So what does everyone else do in this situation?

[JMar63]

I am absolutely fed up with this whole entire back ordeal. I have done nothing but wait and wait on someone (whoever that is) to tell me what my future is.  My whole life is going down hill fast. I am afraid that I am going to lose everything that I have worked so hard for. And my poor husband, he didn't ask for any of this. I feel so useless and ANGRY I could just punch something. This nightmare has got to end before I lose everything in my life.  I don't know what to do. I have never felt more useless and more of a burden or more helpless in all of my life. I have gone thru some bad things, but this tops it all. Excuse my language, but It pisses me off!!!!!!!  I hate this and I am tired of being shuffled from one doctor to another. Each one with their own little tests.....while they are making money off of me I am losing everything.  I just want this to stop.  Why did I ever complain about my back. Why didn't I just suck it up and keep going like I always have.  I am so angry I can't stand it. It's not fair.....I want to know what I did in life to have these kinds of things happening to me???????? I hate this. Now I have gone to a neurosurgeon and he tells me there is nothing he can do.  And these so called "educated people" are pretty much telling me that I don't have enough of any one thing wrong to be treated.  It's like I have to prove I hurt.  When asking about going back to work, they ask me if I can.....now why after 2 1/2 months of TESTS ONLY would I be okay now?   Hello...........is anybody there?  Should there not be treatment before making stupid statements like that?  I have had three doctors tell me that I have to decide if I am disabled or not.  Isn't this why they went to medical school?  When I asked the neurosurgeon about work, he said "If you can't work then quit your job".  Hello???  Is anybody listening?
And you know something, above all, my dear sweet husband has said, " If you can't go back to work it's okay"....He keeps me hanging on.

[Laura613]

I had spondylolisthesis (what a word), it is a degenerative slippage of the spine.  I had no idea before the MRI; all I knew was that I was in a lot of pain, my back, my knees, my legs, my feet, even my arms and hands would go numb.  

I was tested for everything - fybromialgia, rheumatoid arthritis, thyroid, liver.  Nothing seemed wrong.  Finally, when I told my doctor I was taking 2 dozen tylenol a day, he freaked, sent me to a great pain doctor who sent me for the MRI.

The slippage was more than 50% and was squeezing my spinal cord sometimes, I guess.  But the funny thing is the spinal surgeon (a neurologist) said that the surgery was called for, but it would probably only be 70% effective for my symptoms.  It was a long road and she didn't seem to recommend it.  I was very busy with two teen boys and a job and a house, and so I continued on in pain.  After thinking about it for 6 months, I went back and said 'do it'.  At that point, I would not leave work for lunch because of the walk to the car.  Also, my 16 year old had gotten his DL which seemed it would help.

I had the surgery last April (1 year ago).  The recovery was long and slow, but a year later, I have no symptoms.  I have a bad foot left over from the surgery and leg cramps, but they are finally starting to get better.  The neurologist said I should be as good as I will get at 2 years post surgery.  I no longer fear the walk to my car for lunch and I am finally starting to think I will enjoy life again.  I still tire out too easily for a day at the zoo or anything like that.  I try to keep all my energy for work and housecleaning, but at least I can do that.  I no longer take naps, which I had started before the surgery, and continued til about a month ago.

My opinion is that back surgery is a huge decision, and the neurologist/spine surgeons want you to make the decision that you can tough it out through the long haul, all the appointments and work to get back.  A full year of recovery, starting by learning to walk again, it was completely debilitating.  They do not recommend it, you have to want it.  You have to prepare and be ready to be down 6 months - no grocery store, no nothing.

But, now I am starting to feel like I am 50 (I'm only 48), rather than like I am 98 and ready to go to the better place.  I have hope for the future and by this time next year, I hope to feel like I am 40 again :)  Good luck!

[JMar63]

Went I went to see the Neurosurgeon, he told me that there was only a 70% chance that it would help. He said I could have the surgery if I wanted to, but he didn't recommend it. It seems that everything I have has been occuring for a long time and I didn't know it. Now the damage is done.  
Also, when I went to my PCP last Monday, he had another doctor come in and go over what it going on with me. He used the term polyneuropathy, which wasn't a term I had heard. From what I read, it seems to be along the same lines of peripheral neuropathy.
He has put me on 75 mg Lyrica twice a day for one week, increasing to 150 mg twice a day for the rest of the month. I have been given 4 mg of Dilaudid and it was prescribed twice a day. Unfortunately, I have been unable to take the pain medecine due to having to drive my husband to work.  He works two cities away. We have found another alternative to that and I will now be taking the Dilaudid three times a day. I have been on the Lyrica for almost a week and cannot tell any difference. Just yesterday I had the nerve pain. My PCP is concerned because they can't really find out what caused the nerve damage. Also, when I was there he and another physician were having me do several tests, and it appears that I also have Fibromyalgia on top of everything else. I hurt at all 18 points of the test. He said if this is still going on in a month that he has a specialist he wants me to see that might be able to help with the Fibromyalgia.
When I started this post, I was extremely angry, frustrated and feeling so helpless.
It seems that I have days where I just can't take it anymore. And then there are days like today that I still hurt, but the emotions aren't as strong. I llike to fact that I can talk to others about all this. I just wish they had some kind of chat so that we could talk in real time.

