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18 months post-op and a must read caution about surgery

I promised I’d check in as time wore on and so I shall. My life is far more normal than I ever dreamed. I woke this morning at 4:45am, went to my 5th week of swim practice, and am back to swimming a mile and a half in less than an hour. In the next few weeks I’ll move up to the harder practice and be swimming 2 miles – and will eventually be able to do that in an hour.

Between month 12 and now I had a bunch of issues with where my femur was resting in my hip socket all funny that would come and go, and would inhibit the muscles on my right side only – totally freaked me out and was aided ( fixed) by massage therapy… 2 visits fixed it and shed light on what muscles were wigging out and he taught me to treat it myself.

I have started my Physical Therapist Assistant classes and have 5 weeks left of my summer class – so far, it’s been an interesting, and far easier to study for than learning SI anatomy! So me – I’m great, no more kenesio tape, no more ice or heat, or meds…. I have learned to trust my body and listen to it. I still can’t ride a bike comfortably, but that might just be fear… and I am not a fan of walking mile after mile, but I can… I’d just rather swim 😉

But really, that’s not why I sat down to write to you today…. for months I have been online listening, reading, watching, others that have had this surgery where I did and other places. Today I talked with a good friend that had this surgery with the same team I did and I just have to speak on ALL of my thoughts regarding this surgery. They change, I learn more, I see more, I am exposed to more… and I just can’t stand one more story like the one I heard today.

Did surgery work for me – yes yes it did… but months ago a woman that I respect very very much said to me over the phone, ” You were lucky Amy, you were very lucky.” She didn’t mean fortunate, though I am, she meant lucky as in flip of the coin… I was hurt – I didn’t want to be lucky, I wanted to be right…. I wanted there to be ANSWERS for why so many of my friends that had this same surgery were still in pain months and months later…. I wanted this to work for all of us….

Month after month and surgery after surgery I hear the same story of how multiple providers in there home towns have told patients that there pelvic markers are off, and just like before surgery, it’s causing pain, but NOW it’s locked down and can’t move. causing MORE problems… Melany is a living testament to this… stuff screwed down in the wrong place hurts and has cascading effects…. or at least that is what we are taught when we travel to Georgia… yet when patients come back to Georgia and say- “reams of medical people say stuff is off and not where it should be” – they aren’t heard by the person that taught most of us this( alignment) was an issue and concern yet somehow now it shouldn’t be?! … the best guess most of us make is muscle dysfunction… but isn’t that what was causing the problems before?  How is something that was screwed down now still moving?  What once seemed so clear, so concrete, it’s now a huge question in my head.  I am no longer sure what to say about the idea of manual PT like alignment in the operating room. Is it important? Does it do something… does it do what we thought it did?  I have no idea… I hope someone will do the scientific research and find out.

What I do know is this, I have friends that had surgery in GA with a PT, and they STILL aren’t as they “should be” post-op- they are  in pain, serious serious pain… and those that have gone back to get help…. at least the ones I have spoken too, have NOT been helped. I simply refuse to believe that everyone that has a pain at 6 months post-op has disc issues…. these people aren’t stupid – they are bright, intelligent people, with GOOD Dr’s… and something has not been addressed by screwing there pelvis together, or it has caused other problems to be magnified…. and there seems to be little else that is offered out of Georgia after the surgery… How is this acceptable? How is this ok? I understand no one person can know everything, but when the same script is repeated over and over patient after patient- what else is there to say? It’s so unbelievably unacceptable that I have no words.

Do these crappy outcomes only happen in Georgia- no, no they don’t but it’s where I had my surgery and want others to know that NOT everyone turns out like me… there are people who have had the same life changing results I have had from Georgia AND other places with other surgeons and various implants, surgical techniques.

Is this dysfunction complicated – yes, yes it is… do I still think recovery takes a long time – yes, I do… but there was ALWAYS an over all forward progress for me with steps backward for SHORT periods of time… NOT like my friends that have never gotten better, never gotten relief, and some have even said they are in more pain after the surgery.

So what am I saying? What do I mean? I don’t know – I really don’t… but I do know that I have unintentionally hurt people I care about, and I know I don’t want to be the poster child for this surgery and have people think that I think it’s always the right choice and THE answer…or that everyone that has this surgery is skipping through the flowers soon after because I don’t.

