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Maybe somebody had similar condition and can share and please help :)

Even though I joined long time ago and found this to be the best place to find helpful information and invisible company by people in similar situation, is not until now when I feel that SOMEBODY will be able to offer advice and help me to find something else to help my situation. So, Thank you in advance for reading and willing to help my invisible friends.
I have been in bed practically for the last three years, I got diagnosed with a herniated disc l5/s1 and bulge l4/l5, but on the right side meaning that it should compress the right leg, my symptoms were always both legs equal, sciatica on both, compression on both up to the toes, etc,... and lots of cramps on the pelvic area. I saw ten (10) doctor in NJ and they said the hernia was not too big to operate, I had two epidurals and made me worst, I was treated with acupuncture and was the only thing that helped without pills but too expensive since I have my own business and pay my own individual plan and my plan did not accepted acupuncture, so I could not continue, when I started physical therapy I fell in bed again worst and finally found after a year a doctor who said the hernia could be removed but he was too senior to do it, i found another doctor very far two hours away who decided to operate the hernia and also found the reason for the left leg to be the sacrum and last vertebra too close so that would explain why I could not sit for longed than minutes and experience the pelvic cramps sacrum pain cocci pain, etc,...
When he open my back he took a picture of the nerve because it was black and said he should have done a fussion, but we needed to wait 6 months, after six months he said he was hesitant because I could be worst and I said worst than be in bed taking 3 percocet a day and not having a life, he said yes, I could be with even more pain, that I was asking him to cure cancer that he couldn't do anything for me, he didn t do any more follow up, only fill prescriptions from nov,dec,jan, but now his nurse who is the only person I can call, is not getting back to me after 4messages and I have no more pain medication since monday, I had to go to ER yesterday in enormous pain and trying to find a doctor.
To add to my situation, I had my insurance individual but the out of pocket was so much that I had to pay for my MRIs medications, etc,... now I have help from obamacare but initially with only medicaid and until march 1st with the united card, no doctors take medicaid so can't even find a primary care that I can see.
Maybe somebody knows what I have as this doctor never call it by a name, my symptoms are lower back pain, compression pain, numbness in the groin, pelvic cramps badly the worst, sciatic pain, burning, extra sensitivity on skin of legs, I walk on cain in mornings no longer than 20 min sitting to rest as the day progresses I get worst, I get setbacks, pain in both hips, when sitting have to go on side can't tolerate pain and sitting is what can cause worst setbacks after the removal of the hernia.
Best position in bed with the legs on pillows about 30 degrees.

Another question, my doctor who operated on me totally abandoned me, said he was hesitant to do the fusion, but if I wanted he would do it (???) also when I started crying he left and there was no follow up, no sending me to another doctor or pain mgmt doctor or anything. only wrote a few prescriptions for a few months , the first month I was in shock because I was getting ready for a fusion but after that horrible outcome I left and had no idea what to do and so I decided to try to work and make money and try to wait until the obamacare is set so I can find a good doctor and find my options.

But now I see there are no many options or no options on doctors not even primary care doctors and that send me to my last question any good spine surgeon that accept medicaid in north easter nj or around?
Thank you for anything you like to share,


  • None of us are equipped to give you a diagnosis/name for your condition. You do have a right to a copy of your medical and surgical records from your previous doctor, but you may need to pay for them. The easiest way to do this is to contact the hospital where you had the surgery, and request copies of your medical and surgical records.
    You can also contact the office staff of your previous doctor and request a copy of your file, again they can request that you pay a fee per page, however, they have to send your records to another physician when requested.
    Laying in bed, no matter what your condition is, when it comes to the spine is a bad idea. It worsens your muscle tone, endurance and ability to cope with the pain. You have to start small , and work your way up in time and distance.
    As far as going to the ER , it is not something that we encourage, here, simply because in most situations, unless there is a change in symptoms, most ER's are not going to treat simply for pain exacerbations.
    If there is a change in symptoms, sudden numbness or activity that worsens things, the ER's are not going to do tests to determine the cause, and aren't going to do much to ease pain aside from toradol or some other similar medication. Pain, by itself is not a medical emergency.
    The cost factor alone is prohibitive for using the emergency room, when it might have been more productive to find a urgent care and see the doctor in the office.

    You may want to consider reading the Step by Step Guide to Treating Chronic Back Pain article in the links below. It explains the steps to getting proper treatment for ongoing back pain.

    Please take the time to read this post and refer to it when you have questions

    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and growing.
    Here are just some of the highlights that are available as tabs on the main Spine-Health menu bar

    Spine-Health Main Menu Tabs

    Conditions Detailed medical libraries of articles and videos that address almost every spinal condition.
    Treatment List of treatments to the conditions identified by Spine-Health.
    Wellness Section contains articles, tips and videos to help patients after surgery and also to help people avoid surgery.
    Spine-Health Forums These are the forums you will be using
    Find A Doctor This provides with a method to search for doctors in various locations.
    Doctor Advice Health Center The Resource tab, has many important features. You can browse various doctor advice on given spinal situations, you can browse clinical trials and view a comprehensive glossary..
    Health Videos Index to all Spine-Health Videos

    As a bonus, Spine-Health provides these patient forums. Here you can meet thousands of people who understand and can relate to your situation. You will soon become part of the Spiney family[/u] who provide comfort and the advantages of a support system. You are now part of this family that is approximately 27,00 international members and growing daily.


    - It is very important to understand the Forum Rules to make sure all of your posts[u] do not violate any of the rules.[/u]

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    I am positive any member, new or old will find this Chroinc Pain - Step by Step thread very valuable.

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  • LeeLeeMccDeeLLeeLeeMccDee Boston MAPosts: 105
    It sounds to me that after getting so many opinions from so many specialists saying they do not recommend surgery, you should accept their professional opionios and not seek medical assistance at this point. Being idle is the worse possible thing you can do. Take baby steps everyday until you build up a tolerance. And you will get stronger but you have to stick with it. It sounds like you want surgery without trying enough PT. So many people believe surgery is the cure-all when most of the time, unless life threatening, time and exercise are your best options. Yes it will be extremely difficult but give yourself a challenge. At the very least seek therapy for depression. Depression makes pain so much worse. Any who knows, it may give you options you never thought of before. Keep strong, start a program even if it's only starts with 5 minutes a day....But Start!!
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