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Diagnosed at 7 - treated but still some oddness

Posted , 3 users are following.

sean44903
sean44903

Hi,

    I feel a bit guilty when I know how bad Scheuermann's can get. I was diagnosed aged 7 and the only treatment were orthopedic shoes. I still occasionally wake with that sharp pain that takes your breath away but it loosens up in 1-2 hours.

My issues are that, although married, my wife sleeps in a seperate bed because I have to turn around every 20 minutes (so no sleep for her) but if I remain lying (on back or side), after 8 hours, I'm in pain. I sleep a lot due to the medication I'm given for PTSD & Bipolar disorder. Are the 2 issues common to anyone else? I was recently in a car accident and the morning pain is back; not every day, but a lot. AFAIK my doctor just said I have to live with the pain.

Lastly, has anyone else discovered that doctors can't perform a lumbar puncture? on 6 occasions it's been tried, all ended in failure. Because of a leg injury, spinal block has been offered but a)it's not without risk & b)I don't know if it's even posssible.

Sorry to ask so much. I hold a PhD in medicinal Chemistry so if you ever need to ask about a med, you are always welcome.

With thanks,

Sean

0 likes, 12 replies

12 Replies

  • chris00938
    chris00938 sean44903

    Posted

    Sean, first of all sorry to hear the problems you have.  I have NO idea if this is going to be helpful at all, but i was getting such pain that I didn't know what to do with myself.  Mine got worse during the day so that by the evening I was writhing, couldn't get comfortable, tried heat, cold and nothing helped and even the painkillers seemed to give up on me, but I got  TENS machine.  No-one had suggested it but I was desperate enough to try anything.  A day using it as high as I could tolerate for most of the day and then reducing a little the next day and just a few hours the day after took my pain away totally to the point I didn't need it until a flare up a few weeks later, so repeated the TENS and it sorted it again and I've not needed it for weeks.  I know my problem might be different to yours, so this won't work for everyone, but since it's the only thought I could offer, thought it might be worth letting you know.  
    • sean44903
      sean44903 chris00938

      Posted

      Thanks for the reply - yes, I was trialled with a TENS machine but, sadly, no help. If your getting the level I'm getting on waking and it stopped that, Chris, I am SO GLAD for you.

      Can you answer any of the other issues (or should I seperate them into seperate questions?

      Once again, if you have a circle of friends on here - just let them know I understand meds better than ANY doctor or specialist - I don't want to just waste 7 years of uni.... at least I'm old enough to have got them partly funded with a grant (remember those!).

      My best wishes to you and everyone you care for,

      Sean

    • chris00938
      chris00938 sean44903

      Posted

      Sean, I am so sad to hear it didn't work for you!  I'm sorry I can't answer any of the other issues - so despite wishing I could be some use, can't help, I'm afraid.  Just a thought, and I don't know if this is of any relevance to you, but it's thought my scoliosis developed because one leg is 2cm shorter than the other (probably due to arthritis, or maybe it always was!) and I have now had the shoes for that leg built up by the local cobblers to the 2cm.  I suppose that may have made a difference to the back pain, but I really feel my suffering wasn't as bad as yours.  There was a suspicion of oesteoporosis in my spine, and the GP, without the bone density scan, gave me Alendronic Acid which I took for 6 weeks before giving up on it because of horrible dizziness which was almost making me fall over, only to finally be sent for a bone scan and discover I don't have osteoporosis in the spine after all.  But I am now taking a calcium and Vit D3, magnesium and Vit K2 supplement to make sure any weakness doesn't get worse, even though a graph sent to the GP by the hospital (and the GP was NOT going to show me this) showed I was under the level of treatment for bone density!
  • Lawyer
    Lawyer sean44903

    Posted

    Sean: A pity they did not do something when you were young; and 7 was young for the vertebrae to start malformation.

    i believe that now all you can do is manage it. Consult GP about suitable pain relief: I find Bu-Trans 20mcg 7 day patches good as they are slow consistent release. Also guided physiotherapy can help to strengthen the back - not a direct cure but it helps. Ask GP to refer you to physio at hospital. They will set out a half hour routine for you.

    i do not know but suggest PTSD and Bi-Polar are separate matters.

     

    • sean44903
      sean44903 Lawyer

      Posted

      Well Lawyer, they did - I got orthopedic shoes and that worked. I was fine until the accident when the pain came back T11 & T12 right-side. It's just like it was - just 4 dacades on.

      As I say, their only suggestion was to put an injection into my spine to stop the nerves sending pain signals but as 6 attempts (on seperate occasions) all failed, I'm pretty certain they can't, but it won't stop them trying, hurting me more, costing the NHS a lot of money and basically bein a waste of time.

      I have asked about buprenorphine for pain (I also have a total right-hip replacement due to an explosion) but patches would be no good - it's just the first 90 minutes of the day.

      Buprenorphine also has affinity to the ORL1 receptor, hence it is the only opiate that is good for neuropathic pain. Sublingual pills would be the only useful thing.

      Many thanks for your input, it means a lot to me.

      As I said, I hold a PhD in medicinal chemistry so if you or anyone else wants input on a med, I WILL know better than the doctor or specialist.... and I'm happy to write a letter with my credentials and tell the doctor in cases where they are just doing a sh*t job. I feel it's the least I can do.

