allow, you might want to see a spine specialist instead of an orthopedic doc. Ask around at the university for the best one in the area.

Hang in there, I know its tough.

I will be praying for you to get some answers!
Jen
 
I know exactly what it is like being told that I am too young for pain. I am 23 years old. The first doctor that told me this was when I was 19 years old. I broke my ankle and after one surgery and a year of recovery I was still in pain. I was told by a second opinion doctor that I was probably going to end up with arthritis in the ankle and need an ankle replacement in the future. But, he could not understand that I was still in pain now. I ended up having another surgery with another doctor and a big part of the pain is gone.

The second incidence is with my back. I was told by a lot of spine surgeons that I was too young to be in that much pain and I had to live with it until I was 40 (not specifially that age) and then I would need a fusion. I ended up having surgery (discectimy) and was pain free for four months. I am now in more pain than before and it keeps getting worst. We are trying to wait for a fusion (because of my age again), but I do not think that will happen.

There are too many doctors that think that young people can't be in pain.
 
That's just shameful that the doctors tell you that you're too young to be in pain. Just curious, did your mom stick up for you and push for answers? I wonder if they're just clueless as to the source of your pain, and that's why they're brushing you off.

I had a T4-L4 fusion as a teenager. Mine was different from yours, though, as I had a very severe scoliosis and had quite a lot of pain from it. I still had pain after the surgery, too, but it remained stable for a long time. In my early 40's I developed osteoporosis and my spine started breaking down seriously, causing excrutiating pain. I ended up having another fusion to fuse the remaining segments down to the sacrum. But that's my story. That doesn't mean it will happen to you. I have a weird back! My doctors had never seen one like mine before.

I would say that when you see your original surgeon, try not to be emotional. Be factual, try to describe your pain in terms like "stabbing, aching, burning, sharp, constant, dull," etc. Tell him you understand that it's unusual for a person your age to be having this pain, but you must be the exception to the rule because you ARE having pain. Let him see your concern and your pain in your face, but let him also see that you're an adult who is there to have a conversation about what the two of you as a team can figure out about your back. Tell him that you don't want to stay on pain meRAB forever, that you want to get to the cause of the problem and deal with it.

I agree that it's probably time to not take mom with you, since she hasn't seemed to really be of much help.

Let us know what happens, and don't give up!
Emily
 
RB:

I had my lurabar fusion in my early 20's and I always got the "you are too young for this". The odd thing is now that I am 41 I find all medical personnel say "I can see why you'd have so much pain". So now they see it - until I hit my late 30's it seemed like no one understood.
 
Emily~ I can understand the weird spine, I had the rarest type of scoliosis at the time only about 1% of all cases are that of mine and then even less end up in surgery. So I can understand that the docs are in unfamiliar territory. By weird sensations I have tried to explain them with the stabbing pain the best I came up with is a dull serrated knife attempting to cut through my spine :)
Jen and Emily~With regarRAB to my mom its hard to remove her completely from the situation because she is considered my Primary Care Physician even though our I have a different PCP on the paperwork. So it comes down to the whole small town thing where we are good family frienRAB with my PCP and he gets the reports from my spine doc (which is the second doc who only specializes in spines.) So of course it gets back to my mom and then from there its a viscous cycle. But I am used to it by now. She is not even in the same city and yet she knows more about the game plan than I do.
However I would like to thank both of you for letting me know that I am not the only one that is having issues. I will keep at it because I don"t want to end up on pain meRAB the rest of my life and I would like to make it as comfortable as I can get.
On a side note I was just wondering if either of you can help with another slitley related question. Its kinda silly but my origonal doc mentioned that some of my issues may be coming from the fact that I drive a low car and I put stress on my discs when I get in and out of it. I really didn't think that could do it, but I would like to know from fellow fusions if there is any truth in his statement or if he is just grasping at straws?
 
Thank you all for the help on the car question, I guess it is time to trade in the car for something hire or at least better seats. I hope that I can find it quickly or I might just steal my daRAB truck that has the heated seats in it :) (Which for everyone with spine or hip problems should look into because they are life savors on long drives)
As to the young question I guess I am just going to have to take a firm stance and play the game for a little while. Eventually the problem will be solved and I would like to again thank you all and any other suggestions are welcomed.

RB:D
 
Oh I forgot Emily no she did not stick up for me she has this idea that it is mind over matter. She can understand the pain because 6 years ago she had a mastectomy done but when we argue about it I tell her she understanRAB the tip of the iceberg. My pain is in the bone where hers is in the muscle structure. So we have just agreed until she gets a fusion and i get a mastectomy we will never agree on it. :)
Also it sometimes according to my dad is the clash of titians, the old doc versus the future doc (2 yrs away) so as one could imagine it is not just a yelling match :jester:its a composition of wits.
 
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