Radiculopathy and back pain much worse despite microdiscectomy 2011
 

Hi everyone

My name's Kathy and I live in Newcastle-upon-Tyne in the UK with my husband and our 3 children (and various pets).

I am here hopefully to get some guidance from you guys if you don't mind (right section I hope?), sorry about War and Peace below.

Firstly, I'm 35 if that helps to clarify anything in my history lol.

In secondary school, roughly age 15, I had a period of upper back pain that I got some physio for. At around the same time as the back pain I started with flares of wrist pain sometimes with finger/hand numbness and weakness alongside it (little and ring fingers of both sides and the outside edge of each hand). At age 25 I had a neural impulse/function test which ruled out carpal tunnel. I had a neck Xray in case it was that, it came back fine. I remember feeling that it wasn't worth pursuing as both tests had come back negative and I felt I was wasting their time.

I have 3 children and had minor back issues with each. My first was a huge baby and I had minor SPD and lower backache. I didn't have too many problems with my 2nd, but with my last pregnancy my back "went" at about 6 months, and I was given a brace to wear. After having ber (1999), I had periodic sciatic pain down my right leg. It didn't really last long so I didn't worry. However, over the years my feet and sometimes the outside of my right calf would go numb for a bit sometimes. My sciatica got gradually worse and in 2009 I eventually decided it was worth getting help. My right leg had started to weaken at the knee joint sometimes and I would stumble. I was also getting a dull pain in my lower back, this was not all the time. I had a new symptom that scared me - numbness and burning in the skin of my outer thighs. At this point that wasn't there all the time, and mostly happened when I was laid in bed.

I went to see the GP and was referred for physiotherapy. My GP was amazing and knew to get an MRI "booked" before sending me off to see anyone else, to save time. I got an Xray in Casualty when I had a fall and they said my back was "perfect", making me feel a bit of an idiot for asking for help. However, physio didn't help, and my symptoms got worse. By early 2010 I was having to use elbow crutches to walk. I was (and still am) mildly incontinent and constantly getting embarrassing tests for cauda equina (this still happens now, I'm beginning to think I'm irresistible).

My MRI came about and the results went missing. The GP referred me to a neurologist/neurosurgeon and I had another MRI in preparation. That MRI showed a herniation at L5/S1. The neurologist booked me for a microdiscectomy but was confused as to why I was getting the other symptoms as he felt that where the herniation was would only cause pain up the back of my right leg. He warned me the other problems would not go away with that surgery.

I had the op in Jan 2011, it reduced my sciatic pain and the weakness in my leg. However, within 2 months my neurological pain was getting worse and my pain was back. I asked the neurologist if I had DDD, he said "Of course, that's the slipped disc we fixed", but didn't tell me why I was getting the other symptoms or recurring pain. I was referred to the Chronic Pain Clinic and had bilateral facet joint injections at L3-S1 in May of that year. It helped with the back pain for a couple of months so was considered "very successful" by the pain clinic, and I thought I would just have to put up with the rest. No further tests were done. In December 2011 we had to move. At this point I was on Butrans patches (30mcg at that point), Gabapentin at maximum dose and morphine suspension for breakthrough pain. I still did not have a diagnosis for my ongoing pain. I was back on elbow crutches through my flareups.

When I moved, I hit a brick wall. The GP referred me very quickly to the Chronic Pain Service but have been really terrible for communication otherwise. In April 2012 I saw the pain clinic for the first time. The doctor was great, and I felt I was getting somewhere, he said he would book me for a full spine MRI (my back pain was starting to creep up my back and he wanted to see if the hand symptoms tied in) and my facet joint injections.

By October 2012 I knew I couldn't go on, my back was in constant high level pain, my thighs were now constantly numb/sore and the nerve symptoms were more severe and widespread, with both sides effected, and my lower back, buttocks, pubic area and groin experiencing numbness (cue more cauda equina tests). My feet were hurting on getting out of bed. I fell 3 times in a week and hurt my knee. It was one great big flare from September 2012 to now, some days slightly milder but not gone. Due to many factors (mostly clerical error), the injections didn't happen til November 2012 and I only got my MRI last Saturday, AND it was only a lumbar one. The GP refuses to change my pain medications without a letter from the pain clinic, which they forget to request for weeks on end (I asked for help at the beginning of October and was still waiting after Christmas) and to they stopped my morphine prescription as they felt it would interact with the Butrans, true in some cases but not mine. I had to write a complaint to the pain clinic, GP and local NHS complaints dept.

I am now on 35mcg buprenorphine patch (twice weekly patch) and 300mg pregabalin. I have painful reactions to the patches, but the GP says I cannot be allergic or I would've had them from the start. The patches still don't work, but they won't change me without me actually seeing the pain clinic. The complaint meant I finally got my "urgent" appointment through, and it is for the end of APRIL. I had asked the pain clinic doctor to outline possible medications and his diagnosis. He didn't answer the first part, and his official diagnosis is....wait for it....lower back pain with radiculopathy. That's the exact term the GP used to refer me to my original pain clinic with in 2010. I am no further along at ALL.

Over the last couple of weeks the GP has done a blood test for "everything" and tells me I can't possibly have RA (no RF), any other kind of arthritis, or Fibromyalgia, because it would show up. I had had an Xray of my right heel as it started hurting out of nowhere, and have a lump in the bone, but no arthritis showing in that part of my foot. I now feel that any "radiculopathy" will be permanent. I can't walk without sticks, sometimes I can't get out of bed, never mind manage the stairs in my house or go out. My legs are wobbly. The most time I have managed outside in the last month is half an hour at a time, perhaps once or twice a week. I lost my voluntary work in October and am unemployable. I am less mobile than many 80 year olds and it has been suggested I get a wheelchair (the docs don't agree because it'll make me give up trying apparently, don't get me started on that). I feel totally useless. I have no clue what to do now apart from wait for the end of April and pray I can hold out, I have done since October I suppose and I was sure I wouldn't cope another day then. The GP says he has discussed my pain relief with the consultant and they have agreed there is "nowhere left to go" with medication. I know that isn't true, so why are they saying that unless they think it's all in my head? I know it's not in my head, and if they think it is they should lock me up now. I feel they don't want to help me any more, I'm just a nuisance. The one bit of good news is that the GP has finally agreed to refer me to a neurosurgeon. It will take time, but maybe the answer is in the new MRI if NOTHING else is showing up? There has to be something somewhere or I am going to break down. How can I be this bad and not have anything backing me up? :(

Sorry for moaning and thanks for having me.