This surgery is a gamble and a HUGE risk. Am I glad I took it – yes… but I feel like I have to speak out for those who wish they had never climbed up on the table. They want you to know – it doesn’t always work… and they wished they hadn’t done it, and now they are in worse pain and trying to find someone that will help them, because they get no more answers from the people that preformed there surgeries… in Georgia and elsewhere…. and it would seem no one has an answer for why…   I want to stress I don’t think it’s the surgeons, it’s the science… we don’t know what we don’t know -and right now there are a lot of things NO ONE knows about this surgery. There is interest, there is an understanding that there is a need for us patients that are in pain, but there is a long way to go in what science understands.

ideas, theories as to why it doesn’t always go well…
maybe it was the wrong diagnosis, maybe SIJD was secondary to something else, maybe EVEN in Georgia people were over corrected and are SILL in a poor alignment, maybe being in any new position is creating stress up and down the spine and is affecting other structures, maybe muscle imbalances still exists that are wreaking havoc on the system… maybe maybe maybe…. maybe it is your hip, a disc, or facet joint, or your piriforims… but you SHOULD be getting BETTER after surgery, not worse, and your surgeon – whoever he or she is- should take you seriously.

To my friends that have suffered and suffered… I am so sorry I could not see this clearly earlier – I always believed you were in terrible pain, but sometimes I didn’t know what to say or how to help. I wanted to believe there were clear answers for you so that you each would not have to be in pain, and that there was hope for an “easy” answer for each of you… but each of you knew it wasn’t so. You all KNEW something was terribly wrong. I still don’t have any better answers, but I want you each to know that your stories have changed me- deeply and permanently. I am sorry – beyond sorry if I ever made you feel like I didn’t believe you, I did – I just still wanted to believe you would get help from where you first “found” it. I find it impossible to hold on to that hope anymore.

So now you might ask – would I have surgery in GA again… yes.. I would… I think… honestly, I am very glad I don’t have to make that choice now….

For a time I thought it might be the only place that one should have this surgery – I no longer think that at all.
I’ve never thought surgery was the right answer for everyone – and honestly am shocked at how frequently it is suggested to people from all over the USA no matter what surgeon they see… this isn’t a cavity filling, it’s major surgery on a MAJOR structure in your body… I don’t’ care how small the holes are – it’s MAJOR surgery – don’t’ be fooled by the minimally invasive label.

Each individual needs to decide what is right for them, and knowledge is power, for when this surgery isn’t right – it’s affects are at least as bad as the problem you were trying to solve…. when it is right, it’s a saving grace…. but how do you know who you will be…. consider that long and hard before you sign on the dotted line.


8 Responses to 18 months post-op and a must read caution about surgery

  1. Maria Isabel Martin

    I too was unfortunately one of the unsuccessful ones pertaining to the Ifuse surgery. I am two years eight months post surgery and suffering from the consequences. One of the rods pinched the nerves that exit my left leg and had a revision six weeks later to no avail. The pain in my foot is worse than the back pain and I do not have full function of my leg let alone life. I need help and I want others to know. Any Dr I’ve seen since is horrified to learn of said surgery. I’m getting tired. Really tired.

  2. Jody

    2 years post op. My Mayo Clinic Dr. Said I have loose bolts ( left side only) I didn’t have right fused. After he did a provocation test…. he said “I take that back, as you should have jumped off the table by all my poking prodding and stretching that joint” then he said “the pain must be coming from somewhere else” he wants me to try and find other therapies. My question and concern is are the loose bolts causing pelvic floor issues or were they causing no my SI problems

  3. Sis

    Had both sides done with the Ifuse procedure and was a bad out come. It is now two years later and found nerve damage has been done by having a sacral EMG done. All the muscles have seized up due to the nerves cannot communicate. This has left more pain where I cannot sit long or walk any distance. Also working with a pelvic specialist for great hopes. There is a great chance that they may not be able to help. Not a happy camper! Had a second opinion from a top orthopedic spine surgeon and said that you should never fuse the SI joints and detour anyone you know from ever doing this surgery.

  4. Debra

    thanks so much for this blog-after 14 years of SI problems with groin pain (car accident-then having a 9lb baby-and then fall down stairs) I am on calendar for bilateral SI Bone fusion next week…feel like I am not going into this blind and have tried everything-including 14 mos unsuccessful PT with SI belt(this time-lots of previous PT), i that only sort of worked and strangled me at night-have been to more medical doctors and holistic treatments than I can even remember.
    It does worry me to hear of those with continued pain because of course I want to be like I was before all this began-and sadly my child has grown up with a mother more in survival mode than thrive mode…but pain block for SI was positive and have no spine issues. My doc is in Indianapolis and has done over 800 surgeries (is neurosurgeon and does some other things, too) He says that recent research shows that most patients really need both sides done and prefers to do both instead of putting people thru a second major surgery a year or two later.
    So-I am scared and yet SO SO at end of my rope as cannot work, go on vacation, can barely go to supermarket or do laundry (have to lean on cart and stand on one leg a great deal of the time)-and I am CRABBY in ways that are so unlike my usual nature.
    And it has been so painful how some friends have sort of treated me like I have cooties as they are all very active and I guess my debilitation brings up their fears. Comments like “wow-you have had that issue for a long time…or “I thought you would have healed that by now:,or you should try this or this or this-I have TRIED almost everything-(yoga killed me as my pelvis went right out worse than everbut I still went for quite awhile. They ask what I have been doing and I do not have much to say…certainly has made me more compassionate to those in chronic pain.
    Anyway-am rambling…will be checking into your site now that I have found it. My PT has only had 2 patients all his SI people who needed the surgery.
    Also I too wonder of the rate of fusion failure-have tried to research online with no luck.Also wonder if there is difference for those who have had other surgeries prior to SI fusion?

