SpineUniverse Community Advice
Get help and share your story with others who know what you're going through.
Please register or log in to join the discussions!
Posted in: Back pain.

Not sure what to do!

Started by rozalee on 03/20/2011 1:50pm

I had minor surgery on L5 and S1 to alleviate the pain I was having in December of 2009. In June of 2010 I started having some pain in the middle back but more in the lumbar area. My neurosurgeon referred me to a pain management clinic. I was given epidural injections in my lower back for pain that was radiating down my left leg and there is also numbness all the way down the back of the left leg. I am also on pain pills. The injections would only last about a month. The pain in the middle of my back was getting worse and not the past 5 weeks are almost unbearable. I sit at a desk most of the day at my job. It has gotten to the point in the past 5 weeks that I can't sit at my desk more than 4 hours and I do get up and walk around about every hour. There is a burning that starts in my back the more I sit and gets progressively worse the more I sit. My pain management doctor referred me back to my neurosurgeon in case there was something surgical that had to be done. In my opinion I feel like my neurosurgeon does not want to treat me and my husband shares that same opinion. I had to have an mri of my thoracic area and when he called to give me the results he said that I had several bulging discs in that area. He said surgery in that area is very risky which I understand and really do not want to have surgery. He said depending how much pain I was in if I wanted to have a myelogram and I said yes because I want to find out why I am hurting so badly because I can't sit at my desk all day and he said "we are not job counselors" I got totally so upset with this statement and when I told my husband what he said he was flabergasted! I take this as an insult and that he does not really want to treat me. Should I find someone else or just forget about what he said?

Do you find this discussion helpful?
0

22 Responses

Like/Dislike
0

I am just so tired of pain and doctors that just do not want to help. This pain is driving me crazy and I want to live a normal life. I am sure there are so many on this site that feel the same way. I just need to know if I should find another doctor since this doctor does not seem to want to help me. I am not sure why he would feel this way. He did my neck surgery also back in 2000 and I have been fine ever since with that. It just upset me so much that he made that comment and seemed somewhat insensitive. I am so lost on what to do but I can not live this way any more.

Like/Dislike
0

Hi Rozalee,
I've never had surgery, but have been to many docs for my cervical and lumbar problems. This is totally your call to make- by what you've told us here, your Neuro doc sounds like most . They seem to cop and attitude when a patient tells them that something they have fixed - isn't fixed and is causing more pain. I'm not sure if it's ignorance or what, but they don't handle it well. Are there any other Neuro doc in your area that you could see? I have been to a PM doc, something went wrong during the last injection on my lower back- I've been in severe pain daily because of this- it took him from 6/10 - 2/11 for him to see me, I always saw his NP or PA- I complained about this from day one, following the injection. When I saw him, all he could say was there is improvement in the back ( as seen on a new MRI ) He doesn't know what could possibly be causing this pain- needless to say,during the procedure he had said the syringes were malfunctioning so he had to DOUBLE inject me with twice as many needles and meds ( NO WHERE IN HIS NOTES DID IT MENTION MALFUNCTIONING SYRINGES -THE PROCEDURE HAD BEEN DONE , WITHOUT ANY PROBLEMS - ACCORDING TO HIS NOTES ). I realize they are human and make mistakes, but when you cover them up TO COVER THEIR OWN A#S- How is the patient suppose to trust you again. I mentioned the syringe problem to him when he finally saw me, and he ignored me- and went on to say that I was blaming him ( Like you, I just want to know what is causing the pain, and find some way of fixing it ). IF I were you, I would look for a new doc, but beware also, that it may be hard to find one that will see you after someone else has done surgery on you first, it's not impossible though. Keep looking and trust your own instincts - it's usually right. He should have more compassion for you, he knew what type of work you did before- he should be looking for another solution to try to help alleviate some of the pain your feeling, not brushing you off with a snide comment . My comment back to him would be something like " Oh, so my previous surgeries have lined your pockets well, and you have no use for me and my medical problems, as they aren't large enough in your eyes to buy you and your family a new summer home, a month long vacation to Italy , kids college is paid for ??!!!"you get where I'm going here :) - I wish you well, don't give up- there is someone out there that will seriously listen to you, and try to help . Let us know what happens.
Wishing for you many days with minimal pain,
and strength/guidance to get you to a pain level that is tolerable.
Chris

Like/Dislike
0

Hi Chris

Thank you so much for responding! I am so sorry you had to go through all of that. I like your comeback responses that I should say to him!