Kathy

[ Hi Kathy,

By my name you can tell all my problems are neck related I had c-4 thru c7 fusion. However I come from a long line of spinal problems. I will say I had member in family have the same procedure as you ---pain over time got worse ansd wore....to the point finally got another MRI --and come to find out its not un-common for the disc to - re--herinated again --2nd surgery for him was a fusion ...now he tons better for it. I would suggest get another MRI --and seek a good neuro --or ortho spine surgeon. Hopefully more back experts will chime in to help. Best Wishes !!!!

Hi mg_neck_prob,

Thanks for the reply! I do think it must be something along those lines although I am puzzled by the most severe symptom, the thigh, buttock and groin numbness and knee/thigh weakness issues. These are not L5/S1 issues, so I am totally stumped. I understand from looking online it could be a problem somewhere between L1 and L3 but when these symptoms started (nowhere near this bad) nothing was mentioned by the neurosurgeon at my old hospital for that area, even with the MRI report (which I don't have). He was stumped by those symptoms, not even having an idea or test to try. His only focus was on the L5/S1, and he wrote off the other symptoms as something he couldn't explain or fix. Now these are the worst symptoms I am terrified it will still be unfixable. I suppose I just have to wait for the neurosurgeon appointment. The GP hopes I will get seen before the end of April, unlike the pain clinic (otherwise known as chocolate teapot clinic) lol.

I am hoping I will get a copy of the MRI report before April, it was ordered by the Pain Clinic so it might be that they don't "share". They've not been very helpful so far despite my promising first visit.

I forgot to say in my first post that the 2nd Facet Joint Injections in November 2012 were totally unsuccessful and I was disabled with crippling back and rib pain, and electric shocks down both arms.

Thanks again

Kathy
xx

I've had a phonecall from the GP this morning to ask me to go back for a repeat of one of the blood tests I had. He asked me when the flu symptoms started, and because that was quite a while after the test, he says he wants to repeat one. I have no idea which one he means but he wants me to be fully better before I take it so I don't get a "false positive".

Good Morning Kathy, I do think you need good neuro there is a disease called RSD --that comes from trauma esp from spinal surgery -- I think alot of people have it --you can even get it from a broken leg...etc... there is thread in here called rsd &crps click on quick links under marks forum --just a suggestion you might want to copy and paste this again in that site ...I def know its not in your head . Trust me I understand pain and even know after 4 level fusion I get nasty flare ups and the only thing that works for me is predisone ---takes awhile but it helped so much the problem is the nasty side effects. I wonder if its your white blood cell count in high. My other suggestion trust me I respect the medical community but its far from perfect. I was blown off almost a year before i could even get a mri --of neck then g.p said wow --its what i suspected all along --really u had me suffer in pain for a year sending me to chiro without having a mri --the min she got the mri results was your need to see a surgeon yesterday all 4 disc are pressed into spinal cord ---i went parlayzed on right side --surgery fixed that now...if it went any longer it would have been perm. I also had cancer kept going for a year complaining before i got pet scan then --wow --i was in surgery that same week. Now my g.p never questions anything I say . My point telling you all this is to obtain all your medical records blood work, mri , even surgery report. I learned the hard way you have to be your own advocate. Im just so very sorry your dealing with so much pain this needs to be addressed ...u need to fight for your rights not to be in pain. We show our animals more compassion then some of these docs show there patients. :hug:

Hi guys, and thank you so much for the replies. I am sorry for the delay in my reply, I have been "laid up" with the flu and haven't really been up to using the computer til now. Unfortunately as I've got slightly better flu wise, my back has also flared, with the nerve symptoms being particularly hard to cope with. I am now getting horrible electric shocks, like red hot needles, up the entirety of my back and down my arms and legs. The burning on my thighs is worse and I can feel something "wrong" in my spine, higher up than my operation site (probably around the L2 area I think). I can't even wear a bra at the moment because my arms get pins and needles and the shocks get worse. I'm trying not to sound really moany in this but I have to say what's going on. I'll try not to be too whiny about it, although I think the lack of energy from the flu is making me feel a bit defeatist and low!

I rang the neurosurgery department today to see if there was any news on why I hadn't received a letter saying I was on the list. The lady I spoke to was really lovely and helpful. While I was on, I told them about the MRI I've had recently in case it saves time in the appointment process (she mentioned they might be holding off giving me an appointment while they arrange one, so that has cut that bit out). I also explained that while I am not very mobile I only live 2 minutes away from the hospital and will take any cancellation at any level of notice. I'm not doing anything, am I! In the meantime I am on their list but haven't as yet been allocated an appointment. I really do think though that this is where the answers might lie, as I feel I am not really getting anywhere with the pain clinic - I feel as though they are less concerned with what is wrong with me than they are at just dealing with the symptoms - I don't think that's unfair of me to think that?

I have got to go back for another blood test, but only once the flu has totally gone. Nearly two weeks in I am over the chills but not the weakness and aches. It's hard to work out where the flu ends and the "normal" backache/weakness starts lol!

Anyway I really appreciate the replies and ideas, I am going to do a bit of googling now to read up more on what you've suggested xxx

Another update...