[worried39]

Hi there

Thanks for your response which I'm so grateful for - I havent replied to his message he left me, thought i'd leave it to him to contact me, but it doesn't stop me worrying!

Thank you once again.

[ggreg]

Dear Worried,
I know you addressed this to JMar, but I suppose I can throw in my two cents, since I posted after her with help.  It's the morphine mostly, and the pain and job loss contribute.  I lost so much, and until they got MY pain under control, I was SO confused and upset, I wanted to run away from everything.  That's what your boyfriend is doing.

He's trying to make sense of things, he's mad and those near him are gonna hear it, and he thinks if he just sheds himself of everything around him, things will improve.  Leave the door wide open, but give him his space.  He'll eventually realize it's his condition, not anything else, and hopefully he'll come back to you.  If not, your relationship was heading downhill anyway.  If you haven't heard from him in a couple weeks, you could ask him to dinner, see how it goes.  
GG

[worried39]

Hi there

I was on here to try and help my boyfriend and read your post.  My boyfriend is suffering the same as you are and basically keeps getting told the same as you.  We live in the UK so things are no better here.

As a sufferer, I am hoping you can help me........ my boyfriend ended things with me last week after a 2.5 year relationship.  He is on strong dosages of morphine, had an urgent MRI scan last week for which they found nothing wrong with him and have signed him off work for 3 months with stress.  He has lost his job now, well will have by the time his sickness leave runs out.

He has turned completely on me, despite me supporting him the best I can with a 75 mile distance between us.

Could you put my mind at rest to reassure me that it is the pain, the morphine and the stress that have done this to us and not something i have done personally.  He has contacted me this weekend saying that I have caused him to have a breakdown.

Im at my wits end.... please, any advice you can give on how to make things better would be so greatly appreciated.

I hope your pain gets better - I really do sympathise with you as I've seen someone I love dearly suffer so much.

worried39

[ggreg]

Dear JMar,
I remember a post of yours back in late March, Dr. Abhijeet gave you good information on your multiple back problems.  Now, here is a link that might help you:

doctor.spine-health.com/Find/search.html

At that website, select your state or one nearby, and then when the doctor's pictures and names come up, next to it, find one that says "Spine Surgeon," and click on his "Areas of Specialization."  In this manner, you can find a physician who does back surgery.  That website also has a very active "Community" forum, and maybe they will be better support for you than this general one here.  On the off chance that website does not help you, go to the largest teaching university hospital in your state, take all your records with you or have them forwarded, and you should get the care you need.

I have multiple back problems, as well, and the "I can't do anything for you" deal has been common for me.  I lost everything in the process, my home, my ability to work, can't do any pleasurable activities at all.  I too fear I will end up in a wheelchair from nerve damage or worse.  Right now, I am waiting to get disability, which automatically makes me eligible for Medicaid, so I can then see a number-one specialist to do whatever it takes to help me and prevent further injury.  

What I don't understand with your situation is how come they can't operate to take care of at least your bulging disk, and maybe some of the other well-documented spinal problems you have.  Because an operation, that's it for you, other than physical therapy and medication.  If you do decide to go the operative route, while you are waiting around for all that to take place, you can ask for physical therapy and medication, as I mentioned.

The medications I am on are opiates and Lyrica.  Since you are working, you can only take Lyrica in the evening.  Otherwise, you will hurt yourself trying to work or drive while taking the medicine.  When I first took 75mg at bedtime, for the first time in my life, I woke up with no back pain and it lasted throughout the day.  But I have had to increase it threefold, it is a very powerful drug, it may not work for you, but it's worth a try, it deadens nerve pain.  As far as physical therapy, it can be aimed at strengthening your tummy muscles, which is what holds the spine in place, as well as a variety of other exercises designed to give you pain relief.  I am shocked that none of your doctors have suggested at least those things for you.  If you wind up losing your job, you have to out of work to do this, then you could consider going through the difficult process of applying for disability, the forms can be scary, so contact your regional Social Security Administration and they can guide you, if the time comes.

I hope you will find the best spine doctor you can, and get the pain relief you need with drugs and physical therapy in the meantime.  There is no excuse for them passing you around the way they have.  I hope some of this will steer you in the right direction.  I hate to see someone needlessly suffering.
Best wishes, GG