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BlueyedWolf- At a Loss what to do 2

sandisandi Posts: 6,343
edited 05/27/2013 - 11:06 AM in Chronic Pain
Dear BlueyedWolf,
I have had to lock the previous thread and reposted your original post here in another thread. I hope that this thread offers you more advice than the previous one. You have my apologies for the way the thread was highjacked.

Let me welcome you to our forums, and see if I can help a bit. Have you consulted with either a board certified ortho or neurosurgeon who specializes in the spine? If not, I would start there. A bulging disc is just one that sits outside the normal boarders on the vertebra. You also said that you have some annular tearing as well? what levels would that be at ?
What type of doctor are you seeing currently?sta There is a standard treatment protocal that doctors follow, like a road map, when it comes to treating back or neck pain- it starts with the least invasive treatments, and then depending on the results, it continues to the next step, and so on......the first steps are usually the physical therapy and anti inflammatory medications, then injections, and then more invasive- but the doctors do have to follow this protocal. If PT and the injections don't work, they will most likely send you for a consult with a surgeon or two.
As far as the ER goes and going to be treated for pain- it is not recommended. First, because this is a chronic condition, they don't have access to your medical records, secondly, they are there to treat emergencies, car crashes, heart attau cks, and other, serious life threatening conditions. They don't have the staff available to run diagnostic testing(cost factor), and their job is to get you stable and send you to your regular doctor. Complaints of pain, in and of themselves are not considered to be life threatening, unless there are other things going on that make that complaint of pain sudden, and in addition to other conditions.
It sounds like you are experiencing common side effects of steroid injections. As Jon said, it can take a few days to see whether or not the injections are helping you or not. Hang in there. If I can be of any help, please feel free to PM me.

I have a lot of problems, the few of which cause the most problemse are as follows- from the "top" lol-

A pinched nerve in my neck, happened in August of last year. I woke up with severe pain, felt like someone was jamming a fiery rod down my neck and up and down my left arm! The pain radiated up and down, into my fingers...went to ER, where they basically laughed at me and sent me home, said I "must have slept wrong"....I came home crying, hubby called head nurse who told me to come back in if I was still in pain...went back in with a friend (who is a VERY well known presence in the community)...I was given an IV of something to 'ease' the pain...didn't touch it :( Sent home with a prescription of vicodin...some-what helped, to where I could actually 'some-what' function....nothing other than this was done....I have issues with that arm to this day-my pinky, ring and sometimes middle finger are HYPER sensitive, but also pins and needles type numb also...if that makes any sense?! Have very degraded grasp and weakness...

When I was 18, pregnant with my oldest daughter, I went night hiking and fell, dislocating my right shoulder. It has since dislocated hundreds of times...I have severe scar tissue built up, but my insurance won't agree to the surgery, because it is not "life-threatening"...I can't wash my hair correctly, without feeling like it's going to 'slip out'...this is the "least" of my pain issues at this point!!

I have several bulging and herniated discs, and at least one or two tears...according to my MRI's. When I first got the MRI's, I was told there was nothing wrong but "some arthritis", until I went to see a pain clinic, where I was told those diagnosis...I have been suffering with these pains for YEARS...only recently getting somewhere with doctors!! I was told to start PT, but tried explaining to the doc that there was NO way that was happening while I'm in this much pain..I was referred to the pain clinic in my area, where I was put through a series of tests, and was told that the epidural shot was worth a try..??

I received the epidural steroid shot in my L4,5-S1 (?) on Tueday, the 21st of May...they gave me 2x the dosage of whatever sedation IV they use....and NOTHING...not even a little bit!! (Gave me one dose, then about 5 minutes later another since I felt nothing from the first). He gave me the shot and it felt like someone stabbed me in the back, it was horrific! I was crying like a baby by the time he was done, he apologized profusely, and gave me some pain pills to leave with...only 3 days worth..and when I called his office yesterday,(5 days past procedure) his nurse called me back and basically said "sorry, you're lucky you got what you got, go to the ER if it's that bad"...