I have a neurosurgery appointment through for the end of this month, I am so relieved. My back has been pretty bad and I have been very guarded in my movement because of that, obviously. However, life caught me off guard when I slipped on a magazine someone left lying about and jarred it badly two days ago. So pain is pretty bad at the minute and I found myself digging out an old bottle of Oramorph which had a drizzle left. The GP had taken me off that because apparently it stops the buprenorphine working but I have had conflicting advice there from the hospital. Either way it worked and I can't get more. I had some nefopam left from my last visit to Casualty, so have been using that as I know it's safe for me, but it has a very strong effect on my head and not so great on the pain. The GP would be unlikely to continue that, so I am stuck as he is reluctant to give me any "topup" medication at all. God knows what I will do when it runs out. I hope my back improves at least until my appointment.

I have weaned myself off the Pregabalin as I have gained a dress size since I started it, and that's not a compromise I'm willing to make for a medication that only gives very limited help (and then only very mildly on my nerve symptoms, not my "mechanical" pain). I am already a big girl and I don't want anything stopping me getting surgery if they say I need it, so it's not worth it. So now I am only on the buprenorphine patch, and paracetamol if I bother with it as it doesn't give me any relief despite what the GP says about the "pain relief ladder".

I started smoking again very briefly through a very bad night of pain but have stopped again. Again, I don't want the docs having any reason not to operate if I need it.

I could really use some advice on weight loss. The GP says that the pain clinic have instructed him that I am not allowed to exercise (other than manageable day to day activity), and I am not allowed physio. I wondered if I could get away with swimming as I'd like to lose a fair bit of weight before I see them at the end of the month. I have been eating healthily (far more so than before the Pregabalin) and yet have still gained weight on it, so I am hoping a combination of healthy eating and swimming will get some weight off quick? I have previously used Reductil for weight loss under the GP, many years ago, and I have wondered whether that would be safe with my meds, I would have to go through the GP anyway so will ask him too. I can't use the fat binder types (Xenecal etc) as I have IBS. :confused:

Hope everyone else is doing well, thanks again for reading xx

in some circles, IBS, is thought to be doctor speak for "I Be Stumped."
have you been tested for celiac disease? don't let the fact that you are over weight stop you from getting testing. Swimming has not been found so good for wt loss, walking probably better. portion control is important. good luck!

Hi Kathy
 

Dear Lady, I am so sorry for all you have been through. It sounds like the doctors that have seen you are shuffling you back and forth with no real solution if I read your post correctly. There is always help... it just sounds like they have given up. This is NOT in your head, and for them to suggest such a thing isn't right. Can you go for more opinions? If you can get a copy of your MRI report and Post it, there are many here who can read them and give you an accurate accounting of what is said in the report. If you are experiencing, bladder problems, that is an indication that there is definately something wrong in the spine. The important thing is not to get discouraged as you go forward. Get all your records, and see somebody else, Run off this letter to NT, Be the sqeeky wheel that gets the grease. You need more than what you are currently recieving in medical help. You qualty of life is effected, and I know how sad and depressed this can make a person. My first neruo was horrible, and it took several more interviews for me to find a neruo I did like and trust. They thought they were interviewing me, when the reality was I was looking them over!!!!! Your doctors also need to communicate with each other.
You will get the support right here on NT. Lots of spine issues going on, with fantastic information. Sometimes one of our friends here, can suggest a doctor in your area. These posts are from all over the world. Good chance someone will know of someone close by you.
Do not loose hope, but try to go forward, and find those that can help with out shuffling you around. That gets old real fast when you are in pain. You will be in my thoughts and prayers. I will also listen to you anytime. I wish I had more to offer in the way of ideas. I know back pain well myself, so I do know what you are going through. Has the SCS pump been mentioned to you? ginnie

Thank you both so much for the replies.

The IBS diagnosis was given after a couple of bouts of RUQ agony that landed me in hospital for a week or two each time. I had ultrasounds and an endoscopy which showed mild gastritis/redness of the stomach lining but nothing around the gallbladder, which they had initially suspected. I do get a "stressy stomach" sometimes and there are some foods that set it off, but I feel this is pretty normal with most people, it was the pain that was terrifying. As they couldn't find anything, they tested me for coeliac and some food allergies and all were negative. What is interesting is that after the 2nd facet joint injections, my back pain and nerve symptoms spread upwards and included rib pain that was incredibly similar to the RUQ pain I had - I do wonder if it's more a neurological issue related to my back rather than the gastrointestinal issue it was presumed as. That said, the hospitalisations came at a time I was on strong oral painkillers and was the reason behind me going on the patches.

I have tried to get hold of my MRI report but they have told me it is not allowed, it only gets sent to the doctor that requested it, not to patients. At my last hospital (under a different NHS area) I was sent a copy of an old MRI, so I think it's a local "rule" rather than a legal issue. I have asked to be sent a copy by the consultant once he receives it, he might be more forthcoming. Saying that, I won't see that consultant til AFTER the neurosurgery team.

I know what you mean about finding the right doctor, and I do think that half the problem is that these doctors are looking for what they specialise in, rather than the whole picture and history which might be out of their specialty. Once they have ruled out what they know, it's not their problem any more. I often feel like they are just thinking "What do I tell this woman to get this over with til next time?" and that it's more about time management to some of them than "fixing" me. Because of the amount of time between appointments it sometimes feels like I am meeting them for the first time each time I go and that the majority of the time is spent going over old ground again. Does that make sense?

As for the SCS, I have a hunch that is what the doctor was hinting at. When I shared this hunch with the GP he agreed but that's mainly because that's the only op we can think of that the Chronic Pain Service would be talking about under my circumstances and lack of diagnosis. It's a big thing to consider though, especially if there's an option that deals with the cause itself. Of course we won't know if there is without a diagnosis.