For your doctor to do that and say that to you is awful so say the least! Just like you said he said that the new mri done of the lumbar section he says looks good. I told him of the terrible pain I was having in the upper portion of the back and he said that is something new and that I had not metioned it before so I had to do another mri of the thoracic area. I agree and think I should find another doctor in the area but I am going to definitely sit down with him and tell him exactly how I feel about what he said and that I do not feel that he is being very compassionate.

I will keep you updated on here and let you know what happens.

You take care of yourself!

Lisa

Like/Dislike
0

Hi Chris,
I saw one of your other posts and realize we live in the same area and possibly seeing the same group of ortho surgeons. I am very frustrated with them and just called saying I want to see the DOCTOR and not his PA whose only answer is to prescribe more meds. I don't think my issue is nearly as bad as some I've read on this blog. I had a slipped disc (?) three years ago that improved slightly with meds and PT. I had a nerve block that I felt made it much worse so didn't go back. It slowly improved and no issues up until Feb. 2011 when it flared up again. It feels much worse this time although instead of my back the pain is mostly in my right leg and especially my foot. It feels like it's on fire all the time, my foot is swollen and I can barely move my toes. The right side of my calf has been numb/painful ever since. MY MRI showed a bulge/perforation pushing on the L5 (sorry..don't really know the lingo). I'm scheduled for a nerve block on Apr 1st but scared to death after the last time. I've spent a total of maybe 10 minutes with the Dr. and not since before the MRI. The PA scheduled the nerve block appt.

JUst feeling frustrated today....refused to take the pain meds (hydroco is all I've been able to handle..everything else makes me very nauseous) this morning to try to make it through work but leaving soon...just can't do it.. Any advice?? Have you found a dr in the area that will actually meet with you and talk to you? thanks for any help!

Like/Dislike
0

Hi Lisa,

I do so hope that you find a caring Neuro doc, their out there - just have do alot of research. Did you have any kind of accident after your 2009 surgery ? Anything that would possibly cause the bulging discs you now have? Sometimes these things are caused by age, past/present work,I believe genetics play a major role too. Either way, I know from the research I've done, that having surgery for the thoracic area is very risky. I have no idea what mine looks like, but can almost guarantee that there are problems there- b/c I have 5-6 in my neck and 2 previous in my lower back- the area's between would more than likely take alot of abuse- because they are doing more work and pressure is constantly on them ( according to the new MRI ) LOL- I should feel better - but I feel worse. I refuse to look there now, as I have enough to deal with already. Definitely find a new Neuro- one you feel comfortable with. Look for some PT exercises to stretch out the thoracic area- some with a Stability Ball will prolly help alleviate some of your pain- you can find them on line. I found this site, through a suggestion on here to be very helpful . http://www.northwestspineclinic.com/resources/back-pain-exercises/
I hope this helps you a bit, don't give up your search.
Much healing to you- keep in touch
Chris