    • Debra

      wow-just re read my old post here. after reading this cautionary post I decided to get a second opinion. A new MRI showed a totally flat ruptured L5S1 disc with nerve impingement! Not sure how first MRI did not show this. The second surgeon said SI apparently normal! So had Spinal fusion which was no picnic and only partially took away the pain. The original surgeon who was going to do the SI fusion was actually shocked and admitted that he never would have fused my SI if I had ruptured disc. But he is now doing SI fusion clinical trials and offered to fuse me if I need it down the road! Yikes I hope to never have another surgery again if I can help it as sadly a drug related reaction kept me in hospital 9 days and then had to go to a rehab! And I was pretty healthy to start with!

  5. Tonya

    Amy,
    Your website is a wealth of information. Even though I’d do ANYTHING to have my life back as it was before my hysterectomy, I can’t afford to hurt even more, possibly permanently. I, like you, have done much research on SI Joint Dysfunction. I have just recently decided to wait this out a little longer. Every surgeon has success stories as well as unsuccessful ones. Everyone’s body has and will continue to respond differently to SI joint surgery. The truth is, you won’t know how or if your body will respond to the surgery, whether it’s in a positive or a negative way, until you take the risk. It’s a gamble….that’s the best way I know to describe it. It’s a very expensive gamble, both physically and financially. You have to decide personally if you are willing to risk it. You want so desperately for someone else to tell you what’s right for you, your doctor, your family, your friends, your physical therapist, but they can’t. Personally, I believe all you can do is to pray about it. If HE doesn’t give you a peaceful, what I call “warm and fuzzy”, feeling about it, then you shouldn’t do it. The day I decided to proceed with the SI joint surgery, all kinds of red flags appeared, one right after the other. The minute I decided not to have the surgery, I was very relieved. I felt all warm and fuzzy again and hopeful that something will come along soon that will be more of a sure thing. I don’t mean to put doubt in anyone’s head that has decided to have the SI joint surgery. I’m just telling my personal decision. I put a lot of faith in God and I feel like He’s telling me it’s not the right time for me to have this surgery. It might be the right time for someone else though…..just PRAY about it.

  6. glorie

    wow! I am glad i stumbled onto this site tonight, I had L5S1 fusion in 2007 from traumatic injury. Had my right SI fused 2 months later (had chronic problems with it, made worse from injury). My SI had been fine up to 3-4 months ago, and now i am having episodes of severe Right SI pain to the point I collapse and at times can’t walk or bear weight on my leg due to pain in SI. I have just started to look into possibilities, ie is this unusual? am I the only one? is my luck that bad? Is it possible I am not fused after this long, as it certainly feels like something is shifting/moving/locked up in the wrong place? I don’t know what to do to be honest. Long story, but i am sick of surgeries – 18 total (fractured leg in mountain climbing accident also, in ’04, didn’t heal for 15 months and multiple surgeries). Anyhow, tried to get info from IFUSE company, but they wouldn’t tell me anything ie what is rate of fusion failure? what can be done if I haven’t fused, so long after? Could i still get an injection to get relief with the implant in place? I am so frustrated, and lost. Any suggestions greatly appreciated. Thank you. I am so glad for your good recovery. You go girl!.

    • Amy

      Glorie,
      I am so sorry to hear of your pain and struggle! Since I am not a Dr I am not sure if you are fused or not, but you can find out if you can get a dr to order imaging. I’d go back to the surgeon that did it first… trying to find a follow up surgeon isn’t exactly easy…. or so I am told. I don’t blame you for your exhaustion and frustration. I would be too.
      I have no idea what the failure rate is, or how they define it, but I know your not alone in having pain post-surgery. I encourage you to search on Facebook for SI groups and ask there… you will find your not alone at all.

      General suggestions are:
      follow up with your surgeon – imaging at the very least
      try PT – could be something somewhat easily fixable that has gotten unmanageable and can be addressed
      try pain management to deal with the pain and see if they can help figure out where it is coming from and why your having it.

      best wishes to you!
      Amy

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