Swimming is the only exercise I can think of that is low enough impact for me. A 15 minute walk around the local park has my heel and back in a lot of pain even on sticks. I feel that if I don't find a suitable exercise solution that I *can* actually do without too much repercussions, this problem is going to get worse. That said, I have been this way for months and it's only since the Pregabalin that I started gaining weight, as I try to eat healthily. More so now! Portion control is everything, which is quite hard when you're awake 20 hours of the day and fairly "stoned" on meds that aren't taking the pain away. I used to comfort eat a lot but have knocked that on the head, although some nights I lie awake remembering the days when I could get away with snacking through pain lol. I think overall my calorific needs must be minuscule because of my inability to move around much lol.

I used the Nefopam again last night and the last two times I have used it (not at the full dose I'm allowed either) I have had quite frightening experiences. The night before last I had it in my head that if I shut my eyes I would see something terrifying, and ended up awake most of the night with the room spinning, something that sounds really silly when I'm not "under the influence" but shows the psychological effect on me at the time. I just wasn't mentally capable of telling myself what an idiot I was being. Last night I woke up nearly being sick in my sleep and had moments where even sat up in bed I was falling back asleep and dreaming very vividly within minutes, then waking. This repeated all night with each dreaming period being between 10 and 20 minutes. I have been feeling very nauseous and have had a killer headache much of the day, but that's not surprising when I have lost so much sleep. It's gone now but what a hangover! I won't be touching it again. I said that the night before last though and last night turned to it in the hope the previous night had been a one off, it's so hard to not try anything when you're in that much pain. :eek: I just want one night of good sleep, it has been months now. I don't know how much of my exhaustion is that, the medication or whatever's going on with me!

On the plus side I said 6 months ago that I would not be able to go on for another day and I've done 6 more months. There have been milder days and there have been really bad ones but I must be stronger than I thought, even if I feel like wailing "Woe is me" all the time and spend my life apologising for being useless! :grouphug:

Thanks for all the support, it really means a lot xxx

Hi Kathy
 

In this country by law, you are allowed to get all your medical records including the actual MRI and the written report. Is this not the case in your country? ginnie:hug:

It's a lot more complicated here, you generally have to fill out a lot of forms and pay for the privilege and then it often takes months to get anywhere. You also have to have a good reason to see them, and it is at the doctor's discretion as to whether they will let you see them.

I remember how difficult it was to get my and my son's medical records from his birth after medical negligence, and how many hoops I had to jump through, only to get a copy that had been altered to suit their case after the fact (but that's another story!).

ETA: On a completely unrelated subject, I forgot to mention a strange new "symptom" - very strong clicking in the correlating area of my lumbar spine where the tender skin covers (roughly L2-L3 ish?). This happens every time I sit up from lying and quite often on standing or sitting from standing too. I know everyone's joints click a bit at some point but this is very loud, I can even feel it in my teeth and my husband often tells me it's "not normal" in astonishment. It seems to be originating from the area of flesh covering the parts of my spine that are extremely tender to the touch. A casualty doctor has noticed the tenderness and said it feels like I have more than one bulging disc from the pain I got from him running his finger over it. Does anyone else get this level of clicking and grinding?

Hi Kathy
 

I tell you, that would tick me off in the worst way. Whose body is it anyway. yours or your medical staff? Don't like how they work it for you overthere, you should be able to see anything you want. Your body belongs to you. wish things could change....ginnie:grouphug:

Thanks Ginnie - I wish that too. That said, we do get our treatment mostly for free so we are lucky in that way. My husband and I were watching "Monsters Inside Me" the other night and were amazed though how quickly people in the States can access specialists, did they depict it correctly in that you can contact a specialist yourself or do you still need a referral from a general practitionner? I suppose that depends on your insurance though too? Thanks for the virtual hug too lol, needed that :grouphug:

Re: about specialists Kathy
 

For the most part, you do need a referrence from your PCP to get into see a specialist. The wait time is short where I live. I needed spinal fusion, and was in the OR in one wee time.
Hope things work out for you Kathy. We all look for answers. ginnie:hug:

Kathy --how are you doing this week?

Hi - thanks ever so much for asking after me, but I'm not so great today. Yesterday I tried a little trip out - we only live a couple of minutes' walk from the city centre so tried for a pootle down to the town to look for some relief from the heel pain (shoe shopping). Couldn't manage it and came home in agony, had to get the bus home even though we're so near, it was awful. Spent the night feeling like I had been kicked in the privates and back and with both heels in a lot of pain too. Got up this morning to a letter from the pain clinic, they've cancelled my appointment at the end of April and put it even further back to the end of May. Gutted is an understatement. At least I have the neurosurgeon appointment at the end of this month.

I rang the GP for help with the pain and it was like he wasn't hearing me, does that make sense? He kept saying that he can't change my medication until I've SEEN the pain clinic. He then completely changed this by offering me more nefopam. I am disgusted at myself because I said yes because he clearly wasn't going to offer me anything else. I can't believe I said yes to it when it made me feel so scared the last two times. He is giving me some cream for my heels, no idea what as he didn't say. Regardless of all that though he has not addressed the back and groin pain at all, and I can't get out of bed for it today. He wanted me to increase the Pregabalin despite me saying my nerve pain wasn't helped by it and I was gaining weight. I didn't dare tell him I came off it. Why would he be fine increasing the dose of a medication that's not working and yet not helping me find another one that might? It's no wonder people turn to illegal drugs.

He has referred me to occupational therapy as I said I need help at home (adaptations for example) and something to help me get out of the house. I can't cope on the crutches any more, it's not enough. I can't get in the bath, my husband has to help me and I'm not a light person lol. He is also blind so I should be looking after him, not the other way round.

