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    Old 08-09-2006, 08:46 AM   #1
    Sage48
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    Help with decisions....need your advice

    Hi all,
    Have posted several times previously, but this is a really important post for me. Briefly: fell almost 4 yrs. ago. herniated C5/6 (acdf 1/04), ongoing lower back and leg pain, intermittent cervical symptoms. Sorry this is so long, I have put the results of MRI's at the end of post....they are showing differernt things...or not....need your help in making decisions...or suggestions...thanks to all.

    ok, here's my current problem:

    Have been in Pain Management for my lower back for over a year. Have had several MRI's in the past 2 years for the lumbar, cervical, and what the heck they threw in a thorax MRI (little expensive, don't you think) My problems started approx. four years ago, after I took a bad fall.

    Every MRI comes up with a different diagnosis, even the one I had 2 weeks after the MRI at the Mayo Clinci. HOW can that be????
    The neurosurgeon was looking for compression in my spine, due to a lot of my symtoms, but it didn't show up on the Mri's. But, other stuff did show up. During my last appt. with my Pain Mgmt. Dr., his attitude felt different...he said that because I had not done overly well with the Epidurals (they only worked for a short period of time, the best one was the transforaminal, at the site of the lateral herniation in my lumbar area), he increased my oxycodone 10/325 to allow me to take it 4 times a day ( I try to take it only 3 times a day, except for increased pain, you know, those really bad days) I was told that by my next appt. my pain levels had to be down to 1 or 2, (that doesn't happen...maybe a 4 or 5...rarely no pain) OR,
    1. we find another neurosurgeon who will investigate (I do have lateral herniation touching nerve, but my syptoms are more to the right side than the left)...and other little goodies in the lumbar area)
    2. continue with medications, to control the pain
    3. have the pain stimulator device placed in my back (this is not something I want to do, after reading up on it, I try to stay active, and when I have one of those "good" days, I tend to overdo it, I'd probably pull the leads out or something like that.....I drive long distances, and it says something about not doing that....also have had abdominal adhesions in the past, and do not want to cause them to return.
    4. find a new pain mgmt. Dr., because my current Dr. has tried everything...(geez, what about a discgram?, I'd be willing to do that, if it helps diagnose pain and symptoms, know they hurt, but if it solves the problem of what's causing pain, I'd do it.) He also stated that maybe new Dr. might have different ideas.

    I felt so abandonded...I've done everything asked, taken meds., which I was totally afraid of, had side effects from them, but did it anyway, had all of the injections...etc. My current Dr. is the one who has stood by me up until this time...felt that he was my advocate....now he's had it, burnt out...

    MRI of lumbar 6/14/06 Lumbrosacral area
    L4/5 left intraforaminal disc herniation with moderate to marked impingment of the left sided neural foramen. Minimal disc bulges at L2/3, L3/4 and L5/1 Moderate facet arthropathy at L5/S1. Mild facet arthropathy is present elsewhere in lumbosacral spine. Mild facet joint enhacement compatible to mild facet synovitis at L5/S1 bilaterally Min. facet enhancement is present elsewhere in lumbrosacral spine. Mild discogenic degeneration is otherwise present throughout visualized spine with T2 signal loss of disc spaces...compatable with disc desiccation multilevel mild schmoral's nodes throughout visualized spine. presumed small vertebral hemangion is present at T11.

    Cervical MRI 6/15/06
    Fused C5/6 area (ACDF 1/04)
    Small herniated disc is present at T2/3, left paracentral, with small extruded fragment. Minimal endplate spur and disc bulge iat C3/4, min. disc bulges at C6/7 and C4/5. Vertebral hemangiomas at C7, T2 & T3. (when I had the ACDF on C5/6, I had been through a lot of problems getting a diagnosis, they discovered a far lateral herniation at time of surgery, which hadn't shown up on any test..MRI, CT, X-ray...milogram etc. Surprised them...even the neurologist didn't find anything wrong...)