I am in pain, and no one will do anything it seems...none of the doctors around here will give anything for the pain! I have been told by one that the ONLY thing she will say is PT, exercise and a healthy diet, that she wouldn't even refer me to surgery...another told me she's not risking her butt and her practice to give me any narcotics...(at a loss for words when I heard her actually say THAT to me)...the pain clinic can't prescribe anything because they go to several different hospitals and areas around here and aren't around MY area enough to monitor me...where can I turn!?!?!

They've seen my results, it's not like they can't see any reason....but because of people with (let's just say)issues around here, people that are actually in PAIN, can't get any help it seems....? I really think I'm going to find a doc that will recommend surgery and go forward with that...since the shot, I've gotten severe foot and leg cramps, that weren't there before; more pain; and facial flushing/hot flashes that are driving my hubby and I insane!! Thanks to any advice you can give!! :(


  • I would like to give you a proper welcome to spine health. I'm so sorry you've had the problems getting health care, this is just my 2 cents and not a put down of any kind, but many doctors and clinics and even hospitals see the word medicaid and do all they can to get you out the door with as little expense to them as possible. It's a terrible truth, but it might be at the bottom of your problem.

    You may have to do a lot of looking to find the services you need. Keep at it and I believe you will find the help you need somewhere, soon.

    Once again welcome to spine health.
  • Thanks for your helping our new poster out Gary. I appreciate it.
  • this is just my 2 cents and not a put down of any kind, but many doctors and clinics and even hospitals see the word medicaid and do all they can to get you out the door with as little expense to them as possible. It's a terrible truth, but it might be at the bottom of your problem.

    Yes....I knew that that "might" be at the heart of the problem...but, there are stereotypes at play here also I believe...I will explain a little bit better-

    I am 35, married and mother of 3 wonderful children-We recently moved into this VERY small town in northern most Maine, coming from TX. I do have tattoos though (my husband is an artist, of which, when we were doing good, he had bought some equipment...). I have several tats, all of which (besides the 2 Egyptian in nature ones) are animal paw prints and wolf faces...so, no gang relation or anything lol!! I also have no teeth, they were removed last November due to my having the mutated MC1R gene (which affects both pain receptors and reaction to pain meds). Locals do not really work on me, at all....so, I kept putting off going to the dentist, over and over again...until I found a dentist that used sedation...upon reviewing my XRay. I was found to have an abscess on almost every tooth :( as such, they were all removed, and actually on this past Thurs also had 2 LARGE bone-y spurs removed by the same oral surgeon...so, I may look like an abuser to some...?! Idk...all I know is what I've been dealing with, and what my MRI now shows to be proof as to what I've been experiencing...I just wish I could find a doctor that sees ME and not what I "appear" to be on the outside...hard as that may be...
  • I also want to say thank you for trying to help me...I am at a loss as to levels with the annular tearing...it's "murder" trying to find anything out it seems in dealing with some of the doctors....like I said above, the first dr I saw said there was nothing on the mri but "maybe some arthritis"...it's disgusting...

    I'm see an Interventional Pain Management Dr? He has seen my file, with my MRI, and saw me about 20 mins total before, during and after the injection...
  • Kiki48KKiki48 Posts: 196
    edited 05/28/2013 - 2:49 AM
  • gaj399ggaj399 Posts: 270
    edited 05/27/2013 - 3:31 PM
    If the small town you live in is the kind that decides all about you by one look. You may have to do some major research about doctors in a larger town somewhere as close as you can. I don't know what the rules are in your state, my state the records of your tests belong to you. They should have to give you a copy for free or a slight fee. You're gonna need to get as many records together as you can, find doctor possibilities and make copies of your tests and send them out. Like I said you will have to be your own advocate.

    It sounds like you need a neurosurgeon or an orthosurgeon.

