Ben's Friends has been working with the Cleveland Clinc to provide Webcast for Members- This one is on Neurological Pain by Dr. Sharif Castandi

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Moderator: Today's Live Web Chat "Managing Pain from Neurological Disorders" with Shrif Costandi, MD will begin at 12:00pm ET. Dr. Costandi will answer a variety of questions on the topic. Please submit your questions by typing them below and then clicking 'Submit Question'.

Moderator: Take advantage of this rare opportunity to chat live with Cleveland Clinic expert Dr. Shrif Costandi. Get answers to the most frequently asked questions regarding managing pain from neurological disorders. Bring your own questions to the web chat. This is your time to ask!

Welcome to our Online Health Chat with Cleveland Clinic expert Dr.
Shrif Costandi. We are thrilled to have him here today for this chat. Let’s begin with some general information while we wait for Dr. Costandi's answers.

Chronic pain is often times associated with neurological disorders. According to published medical research, 20 to 40 percent of patients who suffer from neurological diseases also suffer from chronic pain. Chronic pain can make even the simplest activities a challenge.

Neurological disease can result from a range of functional changes including traumatic injury to the central nervous system, the breakdown in functionality of neurons, infection and stroke. Discovering the cause behind the disease helps to better manage the associated pain. Treatment options for chronic pain include acupuncture, stimulation, psychotherapy, relaxation, behavior modification and medications.

I have had burning hip pain (at times hops just hurt). I have a right paracentral herniated disc at L4-L5. I had 2 epidurals last year with no luck. I also have burning in my right arm and hand. And my hand us colder than the other. I've been through a nerve tests, etc. and nothing is ever found. I also have NDPH for 7 years. Any advice or suggestions are appreciated.

Shrif_Costandi,_MD: Well the question is : is the herniated disc pushing on the nerves or not. THe good thing is ur nerve studies are normal. Your case does not seem to be an easy one. I would recommend further work up of the hip by doing Hip Xrays or even MRI. AS for the NDPH you have to be started on preventive medications and make sure your anot over medicated and end up having medication overuse headaches..

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rfkrause46: I am a 66 year old male with Spasmodic torticollis. I currently receive 300 units of Botox every 90 days, and have for the past nine years. Are there any downsides to continued use of Botox and are there any alternatives with the exception of DBS?

Shrif_Costandi,_MD: No long term studies have been done on Botox showing the long term side effects. But a theoretical side effect is atrophy of the muscles. But with proper dosages, exercise and proper nutrition, it should not be a problem. Again it is theoretical. There are no other alternatives as of now except DBS.

Tazzy: Have you ever heard of using a " Mirror Box" for pain relief and does it work? If the pain affects only 1 side of body such as stroke, amputation / phantom pain or pain from injury: Place the affected limb behind a mirror to obscure it and concentrate on the mirror image of the pain free limb moving in the mirror. It leads the "Brain " to think the affected hand, leg etc is the one moving ( even though its not ). It is supposed to " retrain " the brain to think it can move affected side without pain and eventually you can move without pain. It is also used to restore movement after paralysis. Does this actually work? how long does it take and how many times/mins per day should this exercise be done? Does the improvement last or is it only temporary?

Shrif_Costandi,_MD: Managing pain after stroke and paraplegia is very challenging. We have tried many modalities but none of them is 100% effective, usually a multidisciplinary approach and comprehensive program get the best outcomes. Mirror therapy is very effective many studies have been done and shown effectiveness. Some physicians think it is the most effective therapy right now. The effect is usually long lasting not temporary but relapses can happen .U have to be evaluated first and depending on the severity of your condition, the therapist usually determine the duration and number of sessions. It really depends on your progress with this therapy

Tracy Z.: I have Geniculate Neuralgia, Occipital Neuralgia with major headaches & a severe Chiari Malformation 1, Rebuilt Cervical Spine & Degenerative Disc Disease and POTS. I have been working with pain mgmt specialists since 2001. Neuropathic pain is very challenging to treat, what is new on the horizon as far as new therapies? I have literally tried everything except spine catheterization.

