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Can anyone help please?

MrsCMMrsC Posts: 2
i'm new here, so i apologise for just jumping in asking for advice, and i also apologise if this is long!
my husband has suffered with lower back pain on and off for at least the last ten years after he injured his back lifting some stairs helping someone out. he didn't get it seen to as he thought it would just recover by itself, which it seemed to initially.
he suffered pain every so often, but never enough to seek help as it would usually last a matter of days before disappearing again.
about two years ago he started suffering with pain in his lower back again but this time it didn't disappear, it just got progressively worse. he saw our gp and started taking anti-inflammatories and mild painkillers. our gp also practices acupuncture so he had a few acupuncture sessions with her too. none of this worked, so he had an mri which showed degenerative changes and herniated discs l4 and l5/s. this was about a year and a half ago. he persevered with painkillers with no improvement. he then started osteopathy about three months ago and attended this for two months. he started to improve, but then had some setbacks - tripping over and landing awkwardly, sleeping in an awkward position etc. and he found himself back at square one again, only this time the osteopath said she had done all she could for him and he really needed to go back to his gp to be referred to the spinal specialist. he developed sciatica during this time, from about a week after seeing the osteopath which started off as pain in his right bum cheek but over the last few weeks has gone down his entire right leg and into his foot as far as his toes. he says it feels like burning/shooting pain like lightning going down his leg and is especially painful in his shin.
i'm not sure why or how, but out of the blue it got much worse, and i called nhs 111 who then called paramedics out. they contacted his gp who then prescribed him oramorph and diazepam. he had started taking amitriptyline and gabapentin about a week beforehand. then two days later he couldn't urinate and was admitted to hospital and catheterised. they did another mri and found that his discs were bulging more than they had been last year, but that that wasn't the cause for the urinary retention, the amitriptyline was. they explained that they didn't think anything else was going to help, they dismissed the injection saying it wouldn't work and that spinal surgery was the only option, so the next morning they prepped him for surgery and had him sign the consent form. literally minutes later a consultant spoke to him and said they were not going ahead with the surgery and were discharging him instead to wait up to 5 months for an appointment with the spinal specialist! they said the reason for this was because he wasn't in any pain in his leg, so i spoke to everyone i could, including pals to get them to listen to us because of course he does have severe pain in his leg, much more so than his lower back. they insisted he went home despite this, and so we have been home a week today and he is in absolute agony. the medications aren't doing much, he had to stop taking the zomorph that they gave him in hospital because it was making him very unwell, but he has continued with the other medicines - oramorph (up to 60ml per 24 hours), gabapentin (900mg per day), diazepam (up to 15mg per day) and lactulose.
he then developed severe pain in his groin and right testicle the day before yesterday and saw the out of hours gp at the hospital, who said he couldn't rule out ces but he thought it was a hernia caused by straining from constipation because of the morphine.
today his pain has intensified and i called nhs 111 again, who told me to call our gp to see about referring him in for the spinal injection or to be admitted to hospital to manage his pain for at least the next three weeks which is when his appointment for the specialist is (i told the consultant at hospital he couldn't wait for up to five months and so they moved it forward as urgent). i am currently waiting for the on call gp to visit at home.
i don't know what to do? he doesn't want to go to hospital to manage his pain because he doesn't want to stay in for that long, but he's in agony and isn't coping. he wants to try the injection but i don't know if we can insist? we have five kids between us and i am struggling because i can't see him in this much pain not being able to help him. i have trawled the net to find ways to help but i've not found anything useful. he doesn't want to be away from the children either, but i just don't know what to do now. my mind is frazzled! he needs a plan of action and to know that this will get sorted out, but right now it seems like he's being told take this and that and see if it works, and nothing seems to really help much.
sorry for the long post.

welcome to spine-health

one of the most important things that members can do is to provide the rest of the community with as much information about themselves as possible. it is so very difficult for anyone to respond when we do not have enough information to go on. this is not meant to indicate that you are doing anything wrong or violated any rule, we are just trying to be pro-active and get the information upfront so that people can start responding and your thread is more effective.

so many times we read about members who have different tests and they all come back negative. the more clues and information you provide, the better chances in finding out what is wrong, the fact that your test results are negative does not mean that you are fine and without any concerns. many times it takes several diagnostic tests and procedures to isolate a specific condition.

