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Bad News; what to do now?

Posted , 4 users are following.

helen10458
helen10458

Hi,

I'm finding it hard to process this and am feeling quite depressed. So I had my appointment with the Neurosurgeon and it was'nt ideal. I had to pay privately in order to get seen quicker, he was running really late and I had two small children to entertain in the waiting area.

He was only interested in the MRI scans and spent time looking at and comparing them. I was expecting the appointment to be one hour but was in there barely twenty minutes. The conclusion was; spinal fusion at L5/S1 is not an option due to the fact that I have three levels above showing degeneration. Fusion would put too much pressure on these. Looking at my scans he said that I have permanent damage of my sciatic nerve due to the fact that there was a large prolapse when I was pregnant with my son in 2012. All of my troubles are caused by this initial damage. He said that normally the body would heal and the nerve be ok or they would have operated on me, unfortunately having a baby growing during that small window of opportunity means that the nerve has been damaged permanently. 

So I'm to treat it with the huge amount of painkillers and hope that it eases off and take care not to aggrevate it again through my work. He wasn't interested in how this has all impacted on myself and the life of my family and was very matter of fact about it. 

I am currently really struggling as I am taking 600mg Lyrica as well as Diclofenac, Trazinidine, Amitriptyline and morphine for breakthrough pain. This has swapped physical pain for mental as I have had such a raft of nasty side effects (the hospital doubled the Lyrica in one go). I have been back into work to discuss a phased return but feel that is a long way off as I can't even make dinner for the children without suffering.

I feel like giving up as this is the third time in six years that I have had to come back from this and I have spent half that time in hospital or flat on the bed. It really is too much to cope with as the side effects are suicidal thoughts, exhaustion, paranoia, unable to remember names, dates or pretty much any information, lack of concentration and total loss of my cognitive skills.

Please help; what can I do now? I want to decrease some of the Lyrica but after two days on a smaller dose feeling pain again and think this is probably too soon. I have been referred to a Nuero-psychologist and hopefully she can give me some support. Everyone is saying I'm depressed but I think it's the drugs really, I can't take anti-depressants as they will react with the Lyrica.

Apologies in advance for the length of this post.

All the best

Helen

0 likes, 14 replies

14 Replies

  • Patient_Mod
    Patient_Mod helen10458

    Posted

    Hi helen10458

    We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

    If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

    Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

    If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

    Kindest regards

    Patient

    • helen10458
      helen10458 Patient_Mod

      Posted

      Hi,

      Yes I am but this is due to all the medication I'm on and it will hopfully settle down in time (it did before). I have experienced this previously with Pregabalin and have been to see my Doctor again who isn't concerned. Thank you for the advice I will bear that in mind if I get any worse.

      Thanks

      Helen

  • drinxs
    drinxs helen10458

    Posted

    Hi Helen,

    As difficult as it is to hold it together mentally do not loose hope. I think many of us in this forum( myself included) have had consultations with little upside.So get yourself a 2nd opinon (also available on NHS- although this is something not promoted) - this operation maybe be too big for the surgeon in question but that does not mean it cannot be done. I had to literally research total UK before I got the one I opted for.

    Are you in Uk? I can give you my surgeon details- awesome.Even just to have a consultation?

    • helen10458
      helen10458 drinxs

      Posted

      Hi there,

      I really think that this is the end of the road for me treatment-wise and I will just have to do as advised. This advice was given to me from an NHS consultant previously but I wasn't prepared to accept this at that time. It all makes perfect sense, my MRI's history really show the issues. I am in the UK, in Scotland.

      Thanks for replying,

      Helen

    • drinxs
      drinxs helen10458

      Posted

      Helen - I was going to have to have ribs removed, my lungs deflated to access my discs (bulging disc pushing on my spinal cord) worse than open heart surgery. I refused to accept the original consultants assessement and after much research went to walton Centre in Liverpool(way outside my area) its a centre of excellent- best decision I made they were able to go through the back. You can request to go there via your GP I did - Google The Walton Centre ( all that work there are Neurosurgeons- top of their league). Have a look nothing to loose (My Surgeon was Martin Wilby).Do Not give up!!
    • helen10458
      helen10458 drinxs

      Posted

      God that sounds horrendous, thanks for the information I'll have a look. I have seen my MRI scans and there really isn't anything there worth operating on apart from the DDD. Thanks again, hope you feel better soon!

