Spinal Surgery :: Pain Stimulater For Occipital Neuralgia
Mar 2, 2016
I had this unit put in in Dem. 2013 but because of the lead trying to push through the back of my neck it had to be revised in August 2014. Was doing great until January 19, 2016 when the lead again pushed entirely through the skin on back of my neck. Now my insurance company will not approve for me to have another unit put back in. I was free 90% of the time with my unit in and now I am back to having so much pain in this area. It makes it very hard to have any quality of life except to wait around for another horrible burning pain that takes 3 mores days to overcome each time. Has anyone else had their insurance refuse this especially when it worked great?
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I have not officially been diagnosed with Occipital Neuralgia, but I am beginning to think that that is what I have been suffering from. I will be going back to a doctor soon (husband is military and we are currently getting ready to move to a new country...so it will be a few months before I settle and can get to specialist). In the meantime, I wanted some advice from others who deal with this. I am curious if this sounds like ON to you (I know you can't diagnose me...just curious if my story is similar to anyone else's) and what you do for the pain.
I am 25 years old right now. The headaches started when I was about 18 or 19 years old. It started on the right side of my head right at the base of my head and neck. I got them almost everyday. It was just a dull ache. Nothing awful, but definitely annoying enough that I would have to take advil (especially when I had class or work or something). As months went by and the pain continued, I started getting nervous that I had a tumor (I am a pretty big hypochondriac). I went to my doctor and he sent me to get a CT scan. Everything came back normal. The headaches continued. Went to a neurologist and got an MRI. Again everything came back normal. The headaches still continued. Went to physical therapy. Still not much improvement (granted, I don't practice the exercises he taught me very often). At this point, to be honest, I gave up hope. I took advil almost every day and learned to deal with the pain. I assumed it was just tension headaches. The pain has now gotten worse. The headaches are still only that one side of my head, but the pain spreads behind my ear and up to my right eye when it is at its worst. It feels like a deep ache and I constantly want to stretch or crack my neck or something (which doesn't work). I have a "knobble" that I use to massage the area. Applying a lot of pressure on it hurts...but in a good way. It sort of relieves the pain for the time being, but unless I take advil it will usually come right back and it will last for a few hours if I don't do anything.
I am a teacher and I obviously have to be at my best everyday. The pain makes it impossible, which is why I usually give in and take meds even though I KNOW I should not be taking it everyday. If I am just at home and have nothing to do, I try to massage the area and relax until it dies down.
Does this sound like it could be Occipital Neuralgia? Does anyone have any other idea of what it COULD be? I haven't had much help from doctors, so I sort of want to be armed with information the next time I go see one. I am sick of being told it's nothing when I am spending every day in pain.
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For nearly two years now, I have had a severe pressure pain at the base of my skull on the right hand side of my head. It has steadily got worse, often flaring up whilst I have been in the gym, but now, like tonight, it has been throbbing/stabbing so badly that I am unable to sleep.
I have been back and forth to my doctor about 5 times so far and every time she has sent me for a blood test and concluded that I have low iron and to take supplements for that. My whole family are susceptible to iron deficiencies and I am a regular blood donor who has never been turned away, so I am confident low iron has nothing to do with it.
I was getting quite frightened that I could possible have an AVM in my head, or something putting pressure on my skull, so after much persuasion, my doctor referred me for a CT scan that came up 'normal'. She called me and suggested that I keep taking iron tablets as this must be the cause of my 'headaches'.
I do NOT have a 'headache'!! I keep reiterating to my doctor that it is a constant pressure in that area, sometimes my head even hurts to touch, but she is insistent that it is a headache. Occasionally I get a pain behind my right eye and over the top of my head, so I am getting a lot better at wearing my glasses any time that I am reading or studying. I have looked online at my symptoms, and I think it could possibly be occipital neuralgia - does anyone have symptoms like this? I have looked on other threads but there seem to be a lot of associated physical symptoms, for me it is just the head pain.