Feeling very despondent, my pain is really bad, the buprenorphine isn't touching it any more and hasn't been for months and neither is the pregabalin on the nerve symptoms. I can't get mobile, because it makes things worse, and when I'm immobile, the pain gets worse. What can I do? I will try anything. I can't just lay here and get fatter and fatter and have them turn and say they left it too long to operate because I'm too heavy or the nerve damage is permanent. I really don't know what to do any more. :confused:

Hi Kathy
 

I am so sorry that you are having these problems. The med. you ditched, I did also, as it effected my mood and did nothing for my PN.
My son is an OPT. That route is a good way to go, but you need more than that. You need to find a doctor in sink with what you need in medications. It sounds like your needs aren't being addressed adequately, or you are not being listened to.
I know it hurts to move around, but this is the best path to more independant living. If you can get regular physical therapy as well, that may help with your mobility. You will loose weight if you get a bit more active. I sit in the garden on my butt to do the gardening. There really is a benefit to any hobby you engage in. I did loose weight, and found I could walk alot better when I did. I sure wish you all the best Kathy. Your husband is wonderful, and I am glad you have him in your corner. ginnie

Ginnie you're amazing, thanks for the reply. You're right that Baz is a diamond, I couldn't have got through any of this without him.

I had a good night the night before last for pain, the nefopam worked wonders for the first time. I laid in bed with an icepack on my heels and watched a film while I was comfy, sounds like nothing but it made everything better for a couple of hours. Didn't last long but it was still worth it!

Went out yesterday, saw some family I haven't seen in over 10 years - weird but good. After that my sister offered to take me to Ikea for stuff for the house. We spend hours there normally and I was a bit nervous but knew I could use the trolley as a walking aid lol. On the way to get into the car, I slipped on some mud and went flying. Landed on my bum and my wrist, and twisted my ankle. I was covered in mud and my daughter and niece were straight to me to try and help, but were holding back the giggles. My sister saw I had fallen and rushed to help me and did exactly the same thing. That was it, we were hysterically laughing more from the shock than anything, but we looked a right state! Covered in mud and laughing like madwomen. It was strange but apart from my ankle I didn't hurt at that point, so we got cleaned up and went to Ikea. It was at that point the pain hit and I was very sore last night. I thought I had torn my ankle but I can put weight on it so I can't have. Sharp pains up my shin but I think it's just been "shocked". My coccyx is killing, but I am REALLY lucky my back wasn't hurt more.

Today is Mother's Day and my kids have surprised me with gifts and spending the day with me (they're normally out with friends). It has been lovely! I don't need gifts, just them to be happy and safe because that's what matters to me. My back is very sore but they're insisting I rest after the fall. I am going to try for a gentle walk with the dog later. I think that's the key to the exercise, because the dog needs to lose weight too and it doesn't take much to go to the park, let her off for a game of fetch to wear her out and they have benches to break the walk up. Polo (the dog) is also very aware of when I'm sore as she's a little nurturer and worrier! She never pulls when I'm unsteady or slow. It's not far from home either (and daft as it sounds it's also handy that the hospital is on the other side, as we've had to go there from the park before haha!). I will make sure someone's with me to be safe though. It does hurt to move around but when it makes someone I care for happy, it's worth it. The park walk is a good one because everyone loves going, Polo goes crackers for a game of fetch and that makes everyone happy. She's known for being a bit of a stresshead, so when she's genuinely joyful and giddy, it is lovely to watch her relax and have fun - she's a rescue dog so she deserves all the fun we can give her.

I'm gabbling now, probably the nefopam, possibly the chocolate too lol. Thanks for the reply, I hope you're ok? Happy Mother's Day to the mummies out there too.

Hi Kathy
 

I got the picture of all of you laughing, while you were covered in mud. Some stuff is funny even if you did get an ouch. I have done that a time or two myself. I start PT on tuesday, because I did take a spill trying to do too much. I was in the garden today, on my butt and active. No time to wallow in the pity party for me! I hope that you can get back to some activty. Heal quick from the fall, and stay out of the mud.....
When I showered after my time in the garden, good grief I was covered in dirt head to toe, and also had paint on me from painting the picket fence. I will sleep good tonight, and I hope you do too. I try to wear myself out so I can sleep. and most of the time it works. This is what I got involved in to loose weight. After many missed years when I wasn't walking real well, I now can go to the beach for a short time anyway. That walk helps the weight too. Yep, and now I go for the ice cream....great example.... Have a good night Kathy. ginnie:hug:

Aww Ginnie, I'm totally mortified now as I was coming on to have a moan. The fall has caught up with me - my back is horrendous and my left leg has pretty bad muscle aches all the way up to the thigh. Not great when your right heel has tendonitis! And to top it off I have (again) a sore right eye. Not that it's relevant but it adds to the dramatic appeal. :rolleyes:

Thank you so much for the tips, I will try and wake up brighter tomorrow and get on with things, it can't do anything but help now. Hope you are well? xxx

Hi Kathy
 

Hope the soreness and injury heals fast. It's OK to moan and laugh at the same time. I fell over my own pile of mulch, nice one.... So much for gentle gardening. In any case, fell better soon, and get your body to relax as much as possible. Hope you have something that can help a bit with the pain. Sleep good tonight. ginnie:hug:

Oh no Ginnie, I'm sorry to hear you fell! Are you ok? Was it a soft landing on the mulch lol? I'm not laughing, honest! Not if you were hurt anyway...:D

Occupational therapy came out to the house today and have been amazing, they suggested things they could offer that would help (raised loo seats, toilet surround, perching stool, bed rail, high back chair and a battery run bath seat lift) and surprised me by coming back with most of it today. The chair and the bath lift should be here tomorrow, I just can't believe how quick and helpful they've been.