here are some questions that you should answer:
  • - when did this first start? . year, your age, etc
- was it the result of an accident or trauma?
- are there others in your family with similar medication conditions?
- what doctors have you seen? (orthopedic, neurosurgeon, spine specialist, etc)
  • . which doctor did you start with? ie primary care physician . who are you currently seeing?
- what conservative treatments have you had? which ones?
  • . physical therapy . ultrasound / tens unit . spinal injections . acupuncture . massage therapy
- what diagnostic tests have you had? and their results (mri, ctscan, xray, emg, etc)
  • . summarize the results, please do not post all details, we cannot analyze them . how many different tests have you had over the years? similar results?
- what medications are you currently using? (details, dosage, frequency, etc)
  • . name of medication . how long have you been using this? . results
- has surgery been discussed as an option? (if so, what kind)
- is there any nerve pain/damage associated?
- what is your doctor’s action plan for treating you?

providing answers to questions like this will give the member community here a better understanding
of your situation and make it easier to respond.

please take a look at our forum rules: forum rules

i also strongly suggest that you take a look at our faq (frequently asked questions) which can be found at the top of the forum menu tab or by going to faq there you will find much information that will
  • - help you better utilize the spine-health system- provide pointers on how to make your threads / posts- tips on how to create your avatar (your picture), posting images, etc- general pieces of valuable information

please remember that no one at spine-health is a formally trained medical professional.
everything that is posted here is based on personal experiences and perhaps additional research.
as such, no member is permitted to provide
  • - analysis or interpretation of any diagnostic test (ie mri, ctscan, xray, etc)- medical advice of any kind- recommendations in terms of medications, treatments, exercises, etc

what could be good for someone could spell disaster for another.
you should also consult your doctor to better understand your condition and the do’s and don’t’s.

it is very important that new members (or even seasoned members) provide others with details about their condition(s). it is virtually impossible to help another member when all the details we have are

i’ve had this for years, it hurts, i cant move my shoulder – what could this be, what treatment should i get?

diagnosing spinal problems can be very difficult. in many ways it’s like a game of clue. especially, when the diagnostic tests come back negative – no trouble found! then it’s up to the patient and the doctor to start digging deeper. the doctor is like a detective. they need clues to help them move along. so, you as the patient need to provide the doctor with all sorts of clues. that is like it is here. without having information about a condition, its impossible for anyone here to try to help.

specific comments :

personal opinion, not medical advice :

personally, it sounds to me that your husband is seeing so many different doctors, i am not even clear as to what the exact diagnosis is and what the action plan should be.
they need to isolate the problem, find the root cause and then determine how to correct this. even though the wait to see the spinal specialist seems long, at this point, no other one is seeming to take control of this.
medications alone will not be the answer to control his pain. what really helps the most is the total package. take a look at: the blend that identifies all the various components in pain management.

--- ron dilauro, spine-health system moderator : 07/28/15 11:21 est


  • SavageSavage United StatesPosts: 7,270
    edited 07/28/2015 - 6:42 AM
    It is good your husband was moved up to urgent and doctor will see him today!

    It's very difficult to make decisions, as the patient, while you are suffering so and trying to figure out what is best.
    That is why you have a doctor, to follow their advice to be relieved of pain and doctor may be best able to see more sides of current situation.

    If doctor thinks hospitalization is needed, I would do it. Your husband may miss his children, but taking care of himself is best for all and good example to children...I would think. Children can't enjoy watching, listening to their father's suffering.
    The sooner the hospitalized care, the sooner he returns home.

    As for yourself as caregiver, I can imagine how difficult it is for you to want to follow your husband's wishes. And you are trying to search the web and try to figure out what to do.
    But then again, that is why doctor is there. He wants to relieve your husband of his suffering...and treat him.

    There is always a place for research and understanding what is being done. I'm not minimizing that.
    But when pushed to state of urgency, it needs to be addressed as such!
    Personally, I would follow doctor's lead and understand the step by step of the urgent care.

    I wish you both the best in managing the care and decisions you will be making!
    Honorary Spine-Health Moderator
    Please read my medical history at: Medical History

  • Hi,
    Thank you for your reply.
    The doctor came to see him late afternoon and examined him. He said he felt he was too doped up on morphine and Diazepam and thought he should drop the Diazepam and only stick with the Oramorph (which is what we have done for the last few days/almost a week). He also said that he thinks he needs to gradually up the dose of Gabapentin. He said he'd looked at his scan results and explained that whilst his problem is significant, it's not as awful as it could be. He didn't say anything about having a hernia in his groin, but said when examining him that if it was to do with the nerve he would think him feeling that area would bother him, so I'm not sure whether it's to do with his nerve pain or a hernia as no one is really saying either way for sure. We were told he'd need to be referred for an operation to correct a hernia, if it is that, but no one has said they are referring him.
    He didn't say he needed to go into hospital. He thinks with the right levels of meds he can manage at home.
    I just want whatever is best for him. I've said to him that if his pain will be managed more effectively at hospital then he needs to really think about that. Of course I don't want him to go anywhere, but I want him to be ok much, much more.
    I thought maybe the spinal injection could be at least worth trying even if only temporary pain relief for his leg until there is a more firm plan ahead to recovery. He could cope with the back pain, he was managing it well before the sciatica. It wasn't nice obviously, but the sciatica is proving more problematic for him. He can't do anything, I have to get him dressed, he can hardly walk. It's awful because so many times I've read and been told it's so important he keeps as active as can be otherwise it'll cause more problems, but he's in so much pain it's making moving around extremely difficult.
    I'm hoping the Gabapentin at an increased dose will help. The doctor is going to call around lunchtime to see how he's getting on.

