Crazy to think it is already the middle of February and March is just around the corner. I have spent the majority of this new year at home and preparing for the next steps in my healing. I have been out a few nights and tried to see friends, too, but only because I will be cooped up for the next few weeks.
Now that it is almost March, I am just days away from heading to West Virginia to work on these wonky ribs. This March marks 3 years of my life dealing with slipping ribs, and this next surgery will be my 5th on my thoracic area.
I’ve mentioned these ribs enough, I won’t go into the previous surgeries or history of my past 4 procedures. Those details can be found in one of my many previous posts about my ribs:
- Slipping Rib Syndrome – Ribs Not Healing & WV Consult Scheduled
- 3 Months Post-Op Slipping Rib Syndrome
- Slipping Rib Syndrome | IT COULD BE WORSE BLOG
- Thoracic Follow-Up & Slipping Rib Syndrome | IT COULD BE WORSE BLOG
- Rib Plating Surgery and Thoracic Appointments
- My Wonky Ribs and Neurectomy | IT COULD BE WORSE BLOG
- Stelara Self-Injection #2 & Rib Pain | It Could Be Worse Blog
In early January, we made the 600+ mile round-trip to see Dr. H in West Virginia for a consultation and we left with a plan of action for these ribs.
After trying the hooking maneuver, Dr. H knew that I was still having problems with Slipping Rib Syndrome. I want to note that this is the most effective way for diagnosing SRS by using your hands, placing them below/under the ribs, pushing upwards to feel for movement. If there is pain, SRS is confirmed.
After 3 years and multiple doctors and surgeons, no one had ever performed the hooking maneuver on me except me, which to be fair, is hard to do to yourself. Dr. H felt my ribs, locating and counting each rib from my hip, upwards.
Dr. H felt my 10th rib, which was further down we thought it would be – my surgeon had replaced the sutures to stabilize the ribs last year but we do not know if she used the Hansen Method that was discussed with her. My 9th rib is also is located at the costal arch, leaving me with two wonky ribs.
Even after 4 thoracic surgeries to hopefully improve my ribcage, my ribs were still very separated and hypermobile. Thankfully, the damage done to me in previous surgeries isn’t too big of a challenge to handle for Dr. H. – we were both a little afraid of that prior to my in-person visit.
Of course, surgery is never the goal. But, when you have a mechanical issue inside your body, like your ribcage, then that can lead to other issues, such as neurological pains and feeling the ribs slip under.
Because of my previous surgical history, with the neurectomy leaving me without feeling, scar tissue, and severed blood vessels, there is a high risk for infections.
I have had infections with every thoracic surgery I have had. This doesn’t come from my lack of care for the wounds or hygiene, but because my body rejects things. With my nerves cut in the neurectomy, my blood vessels were also severed, leaving my left side torso to be without significant blood flow. This leads to infections, rejection of the stitches and sutures, the wound not properly healing, and it can lead to problems for weeks if not monitored.
Another challenge, my rib tip removal. Since Dr. H is only familiar with my op-reports and has not viewed my ribcage itself, the rib tip removal proved a challenge because he didn’t know where it came from or how big the resected portion was. It is extremely smaller than expected and may not be a large issue, but something he will have to work with.
These challenges present themselves because Dr. H does things differently. He would not have served my nerves or blood vessels and he would not have used a titanium plate on my ribs. And, he would have listened to me 3 years ago when I began having rib problems.
But, those things happened and the rib cage that I am left with offers more of a challenge versus the rib cage I had and more of a challenge than if I found Dr. H in the beginning.
Because of my history, I was nervous that I couldn’t be helped. No, I will never be perfect, but I will be better off. I have so much respect for Dr. H and his wife, they have been so helpful and listened to my concerns.
It is incredibly validating to have someone who is as experienced as Dr. H assure me that I am not crazy, my pain is real, and that I did everything right by trying to explain SRS to my care team during the past 3 years. It was nice to speak to someone who understands SRS, who knows that it is a real issue, and he tries his best to help each patient individually – and I know this because of how I was treated and all of the praise he receives online in SRS groups from patients.
In hindsight, I wish I would have found Dr. H sooner, but I am grateful that he is so kind and willing to help me try to get my body back.
With my consultation, I left with a surgery date and hope for these ribs.
With only a few days until my next surgery, I am eager to get the procedure done and I am hopeful for better days ahead – but I always dread the recovery time, the pain, and the fact that I can’t heal at home this time.
Because of my surgical history and being prone to infection, I will have to stay in West Virginia for monitoring after surgery for at least a week.
There is a 99% chance I will be having a Wound VAC placed, to help decrease infection and swelling, and Dr. H has said he will be checking in with me often to see how I am feeling and for dressing changes.
After a week or so with close monitoring and the vacuum installed, it will be removed and I will get to come home. The vacuum is also called negative pressure wound therapy and it will apply pressure to the wound and a clean, water-proof environment, while also having a suction pump to remove fluid and infection.