Pain wise I'm bad today but mentally better than I was. I feel a bit mixed about the help from OT, it's a mix of a huge amount of gratitude and a bit of sadness that I need the help. I got about five hours sleep last night which is very good for me for recently. I only woke up once too, an hour before the alarm was due to go off. Maybe that's why I feel a bit perkier today despite the pain. I've been more active today and I can feel it but still am glad I have been.

How are you doing? I really hope you didn't hurt yourself with the fall. Thanks for being so great since I joined, it's really nice to be able to talk to someone and you've been really kind. xx

Hi Kathy
 

Getting an OT is great!!!!! Guess what my son does...Yep he is an OPT. Has been one these past 10 years. Went Navy for the GI bill, got his education. he found his calling in caretaking with me for my mother while she declined. He was with her when she passed too. He is exteremly good at what he does, and helps me as well.
Yeh I took a spill, hit my shin first, twisted left, landed on my back with my head hitting mulch. Two weeks ago. I got my evaluation done today. I have lost alot of ground since my last spinal fusion. I am going in for a tune up! I will get better no doubt in my mind. going back to the place that got me going after my surgery. I trust them.

I hope you are doing better now that you have a bit of help. All those things recommended will help you to get around better and be more comforatble and secure. That helps the mental well being. It is hard not to be depressed when these health issues come up. I found help right here Kathy with the people I have met. I think NT helps me keep my own sanity.

I do like hearing what is going on in your life. You are doing all the right things to help yourself. Keep in touch. I am here to yak to anytime! xxginnie:hug::grouphug:

Hi Ginnie - that fall sounds like it was awful! I hope you're recovering well? What will your "tune up" entail? Sounds intriguing! Good luck with it!

I'm in alone today, very very sore and wobbly. The OT is coming back today though so at least that will break the day up. I can't wait to be able to get in the bath, at the moment I'm just too sore to manage it without the seat. I find the less often I can freshen up, the lower I feel!

Your son sounds amazing, he must make you so proud! :grouphug:

Hi Kathy
 

I know about wanting to get in the bath! It makes you feel better all the way around to be clean.
I am OK. Just sore. I have PT this afternoon. The therapist called it a tune up not a major overhaul. It will help get my neck back in shape.
So glad you got the OT in. Help like that will also make it easier on you. I just wish you pain level was not so high.
Yes, this son of mine is a good one. He keeps me in line! Have a good day Kathy, get into the bath and relax. ginnie:hug:

Spinal Implant
 

Hello, I'm new to here. I have had 7 surgeries with Reconstruction to many parts of my body since 2003. I was in a OIF (Operation Iraqi Freedom) IED Humvee acident on 5/13/2003. I ended up having 2 broken wrist, Rt broken hand, Crushed Rt lower extremity(had 8 pins in foot/2 srews in each side of ankle/steel rod lower leg), Shattered left knee from shrpnl, Rt elbow very hyber extented broken (pinkie touched back of rt shoulder), both shoulders dislocated, broken rt collar bone, broken nose, broken ribs, and finally multiple crushed disc. Also Military lost all of my entire military career file (June 1985 to when I got hurt 2003). I guess that it. I've had almost every pain medications availible. Dilaudid and morphine is just like taking a tylonel for me.
Anyways, well I just had a Spinal Stimulator implant surgery last month Feb 2013. It was the worst pain I every felt the next day. I'm very tolerant to pain. But this surgery hurted me the most. I could'nt caugh nor move my upper and lower extremities. Just before I left the post op to come home. I had turned on the Implant. I only had felt it working in my left back rib area. I had asked is that is normal. The assured me that I will feel more as time goes on. I had a post 2 weeks appt where I had an Hematoma where the implant was installed. The dr took 17 cc's of fluid out of the hematoma. Then 3 days later I had to go into my local ER and have them check on the hematome. Which came back. The ER dr took 22 cc's out. Now a few days ago I went in to my Spine Doc to checked out my hematoma and get my implant programmed. When I went in for this appt I had went to my medical dr ahead of time for some Xrays. I brought the Xrays in to the spine doc and they did try to program the implant. A half hour went by without them trying to program thi thing. They finally looked at my xrays and it turned out that the Electrodes had moved of the spine. So now after all this I have to get a redo surgery. Ast the old sying "No pain no gain". Yeah right! I'm just o tired of the pain. Not to mention I have liver disease due to meds and also Diabetes. Sucks! Sorry so long I just had to vent! Plus still fighting the govt for my military benifits, retirement, disbility. They owe me almost 10yr of backpay. :confused: :mad:

Hi popeye, I'm really sorry to hear of all you've been through. It would definitely be worth starting a new thread for advice specific to your case, people are lovely here but it might get overlooked with it being on mine.

An update - well, jumping out of the window is now looking far more appealing. I have my MRI results and the GP says there is nothing on there that could be causing any of my symptoms. I am beyond heartbroken. I am not able to go out any more because my legs are so wobbly and even short walks make the pain so much worse. A physiotherapist was sent out by the OT to give me a rollator but what's the point - I'm only bloomin' 36 (nearly) and this is getting worse every day. It's not fair to live like this without knowing what it is and how to cope. I am in so much pain I have only had 2 hours sleep over the last two days. The burning and numbness in my thighs and groin is so bad I can't make love with my husband even if by some miracle my back pain disappeared.

The MRI shows (according to the GP) a mild bulge, mild narrowing of the foramen and dehydration of the disc at L5/S1, which is where I had the microdiscectomy. None of that is bad enough to treat and none of it ties in with the thigh burning or weakness. The GP says the neurosurgeon probably won't do anything. He says nothing else shows up on the MRI at any other level.

I'm guessing the narrowing is from the bulge? He didn't mention stenosis at all and nothing showed up like stenosis on my last MRI.

