I don't know what to do

Hi everybody,

I'm 18 years old and have had Sacroiliac joint dysfunction for around 18 months and have tried Physio, been on: cocodamol, lyrica, tramadol, ibuprofen, paracetamol, (and another one I can never remember the name of), heat patches and ice packs, had cortisone injections on two different occasions and am booked in for another one in the following weeks with a new consultant.

I have been offered the surgery an have been told that it will be up to me after this injection and although I think it's probably the best thing - I'm not sure whether that's just because all I ever read is horror stories of the pain getting worse over time; as I'm still young, my parents don't seem to think it's a good idea but the only reason they think that is because they are certain the pain will just go away one day and they're worried about the effects surgery will have on me later in life.

Has anyone got any information (potentially from insight) that may be helpful in making this decision??

I really need the help!!

- Katie

16 Replies

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  • I would suggest seeing a chiropractor or osteopath before making any decisions. They may be able to help.

  • I have spoken to many orthopaedic specialists and they all pointed me in this direction. I tried to get in contact with a chiropractor but they didn't believe there was anything they could do to help.

  • I would suggest seeing a physiotherapist with an interest in sacroiliac joint dysfunction if you haven't already. Depending on where you are located.

    There is a physiotherapist in Australia who has written a book on sacroiliac joint dysfunction and how it causes pudendal neuralgia. Her performs manipulations on the SIJ.

    More about it here

    peterdornanphysio.com.au/pu...

    Perhaps a physiotherapist in your local area could contact him and apply his techiques on you.

  • I did see a Physio for a while but I believe they specialised in sciatic nerve pain, and I was sent to her as that was a symptom - I will have a look to see if anyone in my area specialises in it but I am very aware that it's not very common around here (I have to travel for half an hour in the car to talk to the specialist consultant)

  • Kate, have you ever contacted the Pelvic Partnership? Many women can suffer from SIJ as a result of pregnancy (pelvic girdle pain). The Pelvic Partnership support such sufferers. They are likely to put you in contact with physios who really have an understanding of this complex condition. It is important you are treated by experienced physios...as this can be a complex area. Surgery should be a very last resort. I know many women who have done very well as a result of being treated by the right professionals, despite getting nowhere with consultants and others. May be worth thinking about presuming you are in the UK.

  • I have not contacted the pelvic partnership and am from the UK, as my injury is suspected to have been caused by two sports traumas - I was put with a lot of people who specialise in that and in the symptoms I was experiencing.

    I shall look into that today!!

  • I know how horrible sacroiliac joint pain can be... My last vertebra fused on the right side to the sacrum... This formed the equivalent of a car jack jacking up my spine on the right side... Was like a hot knife was jammed into the sacroiliac joint... Had to get half of my vertebra amputated to stop this insane pressure.... This is what caused my Pudendal Entapment... Made all the muscles grow wrong cause of the weight differential that was transmitted wrong for 25 years... My life could of been saved if a doctor had just Read a simple Xray right and cut off the right transverse process that formed this Virtual Spinal Car Jack had been cut off some years earlier.... I know that your joint pain could be hellish like mine was... I feel your pain...

  • It's really hard because I know I'm young but I don't see the problem going away without the surgery nor do I see it getting better with continual injections (which are not only painful to have but also take me out of action for a day) - it's so painful and it's already impacted my life so much! It's a hard call to make

  • i hear ya... I was in my last semester of college getting ready to move to Japan to start my English Career when i was struck down... Was really only just about to start my real life when everything was stripped away.... why are we tested so is all i have ever known now.... Nothing but the Test... Nothing but a measuring of how strong a person we really are... I know now i have passed that test since i have almost passed a couple times now... Always on the edge right now in fact...... None of us deserve this kind of test... No one should be put to so much....

  • It's really hard because I'm at college, I work two jobs, I've got holidays booked, my birthday is in August, and I'm going to university in September... I can't really take anymore time out of my life to waste time with things that don't work... I just want to be fixed

  • Yea.. TO BE FIXED.... In my case i found my fix... when i first got the injection to the nerve root that controls everything involved in my PNE i thought that maybe there was some possible hope of that fix... and when the very first rhizotomy completly cured me for a whole month i thought HALELUYA.... Is insane that after one burn the root became Immune to being burned again.. the next 25 odd burns did nothing... very frustrating indeed... And when i got the chunk of the vertebra that cause that super insane sacroilliac joint pain I hoped it would stop the PNE too... I know exactly how insane the sacroilliac can hurt... I hear ya as only someone who knows what that is like can... my best wishes are truly meant....

  • Before you commit to another surgery I would have an opinion from your orthopaedic consultant as well as your pain management consultant as they have the information on your previous surgery. If you want to take legal advise after having complications following a surgical error, contact the Citizens Advise Bureau in your area and ask for an appointment with a medical negligence advisor. All the best. Keep in touch if you need further help.

  • I haven't had a previous surgery - only injections into the joint under CT guidance. I have not been provided with a pain management consultant as it was only properly diagnosed around 6 months ago and before that had been assumed that I had muscle strain (which is quite funny really) and then sciatica. It took them ages to diagnose me and my orthopaedic surgeon has made the decisions about everything so far behind but he won't operate until After this next injection and I make a decision

  • May I ask who gave you the injection under CT guidance as this is usually done by a pain management consultant. I know when I had injections into my back it was a great relief for about six months but I had other pelvic nerves involved which had not been diagnosed so it was more complicated. All I can suggest is request that the injection is done by a pain management specialist and with regard to making a decision ask for a second opinion before you make that decision.

  • An orthopaedic surgeon specialising in facet joint injections carried out my injection - the consultant I am with now is my second opinion and he thinks it's a good idea with little risk but at the same time, doesn't want to say it's the right thing for me!

  • It's no wonder you don't know what to do. Unless they can tell you definitely it is the right thing for you I would hold off until you have had the injection by the orthopaedic surgeon to see if that helps you. I would also ask the orthopaedic surgeon if the diagnosis is definitely correct and ask him to give you his opinion if injections or surgery is the best option for you. They are the experts they should not leave this for you to decide without knowing if it is the right thing for you at your age and if it will improve your quality of life or make things worse. All the best.

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