I posted on the neuropathy board several months ago, but have never posted here. With all the experience everyone has had, I'm hoping someone may be able to help me.....
I've had severe leg pain over the last 7-8 years. I was seeing a neurologist who had me taking Neurontin (eventually went off of it) and also several antidepressants. (not a whole lot of help) A few months ago, I had an emg done which "didn't show nerve damage" in my feet or calves. The doctor said he didn't have to go farther because if I had neuropathy, it would show in my feet first. (?) Okay.... I don't want to bore you with a long story...but I was feeling pretty hopeless.
In early April, I had severe lower back pain. This was really the first time I experienced anything like this. It lasted about a week, and was given a round of steroids. It never completely went away, but it was much, much better. Fast forward to 6 weeks later.....severe lower back pain again, along with pain running down the backs of my legs. Holy God.....miserable. I was given another round of steroids, which again helped (for awhile). Here I am again, same situation. I've never had back problems, it was always my legs...I guess now it's both. So, my question (finally)....
I saw my doctor last Friday (5/27) and he said he was going to increase the steroids, but he doesn't like to give patients more than 3 rounds of steroid meds. He also ordered an MRI, scheduled for this Friday, 6/3. I did have an MRI last September of 2010, showed 2 bulging discs (sorry, don't remember the exact placement number, but do know it was right at the bottom of my lumbar spine) My doc is wondering if anything has changed, and also wondering if my pelvic adhesions are playing any part in this ordeal. (MRI will be of L-spine and pelvis) I do have very severe pelvic adhesions and have had numerous surgeries to help alleviate them. Every time I had a surgery, the adhesions were worse than the previous surgery. The last surgery I had for this was about 20 years ago, so I really can't imagine how things look in there now. Unfortunately, I was never able to get pregnant due to the adhesions, other than an ectopic pregnancy which ruptured. Side note though....I adopted the 2 most amazing kids in the world. My question is this: will pelvic adhesions show up on an MRI? And...do I need to mention my history of the adhesions when I go in for the MRI? The surgeon who performed my last pelvic surgery informed me that "it's as if someone threw a net over my pelvis.....everything was completely bound down and unable to move freely". (hard to forget those words when I was searching for hope with the infertility)
I guess I'm just trying to put the ever-frustrating puzzle together. I don't want to keep dealing with this leg pain, but the answers/diagnosis aren't coming easily. Any suggestions, insights, or sharing of your own experience would be of big help to me. Thanks to all of you....
After you get the MRIs, I think you would be well-advised to see a fellowship-trained spine surgeon...this would be either an orthopedic spine surgeon or a neurosurgeon who devotes his practice to issues of the back and neck. It is possible to have leg pain as the only symptom for certain back issues.
Also, some pelvic issues have the same symptoms that are usually associated with a lower lumbar disc herniation. The lower lumbar nerves innervate the genitals, bladder and bowel, and run through the hip and pelvic area, buttocks, leg, ankle, foot and toe. Put very simply, a compression of the nerve in the spine can cause pain in any of these areas.
You do not need to mention the adhesions as I don't think it would make any difference in what the technician does. On the other hand, it wouldn't hurt to mention them in case it does have some relevance. And you would certainly want to tell a spine specialist about those surgeries.
The toes on both my feet starting going numb about ten years ago. Without any testing, I was told I had neuropathy. I continued to believe that was the case right through my first back surgery in 2008. At that time, I consulted with an interventional pain management physician who asked me how the neuropathy had been diagnosed...had I had an EMG? The answer was no, and I was on my way to have an EMG. Turns out I never had neuropathy. All my problems were coming from my lower lumbar issues....
Perhaps you have a similar situation. It may be that one of your discs is either causing nerve compression or nerve irritation, or you may have some other condition in your spine that is causing a problem with one of the spinal nerves. The MRI, combined with a work-up with a spine specialist, should help you put together the pieces of the puzzle.
Please come back and let us know if they come up with a diagnosis....
I posted here a couple of weeks ago with some questions about my scheduled MRI. I wanted to post my MRI results to see if anyone has any insights - I so appreciate and respect everyone's personal experiences and advice. I'll share the results of the MRI that were discussed at my follow-up appointment:
Disc bulge at the L4-L5 level
Benign hemangioma within the S3 vertebral body
Patient's pain most likely related to edema which shows enhancement at the insertion of the hamstring tendons on the ischial tuberosities bilaterally, right greater than left. Possibly with a fall or subsequent trauma there has been partial stretching or strain of the tendons at the insertion site creating enhancement and edema. Disruption of the tendons or fracture of the ischium is not seen.