    Now, start looking, that doctor you're looking for is out there.
  • Hi Susan,
    I just wanted to tell you that I have read your post and I am sorry you have been through so much and feel like you have been treated poorly. I'd like to point out a few things. First being the medicaid issue. My sister is a surgeon (super proud of her). The fact is medicaid IS an INSURANCE and often times pays better and faster than many other private insurances depending on the procedure. Also most doctors in practices (especially those who practice with several doctors) don't even know what insurance a patient is on since that is handled by their billing office. I can't count the times different surgeons/doctors have asked me in the room what type of insurance I had because they wanted to be sure they were giving me a treatment that the insurance would pay for, they didn't know what insurance I had. Do some doctors look at you with no teeth and tattoos and judge you? ABSOLUTELY.... just like some cops do, some teachers do, I doubt you'd find any profession that didn't have people like this. Is it wrong? ABSOLUTELY.... but my point is not all doctors/cops/teachers etc judge this way. Keep looking for care and for a doctor who treats you with respect, even if you don't agree with their treatment, if they treat you with respect then they probably are trying to give you the best care possible, and they'd respect your decision to get a second opinion. I know you must feel so beat down, but do try to face each appointment/procedure with a positive attitude. I'm a firm believer that a smile/compliment can totally change how someone feels about you.
    Welcome to our forum. I hope you are able to learn lots that will help you in this journey.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • I'm glad to see that you are still here. Let me see if I can explain the differences in the types of doctors , especially when it comes to pain management. It used to be that pain management itself included both interventions ( shots, spinal cord stimulators, pain pumps, and of course, medical management in one practice) but in the last several years, in part , due to the ever increasing problems with over doses and deaths due to abuse of medications and street drugs, the restrictions and guidelines put into place by our governmental bodies, pain management seems to have split into two distinctly different groups- interventionalists- doctors who do procedures only- steroid injections, spinal cord stimulators, pain pump implants, radio frequency ablations and other such referrals to physical therapy , but no long term management of pain through the use of pain medications (opiates). They usually will either refer you to your GP if your state allows that, or if they do use meds, it is mostly anti inflammatory types, anti depressants used off label for the treatment of pain, drugs like lyrica and neurontin (gabapentin) for the treatment of neuropathic pain.......anything else and they seem to refuse to manage .
    Then there are the conventional pain management clinics- these do all of the same types of things, but also will manage pain medically when the other options have failed to adequately relieve the pain. However, in both cases, they follow the same standard of care, using the least invasive methods first, then moving on if there is not adequate pain relief and pain management.
    I use a physiatrist who is in my pain management practice. He is a conventional PM doctor.. He uses all of the modalities available including recommendations for yoga, biofeedback but also manages my prescription needs as well. I have found that most of the physiatrists are more open to managing pain with opiates when they feel it is necessary and I've found that they are often the best when it comes to considering the overall picture- what is causing the pain, what has worked, what needs to be done, and then making whatever referrals or requests for testing or results that he feels may be needed.
    You may want to see if there is a physiatrist that is in or near your area that is part of a spine group. If not in your immediate area, check in the area that is most local to you that has a bigger hospital or bigger medical clinic within driving distance to you . Given everything that you have going on, this might be a huge step in the right direction to getting a good idea of what is going on physically with you, and getting you the right treatments.
    Hope this helps you some,
  • gaj399ggaj399 Posts: 270
    edited 05/27/2013 - 6:24 PM
    medicaid is an insurance, however the state that you are in decides the rates for each proceedure and which are even covered. I live in a relatively small town, however we have a hospital and quite a few general practicioners and DO's. There are probably 15 family doctors in town, of these only 2 accept medicaid patients. I know this because my daughter is on medicaid and finally decided to drive 40 miles to get one that was acceptable.

    I commend those doctors that do not just look at the bottom line, but they have to pay the bills too.

    Sandi, a great idea about the physiatrist, I didn't think of it because we don't have one within 60 miles of us. Those that have one seem to really like having them handle there treatment.
  • Hi

    Was in too much pain yesterday to write. I haven't got any tatts but I think a lot of people and doctors treat anyone with intractable pain the same way. I wish I had read this Manual, when I first started on this journey 7 years ago. If you search this site under intractable pain you will find it. I think it's because people can't see the pain. I used to think people who claimed to have back pain were bludgers so I was just as bad as everyone else.