Shrif_Costandi,_MD: Neuropathic pain is very challenging. If you have tried different medications and pain rehabilitation programs, then you are left with spine catheterization. Local anesthetics (numbing medicine, narcotics can be put in. A new medication is called Prialt but needs a lot of experience in titration of the medication since it has serious side effects

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loveitaly: My daughter is 31 years old.She is a lovely young lady with a beautiful personality, always smiling, and happy. She has brain damage since birth, because of this, she has Cerebral Palsy and refractable seizure disorder. Her seizures are small, complex partial, and they happen frequently every month. Do having seizures cause some type of pain? What about her cerebral palsy? Her hands are more contracted than her lower extremities, these are fine.She is non ambulatory, has scoliosis and hip dislocation. Thanks for your expertise.

Shrif_Costandi,_MD: Seizures do cause muscle pain after the seizures. As far as the contractures, there is nothing you can do more than try different anti-spastic agents, orthotics for the limbs and try to do stretching exercises as much as you can do and as much as it allows you to do. If this is so severe, you might need tendon releases

Madonna: What is the most effective pain protocol for CIDP pain in a 68 year old ,130 pound man In a wheel chair and can't stand and is an insulin dependent diabetic (newly diagnosed)

Shrif_Costandi,_MD: The patient has to be tried on different nerve membrane stabilizers and then titrate the doses to effective doses without developing side effects. It is never a single agent usually a combination of them has synergistic action and better outcomes. For example, using gabapentin and amitriptyline can be tried. If they are not effective, we have to try other combinations. People respond variably, so we have to try different combinations first. If the pain was never controlled with oral medications, the next step sometimes is to use a spinal cord stimulator or pain pump that infuses medication around the spinal cord.

Tracy Z.: Why do medications that treat Neuropathic Pain have such horrible side effects? Brain Fog, Word Loss, Word Blindness, Headaches, Lethargy, Weight Gain, Memory Loss and the list goes on and on......Most of these medications are crossover medications being used to treat other diagnoses or in some instances Orphan Drugs. Would it not be better for drug companies to develop new medications for neuropathic pain?

Shrif_Costandi,_MD: I agree with you completely. We need to develop certain medications that target the neuropathic pain only. Currently there is a lot of animal studies on different drugs trying to tailor those medications but the biggest problem is funding and companies really look for drugs and medications that will bring more revenue to it and neuropathic is not one of them. They want to invest on medications for cancer, heart diseases. That being said, there are studies that are going but they could been faster if there was more funding. The other problem, there has been more success with intervention than medications like spinal cord stimulators. They tend to treat pain better the medications but they have a higher cost and require implantation of a device which is a major drawback

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Tracy Z.: What do you think about using a Vibe Machine for Neuropathic Pain?

Shrif_Costandi,_MD: I am not aware of such therapy. I am also not aware of any scientfic studies that are studying this therapy. I would not proceed with any therapy unless good scientifc studies have been performed on it.

ssparr: I have severe neurological pain in my legs and hip pain. My primary diagnosis is MS but I also have bulging disks. Most days I try to manage the pain by stretching and staying active but night time is the worst and prevents sleep. I have Vicodin but don't like to take it on a regular basis because it seems to help with the back/hip pain & not so much for the pain in my legs. I have had allergic reactions to Lyrica & other medicines in that family. Are there other therapies that could be beneficial for neurological pain that goes down both sides of my legs?

Shrif_Costandi,_MD: There are different classes of medications that work for the pain radiating down the leg but the question is which one is the best for you? People respond differnetly and variably. There are tons of those medicatiuons and they work with differnet mechanisms. for example: neurontin, amitripyline, lamictal, topamax, duloxetine, venlafaxine , maprotiline, baclofern, keppra,...etc. I do not recommend taking Vicodin or other narcotics for long term. No studies have shown any good outcomes for using long term narcotics in non cancer pain conditions. THe other options is to consdier spinal cord stimulator, which is usually the next step if patients do not respond to oral medications. Another option is Pain Pump.

derekl: Hello Dr. Costandi, I have sarcoidosis and have been diagnosed with Small Fiber Neuropathy. My symptoms were muscle pain and twitches, and numbness in my hands and feet. I've recently started IVIG infusions every 3 weeks, and after the first treatment my symptoms become much worse, with more pain, numbness, pins & needles, and burning hands and feet. My second treatment was one week ago, and the symptoms are not as bad this time, but still there. Is this common with IVIG, and when can I expect to see improvements of my worsened symptoms as well as my original symptoms? And are there any other treatment options that have proven successful? Thank you.