If you would believe it, my doctor actually asked me if I wear my hair up at night as she thought having my hair in a loose ponytail could be causing the pain. When I said I wanted a scan, she told me she would 'have to make something up' that sounded worse than what I told her because if she sends a person for a scan and it's not serious, she gets a slap on the wrist, as scans are expensive and she can only request three per month.
I am going back this week to discuss occipital neuralgia with her (let's hope she knows what it is!) and to insist on maybe an alternative treatment to injections or meds - maybe acupuncture?
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I have had horrible migraines for 10+ years which have become chronic daily headaches, manageable, but daily. A year ago I started having horrible pains at the base of my skull on the right side, some days it is a horrible stabbing pain, some days it is just a dull ache, but it is always there. I saw my neurologist in May about the pain since it just would not go away, she really had no ideas for me, she thought it might be a pinched nerve but said she really didn't know, she started me on nortriptyline, after being on the nortriptyline for 2 months and no change, she switched me to gabapentin, I am now taking 1200 mg 3 times a day. Some days I notice a difference, other days no change at all. My Neurologist said to stay on it and it should be helping. About 3 months ago the same type of pain started on the left side of my neck, about 1.5 inches below the base of my skull, closer to the middle by the spinal cord than the outside of the neck, it felt like a muscle knot that wouldn't go away, for the first few weeks, thinking it was a muscle knot, I was trying everything to get the knot to go away, after no relief with heat, massage, ice, I saw my neurologist and basically demanded that we get an MRI to see what was going on, she said she didn't think that was necessary, but ordered it anyway. She said my MRI looked totally fine and that i should still stay on the gabapentin, but no more help than that. After that I decided to find a different doctor. I started seeing a physiatrist, specializing in neurologic issues. My first appointment with him was fantastic, right away he said from everything i am describing i have occipital neuralgia. He explained what it was, and that it is a tricky thing to get under control, and he really couldn't say what is causing it. He said that the gabapentin is what he would prescribe, and it probably is helping, just not taking the pain away totally. He did prescribe a cream to apply to my neck, that he said he has great results with. He said he likes to try this first before doing any injections. It is a special compound cream that is specially made at a pharmacy he uses, its a mix of baclofen, gabapentin, ketorolac, and lidocaine. Its hard to tell if the cream is working, kind of like the gabapentin, sometimes it feels great, other times the pain is the same...
My true issue and reason for posting is, I have had a bad headache on the right side of my head, it moves from the right base of my neck, around my ear to my front temple area. Throughout the day it is in a different spot and I can pinpoint exactly where it is, it feels like someone is stabbing a knife right in that area, but it lasts for hours, throughout the day it does get a little "better", but i can always feel it, when it gets "better" it just feels like a massive pressure in that area. I have been a headache sufferer for as long as i can remember, but this headache is different than any headache I've ever had, and it going on day 19. I have tried everything; my many different headache medications (including an injection i give myself), I've taken a dose pack of steroids along with some anti nausea medication my neurologist gave me, i have gone to get a DHE treatment from my neurologist, i have gotten a toradol shot, and pretty much anything else i could think of, and nothing is kicking this headache. After doing lots and lots of online research, it leads me to believe that this is related to my occipital neuralgia, not a "normal" headache. Has anyone has a headache like this before? Do you think it is related to the occipital neuralgia, or something else? Does anyone have any ideas to make it go away. Also, if anyone has any tips on dealing/treating neck pain from occipital neuralgia.
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Ever since I've contracted HSV2 my life has been a living hell! I've been having sharp pains all over my body , leg pains, itching sensation all over my body, and last but not least pains in the back of my head and neck which sometimes radiates to my scalp. can herpes cause this to happen? If so is it life threatening or deadly?