Now, with these types of surgeries, we never know what is going to happen until the doctor is physically inside my rib cage. He could use suturing techniques, absorbable plates (never titanium like I previously had), remove and use my own cartilage as a buffer between the loose ribs (think toe separators), or even a combination of each.
I have no idea if previous incisions will be used for exploration, there is a lot of scar tissue from the 4 previous surgeries, and I don’t know if the scar will be larger having used the wound vacuum. These things are all unknown until I wake up from the procedure.
I’m going to have to pack extra carefully to prepare myself for a recovery not at home. I never spend the night at the hospital and I usually ask to go home as soon as I can post-op. If I have to be in pain, I like to do that in the comfort of my own home, so this will be a challenge for me to get through. I will be posting another blog about my surgery packing list once I get things packed and prepared.
It is recommended that I get up and move around to an extent during the recovery, so hopefully, there are a few nice parks and trails around that won’t cause me too much pain to go see.
It may not mean much to you guys, but after suffering for 3 years, being medically gaslighted to believe my pain wasn’t real, and being blown off by other doctors – to finally have someone understand is unexplainable. I get that my previous doctors felt like they were ‘right’ and ‘trying to help’ me, but in the end, I was right all along and their ‘help’ only made this more of a challenge.
The highlights are that I can hopefully be done dealing with these wonky ribs of mine and that I get to belt out some John Denver on the way in and out of West Virginia.
I made sure to play the Take Me Home video on my drive into West Virginia for my consultation and I had planned to play it again on the way home but they played it on their local radio! It was almost 5 pm on a Friday and they closed out the work week with it! I was so happy and found that to be pretty awesome.
Just know, we each know our bodies best – so fight for what you know is right, seek that second (or third opinion), and never stop until you find someone to listen, really listen to your pain and problems. You are your own best advocate.
So, until March, I will be preparing for surgery, getting myself prepped for the post-op pain and recovery, and doing my best to stay healthy.
I have received both of my two rounds of the COVID vaccine with only minor side effects like arm tenderness near the shot area, feeling overwhelmingly tired, nausea, and a stuffy nose. I have heard others’ vaccines have been harder on them and I am grateful that I have only had a few minor symptoms.
As for my Crohn’s disease, I recently had another Exam Under Anesthesia (EUA) for my Crohn’s and perianal disease to check for abscesses and fistulas, etc. I had to get another COVID test before that exam and the VA was offering vaccines the day I went. I didn’t have an appointment for a shot but it didn’t hurt to ask – within 20 minutes I had been tested and given my first dose.
My EUA for my gastroenterologist only provided information about internal hemorrhoids, with no abscesses or fistulas found. This is good news but because I have recurring bleeding and issues, we think they may be the culprit. We didn’t plan for those, so the exam was just an exam, and I have a follow-up with my GI later next month.
I will have to inform my GI about my next Stelara shot, too, and let her know that I will have to/ will have had to administer it on a 2-week delay this time.
Funny but not funny, no surgeon at the VA has ever asked me to wait on my medication before surgery as it was never a concern for them or my post-op recovery.
But because Dr. H is amazing, he immediately noticed that I am on immunosuppressive medication, Stelara, and that can hinder healing and immune response. So, I am to wait a few weeks before my next injection, a 2-week delay, to help my body fight infections before being suppressed again.
So, does anyone want to tell me why the VA never considered this in any, ANY of my previous surgeries? Not once in 12+ of them… It seems almost comical how different a private doctor is from the VA in procedures, communication, and care.
But, I’ll see GI in a few weeks and let her know.
I’m also scheduled to see a new rheumatologist. I had asked that my appointments be virtual while I wait for my second vaccine but they told me it HAS to be in person since I will be getting a new provider.
I did have another meeting with my hand surgeon, as a follow-up with physical therapy. I do have some pain and weakness in both of my wrists, but I think that is just something I will have to live with. I have been released from their clinic for now, and I will have to follow up with physical therapy after I heal from rib surgery.
I’ve also mentioned bad days on my social media. I’ve been dealing with mental health concerns and working with my PTSD and high social anxiety. I’m not going to give too much information but I am trying to see an outside source from the VA.
At the VA, anyone can read your therapy notes, and every three months or so, new attendees start in new clinics. This means that my visible mental health notes are available to new attendees every quarter of the year and this doesn’t include the doctors or new doctors who arrive. This can mean up to 4 or more new people who have access to my notes each year. I find this violating and I want my notes private for private conversations.
So, I’ve asked to see an outside source and the patient advocate at the VA has helped me find a location that has access to my VA healthcare paperwork but the VA doesn’t have access to theirs.
So, with so little going on this year and quarantine somewhat still in effect, a lot has been happening in my world.
I know this is a lot and this post has become too long already, so I will try to end it here and fill you guys in again post-op next week. Follow It Could Be Worse Blog on Facebook or Instagram for more up-to-date posts.
Stay in, stay safe, wear your mask and try to enjoy a week without snow and ice.
For me, it could be worse.
Previous Posts on Slipping Rib Syndrome from It Could Be Worse: