Here are the rest of the suggestions (had to break into to two parts due to the character limits)
5. Make sure that all records pertaining to your treatment to that point are present at the provider’s office to coincide with your visit. This includes all previous physician notes, hospital treatment records, particularly operative reports. You will usually need to contact the physician offices and hospitals separately to obtain these records as one will often not have the records of the other. Hopefully, the age of the electronic medical record and shared data will eliminate this requirement but we are not there yet. The best way to ensure that the records are present when you are is to take them with you. If you are specifically seeing the provider for a second opinion on surgery, make sure you have a clear statement from the surgeon as to the planned procedure and the rationale for that procedure. You can not get a second opinion if the provider can not review the “first opinion”. Unfortunately, many times physician offices fail to forward records to other offices despite your requests. It is best if you obtain the records yourself if you can. If time and/or distance precludes this option, definitely check with the new provider’s office well prior to your visit to insure that they have received the necessary information. There is a tendency among some patients to want the new provider or physician to “start fresh” without being biased or influenced by the prior records or diagnoses and opinions of others. Unfortunately, while there is some understandable logic in this perspective, the new provider will be severely limited in their ability to evaluate your problem and make recommendations if they can not review clear documentation of the evaluation and treatments you have had in the past. The majority of physicians are extremely conscientious and will make their own diagnoses and formulate their own opinions based on the data 6. As with prior records, make sure that all previous imaging studies and diagnostic test (nerve tests, etc) are available for the provider to review. This includes the actual images as well as the reports. You do not necessarily have to have printed films as most providers can now review images on a compact disc (CD) but it is critical that the provider can review the pictures. Most spine specialists review studies themselves in order to make diagnoses and treatment recommendations. While the radiologist’s interpretations are useful, they do not have the benefit of talking to you and examining you in order to correlate you symptoms and examination findings to the findings on your imaging studies. Unfortunately, most people over the age of twenty have findings on lumbar x-rays and MRIs even if they are asymptomatic. It is critical to correlate your symptoms to the studies. It is also very important to have all the imaging studies that you have had with you. X-rays, MRIs, CT scans, myelograms all have different indications for use and purposes. The do provide some overlapping information but they also provide information that the other studies can not or do not demonstrate as well. For example, MRI scans do not demonstrate problems with bone very well but CT scans evaluate the bone very well. So don’t just take your most recent MRI to the visit. 7. Go to the visit with a clear list of questions that you would like the provider to address and make these questions known to the provider at the appropriate time. 8. Go to the visit with an open mind. Try to listen to the provider’s assessment of the situation and their recommendations without being overly swayed by prior diagnoses or the findings or you x-ray or MRI reports. Good luck and I hope these suggestions help!View Thread
Due to the complexity of the problem, the difficulty in determining a definitive diagnosis, and the invasive nature of many of the treatments, patients with back pain often seek evaluation by several physicians or providers. These evaluations and second opinions can be very helpful and worthwhile. However, if you are poorly prepared for these visits, they can end up being of very limited value. The following are some suggestions for maximizing the benefit from your next evaluation: 1. Pay close attention to your symptoms prior to your visit so that you can communicate them well to provider. In particular, pay attention to the pain that is the most problematic for you. Is the major problem your back or pain in one or both legs? Pretend (and it may not be completely pretending) that the pain in the back and leg(s) are separate problems. If you could get rid of one but not the other, which pain would you pick. If you have pain in both the back and leg(s), how would attribute a percentage to the pain? For example, is the pain 80% in your lower back and 20% in your leg or legs. Pain attention to where the pain radiates or travels and be prepared to describe that radiation to the provider. Sometimes the pain is so severe that it seems everything is involved but try to pay attention to whether the pain radiates primarily down the front, side or back of the leg. Does it regularly go below the knee? If so, where. 2. Pay attention to associated symptoms like numbness, tingling, prickling or weakness. Try to be able to describe or draw out with a finger where you experience these symptoms. Try to determine which joint or joints is/are affected by weakness in the legs. Is it primarily your hip, knee or ankle/foot. Try to separate limitations of the use of the leg due to pain from times when you had weakness with minimal pain. Definitely pay attention to any changes in your bladder or bowel function or habits but also pay attention to any prior history you have had with these problems related to medication usage, stress, coughing, etc. 3. Make sure that the visit with the provider is authorized by your insurer or other provider prior to the visit. In particular, if the problem is due to a work related injury make sure that the visit is authorized. Many times patients want to get an “independent” evaluation outside of the worker’s compensation system. This can be appropriate and can be authorized. However, you can not be seen under your health care insurance for a problem that is related to a work injury. This is an exclusion in every health care policy. The provider may have to refuse to see you that day if the visit is not authorized. 4. Go to the visit prepared to have a thorough evaluation. Arrive at least 15-30 minutes prior to the scheduled visit time to complete necessary registration paperwork. Also allot enough time for the provider to review your prior records and imaging studies (x-rays, MRIs, etc.). This also includes dressing so that you can be comfortable with an examination even if it includes being asked to disrobe and wear a hospital gown. A thorough examination of the lumbar spine often requires the patient be in a hospital gown and if you are self conscious about this during the examination if may limit the providers ability to assess you.
I am sorry that you are going through such a difficult period with your pain issues as well as with phsychological, emotional and family issues in your life. You have already gotten some very supportive and useful advice from other members of the exchange. As you know, this is an extremely difficult and complex problem and there are clearly no simple or easy solutions. Chronic pain is a terrible illness that devestates both the patient and their loved one. The worst part is that often there really is not a "fix" but only things that can make it better.
Unfortunately, your depression has a negative impact on your pain condition and your pain condition has a negaive impact on your depression. It is a very viscious cycle that is hard to break. This is not to imply that the "pain is in your head" but point out that the "pain gets into your head". Studies have shown that people that are under psychological or emotional distress percieve painful stimuli more intensely. In other words, if you perform something painful like a poke with a pin exactly the same way to a person under stress, they will rate the pain caused as greater than someone not under stress (a 5 of 10 intensity versus a 2 of 10 intensity. It is critical that any pain treatment that you pursue has a psychological component. This can include a person in the pain clinic or a separarte therapist like mentioned seeing or both. It is important that your pain physicians and you psychological therapist or psychiatrist work closely together to ensure you address pain and depression and that meds to not negatively interact.
Another important step moving forward is work hard on changing your daily focus from "fixing the pain" to minimizing the pain and maximizing your function. The pain is probably going to be there no matter what so you can either withdraw from everything you love and hurt or you can do the things you love and hurt. The latter would seem to be the better place. You do not have to be afraid of being active and hurting. The pain you experience is not like the pain from a burn. You are not "burning" your back if it hurts. There is no tissue damage associated with the pain from fibromyalgia and other similar conditions. There is no danger of damaging things if you try to do more.
Good luck! I hope that this was helpful in some way.
Unfortunately, it is difficult to tell from your description of your symptoms and situation as to whether your major problem is lower back or leg pain. As I have indicated before, this is a key distinction with respect to the appropriateness and potential efficacy of various treatments. All the injections that spinal specialists recommend or perform are "cortisone" injections. They are usually a combination of a local anesthetic (numbing agent) similar to Novocain and a steroid. The "success" rate of these injections varies a great deal depending on the injection type and the problem being treated. Based on the information and your comment about the recommendation to "burn the nerves", I am assuming that your major pain is back pain. I am also assuming that the recommended injections are facet injections. Facet joints are the small joints in the back of the spine that work in conjunction with the disc (also a type of joint) to allow the spine to move. While the discs and facets work in cooperation and aging of one affects the other, "slipped discs" are a different issue than facet joint pain. The facet blocks or injections are either an injection of medicine directly into the joint (like a knee injection) or of the medicine in the area of the very small nerve branches that supply the joint. If the "facet block" provides significant relief, then a facet joint nerve ablation is considered a more "permanent" way to treat facet pain. This involves using a radiofrequency "probe" or needle that heats up at the tip to "burn" the nerves. I put permanent in quotations because these small nerve endings can grow back as the treatment does not destroy the nerve cell just some if it's branches. A procedure to "burn the small nerves supplying the discs would be very different and I assume this is not the procedure being recommended. As Joy and Dave indicated the scientific evidence as to the effectiveness of injections is limited, particularly with respect to facet injections. Furthermore, no procedure is without possible risks or side effects and any patient can have significant reactions to procedures and medications. However, the risks associated with this procedure are very small and if all other treatments have failed, it may be an option. Epidural injections are also cortisone