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Does anyone have problems with occipital neuralgia? I have been having headaches everyday going on 7 months now that are dull and cause shooting head pain. It travels from my neck, to the top of my head, behind my ears, and behind my eyes. I have had MRI's and CT scans, and everything has come back normal. I have gone to PT for 4 months and had 2 nerve blocks. Nothing has given me relief. I went to a new doctor yesterday and he suggested that I may have occipital neuralgia. I am desperate to hear about what has helped other people and to hear about how everyone else copes with this/if it has gotten better.
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I had bad head and neck pains and lightheaded/dizzy days for about 18 months. Would last a day or two then feel fine in between. Held down a super full time career and ran a home really well. Was successful etc. But since xmas when I had a major headache/pain in the back lower part of one side of my head which started boxing day and went on and on I saw a neuro who thinks it is occipital neuralgia. On gabapentin and awaiting some procedures in theatre to help (I hope!) Anyone else have this out there?
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My friend has had diagnosed with occipital neuralgia. I am now living in my country of origin because I developed Parkinson at the age of 28. I kept receiving medication in the UK but opted out for DBS at this clinic abroad. They were so great that they offered me a job as I recovered. I told the doctors about my friend and they told her to come over for something called peripheral nerve surgery as they had a doctor visiting from the States. She initially exhausted all medication therapy and also nerve blocks, I think she used botox did not help her. Now she is migraine & headache free, happy, smiley person.
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I was told by my neurologist that's what I have which is fine I have a lot of the symptoms (burning in head, ache, sharp pains, etc.) however I would like to know if anyone else experiences a metallic taste with theirs?
Or bitter taste? Hard to explain the taste exactly but I noticed I only get this taste when my ON acts up.
My right cheek also feels numbish when it comes along. I have a nerve test for neuropathy in a few weeks (to see which kind I have) and have had CT/MRI of brain which was clear so the taste may be related to the neuropathy but it just seems weird it comes when the ON comes.
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I had no idea what Excruciating Pain was. Does Radiofrequency Ablation in the facet joint nerve work?
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After a L5-S1 in October, I am left with residual left foot and partial leg nerve pain. In addition to numbness, my leg aches. My MRI looks clean, but neurosurgeon referred me to neurologist for possible nerve root injections. He also suspects the it may be radial sympathetic nerve issue. If nothing else, he's willing to take hardware out to see if that helps. I keep falling with my left foot so "numb," so I am frustrated. Is the device that scrambles pain. (can't think of it now) good for nerve pain? (Pain extends to my left lower back.) Has anyone had nerve blocks for nerve pain? I wouldn't have had surgery if I had known my mobility would have been compromised so much.
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Lisa here...Before my S1-L5 fusion, I had some foot pain caused by waiting two weeks to have a laminectomy/discectomy in my L 4 and 5 discs after a herniation (5 years ago). After my fusion - about 7 weeks ago - I have had terrible burning pain, sensations that feel like I am being bitten on a toe or have tape in between my toes. At night the pain is worse. Walking intensifies the pain and weakens my ankle and leg. I can't wear any of my shoes. Does anyone have any experience with this? I've called my neurosurgeon and he wants an x-ray. Suggestions? Comments?
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I had back surgery in March 2013 that left me with mechanical instability, acquired spondylolisthesis and lots of pain.
I have 2 ortho spine surgeons telling me that I need a bi-level spinal fusion surgery to repair the damage, but after the botched first surgery, the thought of another surgery scares me to death. Plus, since surgery is what spine surgeons do, the recommendation seems obvious.
I also started seeing a new pain management doctor (we moved to a new state) and he is suggesting that I consider a spinal cord stimulator trial, with surgical implantation if we find that it helps the pain.
So...I'm left confused. I see the positives and negatives of each, but I'm just not sure if one makes more sense over the other. I think that my spondylolisthesis will worsen over time and could pose a threat of nerve damage, while the spinal cord stimulator is designed to mask pain and does nothing to address the instability.
I'd love to know if anyone else has faced a similar decision...or has thoughts, ideas, comments, suggestions for considering one over the other.
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Does nerve pain on the feet and calves go away after spinal surgery? I've been suffering from burning nerve pain since my back surgery. I had a laminectomy and fusion at t22 l1.
