Sacroiliac Joint Fusion

rosedee · #1 (**permalink**) 05-06-2007, 03:23 PM

Hi,

I was really intrested in the post about prolotherapy and sacroiliac issues, but thought I would be better to start a new thread as my focus is much more on fusing the joint - which I'm due to have in June.

This will be part of a surgery on 4 different bits of my spine (see my sig).
I met with my surgeon on Thursday to agree future plan. While I knew we would be discussing all the other elements of the surgery, I hadn't expected his suggestion to fuse my SI too. (Although he had said it was an option to do this in the future after it failed to improve after injections). What this meant was that although I'd pretty thoroughly researched the rest of the surgery and asked him loads of questions, I hadn't read up much about SI joint fusion.

Since then I have started to learn more about it and a lot of what I've seen is less than positive. I know I need to do more reading about this, but am really interested to know experiences of anyone on this forum who has had their SI fused.

My SI joints have caused me a lot of problems over the years, particularly the right one, which is a definite part of my current pain profile. None of the usual more conservative treatments have significantly impacted on it and I was certainly concerned about it continuing to cause problems after the rest of the surgery. I think this is why I agreed to it at the meeting on thursday. It was only afterwards that I realised I'd just agreed without knowing enough about it! As I am having my facet joints checked out for the ADR in 10 days, I will be able to talk more about it with the surgeon. But obviously want to do so from a deeper knowledge base.

Really hope others on this forum will be able to share their perspectives with me.

Thanks for reading this.

Maria · #2 (**permalink**) 05-06-2007, 04:26 PM

Rosedee,
Like you, I'd be questioning the benefit of having this done and wanting a few more opionions...

I was told for years I had probs with my SI joints in PT and seems like I got some relief around the year 2001 after having intermittant work done on this area since '92. But difficult to say given the fact I have had two discectomies and the latter one failed greatly so then had sort of a cascade of probs with DDD and disc bulges, supposed scar tissue related pain and so forth..

Keep your options open is what I would advise if not adamently necessary that you have this surgery done STAT~ more opinions if you're able to get them w/your insurance or even thru mail with reputable surgeons~

rosedee · #3 (**permalink**) 05-06-2007, 04:59 PM

Thanks for that Maria. Unfortunately, money is an issue. I've had too many problems for too long to be covered by insurance. I'm going to be remortgaging my house to pay for this surgery and the hospital costs make it prohibitive to have surgery more than once.

The other (major) point from my perspective is that given spinal surgery is such a major trauma/assault on the body (this will be my 3rd spine surgery - after my first I vowed I would rather be dead than have another op on my back it was such a horrendous experience!), and given I will probably feel pretty dreadful afterwards anyway, I figure it makes sense to have everything to be done at same time. (Obviously if we were talking about non-Invasive procedures I wouldn't be thinking of it, though).

Right from the beginning I was told that it would be important to try and sort my SI out before the rest of the surgery because of the concern of its effect on my recovery otherwise. Having tried excercises, injections, belt, osteopathy, surgery on other levels to no, or negligible effect, no one has come up with any other suggestions (includes opinions from other surgeons over last 2 years).

Maria · #4 (**permalink**) 05-06-2007, 09:58 PM

Rosedee,
I see you've had quite a bit of work done already. I too have had 2 spine surgeries and was left worse off than going in 2nd time. No fusion to date. Still afraid of it~

May I ask who will be doing your surgery? It sounds like an undertaking tho in the right hands may turn out very well (of course one hopes this much)~ or at least to enable you to be upright, mobile and in less pain~

dshobbies · #5 (**permalink**) 05-06-2007, 11:37 PM

Rosedee,

First, welcome to the forum. I hope you'll find some useful information here as well as a lot of compassion.

Your two previous surgeries coupled with your current pain seems to have left your spine in a mess. You say you're going to be paying for any new surgery yourself instead of going through insurance. Have you considered going to Germany where the most experienced surgeons are? The cost, including airfare, hotel, meals and so on is about half of the cost in the US.

Where ever you end up and which ever surgery you have, I wish you luck,

Dale

rosedee · #6 (**permalink**) 05-06-2007, 11:51 PM

Hi Maria,

I'm in the UK and my surgeon will be Mr. John Sutcliffe who is very experienced, has an excellent reputation and in whom I feel a lot of confidence.