injections. They are usually used to treat leg pain. There is also limited scientific evidence supporting epidurals but there is more than that for facet injections. Approximately 75% of patients will respond positively to an epidural injection. Unfortunately, the positive effects are temporary for many patients and can last from minutes to months. It is impossible to predict if any given person will have long term or short term improvement. If the patient responds positively to an epidural with effects longer than just minutes to hours, they may be a candidate for 1-2 more injections over a period of weeks to a few months. Most physicians feel like patients should not have more than 3-4 epidural injections in a few month period. The injections can be repeated if they have been effective and a significant period of time has passed since the last injections. One study demonstrated that in patients with herniated discs and sciatica, less patients had surgery in the end if they had a special type of epidural called a transforaminal injection. While clearly the physician performing the injection is reimbursed for his or her work and there are some "injection mills" out there, the majority of physicians are very conscientious about ordering injections. Furthermore, while there are possible sided effects of injected cortisone (increased blood sugar in diabetics) the risks are much less than oral steroids or even many other oral medications. As long as the physician is not recommending numerous injections, more than 3-4, it is not an unreasonable treatment option.
Your symptoms do seem to be consistent with a disc herniation at C6-7. The natural history of this problem is the approximately 90% of people will improve with conservative care in a period of 3-6 months. Therefore, it is very likely that with some additional treatment that the symtpoms will improve dramatically. Conservative care usually includes medications and physical therapy. Spinal manipulation with the chiropractor includes some aspects that may be a part of physical therapy or PT but there are other parts that it does not cover. It is generally shown that active treatments such as PT are more effective in the long run than "passive" therapies like manipulation. In addition to PT, many patients will respond to an epidural injection or nerve root block. This is something that could be ordered through a spine specialist. Also, many patients respond to medications that are specific for the nerve pain. These include medications that are classically used to treat seizures or depression but taken low doses they seem to help "nerve" pain. The down side of these medications is that they can make you sleepy or drowsy though this tends to pass after you have taken them for a while.
With respect to the long term, you are at some risk for neck pain due to the degenerative disc that resulted in the disc herniation. Even if the nerve pain improves, which it should, the disc will not go back to being "normal" or young. The key to trying to avoid chronic neck pain is a regular neck range of motion and strengthening program that you would learn in PT. With respect to the "cause" of the degeneration, it is just the natural aging process of the spine. It affects everyone, albeit, with different degrees in different people. It does tend to be hereditary though not as directly as things like hair and eye color.
Hope this was helpful. Good luck and the odds are on your side for improvement if you get active in recovery.
It is great that you have had exellent results from your surgical procedures. You are wise to try to get moving and active again. Being fit and active is the best thing that you can do to prevent future problems with your back. However, it is important that you develop a progressive aerobic and strengthening regiment. I would suggest that you contact your surgeon for a referral to a spine physical therapist who can help you get started on your return to exercise. In general, you want to avoid impact type exercises so the elliptical is a reasonable option. You should also avoid any heavy weights, particularly free weights, above your head that will cause compression to the spine. I usually recommend that spine patients use the weight machines that use resistence mechanisms or weights on tracks with pulleys. These are less likey to injury you. You also need to do regular core muscle strengthening. Again a physical therapist can help you get started. Pilates is the commercial exercise course that is most similar to a core strengthening program.
Glad you are doing well and eager to be active. Good luck!