Like/Dislike
0

Hi Swe123,

I haven't found an Ortho doc yet, just started that search.. I've been to Pain Management, Neuro, Primary Care, Chiropractic, and PT- nothing is making it better. I have been dealing with all of this since 9/06- I'm definitely sick of the BS by now. My problems in my lower back, cause Lt leg pain radiating from the lower back-down the side/or back of my Lt leg- into the calf- to the foot at times also. It's a burning, sharp, stabbing pain that will worsen when sleeping. I have what feels like an electrical shocks in my foot, that will wake me in the night. This I've been told is the sciatic nerve pain- it also causes numbness/tingling/ weakness in the leg. It is extremely painful, I take Hydro's 10mg,3-4 day- and Flexeril 10mg 3-4 - these DON"T help with that pain. I have at times had swelling in my ankles/feet/toes, I believe it happens more if I push myself- and am on my feet for long periods of time. I can - at that time only get relief by elevating my feet above my heart ( this will reduce the swelling). There are many things this could be from, as heart problems will cause edema- I'm not sure of your age/ medical history so I want to say- PLEASE DON'T IGNORE IT ( it could be related to your back problems / or an underlying condition- please mention this to your Primary Doctor he/she will be able to properly diagnose and treat you.
What type of work do you do? Have you had any previous injury to cause the L5 bulge? What other meds do you take daily? How long has it been, or how difficult is it to work an entire day? What is your age? Your activity level before/ present time?Do you use heat/ice on you back/leg ? Stretching of any kind ? Do you take your meds while you work? All this and more play a part in how you feel, and how to approach the problems you suffer from.
Are you close to the Syracuse area? That is where my search is now for an Ortho, it's so hard- I just talked to my PT yesterday- and he suggested a doc in the Buffalo area- did research and all I have come up with is completely negative results so far- very frustrating to say the least.
As for the nerve block, I've never had that- I did a Caudal injection for my lower back- did nothing for me- but, cause more unexplained pain. I wish you luck there. Follow you instincts with that- if you have doubts- maybe a new doc would be the answer- but then there is the wait to get into a new one- I wish I had some better advise for you with this.
I do so hope I was of some help, and that I didn't confuse you more. Best wishes to you - may find some peace and pain relief soon.
Chris

Like/Dislike
0

Oh dear. My, I can't believe your doctor spoke to you in such a rude manner. You sound like a very nice person. You are paying him, and if you have a problem with him, first discuss it with him or find another specialist. Maybe he was just having an 'off' day.
I've had my run with doctors over the years, and I had to learn to confront my fears, mostly about being ugly, and stand up for myself.
I think you know the answer to your question. Don't be afraid of him. He's just a human with a lot of education.

Thank care,

Like/Dislike
0

Hi Chris,
Yes, I live just north of Syracuse and have been going to SOS. I made a decision to go off the pain meds due to quality of life and honestly have not noticed a change in the pain, swelling, pins and needles and numbness. I'm 49 and was reasonably active beforehand (even climbed a high peak last summer). I also belong to Curves so was building muscle and stretching. Due to my schedule I hadn't been to Curves in a few months before the injury. I talked to my dr yesterday regarding my frustration with the lack of communication or help other than narcotics. He suggested a nerve conduction test but after researching it I've decided to cancel it based on the amt of pain it causes and the little information it gives. I'm also planning on canceling my appt for the nerve block as again I don't think it helped and actually hurt more when I had one last. The last straw was when I asked him if he had been in discusssion with the dr that does the nerve block and the PA who I see most often. He said he had had several discussions with M and they were on the same page. I let him know that I hadn't ever seen M and only met with C. Complete silence on his end of the phone. Also, he told me that the swelling in my foot was caused by blood pooling due to lack of use. The logical solution to me would be to try using my foot more often. He told me , no don't if it hurts. At this point I lost faith in his abilities.

My new plan is icing my foot (never mentioned by dr but seemed like a good idea) and have found considerable relief with that. I'm taking Aleve (again never mentioned so self choice). I have an appt with a chiropractor and PT this week. Based on their recommendations I will either fire my dr and stick with PT and chiro or consult a neurosurgeon in Syracuse. My mother, brother and sister have all had back surgies with excellent results. I'm also considering looking into biofeedback. I don't know too much about it. Has anyone tried it?