    Physiarists, we don't have them here is Aus, sound fantastic, as they specifically deal with pain.

    A friend of mine who is a specialist told me to see an anesthesist for Pain Management as they usually understand better. I just posted something where veterinarians get more training in pain management than physicians.

    So chronic, intractable back pain is not well understood even now. I know this is a bit off topic but I wonder if, as our bodies are made up of electric currents, with wireless computers, wireless mobile phones (we have the highest usage rate in Australia of anywhere in the world) and wireless TV's that this somehow messes up our bodies electrical systems. It sure messes with bees and birds navigating systems so why not our natural healing systems.

    I always thought I would get better and was totally shocked when I didn't. Please read the Intractable Pain Manual then you'll know what you are in for. Better to be forearmed and forewarned.

    And it is a terrible fact that people do judge by appearance, so you do need to cover your tatts and wear really straight clothes when you see any specialist, I worked for Defence, had a high security clearance which they don't give to everyone, and still had an uphill battle to have adequate medications. I also dealt with military vets who had horrific injuries and they were battling with pain too. (sorry for the pun).

    My Dr still has to cover his backside but I have been with him 10 years, for 3 years before my accident, so he has seen me in various states. Just ask them if you have ever asked for medications before this happened. The other thing is that the strong medications didn't work by themselves until they were combined with a muscle relaxant.

    Hope everyone has a less pain day.
  • Kiki48KKiki48 Posts: 196
    edited 05/27/2013 - 11:24 PM
  • Kiki48KKiki48 Posts: 196
    edited 05/28/2013 - 2:50 AM
  • LizLiz Posts: 7,832
    I left the 'I'm leaving' as I am here only to edit the inappropriate wording which could just fuel more problems to this thread, I left the comment so you could edited that out yourself if you wished.

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Kiki48KKiki48 Posts: 196
    edited 05/28/2013 - 2:51 AM
  • kiki
    I hope you stay you have made some good post
    We need some post like yours.

  • blueeyedwolf1977bblueeyedwolf1977 Posts: 55
    edited 05/28/2013 - 6:59 AM
    I appreciate your honesty, and the other people on this page also....yes, I understand the stereotypes that go along with my "appearance"...it is unfortunate, in todays society, but it happens all to frequently!! I am an intelligent young (although I FEEL old lol) woman, and when I get patronized, I know it!! (not here, with docs)...I have straight up told them how I feel about the way I am treated, and I can tell that they are trying to "read" me based on what they see....I told them that outside appearances do NOT mirror who I am....only what I look like!!
    I will not give up! I am a fighter (per say, after all, I am Irish lol) I WILL be seen for who I am and the daily struggles I face rather than what I appear to them as!!

    Thank you all, and any info/comments/questions are welcomed! I appreciate it!!
  • blueeyedwolf1977bblueeyedwolf1977 Posts: 55
    edited 05/29/2013 - 5:26 AM
    I have,over the past few days, developed, .some new "joys"...