I would agree with some of the suggestions that you have already received from exchange members. It is unusual for scoliosis to cause such severe back pain, especially in someone so young. As such, the scoliosis alone may not be the whole story. I would suggest that you discuss your problem and request a referral to a an orthopaedic spine specialist that has an interest in adult scoliosis. I would suggest that you not purue any x-rays or other tests until you see that physician. They will be better able to determine what type of x-rays or other tests are most appropriate to assess your particular problem. If your primary does not know of such a physician, you can locate a scoliosis specialist in your area by searching the Scoliosis Research Society website at www.srs.org
Unfortunately, your post has limited information on your prior history. However, I assume that you had an L5-S1 fusion at some time in the past for back pain or some type of instability. It is clear that you are either having a recurrence of your pain or have continued to have pain since the time of your surgery. That is actually a critical distinction as to whether you had a period of pain improvement or not. If you had a significant period of improvement (more than 6 months), then it is possible that changes at L4-5 could causing pain. This is a described phenomenon called "adjacent segment degeneration" and is accelerated deterioration at a level above or below a prior fusion. However, it would seem that there has not been significant degeneration at L4-5 if your x-ray and MRI "came back clean" with no abnormalities for you. Having said that, it may be the case that your L4-5 level already demonstrated some degenerative changes at the time of your surgery and no apparent changes were noted on the new studies. You can develop increased mobility at a level above a fusion but this really can not be "diagnosed" with any type of physical examination maneuver or test. The "test" performed by the therapist could have placed stress on any number of structures that can cause pain including your pelvis and lumbar facet joints (small joints of the spine). It is not specific for any type of abnormal motion of the vertebra. Furthermore, the therapists' definition of "instability" or "hypermobility" is not the same as used by physicians. I have discovered this fact by participating in journal clubs (meetings to discuss scientific studies of back pain) with our therapists at Duke who teach in the PT school. If there is any instability or abnormal motion of your L4-5, this would be demonstrated on x-rays with you bending forward or backward (flexion-extension) x-rays. This may be something to discuss with your surgeon. In reality, there are a multitude of things that could cause new pain and there is no test where a flashing red light goes off at the source of the pain. I know this is frustrating for you as a patient but trust me; it is also frustrating for your doctors that would truly like to help you.
If your pain never improved after surgery, it would not be logical to attribute the pain to a new problem. Possible causes of pain after surgery include a failure of the surgery to heal, additional problems that were not addressed at the time of surgery, and simply a poor outcome that is not explainable. I assume that your surgeon has assessed you for a possible non-healing of the fusion if there is any question on the x-rays. This is most often done with a CT scan as it demonstrates the bone much better than an MRI.
In light of your various medical problems, your back and leg pain is most likley multifactorial in its etiology. As such, there may be no simple or single way to address the pain issues. It is unfortunate that your surgery did not provide improvement in your leg pain (sciatica). No pain surgery is guaranteed, even one as successful as spinal stenosis surgery. I assume that you have discussed the possible causes of failure with your surgeon and have determined that there is no simple solution. If not, I suggest you do discuss why your surgery "failed". It may be helpful to get a second opinion from a another surgeon to determine if the orginial problem was adequately addressed or to ensure that a "new" problem has not arisen. Having said the above, the general rule is that subsequent surgeries are less likely to be effective than original surgeries. This is particularly true in patients with a generalized pain disorder like Fibromyalgia. It would be prudent to be cautious with respect to further surgery.
With respect to your Fibromyalgia, this is not a surgically treatable problem so it is not surprising that these symptoms did not improve with spinal stenosis surgery. This is a systemic pain problem that is thought to be due to "over sensitive" pain nerve endings. The treatment is usually medical and multimodal often best administered in a comprehensive pain clinic.View Thread
It certainly sounds at though your brother is in a lot of pain and has a complex problem. Unfortunately, there is no easy or simple answer for these issues. It sounds as though more surgery is really not an option or advisable. That is not surprising as the likelihood of success decreases with each subsequent procedure. At this point, it may be useful to seek a consultation at a multidisciplinary spine center, particularly one with an active pain management component. If there is not one where your brother lives, you might research the closets medical schools or universities to see which ones may have such a center. If this is some distance from his home, it would not make sense to plan on long term treatment there. However, they may be able to recommend a plan to minimize his pain and maximize his function that either his PCP or a local pain physician could initiate. If you do seek such a consultation, make sure he takes all the records (physician and hospital) as well all of his radiographic studies (reports and films) from before and after surgery with him to the visit. The films may be on a CD but the doctors will usually want to view the images themselves.
Good luck and I hope he can find some improvement!