Like/Dislike
0

Hi swe123,
OMG, when I read your recent post - I wanted to scream. I have been looking for an Ortho doc- with regard to possible surgery for my lower back pain (2 opinion). I just got through reading anything and everything pertaining to me on SOS's site. I was ready to have my PCP set up the consult- I can't believe it- sounds like they are like most doc's, and I've seen enough of them and wasted enough of my time. They sounded perfect, now I'm back to square one- thanks for the heads up on that one :) I can't believe that your doc, tried to pull that BS stunt with you (just flat out lying to you).
As for your Nerve Conduction test, I've have them done for both cervical and lumbar issues. They really aren't that painful- while doing the test it is uncomfortable- the needles and the electro shocks- I think the cervical one was worse than the lumbar one. It will show if you have nerve damage, which is very important. I actually have to have my - I believe 4th one next month for my back. It takes about an 1/2 hr or so. It is uncomfortable, but not to the extreme. I just had my cervical done in 12/2010- that one was the most painful one I've had ever ( 6-7 total , for both areas), my pain was worse only because of the needle in the right bicep just friggen hurt- I told the doc, and he removed it ( kinda laughing-saying it couldn't possibly hurt that much ) - well it did, and I took a pic of the bruise it left behind so that he could see I wasn't kidding. Let me say, him and I are very close- we have a GREAT pt/dr relationship- ( when we did the test, and I felt the pain- we were joking back and forth with eachother about it really causing that much pain), he removed it and tried again- and that time it worked.
I'm not familiar with the blood pooling, never heard of it- do what you feel comfortable with, whatever helps you. As for your meds, if Aleve helps, use it. I can't use that often, as it tears my stomach up instantly. But lord knows it's so much more safe to use than any narcotic. I hope the PT/Chiro work for you - take it slow, the pt will cause you pain in the beginning, if it doesn't get better in about a month- stop , that's what I had to do. What Neurosurgeon are you seeing ? I really need to find either another neuro or and ortho- for a 2nd opinion- would prefer an Ortho- I have spent so much time on line researching- to only come up with nothing now. Are the nerve blocks like a epidurals or caudal injections? I so need something different to try- everything thus far (with the exception of chiro) has been a complete waste of my time. Who, or what group of specialist did the surgery for your family members- do they live in the same area as you ? What is biofeedback ? I've heard it mentioned through others, but never really grasped the whole thing. Maybe some more on line searching in our futures LOL- like we don't do enough of it already.
Gotta run ( now that's funny ) , Have a good one
Chris

Like/Dislike
0

Hi Grace7777,

Thank you so much ...I try to be nice. I was one of those that in school the teacher would raise her voice just a little and I would cry. I am tougher now and do not when people for no reason especially a professional doctor to talk to me that way. I have not had any accidents. I think most of my back problem is hereditary. I have 4 brothers and all of them have had back problems. My mother had 3 back surgeries and I know she had a rod in one of those put in her back. I am having a myelogram today... shortly as a matter of fact, to find out what is going on. When these results come in, my husband and I are going to sit down and talk with the doctor to find out why he would talk to me that way and I am also going to ask if he does not want to treat me he needs to let me know. He has been treating all of my family since as far back as the 80's. I think my family has probably provided quite a bit of his salary! I will let you all know how this test goes.

Like/Dislike
0

HI, JUST READ YOU R INQUIRY. I TOO HAVE BACK ISSUES. HERNIATED DISCS, DEGENERATIVE DISC DESEASE, STENOSIS, SPONDYLOTHESIS, SCOLIOSIS. SUFFERING FOR FIFTEEN YEARS. NO SURGERY, NO MEDS. PLEASE, BEFORE YOU DO ANYTHING, PLEASE CHECK OUT THESE TWO WEBSITES. WWW.LASER-SPINE .COM AND LASERSPINEINSTITUTE.COM.. IN AFEW MONTHS I WILL BE HAVING OUTPATIENT LASER SPINE SURGERY.