      My very best wishes to you and yours,

      Sean

    • chris00938
      chris00938 sean44903

      Posted

      Sean, your writing skills to a GP could be very useful - my GP's (I've worked through 4 of them) at our local practice are absolutely useless and I've determined to stick with Dr Google unless I need a referral for something LOL!  I strongly feel that there should be at least an opportunity for a discussion on any meds given where there could be serious side effects, but this just has never happened.  Even when I saw one doctor with back pain, she told me, without looking at it, that it was arthritis and sent me away.  Six weeks later I was back to another when the pain was at writhing level, and again told it was arthritis without them looking at it.  It was only when I went for an Ehlers Danlos appointment at the hospital and mentioned the back pain that they looked, told me it was scoliosis and sent me off for x-rays.  This was after being given three times the recommended dose of estrogen (on it's own) for 16 months and developing endometrial cancer (an op at the end of last year sorted that we think) and then being told shingles was a bite and them only deciding it was shingles when it was too late for antivirals to work and one eye had swelled up.  They really are a useless bunch.  It sounds as though you're familar with bad doctors though?  I'm so sorry to hear that there are others as well as our local lot.

      Very best wishes to you too!  I do hope you can get some answers on here.

      Chris

    • sean44903
      sean44903 chris00938

      Posted

      My goodness Chris - you have really been through the mill!  Endometrial cancer rates steadly came down from the 60s when more potent analogues of estrogen were used in birth-control pills (the early ones ha HUGE doses). All I can say is that it has one of the highest survival rates of any cancer. I HATE it that cancer is referred to as 1 disease - it's a class of disease. As long as you avoid the risk factors, your very likely to be cured - but keep getting the blood tests.

      The pain from shingles (an often misunderstood disease) can be just awful. I know in the US (but not UK), buprenorphine is the first-line pain medication; a rare case when an opioid is first-line. There ARE newer antivirals that DO work, but I don't know if NICE have licenced them. famciclovir and valaciclovir will both help with shingles at ANY stage... but given the choice, the former looks less likely to interact with other meds.

      I feel that life has not so much passed you a sh*tty stick, but rather a sticky sh*t ;-)

      If you want me to outline a letter, I'm happy to message you with a letter for your GP

    • chris00938
      chris00938 sean44903

      Posted

      Sean, they aren't doing ANY blood tests relating to the cancer.  Should they be?  I go for a three monthly physical check but I suspect they'll sign me off that before too long because they seem to think that the person who had it will be the first to know if there are any more problems because there would be signs of bleeding.  

      I think I got away fairly lightly with shingles.  It was bad at times but not as bad as I think it can be and I'm getting the shingles vaccination in a month or two (allowing that time as I had it at Easter, so didn't want my immunity to be too high from having it).

      Seriously, I count myself lucky.  I have various ailments, but who doesn't and I have a wonderful husband who helps me in every way he can, and I have a good quality of life.  One of these days I'll consider sending the letter I started to the GP practice, but there doesn't seem a lot of point at the moment because there is nowhere any better around LOL!

      I do hope you can get some help though.  It's quite a complex issue and I wish I could offer ideas!

    • sean44903
      sean44903 chris00938

      Posted

      Hmmm... the blood tests can reveal carcenoma. I suspect your specialist feels confident that s/he has sorted the problem BUT what a serious operation you had to undergo.

      I think your husband is the MOST important factor to your recovery. I don't know him, I've only just read mention of him but if he's stuck with you through this - he is a REAL gentleman. Thay don't seem to produce many in this modern age but, even on crutches, I will give up my seat on the bus to a lady - I was brought up that way. I think that the 'women are equal to men' story is rubbish - women are just better than men. Think, (cis) ladies have XX chromasomes while men have XY - that's 12.5% of DNA missing.... and it makes itself apparent SO OFTEN. Your husband sounds like a true philogynist - nice to know there are at least two of us. PM me with your meds if you have an issue and want data to smackdown those GPs who exert power-distance (and ladies suffer this more. Invent me as a relative and I can write & reference a letter). My own GP just asks me what medication I would prescribe.... but he's a one off ;-)

      My best wishes to you and to everyone you care for,

      Sean

    • chris00938
      chris00938 sean44903

      Posted

      Sean, they have said they think it's unlikely to come back but it's one of those things that once you've had it you're always left with the reality of a question mark, but having said that I do my best to get it in proportion in as much as none of us know what our health will be in the future, so put it to the back of my mind somewhat.

      Oh LOL!  Thank you for the lovely comments about my husband.  Yes, he's a gem:-)))  Nice to know you are too LOL!

      Take care:-)

      Chris

    • sean44903
      sean44903 chris00938

      Posted

      Well - you, and anyone else reading this can rest assured that I have the latest BNF (the book GPs look in for info on meds) AND a Merck Index (information on every drug ever used since 1898) plus 5 years degree & then PhD in medicinal chemistry.

      Chris - If it were up to me, ALL cancer patients would get at least 6-month tests and for some cancers, monthly. As I said, your only luck is that your cancer has just about the highest survival-rate of all cancers but the treatment is.... well, butchery. A friend who had a similer Op said she was pleased that she had lost weight - jokingly. Now you have to look for brittle bones and suchlike.

      You don't moan, you don't complain, you get on with it - I have the deepest respect for that.

      My best wishes to you and everyone you care for,

      Sean

    • chris00938
      chris00938 sean44903

      Posted

      Sean, to be honest, the op was done laparascopically and really was nowhere near as bad as I'd expected it to be.  The very worst time was waiting for the op and for a while after until I could put it behind me for the most part, but th brain is a wonderful thing and copes better than we expect:-)  I'm fine, really:-)))  And hope to stay that way:-))))
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