Okay....I guess those are the main points. During my MRI, the tech and the doctor chimed in on the speakers while I was in the "tunnel".....They asked, "Did you recently fall or have an injury?" I replied that I had fallen in January. That test seemed to go forever (2 hours) - they had to tape my feet together because I can't lie down with my legs pointing in the direction they wanted. By the time I was done, you could have sliced my thighs wide open and I doubt I would have felt it. Numb....yikes. But that's what happens anytime I lie down flat on a hard surface (or if I sit for too long) So, my doctor calls me a couple days later and asks me to come in to discuss results. I THINK understand, but not really sure. That's why I'm looking here for your insights.
While I did have a fall in January, my severe low back pain along with pain in buttocks and down the back of my leg didn't start until April. ?? My doctor said the results indicate what is causing my pain, but he's concerned about the numbness. I guess there's no pinched nerve or it would have shown up on the MRI. I've had problems with my legs for years....but this pain is truly awful. He gave me Tramadol 50mg to try and see how things are for me this week. (So far....no better) I feel bad because I've seen the major injuries and back issues people on this board have.....surely far worse than me. That being said, I'm feeling a little lost...and frustrated. Being in pain starts to eat away at me, perhaps the lack of sleep only adds to the ordeal. In my original post in May, I had asked if adhesions would show on the MRI, because I know I have a very severe case of pelvic adhesions (many surgeries and infertility) - Doc thought maybe the adhesions were playing a part in all of this.....but no mention of adhesions on the MRI. If I could get pain relief, I might be willing to just deal with the numbness and twitching in my feet. I better stop....I can sense I'm rambling...sorry. It's nice to have a place to vent. Thank you everyone.
[QUOTE=tetonteri66;4777017]Do you have a copy of the radiology report? If so, please post it so we can see it in its entirety.
What type of doctor are you seeing and who explained the MRI results and made the diagnosis?
Seems like there are some missing pieces here!
Where is the pain in your legs located? What happened when you fell? What symptoms did you have in the first several days after your fall? You had the leg pain previously, right?[/QUOTE]
Thank you tetonteri66 for your response....I'll try to answer your questions. I do in fact have a copy of the MRI report (although very blurry and somewhat difficult to read) I don't think I'd put the whole report on here, it's almost 3 full pages. I relayed to the board what points were discussed at my appointment. I relayed them exactly how they're written on the report under "IMPRESSION", but I didn't include the points that weren't "important" - such as "no abnormalities seen" or "no soft tissue masses are seen"...etc...
I had been seeing a Neurologist for the last 8 months or so. During that time he ordered an MRI (Oct 2010) and told me about the bulging disc at L4-L5. He said he didn't think a bulging disc would create the amount of leg pain & numbness I was having. He never discussed any other part of the MRI, and I never got a copy (I know......too trusting on my part) That MRI was of my entire spine. He then tried several antidepressant medicines (along with the Neurontin) but they didn't help. He sent me for an EMG - which apparently was negative. When I fell in January, I started to walk outside and I started to bend over to get something. A pain shot through my right leg and I physically over-reacted. I straightened out too quickly and fell backwards, on my back, onto cement (I did have a winter jacket on, may have softened the blow a tiny bit). I had a severe backache afterward, and called my Neurologist later that week. I explained what happened (at that time I could barely turn or bend) He didn't do anything. He said (ever so compassionately) that he felt so bad for me.....and suggested I try Pain Management. He never prescribes narcotics, maybe why he wanted me to try PM, who knows. I struggled with this decision for weeks, didn't really want to do it. When I finally called the referred pm doctor, it was at least a 3 month wait. I declined. Then in April I woke up with a horrific backache (lower back) and severe pain running down the backs of my legs and buttocks. It was absolutely awful, and of course it was on a weekend. On Monday, I tried to get on with my Neurologist but he had just returned from a vacation and didn't have an opening. So, out of pure desperation, I call my PCP and he sees me the same day. He gave me steroids and pain meds. The pain subsides after about a week or so, never completely goes away, but improves greatly. Shortly after that, I go for my checkup with my Neurologist (previously scheduled). I actually see my Neurologist at the same office as my PCP. I asked him for guidance. What should I do? I told him about the severe backache a week or so before. I told him I saw my PCP and how he handled it. I brought both prescriptions with me. He said, "Is it helping?" I said that things had really improved, to which he replied, "Then that is exactly what you should stick with". He said I should check back in with my PCP if anything like this happens again. It did....a few weeks after that. My PCP had me take another round of stronger steroids, and one more round following that when symptoms weren't going away. He is the one that ordered the MRI of my lumbar spine and also of my pelvis (because of my history with adhesions). This is where I am now. I've relayed what was discussed about my MRI. I did go back over it to see if I may have missed any vital information....the only other thing I saw was: "There is abnormal high signal intensity on T1 and T2 weighted images within the S3 vertebral body which is unchanged from the previous study and is felt to be a benign hemangioma". I did include the mention of the hemangioma when I relayed the findings before, but really didn't know if this sentence is of any importance.