Shrif_Costandi,_MD: IVIG is a common treatment for such conditions but they can be associated with major side effects. Sometimes the first session is the worst but then the body adapts eventually and builds tolerance. Usually the latter ones are more effective for the cumulative effect. Usually the multidiscplinary approach is accompanied with the best outcome. In addition, to the IVIG (iuf indicated), oral nerve membrane stabilizers and physical therapy.

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What is the best way to eliminate pain from a pinched nerve?

Shrif_Costandi,_MD: I am assuming you mean pinched nerve in the back.
If that is the case, we usualy start with conservative measures like oral medications, physical therapy. If there is no response, we try injections with physical therapy, then finally the last resort is surgery if there is something on the MRI that is fixable.

gladly: I am waiting for a neurological appointment. In the meantime, what is best for sciatic pain?

Shrif_Costandi,_MD: The best way is to try oral NSAIDs ( iburpofen, motrin, advil..etc). If you are having numbness , you might want to start a nerve membrane stabilizer. The other option is to try to see if the neurology dept or pain management dept have same day appt that can accomodate you earlier ..

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My daughter gets frequent migraines. What is the best to do to relieve the pain? She takes Amytripiline (10mg) which helps her sleep, but she is still in pain.

Shrif_Costandi,_MD: We can try to increae the dose, the therapeutic dose for amitripyline varies from one patient to another depending on their metabolism and the severity of the pathology . Another consideration is adding neurontin. Usually we have better success with the combination rather than using a single agent.

clearly: I have read reports that yoga helped relieve neurological pain. Is this true? If so, how?

Shrif_Costandi,_MD: Yoga can help with muscolskeletal pain, as it relieves the tension and stress being built up. It enhances the endurance of the muscles. Usually exercises/working out release endorphins ( chemical in the body that help to relieve the pain )

really: I have nerve damage from a bad cut in my arm. Along with the pain, I get burning, tingling and sever itching. Will this ever go away and is there any way to relieve this?

Shrif_Costandi,_MD: It depends on the severity of the nerve damage and the duration of nerve damage. Sometimes the nerves heal but that may take long time usually 3-6 months at least. We usually try conservative measures first and give the nerves a chance to heal on its won, if your pain persists even with different medications and you fail conservative measures, we can consider BIONESS which is a novel technique that treats neuropathic pain caused by damaged single nerves. It is a tiny implant that is placed along the course of the nerve. This technique is under investigation, Cleveland Clinic is part of this multi-center study. we are having great results.

joyrperez: My mother has been diagnosed with Autonomic Dysreflexia and the doctors also believe there is another undiagnosed Autonomic Disorder. She appears to "fall asleep" while doing everyday tasks, has huge gaps in memory and confuses reality with what she was thinking about during these episodes. More often than not, she is often in a semi-lucid state and has limited (slow motion) motor control, often leading to falls. The pain management team attribute these episodes to her pain medication instead of looking for biological reasons. She has had nerve blocks, epidurals, botox, TENS unit, acupuncture...between the pain and the severe hypo/hyper tension the number of decent days in a month can be counted on one hand. What specific questions or tests should we request to encourage her physicians to look further into a specific diagnosis?

Shrif_Costandi,_MD: Pain medications can cause all the above symptoms But your question is valid what if there is an underlying organic cause for all of that. The tests that could be done (MRI and CTscans, blood levels of electrolytes, EMG ). Another consideratioin, is to try to slowly taper the pain medicaion and see if there is any improvement in her symptoms and if there is any differnece in her pain control. If her pain gets bad, and the symptoms are the same then they know it is not coming from the pin meds and they can increase the medications to optimize her conditions. In addition , her autonomic dysreflexia should be controlled to minimize these symptoms (falls)

loveitaly: I mentioned about my daughter who has seizures previously. She does use arm splints, and as a child she used all kind of AFO's. Now she uses little AFO's only to the top the ankle. She receives at home PT, OT, uses the prone stander like 3 times a week and we do ROM every day. She has severe GERD, and when this began 14 years ago, no doctor knew why she was crying so much, and her way of protecting from the pain was curving her arms close to her chest, that is why the contractures are basically in her hands.But we rarely have to give her Tylenol for tha pain, because she hardly complains of pain (that we know of).