GOD BLESS

MISSMUFFIN

Like/Dislike
0

Hi Chris,

After seeing the Chiro, doing some research and talking to others I think my issue might be Reflex Sympathetic Disorder. The chiro suggested it because the areas of my foot pain do not coincide with my MRI. I will still go thru with the nerve conduct test tomorrow just to rule out other diagnosis but I'm pretty sure this is it. I have a background in special education so I've begun doing some of the exercises, stretches and desensitization that I expect a PT to recommend. I have an appt with one on Tuesday but it will probably take a little time to get a script for pt sessions. I'm hoping that by catching it early I can minimize the end result. Reading about it on the net was pretty scary! I also plan on calling the Ortho to see if the dr. doing the nerve block needs to know about this new info. I know they think I'm a pain but I believe in being a strong advocate for yourself when it comes to the medical field. I'm also making an appt with a Neuro (got a recommendation for Dr. Todd) and would like to move my care to him from the ortho. since I truly believe this is a nerve problem more than a spine/bone one.

I wish you good luck....I'm new to this scene and can't believe how difficult it is or how many years people on this board have been suffering. Family and friends are sympathetic but then they go about their lives and our pain continues unabated. I feel like I have become a boring individual with nothing to talk about except my aches and pains. I was already on Lexapro or I would be looking into an antidepressant. Please let me know if there's anything I can do to help. If nothing else we can share good drs. vs those to run away from!

Shari

Like/Dislike
0

Thankyou Missmuffin and I hope your surgery goes well. I did go to those websites and I am very interested in the laser surgery. I also sent in an inquiry on the form on the website. My doctor did call me today with the results of my myelogram of the thoracic area. He was kind of candid and was not sympathetic at all! He said according to the myelogram that he could not see anything that would be causing me so much pain in that area but I did have 4 bulging discs in the thoracic area and that he would not recommend surgery in the thoracic area. He said that the bulging discs would cause some pain but not the terrible pain that I was feeling. I feel that he is saying that my claims of pain are not real. Why are some doctors like this? I just do not understand why I am in so much pain if there is nothing there? He said he would not recommend epidural injections in that area either. I don't know what to do any more. I am walking around like I am 90 and not 50. I hurt so bad and have not been able to do a full day of work for about 2 months now because the pain is so bad when I have been sitting for a period of time that I end up in tears and then I leave work. I am thinking I should get a second opinion because this doctor is making me feel like I am going crazy and that I am making this pain up.

Like/Dislike
0

Hi Shari,

First , what happened at your appointments this week? I hope you found some answers- this is all so frustrating. I was informed of a Ortho doc , a Dr. Tallarico in Syracuse- ever heard of him? My bestfriend has RSD, and she has gone through hell with it- mainly just getting a proper diagnosis took forever. she gave me this site to visit to get you started http://www.rsds.org , I can get more info if you need it , as she has done so much research on it.

I know how you feel, when it comes to family and friends- they kind of ignore us-sometimes it's because they can't help us, and sometimes it's just the opposite they turn on us and become angry with us and our pains. I haven't taken any anti-depressants, I take so much already, I don't want to be anymore groggy- although they might help with my moods- you know happy one minute and sad the next. In your other post, I did understand correctly - to stay away from SOS ? I feel like I'm gonna lose my mind with all this research. Also, have you heard of a Attorney by the name of M.Longstreet ? Someone in the medical field suggested him, and was kinda hoping for more info on him.
Hope this week is better for you, let me know how things turned out .
Chris

Like/Dislike
0

Hi Chris,
Thanks for keeping in touch. I had the nerve conduct test on Monday which was not nearly as painful as I thought. Actually, the nurse student at the ER who couldn't get an IV in was much worse! They found at the study that I did have more nerve damage than the MRI showed which at least makes me feel like I'm not crazy or a hypochondriac. I then saw a PT yesterday to ask about RSD and a PT program since the ortho has not mentioned it. He was terrific!! Very experienced and helpful. He gave me some exercises (every 30-90 min) and is working at moving the disk back into place so the nerve can regenerate itself. I'm not sure if it will work but I'm willing to give it a try before more medical interventions. I feel like at SOS I'm merely a number and they have the same protocol for everyone regardless of symptoms. The PT and Chiro said I should have been doing PT already which I agree. Also, he is positive it is not RSD (whew!!!) but typical nerve damage. Hope you are getting some helpful answers also......

