There is a lot to catch up on since my last post at the end of July which focused on these wonky ribs of mine.
During my last post, I was only a few weeks post-op from my right-hand surgery for De Quervain’s Tenosynovitis and I was around 6 weeks post-op from my latest rib surgery for Slipping Rib Syndrome.
I say it every time – that I hope it is the last time I have to talk about these wonky ribs. And every time, I am let down.
As of now, late October, I am just over 4 months post-op for these ribs and I am still not right.
It was about a month or so after surgery that I thought I would be pain-free and wasn’t. I keep having rib pain, tightness in my costal arch and I am having pain in my spine now, too.
I have gone to the VA a few times for my one-month and two-month follow-up visits after surgery but my surgeon has been on maternity leave. I was supposed to see her for my last appointment but she took another month off.
Because it is so hard to get anyone to understand my pain and see what the problem is, I had to reach out to the Slipping Rib Specialist, Dr. Hansen, for the second time.
If you remember, I contacted him through his wife on Facebook and I got a ‘second opinion’ of sorts prior to my last procedure.
But, as it turns out, some things are wrong with my care team, my surgical history, and I have learned a few things now that Dr. Hansen and myself have gone over my previous operative reports from surgery.
Dr. Hansen had requested my reports when I requested a second second opinion from him. Technically, as he has never seen me in person, the information given is ‘just his opinion’ but I trust what he has to say and the kindness he has shown me throughout this whole process. He and his wife have been extremely helpful and willing to hear my story.
My history gets a little messy and having those operative reports fills him in on what has gone on with my care team, my surgeries, and, where my body is at in the healing process.
Turns out, I have a lot going on and there are many things that should have been done differently. But hindsight is 20/20.
First, for the neurectomy surgery. That surgery should NOT have happened. Cutting the nerves was never going to help my hyper-mobile ribs.
And, according to the operative reports that I had never seen before – they “inadvertently” (ie. accidentally) entered my pleural cavity – my lung cavity – which, in turn, lead to my collapsed lung and needing a draining tube to be left hanging out of me.
Also, according to the report, as my nerves were cut, for some reason the surgeon cut my blood vessels and removed them, too.
Now, none of this should have happened and has, in turn, lead me to not heal properly.
According to Dr. Hansen’s opinion, removing those blood vessels has set me up for failure with compromised blood flow to that area, leading to multiple cases of infections. rejecting stitches and not healing correctly. He knew from those reports that I was in pain daily still and that my body wasn’t treated correctly.
With the titanium plate placement and removal surgery, with the rib tip resection of my 10th rib – it was a good idea in theory but I still wish my care team had listened to me when I constantly mentioned Slipping Rib. Had anyone listened to me years ago, maybe I wouldn’t be where I am now.
And for my latest surgery to fix the sutures and stabilize my rib cage back to a ‘normal’ position, my care team spoke directly with Dr. Hansen prior to the last surgery this past June. It was brought to my attention that while my surgeon and Dr. Hansen spoke about my surgery and the ‘Hansen technique’ for Slipping Rib Syndrome, my surgeon didn’t mention my partial rib tip resection. Had that been mentioned, a different technique would more than likely have been used.
And that leads me to today. I’m a few months post-op and my 10th rib is still moving, still hypermobile, and, still slipping.
I believe some of the integrity of the rib cage has been lost with the rib tip removal and the titanium plate being placed and later removed. My ribs being stronger than the sutures, the ribs and lungs expanding naturally and tugging on them may very well have pulled them.
After speaking to Dr. Hansen again to see what my options even are, I more than likely need another surgery. Dr. Hansen had asked me to heal for a few more months – and I agreed. My body has gone through hell for the last 3 years, so 6 months off from surgery is ideal.
If and when surgery is planned, Dr Hansen mentioned that there’s a lot to deal with. Because my blood flow to that area has been so compromised and I have had multiple unsuccessful procedures, a reconstructive plastic surgeon and muscle flap surgery will likely be needed – to move my six-pack area blood flow to the compromised area, as well as fixing the dislocated ribs to their most available ‘normal’ anatomical position at the same time. This would be another extreme surgery, my most extreme, and not an easy one to heal from.