What can I do to help. Other imaging?
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I am a 40 year old male that has had two back surgeries. First Surgery February 2014 Lumbar Spine Posterior Discectomy Micro-discectomy on L4 & L5. Surgery failed no improvement. My Second surgery March 2015 Anterior lumbar interbody fusion (alif) surgery on L4, L5, & S1 with cage implants and bone grafts harvested from my own hip bone. I experience sciatica on my right leg and most frequent on left leg ;shooting pain down my right/left hip/buttocks, goes down the back of the leg. The last 3 years left foot numbness. My worst pain is in bed getting up is very painful. Before my ALIF surgery I suffered from sciatica foot numbness and pain in mostly my left leg region. After 6 weeks post ALIF surgery or so I started getting pain in my buttock/hip region. This actually started during my physical therapy. At first I was doing water therapy this is when it started. My last day of water therapy I was literally about to go to ER from P.T clinic. From there on it just had gotten worst, no real improvement. I went back for more P.T sessions stretching and other exercises . What Physical Therapist did notice that my hip motion was very limited and not much improved happen during all my sessions about 40 or so. Its being about 10 months after surgery and 4 months of P.T. and pain on hips doesn't go away. I have to be careful going up or down stairs. Getting out of bed or moving around in bed its a battle. I have spoken to my surgeon and he says it will take more time for recovery and possible have to live with this pain as a fact of life. I have also spoke to other doctor s and pretty much same response. Once thing I just found out recently is about Hip Bursitis. I was diagnosed with Arthritis. My surgeon keeps on saying its my Arthritis causing pain but prior to ALIF surgery I never had this buttocks pain , specially getting in and out bed. I was wondering if anyone has had same symptoms after spinal fusion surgery having Hip Pain From Arthritis or Hip Bursitis?
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I have never been so lost with my health. Someone smashed into me in recent years. From that moment, the list of what I've suffered is absolutely endless. So much so that I've lost confidence and most days don't know where I am with myself. Been to see two orthopaedics, yet they can find little wrong with me. Been referred to a rheumatologist under the question that I may have fibromyalgia. I was tested on "point" scale. Not only was I tender on all of the fibromyalgia points, but everywhere else, too. Then I get forwarded to a Consultant Neurologist. I get a diagnosis of Functional Neurological Symptoms.
Here's a list of some of the things I'm dealing with each day and night:
Spasms - Can be everywhere, but mainly through the spine and left side.
Shoulder and shoulder blade ache
Itching (very uncomfortable) but almost permanent and throughout the body and left side.
Collapsing. Mainly the left side, lower back, left hip and leg. No warnings, just gives way. Permanent pain in these areas, too.
Reduction in grip strength, plus some pain when trying to grip. Also, some pain when not trying to grip.
General muscle and joint aches and pains and nagging.
Neuralgia and nagging from neck upwards. Horrendous when trying to eat hot or cold food - so it usually has to be room temperature now. Yet can still get neuralgia.
Balance problems. Won't walk anywhere without my partner. I often drift, or body gives, or spasms, etc, so I have to hold on to him.
Crawling sensations throughout the skin (really uncomfortable) and awful restlessness. Often takes me ages to drift to sleep, even then I wake up tossing and turning. Which is unusual, because when I'm up and "trying" to do things, I feel permanently tired. I've felt lack of energy for very long now.
My mind goes blank, often in the middle of the sentence. Not only do I get words back to front, but I also say one word when I mean another, and they'll have no connection whatsoever.
I'm permanently forgetting things, which can be dangerous, because I'll put something in the oven and completely forget, which is why I will insist on waiting until my partner comes round to my flat.
The pain and discomforts I suffer can include the following and, often, all at once; muscle tightness, burning, itching, tingling, stabbing, shooting and I get cramps every day.
I suffer other symptoms, too. I also struggle to digest now.