Shari

Like/Dislike
0

Rozalee,

Hi. How did the test go? I just read your kind response. I'm sorry your back pain is hereditary. I inherited a rare skin disease from my grandmother, so I in a similar boat with you. . . if that makes any sense. I'm glad you were not in an accident though. Those can definitely be traumatic.

Let me know when you get a chance!

-Grace

Like/Dislike
0

Rozalee,

Hi. How did the test go? I just read your kind response. I'm sorry your back pain is hereditary. I inherited a rare skin disease from my grandmother, so I in a similar boat with you. . . if that makes any sense. I'm glad you were not in an accident though. Those can definitely be traumatic.

Let me know when you get a chance!

-Grace

Like/Dislike
0

Oh dear, I posted it twice. I don't know how I did that!

Like/Dislike
0

Hi Grace7777,

The myelogram was nothing like I thought it would be! I was so terrified but there was nothing to it! He said he did not see any major causes in the nerves that would be causing this much pain but he was not so nice about it. Any time I tried to talk or ask a question, he would cut me off! I think that maybe he just not want to deal with patients any more or maybe it is just me?? I do not know but I have had enough of being treated like this. I have an appointment with my pain management doctor next Tuesday to find out what my options are after all these tests. He is more sympathetic then my neurosurgeon doctor is. All I know is that from the thoracic mri there are 4 bulging discs and there is one bulging disc in the lower back and when one of the other discs in the lumbar section was herniated and I had some surgery done from the neurosurgeon. When I started complaining of pain about a year ago is when he just sent me to the pain mangement doc without telling me anything with the exception of his nurse saying "there is nothing else we can do for you". Unfortunately there is only one neurosurgeon practice here so a second opinion in this city is probably out of the question. I am thinking about trying to contact someone outside of the city limits. I just want to see what the pain managment doctor says before I do any of that,

Thank you so much for asking.

How are you doing?

Like/Dislike
0

Hi Shari,
Glad to hear you found some answers, I'm still looking LOL. I'm so grateful that I had your opinion on them, before I wasted more time. Glad to hear also that it's not RSD- it really is a scary one. I've been down for the past 3 days with my back, it happens every so often- same pain as before ( when the disc L5-S1 was herniated).. I did get 2 referrals last week- one to an Ortho in Syracuse and another for a different PM doc. I can't wait to get in to see them. I'm hoping that 2 new set of eyes/minds - will be able to get me some solid answers. My back so bad right now, if I even more slightly - the muscles start to spasm - nothing is helping ie. heat, ice, tens unit, rest...... maybe another day or so- and I'll be at my usual level of pain (which right now sounds great ) LOL.
Hope you have a great wk and that the PT is working for you :)
Chris

Like/Dislike
0

Hi everybody...Thought I would give you all an update on my situation. Gosh this has been such a long road! I now have a new pm doctor and I think I am finally getting somewhere! My doctor is is getting me approved for the spinal cord stimulator trial! When I thought all hope was lost and I was never going to have a normal life again, I feel like there is a little light at the end of the tunnel. Have anyone of you had the spinal cord stimulator and if so how did it work for you?

Thanks everyone!

Like/Dislike
0

I am glad things are going better for you. You might want to look into an orthopedic surgeon that specializes in backs. Research the doctor before going to them. I am in NC and starting out seeing mine for a second opinion and now he's my primary (though his PA is a quack!) I have had an L4/L5/S1 fusion from a grade 2-3 spondy. Not quite the same as yours. My doctor tells me the pain is different in everyone, and I still have leg numbness and the tinglies all the time. Be careful what exercises you do in PT as some weightlifting machines are bad for backs, which I learned the hard way.

Most good orthopedic surgeons are not pro-surgery until all other efforts have failed. Good luck!

SHOW MAIN MENU
SHOW SUB MENU
Cancel
Delete