    MRI Thoracic Spine 6/29/06
    T1/2 normal
    T2/3 normal - how can that be??? prev. MRI showed herniation????
    normal right throut T11/12...min. central osteophyte or disc slightly encroaching upon thecal sac without lateralizing component or effect on cord

    Have more MRI's taken in the last year, but they are basically saying opposite stuff to each other too....

    Stupid question, what happened to T2/T3 on 6/15 MRI, on the second MRI????

    As you can see this is very frusterating, and upsetting...I don't want to go to another PM dr......I just want to get out of pain...

    I thank you all for reading this, and for any answers you may have to offer, I am just felling so discouraged this week, I have to have answers by my appt. later on this month, and I just don't have any. This board is great, the support, information and just "being there for each other".

    Sage

     
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    Old 08-09-2006, 09:53 AM   #2
    momzworkin
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    Re: Help with decisions....need your advice

    Hi Sage-welcome to the boards! You will find lots of friends and support here. I had MRIs and lots of conservative therapy until the Fellowship trained(VERY IMPORTANT) Orthopedic doctor I was seeing sent me for a discogram. It can be the most painful but most revealing test of your life. My radiologist was one of those guys who gave no sedation to try and recreate the real pain but it was a much more definative picture of what was injured and where. I wish I had done it before all the MRIs,xrays,phys.therapy and injections. There was no choice for me but surgery after the test but that is me, not you. Ask your doc about it but as everyone will testify here whether it is Neuro or Ortho make sure it is a SPINE SPECIALIST! My doc does spines only. Three weeks after surgery today I took my daughter to her first day of 8th grade! Except for severe leg cramps I am up and around and acatually made my family dinner last night! Keep us posted!
    Michelle

     
    Old 08-09-2006, 10:20 PM   #3
    sandim
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    Post Re: Help with decisions....need your advice

    Hi Sage,
    Nice to meet you.
    I can't explain why you got different interpretations of your MRI's so close together. I had 3 MRi's , three CT's and a myelogram, and even the stupid myelogram report and CT scan done within minutes of each other said different things and they were read by the same radiologist......... He also did the myelogram, and said inside the room, that there was moderate to severe central canal stenosis at two levels ( the dye stopped at two levels except for a tiny line of it at the very back of the spinal cord ). They did the first CT scan, the same thing was showing on the monitors, so they sat me up and redid the CT scan again...well some of the dye moved down a bit thanks to gravity and time ..........suddenly there was no central canal stenosis.......
    I understand your frustration, but maybe the best thing for you would to be to seek another opinion, and maybe start with the discogram there if the new doctor can't figure out what is wrong. I'm sorry you have to go through that.
    Best wishes to you,
    Sandi

     
    Old 08-10-2006, 04:49 AM   #4
    Sage48
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    Re: Help with decisions....need your advice

    Thank you Michelle & Sandi for your replies.
    I have been going to my Dr.s for the past 1 1/2 regarding my lower back....& more recently for my returning neck and shoulder ache. I was referred back to my spine neurosurgeon, who does deal only in spines, last year...he said that my pain in the lower back should be more painful on the left side...and to return when and if it does affect that side more...until then he can't help me....this spring I was referred to another neurosurgeon...who seems to be looking for compression in my spine to explain my symptoms.
    The MRI's that I have had all seem to vary in the diagnosis...which is driving everyone up the wall....no compression noted...so the 2nd neuro. seems to have lost interest, after he spoke with my Pain Mgmt. Dr., he also seems to have distanced himself...or so it seems from my last visit...very discouraging.
    I am going to ask him about the discogram at my next visit....also, because some of the MRI's seem to suggest facet arthritis, I will ask about possible pain from them.... I do not want to be on medications - but I really have no choice, quality of life issues. I do have to be very careful about the steroids, because of previous injections, & use, my adrenal glands have been insuffient...and I take meds. for them...(fortunately, they are recovering...but I have not been able to have any more injections since last year---I was very sick, and the drs. could not figure out why...even my heart had been affected by the lack of hormones from the adrenal glands...finally my husbands endro. dr. figured it all out...he is so observant & smart!!)
    I will ask my PM dr. if maybe the discogram will be something we should try....I will suffer anything short term...just to resolve all of this..and hopefully "get back to my life!!"
    I'm just so concerned about my next visit to my Pain mgmt. dr...I felt like he was giving me warning that he is going to drop me...and I've been going to him for over 3 years...(for my cervical spine first...and now the lower back...and all of this was due to a fall...) I feel abandonded already.