What can I do? I can't go on like this and have no idea where to turn. :Sob::deadhorsebeat:

Hi Kathy
 

Yes, it must be frustrating. Mild in the language would not indicate the problems you are experiencing. You are young, and I would not stop seeking the answers. Maybe not a neurosurgeon, but a neurologist. You need to see if there is anything going on like RSD. That burning you feel, sometimes happens to people with RSD. This is a nerve condition, and there is a post place for this disorder. I would seek a few folks from that link and ask. There is lots of information there about this disorder. I hope your GP will refer you to a neurologist for evaluation. At 36 you don't want to give up. Your pain is bad enough to keep going forward until somebody tells you what is wrong. It isn't in your head, so don't even go there. You know your own body, and need to find someone active in trying to solve your problems. I am in your corner Kathy, and so hope you can find the help you need. Your husband must be a good man. I am glad he supports you. He will need all the patience he has. Both of you together are stronger than this problem Stick close to each other as you go forward. ginnie:hug::grouphug:

Thanks Ginnie, you've been so kind. I don't seem to fit in with RSD as someone on another board suggested it a while ago and I read into it - I don't have any skin, hair or sweat changes in the areas that are effected. I do get swelling in my right knee but that's not an entire limb and I can't think of anything that set this off, like an injury, like they say in the info I have read.

I had a good mope and cry last night, how daft is it that I'm disappointed about a relatively normal MRI! I honestly don't know what the possibilities are any more, I presumed that because the symptoms were so much worse than at my last herniation that this MRI would show maybe the reherniation at L5/1 AND a problem at L2/L3 or throughout the lumbar spine that would correlate with the leg symptoms. I am completely dejected. I know I still need the cervical MRI but that wouldn't explain the leg symptoms even if something showed up that explained the more minor hand issues.

Does anyone know any non-mechanical causes of this level of radiculopathy? I don't feel that I have meralgia parasthetica as although the thigh burning ties in, the positional aspects that relieve/exacerbate things don't and I am not known for wearing tight clothing (not with my figure LOL). Also that wouldn't explain the back pain higher up from the L5/S1 area. I think it would be too much of a coincidence to have an entrapment further down the nerve too, although not impossible I know. Just seems that all my problems feel connected, the thigh burning started at the same time as my disc herniation. If only that level served the outer thigh it would stop me feeling like I'm going crackers!!

My old pain consultant believed I have a "floating coccyx" from a fall off a stool in 2008/2009 (can't remember when), as I can feel a "clunk" when I sit down and had severe coccyx pain after the fall. I don't know if that makes anything more likely, although that's likely when the herniation got bad.

The only other thing I can think of that is mechanical rather than systemic is spinal instability, as that would tie in with the clicks I get where my pain is, but if I had that it would have to be at L5/S1 for a starter (so not where the higher pain or clicks are) and I would think that if it was a problem higher up, it would show up on an MRI? In fact if it was instability at all it says online that an MRI would diagnose it. So that's another one down.

Given that arthritis would've shown on the MRI, and have negative RF in my bloodtests, and no other bloodwork that suggests autoimmune, I can't think of a single thing else I could explain this by. I just have a horrible feeling they're going to think there's nothing wrong or that they will make me wait another year for a referral to someone else - by which point I won't be around as I can't do this. If I find out that the nerve pain is permanent damage from having waited so long, I am likely to go mad. :confused:

After all this, I really can't bear the thought of me having no options left. I've already had gabapentin and lyrica and they didn't work. That's all they're likely to offer me if they can't find anything. I was really hoping for something to show up that they could fix as I have no other options left other than putting up with this for good. :(

Hi Kathy
 

Don't go crackers yet OK? Have some hope that this can get better. Ask your doctor to put you on B12 shots. I have PN, and this helped me. I do have a kind of nerve damage, and it got a bit better over the course of this last year. I am wracking my brain trying to figure out what has happened to you. Something set the nerve off, there has to be something to calm it.
Have you tried lidoderm patches? It is a numbing agent, most insurance does cover. As far as the cause, ask MrsD. I don't know if she saw your post, but you can PM her. She is brillant in figuring this out. Re-post also on our home page mabe, to draw more response. Have you used the search up at the top in the blue bar? type in nerve damage and see what pops up. someone here on this site, should be able to relate to what you are going through. Don't let the docs. push you aside. this isn't in your head, so don't let them tell you it is. Fight, it is your life and quality of life you are after. Make sure those doctors know that. I do care, and just wish I new more about these kinds if neuro problems. I am in your corner...ginnie:hug:

Hi Ginnie

thanks ever so much again for your help. I've written out a long reply in the chronic pain forum thread I started the other day. I can't type any more now, pain and meds kicking in. My heads fuzzy or I could post the link in here. Bad bad day yesterray. Maybe better days coming from what came of it. xxxxxx

my pain clinic appointment has been cancelled again, theyve put it to the end of july. when baz gets home i'm going to get the gp to admit me to hospital, it's all i can think off. exuse the typing/typos i have had diazepam and it hits me like a ton of bricks. only got enough for today though.

Hi everyone

Thought I'd update you all on what happened after my last post.

Well, I rang the GP practice to get admitted to hospital and a GP rang me back. I'm not entirely sure how to judge what he said, because I know there are some that would agree with him, but it came across as really unfair and unkind. He said I should just learn to put up with the pain and stop putting on them. He said he wouldn't come out for a home visit (which I didn't ask for) but would see me at the practice if I could get up there, however he would not be prescribing anything (again I hadn't asked for that, I needed admitting). I was really upset after coming off the phone but felt that if I didn't get myself up there I wouldn't get any help. So I tried to get dressed, and that's when I had a bad fall. My legs couldn't hold me and I hurt my knee and back falling, and couldn't get back up. Baz was extremely distressed by this and rang 999.