      All the best!

  • jessica_78456
    jessica_78456 helen10458

    Posted

    In this day and age there's always something that can be  done , I understand stand what he's saying about the fusion and also if he operates u may still feel pain from the siatic nerve. Ive just had my second op 9 weeks ago . Said I wasn't an ideal candidate but did it all the same , helped in some ways and not in others . Had my op at private hospital via the nhs. There is othe options there disc replacement and also a procedure were they use strap s rather than rods In fusion this would not cause as much pressure on the rest of the back. Or they can put spacers in . Don't give up ask yr Gp to refer u back maybe see a. New Neurosurgeon get a second opinion. There's always more than one that work in these places. . 

    • helen10458
      helen10458 jessica_78456

      Posted

      Hi Jessica,

      Thanks for your reply, I'm just so tired of it all now. The same things keep happening and I've pretty much had the Surgeons in three different hospitals say the same thing. Think it's maybe time I need to listen and focus on recovering as best I can. If the damage is permanent then now amount of surgery is going to rid me of that sciatic pain. The meds will block the signals and hopefully given enough time then they will stop firing off so loudly and I'll be able to get back to some sort of life.

      How are you getting on after your surgery? Hope that it is giving you some relief, pain is so exhausting.

      All the best 

      Helen

    • jessica_78456
      jessica_78456 helen10458

      Posted

      Still early days helped with one think but not so much with others as yet , I still have mild siatica reoccurring? Once there's a weakness or damage. Like you say no amount of anything will help. I had to try though 👍

  • kathleen65757
    kathleen65757 helen10458

    Posted

    Where are you? In Australia, the are doing implants to deal with this kind of thing. In America too! 

    You may have to fight to get this. 

    The surgeon you saw sounds heartless.

    . 

    • helen10458
      helen10458 kathleen65757

      Posted

      Hi Kathleen,

      I'm in Scotland in the UK, I really need to except this now as I don't have the energy or finances to pursue this any more. The surgeon I saw is very highly respected and was recomended by my Doctor too, I think that due to the unfortunate timing, my nerve has been badly affected.

      Thanks for your reply though smile

    • helen10458
      helen10458

      Posted

      Apologies for spelling......stupid Pregabalin!
    • kathleen65757
      kathleen65757 helen10458

      Posted

      No worries. I am kind of in the same boat but I am 72.

      I just lead a quiet life with my feet up most of the time in a recliner and pillows under my legs.

      I am very limited with walking or standing. 

      I have bulging discs, osteoporosis, arthritis and scoliosis with an issue in my sacroiliac probably caused by a nerve coming from the discs. 

      I tried physio, Bowen, Tens machine, etc. but nothing cured the problem.

      As I have raised my family and lived most of my life I feel for you. 

      You are young and this is a cruel thing to happen to you.

    • helen10458
      helen10458 kathleen65757

      Posted

      Hi Kathleen,

      Poor you, it's horrible  at any age, there should be more research and work done in this area so many people are suffering. It's a slow recovery, I have to keep reminding myself that I was so much better. I miss  my old life, I'm a teacher and a very sociable person so being laid on a bed isolated isn't great. I am now able to do little things like cook a meal for my children which is progress. I feel that tightening, pulling in the lower back area though and know when to get off it and lay down.

      You sound like you have more complicated issues, do you get any pain relief? I know that the only reason I can sit and stand is due to the painkiller. My hubby has to repeat everything ten times or so, I don't know how they all put up with me. I was seeing my Osteopath but the relief from him only works when he is doing traction and wears off pretty quickly. I think I was continuing to see him to get some support as much as anything as understanding has been in short supply with the medical professionals.

      All the best

      Helen

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