    I appreciate all of your advice....and for your concern. Just for being there and understanding what I'm going through. The people on this board are wonderful...because they care and undertand what it is like ....thank you all!

    Sage

     
    Old 08-10-2006, 06:03 PM   #5
    webdude
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    Re: Help with decisions....need your advice

    To be honest the only one that can really answer that question is to ask the doctor as to how 2 MRIs show different results at T2/3.. Most likely it was misread, but you need to know which one is correct..

     
    Old 08-11-2006, 05:14 AM   #6
    Sage48
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    Re: Help with decisions....need your advice

    Thanks for your reply Webdude,
    Yes, it is confusing about the different opinions on my MRI's. I have asked the question about how they can be different in the past..haven't seen my PM Dr. since the last MRI of the thorax..will see him later in the month. At one point, I brought all of my MRI's to my PM so that he could have another radiologist read them, well, that didn't get done, and I had to pick up the MRI's so that I could take them to my Neurosurgeon, who basically blew me off with the statment, when you get more pain on the left side, come back....
    In the meantime time I have had a couple of major pain events, bed for several days each time, but by the time I got an appt. with PM dr., I was getting better....but he did increase my pain meds. Still, it's discouraging, not to know what is exactly causing this pain in my lower back, down into my legs, worse on the right side....At times I just accept it, other times, like now, I am mad....and need to know what the problem is.
    Sorry to dump all of this on you, and all of the Board, but I know you all have an understanding of how I am feeling. Thanks again for your support.

    Sage

     
    Old 08-11-2006, 08:28 AM   #7
    technomom
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    Re: Help with decisions....need your advice

    The readings on the MRI are only as good as the doctors reading them. Did your doctor read them himself or take the work of the radiologist? With my last MRI the radiologist said he saw some scar tissue, but my doctor said reading was wrong. It's a reherniation.

     
    Old 08-11-2006, 03:47 PM   #8
    Sage48
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    Re: Help with decisions....need your advice

    Hi Technomom,
    Thanks for your reply.....I do believe that my neuro. read the MRI....
    My first neuro....said that the L4/5 was the one that should be causing me more pain.....(the right side is more painful...but the left is getting worse)...unfortunately, it's the lower back....right buttock...side of theigh, and outside of shin into ankle and foot that hurt and ache.....the left side aches also...but not as bad. I do also get kind of a surface numbness on the outside of my shins, and across the top of my insteps. (think some of my toes too..) First neuro...said to come back when the left side was hurting more....second neuro...has been looking for compression in my spine, due to the symptoms...so I just get the impression that he is blowing off the herniations....etc...

    When I fell I twisted both my cervical and lumbar areas. The cervical area acted the same way as the lower back, only it only hurt on the right side...eventually (16 months later...I had surgery at C5/6...and they were very surprised to find a far lateral herniation....this herniation hadn't shown up on the MRIs, Mylograms or anything else...they thought it was just a regular herniation....

    That's why I keep telling them, I know that it's something that isn't showing up on the MRI's .... if you look at one of those small hernations,,,,especially if your track down the correct nerve pain...I bet it's the same situation...but they just think I'm dumb...to even suggest it.

    As far as the reading of the MRI's....radiologist does it first...reports it...then when I went to neurosurgeon he looked at it too.....still don't understand how the MRI's can be so opposite of the previous ones....but I will be asking my Pain mgmt. Dr. how this can be....it is so opposite. Very, very discouraging....I feel like I am running in place, and I am tired of it..want a firm diagnosis.....get on with some kind of treatment, hopefully, and maybe the pain will lessen...(geez, that's what we all want on this board)
    Sorry to ramble on....I sometimes can't help myself...
    Thank you for replying to my post.....