    I received the shot on lower back-because of the sciatica on left side mostly (which hasn't gotten better, if anything, it's gotten worse) have now started cramping uncontrollably, my hand goes into this 'claw', (affecting mostly my two outer fingers-pinky and ring, but the whole hand is painful)- and my foot has these crampy spasms that I can't even start to describe...it's like all the toes go in different directions?!! I have marked decrease in strength and grasp in that hand, more so than before...both legs, but mostly my left almost goes out from under me. Shaky almost all the time, like I haven't eaten in awhile, and my back....THAT feels like someone is constantly kicking/stabbing/electrocuting me...from what I've read, other people have had these issues from the shot as well..? I definitely need to find another doctor...there just aren't many options here.....I really am at a loss...
  • sandisandi Posts: 6,343
    edited 05/29/2013 - 1:38 PM
    your doctor Blue...........while it is normal to have some increase in pain for the first few days post injections it is not normal for the other things that you are describing to be occurring. Your doctor needs to advise you at this point.. The lack of appetite is usuallly the opposite after a steroid injection, most people get really hungry.
  • I have decided, that because NO ONE wants to listen to me.....I am contacting the hospital, in Portland ,ME that has specialized neurosurgeons....at the Spinal Center....to get the microdiscotomy (sp?)...I cannot deal with the idiocy and "try this and that".....but won't HELP me!!! The doctors around here aren't trained to deal with specialized issues...only giving vaccines, colds, simple things.....I am a mother that can;t even get out of bed sometimes and that isn't acceptable..
  • sandisandi Posts: 6,343
    edited 06/02/2013 - 4:10 AM
    I hope that going to see another doctor at a major hospital brings you better results. Unfortunately, sometimes, we all need to do that just to find the right treatment with the right type of doctor.
    I hope that you get the answers you seek. I wrote a thread called getting treatment for Chronic Back pain that kind of gives an overview of the steps that happen when you have chronic back pain. It is in the Chronic Pain forum and also in the forum FAQ section under medical .
  • I have read it :)

    They had tried me on several different N-SAIDs, none of which even helped, all they did was help flare up my ulcers...one FNP tried me on Tramadol, but would only give me 2 refills and said I "should" have felt better w/ NO more pain lol.....ya...that's what I deal with up here...lol...
    Then she sent me to the pain clinic, which gave me the epidural steroid shot....which I'm dealing with the added pains from that now :(
  • Well I am glad that you made the decision to go to a Spine Center instead.
    What you have run into is one of the big problems for patients when they see their GP/Family doctor for back issues. While we may need them for the referrals if our insurance requires it, they tend to not have the knowledge base to interpret MRI's other than what they read on a report, and then they try to treat the condition themselves. It's not always the best option, especially when it is determined that surgery might be necessary, it is time for them to send you to someone who can really help.
    What did the PM office say when you called them about the clawing of your hand and the problem with the spasms in your feet?
  • The clinic "nurse" told me that because they work out of SEVERAL offices here in Maine, that there's really nothing they can do to help, said I was "lucky" that he sent me home with "a little something" after the shot because I was in such pain...told me to talk to my family doc........I am sooooooooo lost.....this hosp is over 5 hrs away...
  • humanshishkabobhhumanshishkabob Posts: 65
    edited 06/06/2013 - 6:49 PM
    Dear Blueeyed wolf,
    I am so sorry how much difficulty you have experienced trying to get help. Reactions to steroid shots do occur--I had increased pain, steroid flush, muscle spasms, loss of appetite, headache and horrible chest pain 24 hours after getting an epidural steroid injection for an extruded disc. I felt worse for about 3 days after each injection AND they didn't help much. I really hope some one can help you in Portland. Can your husband or another advocate go with you to Portland? It helps to have someone support you when you meet the doctors and try to process the situation and your options. Also, if it is a 5-hour drive, can you get out every 30 minutes or so and walk or change position? The car vibration doesn't help nerve pain. Please know that there are people on this site who care about one another. I am grateful for being able to vent, to receive and give suggestions for coping with pain. I wish you the very best for your appointment and hope that you can find some relief soon. Good luck!
  • blueeyedwolf1977bblueeyedwolf1977 Posts: 55
    edited 06/06/2013 - 10:16 PM
    My husband and children would be going with me and most likely staying at Gary’s House, An affiliate of Mercy Hospital which provides a home away from home to families or loved ones of patients. There are nine tastefully decorated rooms in which to
    sleep, relax, call home or watch television. $15/night and donations accepted. They are about a block away from the hospital...and yes, the car rides are nasty sometimes...but I do most of the driving...how long I would have to stay in the hospital or down in that area, I have no clue though...

    The issues with my shot are still continuing...3 weeks later....the facial flushing and hot flashes aren't nearly as bad, but the increased pain has gotten worse, which is why my new FNP wants another MRi done...I appreciate all the advice I have received
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