So, I have to heal for a while longer before considering another procedure, the hardest I have ever gone through. I also have to think about starting my healing process all over. I get to continue this daily pain for months only to look forward to another procedure and the pain that comes with that. But, I have high hopes that maybe I can finally be free from daily rib pain.
Dr. Hansen understood that I was disappointed and in pain. I had wanted to be healed years ago and with my current rib state – he knows that I am in pain every single day – and it will only get worse until we figure out the next step. But, this is where we are at and this is what it has come to, to heal these ribs and stop the constant pain.
Until I am around 6 months post-op, I am supposed to take it easy on these ribs.
Dr. Hansen has worked with my care team to get a consultation visit scheduled for January of next year! I will be driving to West Virginia to meet Dr Hansen and his wife and let them get a good look at my ribs firsthand.
Based on our last conversation, Dr. Hansen is going to work with his plastic surgeon colleague to come up with a plan of action but that may change when I meet them and they put eyes on my rib area.
I really do wish I had fought harder to explain Slipping Rib Syndrome and fought harder for a second opinion from the start, but I can’t beat myself up or change anything now. I just have to keep moving forward.
I am excited to finally meet Dr Hansen, no matter what happens, but I am remaining hopeful that he can help my complicated ribs.
As for my hands, my ganglion cyst on my left hand has been flaring while my right hand is healing from surgery. I am just about three-months post-op from that procedure and I began occupational therapy for my hands a few weeks ago. There is still some weakness and residual pain but I am grateful that these hands are on the mend, for good.
With stress from my ribs, my Crohn’s disease also goes a little wild. I can tell that my body wants my Stelara shots and I can tell from my symptoms that I track through the Gali app that my body isn’t happy these days. There are trends to follow with my Crohn’s disease management and I’m finding more and more bad days.
I am not at my worst with my Crohn’s disease but I am not at my best, either.
I do believe that if I could get my ribs under control and the stress with them, that my Crohn’s disease would follow.
Based on tests and before surgery, I should be on the mission for remission and I should be feeling better. But, with daily pain and other factors, internally I suffer.
I feel stressed, depressed, anxious, and on edge. I’m in a constant state of being hyper-focused on everything and these ribs – from how I position my body and how I can move it, how I sit, stand, lay down and get up – that I never get a moment’s rest. If I slip for one second and move wrong, my ribs cause so much pain that I’m crying and I can barely move. It is exhausting but I’m managing best I can.
I will say that my mood was brightened a few weeks ago when the VA called me to come and pick up my specimen – my rib tip – a tiny little portion – that was taken out in January that I begged them to give me earlier this year. I got the hardware this spring, the titanium plate and screws that were inside me, and they have sat on my desk ever since. I was under the impression the VA was not going to give me the bone back, so I let it go. It was a call out of nowhere but the lab person told me I could come and get it right then and so I did. I am happy to say that it is sitting on my desk now, too.
Otherwise, my right hand is healing from the last surgery that was done on it in July. I have seen occupational therapy and began hand exercises with them. I am still in and out of my hand braces – I had surgery to get out of those damn things – but it will take time for my wrist to heal.
I did have to call in last week to my GI and be seen because I was pretty symptomatic and losing blood. I have another future appointment scheduled with her now to discuss the blood work and stool samples she requested. There will be another Exam Under Anesthesia (EUA) scheduled for me, too, to see what options the colorectal team can offer, as most of my symptoms are perianal.
I am maintaining as best I can. I recently had my latest Stelara self-injection and I am trying to keep up with my daily IBD habits and symptoms with my Gali app, as I mentioned in my Gali Health post. I also just recently sent in my Gali Health IBD Footprints Research Sample #2, so a post about that will be coming soon.
I am taking each day as it comes. I have had an extremely busy October and I am trying to do a lot of things for myself and others. It is hard to remember to take it easy on yourself when you don’t want to let other people down but you have to take a day or two when you can for self-care – that’s what I have done today and how I am finishing this blog for you all.
Be kind to your body and I will try to do the same.
For me, It Could Be Worse.
And as always, any information you’d like to offer up about Stelara or any of my current struggles and/or issues, I have open ears and I’ll happily take any tips you have to offer!
CURE for IBD: For those of you who are continuing to donate to the Cure for Crohn’s and Colitis, I encourage you to donate towards my team page with CURE for IBD – where 100% of the funds WE raise will be allocated to IBD research for a cure. That’s right, 100%!!
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