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  • Radiculopathy and back pain much worse despite microdiscectomy 2011

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    Old 02-12-2013, 11:07 AM   #1
    KathyUK
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    Radiculopathy and back pain much worse despite microdiscectomy 2011

    Hi everyone

    I am here hopefully to get some guidance from you guys if you don't mind, 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

     
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    Old 03-05-2013, 11:16 AM   #2
    KathyUK
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    Re: Radiculopathy and back pain much worse despite microdiscectomy 2011

    Just an update. I have a neurosurgery appointment for the end of this month. I have come off the Pregabalin because of weight gain (the GP won't be happy but tough), I can't be risking being turned down for surgery if they decide I'm a candidate for any. It wasn't working any better than the Gabapentin anyway. So I am just on the buprenorphine 35mcg patch twice a week now. My pain level is quite high but not the highest it has been. The heel is pretty bad. Worst issue is the exhaustion, I just can't motivate myself at all, I must look so lazy but I don't want to be this tired so I am trying really hard. Why can't any of these painkillers have a boost on that lol. I know I just need to be able to sleep properly instead of in tiny little bits, but if I can't sleep I need to be able to function through the day. Any ideas? xxx

     
    Old 03-05-2013, 02:39 PM   #3
    teteri66
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    Re: Radiculopathy and back pain much worse despite microdiscectomy 2011

    I'm so sorry I missed your first post and that no one else responded. I am very sorry you are having all these problems and that you have to wait so long between appointments. Without being able to get a series of comprehensive appointments to rule in or out any of the various forms of arthritises that affect the spine, such as Ankylosing spondylitis, it is hard to know which symptoms may be solely related to your back or whether they might be from another disease process.

    From my amateur ears, it sounds like you have several issues going on. I'm glad you will have an appointment fairly soon. The loss of use of certain leg muscles indicate nerve damage. By now you may have more going on than with just the L5-S1 segment. Have you had a flexion/extension x-ray to check for a spondylolisthesis? This is a condition (usually found at L5-S1 or L4-L5) where one vertebra slides over the top of the adjavent vertebra...it leads to instability and can cause a nerve to become "pinched." It also tends to wear down adjoining facet joints, etc.

    Also, just for your information...just becomes someone looks at a x-ray and says your back "looks fine," there is limited information provided by that type of imaging. It can see bone but cannot tell what is going on with soft tissue, nerves, etc. Disc issues do not show up well with x-ray.

    You clearly have something wrong that is causing lower lumbar nerve damage. I hope this new doctor will be able to figure it out for you and plan an appropriate plan of treatment.

    Again, I'm sorry no one responded. We are usually better at spotting new members and encouraging them to post often with questions, comments or just when you need to vent. We all know that people who have not experienced spine problems do not understand what we go through...so this is the place to find a supportive ear.

     
    Old 03-05-2013, 03:00 PM   #4
    KathyUK
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    Re: Radiculopathy and back pain much worse despite microdiscectomy 2011

    Hi teteri66, thank you so much for your reply. I know on busy boards sometimes the odd post gets overlooked so I understand why mine didn't get a response the first time round.

    I totally agree with the issues surrounding Xrays and their limitations, I remember being very worried about it at the time but trusting that if the doctors genuinely thought there was a problem they would know best. I know that sounds naive and I've come a long way since then, but it's hard to balance assertiveness and politeness too - I feel very much like the more I question the more I am made to feel like a moaning timewaster. I know that I'm not but these people only see these snapshots of me and not each and every day. I want to get as much information and help as possible without alienating anyone.

    I haven't had that Xray test, no. I have had one set of lumbar Xrays and one set of neck Xrays, both several years ago and not by the same doctors. The pain clinic and neurologist have only ever requested MRIs. I will ask about them, maybe there's a reason they "know" it's not necessary. I dunno!

    My biggest worry now is whether this nerve damage, whatever the cause, is permanent because of the amount of time I've been waiting for help. My eldest son had a birth injury that tore the nerves in his brachial plexus and within 3 months the damage was bad enough to be permanent without specialist nerve surgery. I really think if that's the case I am going to need some serious emotional help to accept that as I have been incredibly concerned about this and mentioning it politely each time I see anyone. I just don't know how I'd cope if my worries came true. Maybe I'm being a bit premature in that worry, but it is now 4 years since the nerve symptoms got "bad". I now have the sciatica back too. I feel a bit embarrassed to say I genuinely hope something DOES show up on the MRI. I know people will think "Why would anyone want something to be wrong?" but in my case (and that of others, I am sure) there is something wrong already, I just need to be able to face what it is and find a way, if there is one, to fix it.

    Another issue I have been back and forthing with is the issue of social help with my issues, both financial (not a priority for financial reasons but for the doors it opens for other help) and with home adaptations. Without a diagnosis, all I can say is I have a "bad back" and we all know how that gets looked on. I have put off applying for Disability Living Allowance because I didn't want to be seen to be applying for something I might not be entitled to (even though I probably would be to some degree) AND because of how stressful the process is for people with full medical backing to it, never mind someone without a diagnosis. If I don't apply for that, I can't really be seen as " registered disabled" for social services help with the home and mobility. My husband is legally blind and can only help me so much, and to be honest I want to be able to reverse the relationship so I can support HIM more. I feel my life is passing me by. I am lucky I have him though, he and the kids are everything to me and without them I'd have crawled into bed and not come out again.

    Thanks again for the reply, it's really lovely to speak to you and I really appreciate your thoughts xx

     
    Old 03-05-2013, 03:21 PM   #5
    overforty
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    Re: Radiculopathy and back pain much worse despite microdiscectomy 2011

    Kathy I am sorry that you are still suffering from this pain. The pain and numbness oyu describe are so similar to what I had before my decompression surgery. While I felt much better for the better part of a year some of my numbness, weakness and pain hahve returned.
    I hope that this new doctor and new MRI will help solve what is going on with you.
    Please keep us updated!

    Susannah

     
    Old 03-05-2013, 03:42 PM   #6
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    Re: Radiculopathy and back pain much worse despite microdiscectomy 2011

    Hi Susannah - thank you so much for the reply, it helps a lot to know that I'm not on my own! Not that I would wish this on anyone else. I hope you get some relief soon xxx

     
    Old 03-05-2013, 03:53 PM   #7
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    Re: Radiculopathy and back pain much worse despite microdiscectomy 2011

    terteri66 - I did type a long reply to you but I suspect it's still in the moderation queue as I think I went over the "threshold" with the reply to Susannah. Just in case I looked totally rude there! xxx

     
    Old 03-05-2013, 04:13 PM   #8
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    Re: Radiculopathy and back pain much worse despite microdiscectomy 2011

    Thanks Kathy. The pain I have seems to be much less than what you are going through. Advil and ice packs seem to take the edge off for me. Oh and lots of stretching I feel for you.
    Sometimes it is so hard to explain to people what it is we feel and I think that unless you are going through this people, while empathetic, don;t fully grasp the level of pain, numbness and discomfort we feel everyday.
    Simple things like walking up stairs, walking through a grocery store or standing up at the sink washing dishes becomes exhausting and painful. I work in an office so getting through the day without too much pain is a chore some days while other days it is fine. Trying to find the right mix of "fixes" whether it be pain meds or excercise/physio or a combination of both can be frustrating at best. When my spouse asks how I am feeling I have come to the point of just saying I am fine because I feel like a complainer. He is terrific and wishes he could understand. Life is very good and if I could get this under control I would want for nothing

    Keep pushing for answers, you will get them!

     
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