    Sage

     
    Old 08-13-2006, 07:35 AM   #9
    webdude
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    Re: Help with decisions....need your advice

    It is very discouraging to know that doctors can be so lax at our diagnosis... It seems that if it isnt a problem that smacks them right in the face, they dont want to take the time to figure it out. I had similar experience, where I kept insisting on getting an MRI of the thoracic spine, and they kept insisting that it was lumbar and could not find anything there... Finally, they gave in an guess what? I had a herniated T11-T12... THey looked like fools..... Why cant they LISTEN to our problems and pain and try to help us instead of just rushing through it?

    Just keep pushing them until they listen... Dont accept their lame direction if it doesnt make sense..

    God Bless..

    Mo

     
    Old 08-14-2006, 05:12 AM   #10
    Sage48
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    Re: Help with decisions....need your advice

    Thanks Webdude...

    Yes, the answer is there, but sometimes it just takes too much time for the Dr.s to investigate further...they have done the ususal tests, but when the answer doesn't pop up, they kind of give up.

    I had someone once tell me, "the Doctors are looking for the fast answer, and when it doesn't show up in a reasonable amount of time, they get discouraged (and we don't??), so then they shift you to the back of the pack".... guess that is what is happening to a lot of us. They get burned out trying to figure out what is wrong..but we are human beings, and we hurt, and we deserve answers....not geez, maybe a new doctor will have more ideas and be able to figure out your problem.... I didn't go to that dr.....I came to you....sorry...why don't you ask that Dr. what he thinks....but don't send me away....

    oh well, another day, etc. Thanks for your reply, it does help having others understand what is going on...sorry that we are kind of all in the same boat.

    Sage

     
    Old 08-20-2006, 10:36 AM   #11
    webdude
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    Re: Help with decisions....need your advice

    Exactly.. They give up if it isnt in the top 5 category of potential problems that they can treat easily.. My doctor recommended me to a pain specialist right away.. It was his way of dumping me to another doctor. This is why I try to be a pain in the *** and just dont take their crap as politely as I can.. With the help of this forum, we can get ideas and then have the ammunition to go back to the doctor and say "what about trying this or that?"

    Then, they sort of agree...

    God bless

    Mo

     
    Old 08-20-2006, 01:32 PM   #12
    Sage48
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    Re: Help with decisions....need your advice

    Yes, Webdude...

    This is why I am going to ask my Pain Mgmt. Dr. about the discograms....I have never had one....to find out which disc is the one that is making me hurt. This is an option (test) that has never been suggested. Heck, I'm the one who will possibly be in pain....and I'm willing, just to find out some answers.

    I had a bad day today....pitty party time...which is another post...but it is getting better. Thanks to everyone for their replies and concern, I am feeling less frusterated...nice (not for you guys) that others understand/have experienced this stuff. These boards are great, the info., sharing, caring is wonderful...

    Let's hope for a better day tomorrow.

    Thanks all.

    Sage

     
    Old 08-21-2006, 08:26 AM   #13
    charliecat31
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    Re: Help with decisions....need your advice

    Hi Sage!
    This is just my opinion, but maybe seeing another PM doc isn't such a bad idea. If this guy hasn't brought up a discogram, says you must be down to a 1 or 2 pain levels (oh I dream of this! ) by the next appt., etc. then maybe it's time to get a second opinion. Or let him refer you to the neuro and see what happens there.

    I know the frustration you are feeling. For the first 1 1/2 after I hurt my back no one knew what was causing it, nothing really conclusive showed up on test results (until I had a discogram) and one quack even said it was all in my head and that I was just depressed. Another dr just got fed up and discharged me as his patient because I wasn't getting any better. Long story that I won't bore you with. Anyway... My point is that I went through many types of doctors until I found my PM that took my pain seriously and got to the bottom of it.

