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.