    With regards to the questions above...
    The lower back pain started in his early twenties after lifting some stairs. He had no treatment and left it to recover by itself.
    He is now 34.
    His dad has back problems but my husband says this was after a fall on a cruise ship or something, no problems before then. I don't know of any other family member with any back problems or issues with sciatica.
    My husband has seen his GP and about three other GPs at the same surgery (when his own GP wasn't there and he needed to see someone about it), an osteopath, and an acupuncturist. He then saw various people when he was admitted to hospital following his urinary retention, but no specialists. He has been referred to the spinal specialist and the same guy has seen his latest MRI scan because he was the one who decided against the spinal surgery when he was in hospital. He has an appointment with him in three weeks.
    He is currently seeing his GP about the problem but has been referred to the spinal specialist.
    He has tried over the counter painkillers, prescription painkillers Tramadol, Oramorph, Zomorph and has been prescribed Amitriptyline, Naproxen (he's been told now not to take anti-inflammatories because he brought up blood recently and they think it may be down to that, he's also no longer taking Amitriptyline because of urinary retention), Gabapentin, Diazepam and Lactulose because of the constipation the morphine causes.
    He has also had two months of osteopathy, and has attempted the exercises the physiotherapist suggested in hospital, although the pain is preventing him from doing these regularly. He has tried a Tens machine with no effect, and one of those things they advertise on TV like a loop wire you wear (stuck in place where the pain is) all the time that's supposed to get rid of pain and help you heal. I forget what it's called. He has tried things like warm baths, heat and cold, chilli gels, Deep Freeze, Deep Heat, and some other gel that's supposed to numb you which feels cold. He has also tried massage. And keeping active, which is now proving extremely difficult.
    He doesn't smoke (quit in January '14) and is otherwise fit and healthy and has always led a very active lifestyle (martial arts, cycling etc. can't sit still for five minutes). He has been out of work because he has been caring for myself (I have mental health problems) but recently got a job as a bank healthcare assistant at our local hospital (when we thought he was recovering enough of course!), of course he can't go ahead with that now until he's recovered.
    He has had two MRI scans, the first about a year and a half ago which showed degenerative changes and herniated discs L4, L5/S. The second MRI scan was 9 days ago which showed the same things but that the herniated discs are now bulging out more. They show nerve compression, but that they're not in the right place to cause CES. They said it's significant but not urgent.
    He also saw the out of hours doctor who thought he may have a hernia in his groin because he has pain in his right testicle, but no one has clarified this and no one can rule out CES.
    Currently taking Gabapentin (900mg per day, possibly being increased to twice that),
    Oramorph (up to 60ml per 24 hours, but he's having 5ml every four hours currently because the increased dose makes him unwell)
    Diazepam (5mg up to three times a day, GP thinks he should stop using it because it's not a painkiller, but my husband feels it helps him to relax)
    Lactulose (15ml three times a day to help with the constipation the morphine causes)
    He has been taking these for the last four weeks I think, I've lost track of time but it's around that.
    Surgery was discussed at hospital when he was admitted with the urinary retention, despite discovering it was the Amitriptyline causing it. They said the reason for them leaning towards surgery was because they didn't feel anything else would work. I asked about the spinal injection, but they didn't think it would be helpful. The next thing I know, surgery had been cancelled, they said because he didn't have any pain in his leg (which he does) and also because it wasn't the cause for the urinary retention so wasn't urgent. Even though this didn't seem to come into the equation the night before. I don't have an explanation for that. I think it was a matter of one person's opinion being overridden by the specialist after seeing his scan results, possibly wanting more time to think over other possible treatments maybe. They said the risks of surgery outweighed the possible benefits. I think the specialist wants to look at his case more thoroughly before leaping in with surgery, if it's not urgently needed.
    I don't know specifically which type of surgery was being considered because they didn't tell us.
    Our GPs plan of action is to try to manage his pain at home by increasing the dose of Gabapentin. He was given a different type of morphine but we've been advised not to use it as the Oramorph on its own is already wiping my husband out.
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