    Please hang in there! I know it's emotionally and physically draining and I'm sure there are days when you just want to scream at everyone (been there - done that ). But I know you'll get to the bottom of it.

    How long ago did your pain start? Has the doctor had you do anything other than the epidurals (didn't work for me either)?

    Hope today is a better day for you

     
    Old 08-21-2006, 10:00 AM   #14
    Sage48
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    Re: Help with decisions....need your advice

    Thanks for the reply Charliecat,

    I fell almost 4 years ago, took them 1 1/2 years to fix my next (ACDF 1/04) at that time they discovered a far lateral herniation at L5/6....the mri's, mylogram etc. didn't see that....oh wow...)....but when I fell, I also hurt my lumbar area, have been dealing with that since 3/05....much delays...from ex-primary. Have been to my neuro who did my ACDF...he said that there is a far lateral hernation touching nerve at either L4/5 or L5/S1 (can't remember),,,but I am having more symptoms on the right side, not to say that the left doesn't hurt. He said when the left side starts hurting more, come back....well, guess what, it's hurting more since last Wed. when I started an art class...painting.....haven't got a clue why it's really hurting now, maybe position when I was sitting & painting. But the left side is acting up...so maybe I'll have to go and see him....but there is still the question as to why the right side is hurting..
    Was referred to Mayo neur. in May....my symptoms are according to neuro. from compression..yes they did more MRI's...but it didn't show compressions....did show some small herniations & smorals nodes....but they weren't interested in that, basically dropped me when he could not find the compression....am having hyperreflexia in lower legs...
    My pain mgmt. Dr. has been with me since about 6 months after my fall...been very supportive....etc. No, they have only give me the epidurals....and lots of meds. (thank goodness), but the ultimatium at the end of June just did me in. No way is the pain level going to be a 1 or 2...even on my good days with lots of meds...maybe a 3 or 4 then...no 1 or 2...
    Had emg/nerve tests....first one said myolopathy (sp. wrong)...second one could not give an answer....but that's ok....I don't have much faith in those tests....the ones for my cervical area said everything was just fine...yeah, and now I have weakness in my right hand....sure, fine.
    There is a problem....they will have to find it someday...I hope....
    I am afraid to start over with a new PM DR. Went to a new one in 3/05..he was a treat, said to get off of the hydrocodone and take tylenol...would give me injections and lots of thereapy..... I did the tylenol for 3 weeks, then sat in my primary care Dr. office and cried.....nice. Obviously I didn't go back to that PM Dr. Went back to my original one, from when I was trying to get my neck fixed.
    It is discouraging, yesterday was a bad day...but the support I received from this board was so great....Michelle even ate more pie for me....now that was wonderful...(i can't have sugar..) But I enjoyed the thought and effort it cost her....the extra walking to get rid of the calories, I appreciated...it's just the little things...makes you smile.

    I'll get back to you on my visit to my Pain Mgmt. Dr....appt. is Friday..gulp..decision, decision, decisons...

    Thanks for your support...

    Sage

     
    Old 08-21-2006, 02:39 PM   #15
    charliecat31
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    Re: Help with decisions....need your advice

    Sage:
    I'm so sorry things are so rough right now. I went through some tough times with my PM doc, but in the long run sticking it out with him was the best things I could have done. It just makes me angry that yours would give you this ultimatium that you HAVE to get your pain levels down. If you could, you would have done it long ago - correct?? So I don't understand why he thinks by telling you to, you can miraculously feel better. When you see him on Friday, maybe ask him (nicely) what he meant by this. Maybe put it to him like "I didn't really understand what you meant about getting my pain down to a 1 or a 2... was this a goal you were trying to help me reach or something else that I'm not understanding?" In my experience I've found that getting an attitude (no matter how much we want to ) doesn't get me very far... If I put it as if I don't understand it seems to get better results.

    Good luck Friday - I'm so glad the board has been such a big help to you. There are some mighty wonderful people here

     
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