My first surgery (when I was 26) was one of the biggest mistakes of my life and just created more problems without solving any. After that I stuck with osteopathy, which was very helpful most of the time. I found that anytime I went near medics something went wrong! In 1987 I had Sclerosant injections, which seems to be the same as prolotherapy, and that just added to my problems. Fusion was first recommended in 1991, but I declined. I only agreed to it in 2000 after being off-work, housebound for 18 months and felt little option. In hindsight, it was still the right decision at the time. It helped my back, but just happened to damage a nerve in my spine!

When I first sought medical opinions this time round, I felt that any invasive procedure would have to have a good likelihood of offering at least 80% improvement. After 2 years of being barely able to move I feel any improvement is worth trying for, given how curtailed and limited is my life in all ways. My surgeon's opinion is that while it won't get rid of all my pain, it should significantly improve it. I feel I have no choice now - though of course I do!

rosedee · #7 (**permalink**) 05-07-2007, 12:10 AM

Hi Dale,

Your assessment of my spine is pretty accurate! I'm in the UK and don't have insurance covering my spine. Unfortunately, the surgeon I have most confidence in no longer works on our NHS and the ADR specialist that does, I don't have confidence in! I have seriously considered going to Germany (though the cost probably wouldn't be a lot less), but have decided against it for several reasons. I have major problems going 10 minutes away from home so the logistics of getting there are mega. Aside from that, my concern would be not being able to access after care once I'd left Germany. Given my history, the state of my spine and the permanent nerve damage I have, even if the surgery went as well as possible, I am not going to be problem free (something all the opinions I have sought are agreed upon).

Thanks for your welcome - I've been around for a few months now, but silent......I've found reading posts -new and older - very helpful and thought provoking.

elias2117 · #8 (**permalink**) 05-07-2007, 09:37 PM

Rosedee, well let me first say that I'm sorry your in the position that you are.If you want to know more about the SI surgery then you need to go to the SI forum, which has many people that have SI fusions.
http://www.kalindra.com/sacroiliac.htm
http://login.prospero.com/dir-login/...2FSIJD%2Fstart

This forum is great and also a lot about prolotherapy. Also here is a website for a prolo doctor in the UK. Don't ask how I found it just happened while poking around the net.
http://www.painclinic.org/spinalpain-lowbackpain.htm

I can tell you this from my time spent seeing a doctor for prolo, who performed SI fusions lets just say I saw many people who said they were worse off after the fusion. Now it just maybe the doctor or the weren't correctly examined.

I'm doing prolo because I have a serious muscle strain that is causing my SI to become unstable. I wish I could get a doctor to reconstruct my lower back muscles but no luck yet. Mr.Mintzer said he could possible help me, but I think I'll try prolo first before I waste his time. The problem with prolo is insurance doesn't cover it and it's quite expensive. Well I hope you find the help you need in your treatment.

Best regards,john.

rosedee · #9 (**permalink**) 05-08-2007, 09:55 AM

Hi John,

Thanks so much for your useful links. Because of my negative experience with prolotherapy (even though it was for my lumbar spine rather than SI), I don't see it as an option for me. It clearly does help some people a lot, though, and I'm sure that 20 years on from when I tried it there will have been improvements with it. I hope it is helpful for you.

Like you I swam a lot for years and did regular Pilates, which I found really helpful for all my back problems - it (together with osteopathy) helped keep me away from the medics for many years.

rosedee

elias2117 · #10 (**permalink**) 05-08-2007, 02:54 PM

Hi Rosedee,

Well all I can say is don't give up yet on prolo it took me 4 prolo doc's before I found one who treated with the best protocal meaning number of shots and solution used. Remember the treatment is only as good as the one behind the treatment which holds true with surgery as well. Prolo if done correctly can give great relief, I have reduced my pain by 50-60% with only two treatments. If it takes me a year of treatment then so be it. One thing you will find that recovery from SI fusion will take 2yrs and there is no reversal if you are fused in an incorrect position then you will live a life of pain. It's all on that SI forum. Best regards,john.