I feel as though I'm writing way too much (boring for you to read) - but also feel like it may be an opportunity for feedback, so I'm trying not leave anything out. When I went in for the MRI - they had the order from my PCP with a diagnosis of "back pain and radiculopathy". It wasn't until I was in the actual MRI that I was asked if I had fallen or had some type of trauma. I explained about my fall in January. They came in and asked me what was done at the time of my fall - I said "Nothing really". The tech said "You're going to get some answers about your pain after today" Of course they shouldn't say anything at all, but she did. She asked if I've had constant pain since January..I said No, things didn't surface again until April (the backache) She said something like - you have a badly bruised bone. (never even heard of that) Now I'm really confused, no mention of a bruised bone on the MRI. On top of that, the MRI report states: "Indication of MRI - Low back pain and bilateral leg pain since January 2011 when the patient fell. The pain is on and off." Huh??? That isn't what got me to have the MRI, but the fall came up during the MRI. Are you following this? I know, clear as muck.
I agree, things are not seeming to add up. Yes, I've had leg pain for years, along with recurring numbness. The smallest 2 toes on each foot have been numb for a long time.(no big deal) The pain/leg cramps can wake me up at night. I would give anything to have an answer to all of this. Since my backache in April, things are going downhill. I continue to struggle with pain running down the back of me legs which at times is excruciating.
Thank you for your time......and for your effort to help me work through this. I do appreciate it.
I think it might be time for you to have a consultation with a spine specialist. This would be either an orthopedic spine surgeon or a neurosurgeon who devotes his/her practice to issues of the neck and back.
It sounds like that pain you felt right before you fell could have been the disc herniating. You really cannot tell from a MRI how much pain a particular irregularity may be causing. Sometimes a patient will have a huge herniation and not even be aware of it, where a tiny herniation can be a major pain generator.
The first symptom I had of approaching back problems was numbness in my toes. I was originally diagnosed (without any further testing) with peripheral neuropathy. Then I developed plantar fasciitis in one foot. This occurred a good three years before I had even the slightest twinge of back pain. I won't bore you with the details, but it was six months after my first back surgery that it was determined I didn't have peripheral neuropathy at all...that the numbness was caused by the nerve compression in my lower lumbar spine.
A fellowship-trained spine specialist has the knowledge and training to be able to put together the various diagnostic pieces of the puzzle, to, hopefully give you an accurate diagnosis. Surgery will be a last consideration, and only if and when all conservative treatments have been tried and failed.
Leg pain can be a symptom of a number of diseases...but, it is a common symptom of a lumbar disc herniation. The nerves that control sensation and movement are based in the spinal cord and the signals run back and forth from the brain. The lumbar spinal nerves exit the spinal cord and go out to the lower limbs, and also supply sensation to the pelvic area, genitals, "hips" and buttocks. Each lumbar nerve innervates a particular area. These are called dermatomes and you can look online for a dermatome map to see a diagram of which part of the hip, leg and foot is affected by the L4 and L5 nerve roots. If the big toe is numb, for example, a doctor can make the association and will know to check the L4-5 vertebrae for a problem. He will suspect that there is some compression of the L4 nerve.
A neurologist, in my opinion, is not the right person to be assessing you for what could be a mechanical back problem. I lost a year's time while dealing with my PCP because he felt he was qualified to look at my MRI and make a diagnosis. He kept assuring me that I had a couple bulging discs but it was nothing more than most people "my" age showed on MRI. He said I shouldn't be experiencing as much pain as I was describing to him. What he didn't notice was that I also had a spondylolisthesis which was causing instability in my lumbar spine. In some cases this condition doesn't show up as well on MRI...you need a flexion and extension X-ray in order to diagnose it.