When I do slightly collapse, ie, body gives (which is most days) the pain can be horrendous, even if just a threat, yet when I fully collapse, it is excruciating and I cannot get up off the floor for ages and then without help.
I don't know whether I have fibromyalgia or the diagnosis from the Neurologist, or both.
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I had TLIF spinal surgery in 2010. Went as well as could be expected, but I have a very weak back and live with constant pain. I body won't accept strong painkillers, so was prescribed Amitriptyline. Came off them due to nose bleeds and feeling like a complete zombie. Although it was good to get a good night sleep!!! Doc then put me on Gabapentin 300 mg 3 times a day. Had no pain relief and so doc has now upped me to 600 mg 3 times a day, plus zapain in between.
I worry about taking so much, but I need something to take the edge off my pain. I've read a lot of negative reviews about Gabapentin. Will have to see how I get on.
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I am 40 and have grade 1 l5 s1 spondylolisthesis. When I read forums, all I see is people having to be on painkillers, fusion surgeries that don't work, people who can not work, have children (pregnancy) and so on because of this condition. I am so terrified I will end up in a wheelchair or without a social life. There is so little information about the condition online. Please, please, can someone give me some hope that you can live with this condition, perhaps by doing exercises, yoga, pilates etc? Please tell me I can avoid surgery, have a pregnancy to term without complications from spondy. I feel so alone. I hope all of you are having a good day.
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I had two RFA procedures done in 2014. This was after 3 sets of epidural spinal injections done over a year's time throughout 2013. The first RFA worked so well I was nearly pain free for 9 months. I was overjoyed to feel normal again. I have bulging discs at L4-L5 and L5-S1, causing radiculopathy and sciatica. Having had such amazing relief from the 1st RFA, when the pain started to return, I had the 2nd RFA. During the procedure, the doc had a problem at the bottom two burning sites and the pain was so bad I screamed for him to stop. He did... briefly.. but asked me to "hang on" for the 90 seconds and it would be done.
I never got relief from this second procedure...not even for one day. Fast forward to Dec 2015 and the pain is worse than ever. And I just read today that a complication of RFA is "permanent nerve pain", I was never told about this complication! I'm permanently disabled now, on SSDI and walk with a cane. Even after researching for 2 yrs. online, I just found out about this complication TODAY. Very upset. Anyone else have complications from RFA? I feel very alone in this.
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8 months after my L1 compression fracture, another doctor (fired the first one) found out that one of the T12 facet joints is fractured (broken off in 2 pieces). I should have been operated on after the fall, but it's too late now.
Could someone tell me what this could cause (what kind of pain)? I have local pain, and severe pain in the iliac area, after being active for a while, or after sitting for a while.
I can sleep at night, but after 5-6hrs, I wake up because of the pain, can't continue to lay down. Very painful.
also, I still can't lay down on my back on a hard surface.
I'm scheduled for a nerve ablation T12-L1, both sides this Friday and Monday. I'm scared because of all what I read...
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I am a 50 year old female who had lumbar laminectomy at L3/4 eight weeks ago for lumbar stenosis and spondylolisthesis. The surgeon also performed a dynamic stabilisation at this level. As I understand it, this involves the insertion of a flexible and rod and screws, similar to fusion but allowing more flexion at this level while at the same time preventing the vertebra from slipping. Prior to surgery, I was unable to walk or stand for more than 5 - 10 minutes without becoming uncomfortable because of weakness in my legs and a tight cramping sensation in my buttocks. Surgery has relieved me of these symptoms, but I now have aching in my lower back, groins and hips when standing or walking for more than 5 - 10 minutes. I wasn't given any physio follow-up after discharge from hospital, but have had a couple of sessions with a private physiotherapist. She seems to think that these pains are due to the ligaments and muscles having to stretch as my spine as been realigned and my pelvis is now tilted forwards instead of backwards as it was before. Has anyone else experienced similar pains and if so, how long did it take for them to resolve? I am also very stiff first thing in the morning and when getting up from a sitting position. I do not have any pain when sitting or lying down.
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