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Pain in both thighs...need ideas and hope!!

AnonymousUserAAnonymousUser Posts: 49,671

Some history first :)

- diagnosed basically 10 years ago with bulging lumbar disk causing numbness and mild pain in left thigh.
- Carried on basically 8 years without much care in the world.
- started getting VERY painful "pins and needles" in both legs in about 2007...like...really....long...pins...far...apart (maybe someone has me as a voodoo doll!) :D
- early 2008 started getting same numbness, more pain, same "need to itch" sensation in right leg as left, but got worse than left pretty quickly.
- started getting shooting pain now and then in right and left thighs, relatively more low back pain, still constant numbness in outer thighs.
- Started getting arch cramps and toes getting locked or spreading out.
- shooting pain and discomfort worst while lying down and standing up (esp after sitting).
- in Dec 2008, spontaneous herniation of C56 and C67, with cord compression so introduced "electric shock" sensations and muscle twitches and lots of arm issues. My neck clearly had DDD (diagnosed in 11/2008)
- ACDF 2/5/09...but still have upper back and left arm pain, electric shock and muscle twitches (a bit improved). Thigh symptoms still very persistent.
- Lost my voice from ACDF and have had a medialization laryngoplasty (injection) to restore some (july 09)
- requested a lumbar and thoracic MRI, but radiologist report said no issue. Neurosurgeon just looked at radiologist report and dismissed, said go to neurologist.
- Neurologist looked at report, started looking at films but computer froze so that was it. Put me on neurontin 3X 3X day. This has helped with some shooting pains and arch cramps but some setting back in. Neurontin did not the numbness or neuropathy (pain upon touch, itching) in the thighs.
- can disrupt sleep and be quite upsetting (esp if it starts itching which I can't "satisfy" and it is numb and hurts all at the same time).
- Upper mid back between shoulder blades also constantly aching.

OK, sorry for that :)

I don't know what to do anymore. I think it would help if I KNEW someone with this expertise LOOKED at the MRIs before just following the radiologist report. I was diagnosed with the bulging disk, had the symptoms continuously for years...now much worse and in both legs. What's the deal?

I should add there is a maternal history of adult onset spinal issues. My mom had scoliosis develop and rapidly progress in her 60s, then cervical stenosis and fusion, etc. Maternal grandmother also likely had issues. So I'm real nervous seeing symptoms in my mid 30s now.

Does anyone have similar leg symptoms or progression and if so, what were you diagnosed with? Were there tests that help diagnose it?

I need to go back to neurologist. I want to have a baby at some point and don't want to be on neurontin :) But I am quite depressed about things overall.

I would appreciate your thoughts very very much.



  • I would suggest getting back to your Dr and getting things going there.

    I know that for myself, becuase I was willing to cope with the pain, in whatever way I could for years, did not really help me. When I commented to my Dr about having this issue for years, he kind of looked at me and said, there is no history. I looked at him and pointed out the issues in 1983 and then listed of years I wound up in ER and that all of this was related to each other. As a pattern, once I drew the lines for him, he began to see that they were related.

    The final piece to my puzzle was a CT Scan, which showed the Severe Stenosis in the lumbar region. That was at least a answer for me.

    I suggest that the issue for yourself is to look at getting focused and spending some time to sort this out. It is not easy!

    Now I know all of us have our down moments, but don't let that get a hold of you too much. Pain has a way of being relentless and once we are down emotionlly, it gets worse because the pain center and the emotion center are linked. For me anger, also increases pain substantially, which is why I move away from that when it comes up.

    I hope your feeling better! David
  • sorry...so sorry
    big question is it from neck or lumbar?
    i had all the progressive symptoms you had. i have had neck and lumbar surgeries. no relief in pain. dont stop hunting for answer. it could be neck or lumbar. my opinion is they should check out lumbar. but i'm no dr.
    the drs should keep looking. get more opinions. good luck.....pete
  • Hi,

    I really appreciate the responses. Sometimes it just seems like it is hopeless. I am a terrible advocate for myself - generally petrified of doctors, and too willing to nod and smile and walk away.

    Based on my time line I am still thinking that there is some lumbar stuff going on, as those symptoms are fairly "classic" and precede the cervical issues by years. But no doubt that the neck has caused other issues (certainly the arms, and likely the "electric shock" and twitches into the legs).