Shrif_Costandi,_MD: Seizures and contractures could cause pain. Pain is usually worst after the seizures. I agree with you Tylenol is good for pain control.
I cannot stress upon the importance of the exercises. Thank you

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cbnome: I have been having bad pains down my right leg. How do you know if the pain is neurological or not?

Shrif_Costandi,_MD: if your pain is associated with other symptoms like weakness, tingling, loss of balance then probably it is . If your pain follows a certain nerve pattern, then it is highly neurological. The best way is to see a doctor to rule it out. Also doing XRay or MRI can pinpoint the actual cause of the problerm.

gabriellesena: Are numbness of feet, aching joints (primarily ankles & knees), balance issues with dizziness, vertigo & a lack of coordination when walking a neurological issue or rheumatoid issue? Could it also be a side effect of botox injections for migraines or triptan meds for migraine management?

Shrif_Costandi,_MD: I dont think it is related to the BOTOX or the triptans. I think it is more neurological especially with vertigo, dizziness,lack of coordination. the aching joint might be from arthrits or rhematological . I would go to a neurologist first , your nrutological symptoms are more serious

ethel: Would you recommend acupuncture for MS related pain?

Shrif_Costandi,_MD: I would give it a try. The response to acunpuncture varies from one person to another. It might work and it might not.

Tazzy: What is a nerve membrane stabilizer?

Shrif_Costandi,_MD: Medications that decrease firiing of the nerves. There are so many classes of them and thery work with different mechanism. examples include Lyrica, neurontin, amitripyline, cymbalta ..etc

Tazzy: How effective is Ultra sound for pain relief? What about fluido therapy, iontophoresis or photophoresis? There is something called ionto patch I think its sorta new. It's like iontophoresis except its wireless and uses a battery within the patch that slowly releases the meds ( dextromethosone ) over a 6 hr period. They claim it works better than the short delivery method d/t the meds stays in the painful area longer and therefore works better to reduce inflammation and pain. Which of these methods do you think work best or which do you think are least effective for pain relief?

Shrif_Costandi,_MD: The published literature data with all these modalities have been very controversial. No solid data that supports or disaproves the use of them. May be in the future with the new advances in technology , we might have better results. As you said those modalities are good for painful inflammatory muscloskeletal conditions. THe new patch sounds promising but dont be discouraged if it doesnt work , it is a 50 50 chance. I think they are all the same.

joyrperez: Hello,
Are side effects of pain medications for neuropathy, Autonomic Dysreflexia and ANS known to cause repeated syncope like symptoms?

Shrif_Costandi,_MD: It really depends on the classes of pain medicaions she is on. But all pain medications could potentially cause dizziness, excessive sedation, drop in the blood pressure, fatigue, daytime sleepiness, insomnia..

Moderator: I'm sorry to say that our time with Cleveland Clinic expert Dr. Shrif Costandi is now over. Thank you Dr. Costandi for taking your time to answer our questions today about Managing Pain from Neurological Disorders.

Shrif_Costandi,_MD: Thank you so much for yout time
Hope this was helpful

Shrif Costandi, MD is a physician in the Department of Pain Management. He graduated medical school from Cairo University Faculty of Medicine in Cairo, Egypt. He was a resident at The Brookdale University Hospital and Medical Center in Brooklyn, New York, and completed a Pain Management fellowship at Cleveland Clinic.

To make an appointment with Dr.Costandi or any of the other specialists in our Department of Pain Management at Cleveland Clinic, please call 216.444.PAIN (7246) or 800.392.3353. You can also visit us online at

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Moderator: Mark your calendar to chat with Cleveland Clinic experts Thomas W. Frazier II, PhD Timothy Moss, MD, PhD, who will answer your questions about 'Genetics and the Child with Autism' on Tuesday, April 23, 2013 from 12:00 pm to 1:00 pm (EST). You may begin to ask your questions at 2:00(EST) today.