An ambulance came, by this point I couldn't feel my feet at all and my back was spasming so much I was struggling to breathe. The ambulance team were amazing and gave me IV morphine and a "gas and air" thing to breathe through for the pain. Then, when I was "stoned enough", they got me into the ambulance and to the hospital casualty department. I saw a doctor there who had to do the cauda equina test as protocol, and she said that because I already had an MRI done she was admitting me to control the pain and probably to have surgery the next day. I was taken up to an Assessment Suite ward.

On the ward I saw their consultant who sent for a neurosurgeon. They kept me on IV morphine (directly in rather than a drip) and I was still in pain. the neurosurgeon reviewed my MRI and thought it would be best NOT to operate at the moment as my symptoms didn't align with it (which I knew already and agreed with). The plan at that point was to get my pain consultant (you know, the one that keeps ditching me) out the next morning. They said their number one priority was to make sure I didn't go home unmanaged, I was so relieved by this promise that I was quite tearful. I had been due to change my buprenorphine patch that night but the ward didn't have any, and I said I wanted it changing to a new med, so they left that for the pain team to work out.

Morning came and went and the nurse told me that my pain consultant had been rude to her on the phone and refused to come down. He said to "stick another patch on her and send her home to see me at her normal appointment". I was heartbroken at this point. By this point I had not had my usual buprenorphine patch and I had a killer migraine - possibly from withdrawing (bit early but could've been) or the morphine. Either way I was in a lot of pain from my back and also couldn't open my eyes or stand up because the migraine was so bad I thought something was badly wrong.

I said the pain consultant's answer wasn't good enough and reminded them that they had promised not to send me home unmanaged. So they got another of their consultants out, and this was where things got a lot better. He was the assessment suite consultant, but also works with patients with fibromyalgia. He said my problems seem a lot like fibro, but not widespread enough, although that doesn't mean I don't (or do) have it. By this point (late afternoon) I had had to admit to myself that the buprenorphine must've been working a bit for me as my back was much worse without it. He said I am getting tolerant, but that doesn't mean it's not working at all. So he suggested that for now, he gives me some temgesic to "top up" when I have a flare like this, which would give me more control and a better idea of if it's working at all. He also upped my pregabalin to 450mg a day (150mg in morning, 300mg at night). He also wanted me to try Cymbalta for the neuropathic pain and for the (understandable) depression the pain is causing. We had a good long chat about how exercise and mood effect my pain and he came up with some great ideas for me to try, including ignoring the pain clinic's ban on exercise and/or physio. He thinks I will turn out to have one of the chronic pain disorders like Fibro as it is clear from the tests they ran that the pain is not being entirely caused by my back problems which are minor in comparison.

So I came home last night with the pain clinic having begrudgingly said that they will now see me in April, although they refused to give a definite date, and I will believe it when I see it - they'll probably send me an appointment and then cancel it again lol.

I decided to only start the Cymbalta last night, rather than the temgesic and pregabalin rises as well, so I could judge any side effects or changes in pain specifically to each. I woke up this morning (after my first full night's sleep in over 6 months) and could FEEL MY THIGHS!! :eek:

I know it's early days but I do feel that doctor listened and understood and that's half the issue. The other half is being able to have control back and he totally understood my fears of being seen as a drug seeker (and agreed I need a change of GPs, but I have to do that carefully). If I can help myself during the flares, the less likely it is I will have to seek help elsewhere and get seen as a drug seeker.

All the doctors I saw in hospital think the spinal chord stimulator is a high probability in suitability for me now, especially when they considered that I don't want to spend my life on high level drugs. All the doctors said it's likely that whatever is causing the pain, the nerve damage to my thighs is probably permanent. All of them understood and all were very nice. And they've ALL seen how unhelpful the pain service have been to me and to them. So I do think as much as I am still at home and still wobbly and sore, I am in a much better position now than I was at the beginning of the weekend.

I'm really sorry for my down posts, and embarrassed about my typos on valium! I know I'll get low again, but I also know that there ARE people who care out there if I can access them. I am going to send the nurses and that doctor a card to say thank you. xxx

Today was my neurosurgery appointment, and the consultant was really, REALLY lovely. He showed me my MRI, and although the report said I had a bulge in the disc I had the microdiscectomy on, he showed me that it's really tiny and is just a little bit of scar tissue. He said it's enough to cause my sciatica (which I knew) but there's nothing there that needs intervention from a neurosurgery perspective. I asked him what he felt was causing my burning pain and leg weakness and he showed me that the corresponding disc for that area (L2/L3) is absolutely great with no impingement on the nerves. He then asked me if I'd read about CRPS and told me that's what his diagnosis is. I know that's not a great thing to have, but oh my Lord I'm so relieved to know, to just know. All this time with a diagnosis of "lower back pain and radiculopathy" and I don't have radiculopathy at all. I want to dance and tell the GP to shove that in his pipe and smoke it, as my Grandad would've said lol. Not really, I want a good relationship with the GP but at least I have something I can say, "This is what it is, this is me". I'm sure I'll get low about it soon but for now, I'm just grateful to the consultant. Also, the best bit is that he's writing to the pain clinic to ask them to consider me for the SCS. A very very good result today. xxx

Kathy, I wonder how you are doing today? I have had many of your same symptoms and have facet joint disease with L5 radiculopathy causing my thigh to be numb and painful feet, making it very difficult to walk at times. I would love to hear from you!

Kathy it is a long shot because it is a very rare condition associated, in the majority of cases, with long term use of steroids, in fewer cases with obesity, but sometimes autoimmune. The physical cause is an accumulation of fat around the spinal nerve, causing compression and consequent 'neurological deficit' - neuropathic pain and mobility problems. I have it and the clinical name is Spinal Epidural Lipomatosis; if you search the web for that term you will find corroboration of this post and pictures of how it appears on an MRI. I hope this doesn't raise false hopes, but after all you are going through, all possibilities, however rare, need to be considered.

Wishing you all the best.