I would like to really encourage you to make an appointment with a spine specialist. It may turn out that this specialist will find nothing that is responsible for your leg pain, but at least then you will know, and can start looking in another direction.
Thank you so much for your time in trying to help me. You made a lot of great points. My PCP actually suggested I see a "Specialist", but I think he was giving me a week or so to let things soak in and determine what my next step will be. It's scary to see someone new.....I feel some doctors can be cynical when a patient claims to be in pain if there isn't a visible wound or injury they can see in front of them. That's me though.....I'm not comfortable explaining my pain for fear a doctor will think I'm after narcotics, which is not my intent at all. My PCP is a wonderful, caring physician, but clearly stated that this is getting beyond his 'expertise".
I started to see a Neurologist for leg pain/numbness about 8-9 months ago. I think I was referred to him more for the numbness than anything else. Like I said though, when my emg was negative, he just about....gave up.
If I may ask you one more thing...do you know anything about a hemangioma? When the doc went over this point, he explained it's probably affecting a lot of blood vessels around it. But, what exactly is it? Sorry to ask for more help, you've been so kind with your replies. My frustration only seems to build, had a terrible night last night...very uncomfortable and not able to sleep much. Again....I'm grateful for your insights.
I'm happy to try to help you...at least share what I know (or think I know! Obviously none of us are doctors...but you learn as you go along and I ask a lot of questions....)
A hemangioma is just a big word for a a bunch of blood vessels that have gathered together. Have you heard of a strawberry birthmark? That is a type of hemangioma, but it is located on the surface of the skin rather than "inside" the body, or inside an organ. When it is located in the spine, it is a type of benign tumor. Sometimes they develop after surgery (I had one near my incision after my first surgery. They can fill with liquid, but usually go away on their own after a couple weeks, as the body reabsorbs that fluid.).
While they are benign, this does not mean that they are without the ability to cause pain! Just like anything else that takes up space in the spine that is needed for the nerves to pass freely, a hemangioma can press up against one of these descending spinal nerves and cause leg or back pain. In fact, pain is usually the first symptom of a tumor. They can also cause "spinal or arm weakness and numbness, sciatica, partial paralysis, clumsiness, spasticity, bowel or bladder problems, or spinal deformity. Symptoms may develop gradually or appear suddenly, and symptoms usually worsen unless treated." (from the NIH).
Without knowing more about your tumor, it is hard to speculate...but, it could be that you've had it for a long time and that when you started having leg pain, it was when the tumor grew large enough that it began pressing on a nerve....Maybe it isn't responsible for any of your pain....but since the doctor doesn't know the cause of your pain, it is worth exploring any abnormality that has shown up on testing. (in my opinion!!)
Don't be afraid to go to a specialist. I would suggest you look for an orthopedic spine surgeon if you have any in your area...this is not a general ortho who replaces joints, or repairs broken bones. This is a specialized ortho who only deals with necks and backs. As I mentioned earlier, don't let the word "surgeon" in their job description scare you. Almost all of them will work with you to find the problem and will only consider surgery as a last option. They have enough patients who really require surgery without recruiting new patients who do not.
Don't go in requesting drugs or even making pain the emphasis of your conversation. You have plenty of other things to talk about without focusing on pain. The fact that your legs are numb is reason enough to be there -- and you can just say that your PCP advised that he was stumped by your collection of symptoms.
Some doctors will assume that a patient is drug-seeking and that is very wrong...but it happens, esp. with younger patients. If that should begin to happen, speak up. Tell the doctor you are not there to request pain meds...but that you need some answers...why am I getting numb?? Is this potentially dangerous? What is causing it to happen and what do we do about it? If necessary you can explain how this is effecting your everyday routine -- like you can't walk, can't perform your job...whatever it is....
I personally have not had luck with neurologists, in general. They are great at what they do, particularly for testing and dealing with disease of the nerves such as Parkinson's, stroke, etc. But when it comes to diagnosing a back problem, they haven't been trained to deal with the whole "picture" (the whole structure of the spine)...mechanically how it works and what can go wrong to make it not work as well, etc. --- the bones, soft tissue, etc....
If you want to send me a PM and let me know what part of the country you live in, I could help you find some names of specialists...if you're not in the U.S., I don't have that ability!