    Looks like I may get a different radiologist to take a look at the MRIs, and for sure they will be given a VERY thorough history (unlike the last rad.).

    My biggest concern is that I would like to have a baby, but if I am in pain now, yikes. The worst thing would be to have a baby, then have them go "oh! there IS something" and then possibly be limited in options.

    Thanks so much. :)
  • I have a suggestion to help with your fear of doctors. When you are ready to find someone to work with you on your spine issues, you will want to look for a fellowship-trained spinal specialist...either a neurosurgeon or an orthopedic spinal surgeon who devote their practice to issues of the back and spine. In addition, find one on the youngish side -- one who completed training within the past ten to fifteen years.

    I consulted with nine different specialists before deciding to have a fusion surgery. I found that the younger docs are much more approachable. Training methods have changed in the last ten years or so, and there is an emphasis on patient education and participation rather than "doctor knows all and must be obeyed without question...and don't you dare ask me any questions because my time is precious..."

    Maybe I have just been lucky but I ended up with two surgeons who seem to have all the time in the world to answer my questions, go over films, explain terms, etc. and to chat about other things, too. When I have come in with a stack of papers, and lists of questions and am a bit apologetic, they will tell me they like patients to be educated about their own issues and to strive to learn more.

    So ask around to find a surgeon that has the reputation of being approachable. You might even call the ortho nursing desk at a local hospital to see who the nurses would go to if they had spine problems.

    Then before your appointment, write some notes so you can briefly give your back health history and draw the connections that you see. Also make a list of questions and order them with the ones that are most important to you at the top. You probably won't get through all of them, so ask the most crucial to you ones first!!

    You are wise to get all of this somewhat straightened out before getting pregnant. Pregnancy puts a strain on the back even in the most back-healthy individuals.

    Sometimes we have to be very tenacious to get to the source of our back problems. Keep going until you find a doctor that will listen to your concerns.

    Regarding your MRI -- when you find that new specialist, take your films with you but do not bring along the written report. The doctor will have no recourse but to look at the films with you. If asked, you can tell him/her you had a copy of the report and thought it was in the envelope with the films...If you have a DVD instead of the films, just tell him/her you don't have the written report. Most of the specialists I went to wanted to see the films and draw their own conclusions. They didn't look at the radiology reports at all.

    Hope some of these suggestions will help. Don't be afraid to see a new doctor. You obviously have issues going on and you deserve to find out what they are.

    Good luck.
    xx Gwennie
  • I hate to say it, but the ortho spine surgeon I first went to was quite young, and HIGHLY intimidating. My friend had said he didn't have the best bedside manner but WOW. And his whole staff was similar (they had my films up and I tip-toed across the room to peek when the doctor left...the PA came in and just pulled them down in front of my face!).

    I am miffed because not only did he not show me the films, but he did not tell me that I had any spinal cord compression. He just said 5-6 was compressing the right and 6-7 compressing the left causing the arm symptoms. Sent me to PT, and even the therapist was like "so, how bad is it?" I couldn't answer. It was obvious to her, quickly, that something was wrong.

    After a month I went to a neurosurgeon. I didn't know of a spinal cord issue until then. I saw the report which said the herniation was indenting the cord. The neurosurgeon was ok, his PA was fantastic. But when I lost my voice it was a bit...go to an ENT, the neck looks good so my job is done, see a neurologist for the legs...and pretty much tossed aside. :(

    Neurologist was nice enough. Quite young, but went straight to the meds without looking at the films. I definitely want off the neurontin soon.

    I had sinus surgery in between for a very deviated septum (which we hoped had caused the cough I developed - but that is probably nerve damage too). The ENT was wonderful. The ENT I was sent to for my voice is ok but I miss the other.

    So it has been a long 8 months facing some of my big fears of doctors (I was with an allergist too, as we hoped the cough was partly that).

    Your comments on bringing notes is so critical. At the neurosurgeon they told me to do that for the pre-surgical consult and they were right :D It makes a difference.

    I just have to, uh, get a real backbone :D (in many ways I guess!)

    Right now the incessant itching feeling on my numb, burning thighs is the worst!! :p Not many people can relate, so I'm grateful for this place!!
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