out of the silence: Part Two

I skipped ahead in the timeline a bit from my last post to save (many) people the agony of my life’s minutia…this is supposed to be a recap! 

Summer 2018, a friend of mine added me to a Facebook group about Breast Implant Illness. It was around the time I started opening up about my MS diagnosis. I had a lot on my mind.

I disregarded it at first but after a chance interaction with a woman one day in January 2019, I began to dig deeper. 

Another long convoluted story...

In July 2008, I had a breast augmentation for cosmetic reasons. I remember at one of the visits surrounding my surgery, the plastic surgeon told me that in ten years I would need to have the implants exchanged.

Well, by March 2019, I was closing in on 11 years with those toxic bags of silicone fixed under my pectorals (chest muscles for those not as nerdy as myself).

Anytime I mentioned random/weird symptoms to a physician wondering if there was a relationship to MS, I was met with the answer, “We don’t know” or “We studied it and found no relationship”. 

OK, I guess.

Then I went to that Facebook page I mentioned earlier. 

Whoa. 

I found another Facebook page and a (more informational) webpage Healing Breast Implant Illness.

Another rampage of reading, learning and trying to understand ensued.

I mentioned I was REALLY nerdy right?

Towards the end of March 2019, I watched/listened to hours of FDA hearings regarding implant illness. Here's another good reference on the topic as well a a speech.

May 31, 2019 I had my implants removed. 

En Bloc Total Capsulectomy with implant removal. The same surgeon who put them in took them out. He told me the request for implant removal had skyrocketed.

More random happenstance (or God’s little plan) the mom of one of my daughter’s friends from school is the marketing director for him. Because of the significant increase in requests for explant, she had been urging him to add a page to his website about it. He finally consented so she and I collaborated on an FAQ Page for his website to talk about explant surgery.

Surgery/recovery went well and many symptoms went away after explant surgery. I was never sure the relationship, there was no guarantee of course, but things got better once they were out. 

Day of Surgery

Why did I get those toxic sh*t bags in the first place??? Great question and LOOOOONG psychological answer. I started a list of the improvements below and erased it, too long. I will tell anyone who wants to know, message me.  

All the pics were taken around the same time of the day and I attempted to be in a similar light.

upper left=month prior to surgery; Upper right= morning of surgery; bottom left= one day post op; bottom right= one week post op.

is the same as above except the bottom left is the one week and bottom right is one month.

Alright, so that gets us into June-ish! Making good time here.

Side-story leading into the next part, otherwise known as a “transition”…

For my surgery I had to stop my blood thinner three days before.

Good LORD. That was a terrible couple days. 

Headache, blurry vision, ringing in my ears, heavy legs, cold hands/feet symptoms went from 5/10 to 9/10 within 24hours. 

I wanted to die. Good news though, I was able to restart the morning after surgery. 

Whew, significant improvement. 

In Part One , I mentioned “almost” being the same person. This was what I was eluding to. I had the implants for over 10 years. I was “attached” to them to say the least ;-) 

Looking back, it’s easy to question why I got them. Was I that insecure? 

Yes…I had dreamed about it since high school to be honest. My outside would finally match how I felt on the inside.

It’s interesting to look back at my “health timeline” and see A LOT of illness once I got them. I had significant inflammation. Gained 20ish lbs (otherwise known as "the thicker years"). Had sinus surgery. Thought I had asthma. A lot of things to list. Completely thought i was a hypochondriac. Oh, then I was diagnosed with MS.

Right before my explant surgery, I was losing hair, weight and was downright sick. It was another hard time. 

March 2019

The decision for explant was tough really. My vanity was scared to not have the implants. I looked good in clothes (minus the significant weight loss). I was happy (on the outside) with them. With how I was treated. Honestly, it’s a thing. Having been on both sides now.

Something I NEVER thought I would be talking about for sure. 

Not that I hid the fact that I got them in the first place…I mean anyone who knew me before I got the implants, it was OBVIOUS. However, many peopleI'm with now never knew me before and I had to come to terms with that, and my journey.

It was a big mental and physical overhaul. 

Going through A LOT  of emotional stuff at the same time here… Anyone else mentally and emotionally exhausted or just me??

Which brings me to the next part of my story.

I had been in communication with the founder of a CCSVI Clinic in Poland since October 2018. 

After my episode off my blood thinner, I reached out to him again. 

Was there ANYTHING that could be done? Was there SOMEONE who would try again? Was there SOMEONE willing to look at my vascular system?

Thankfully there was.

September 7, 2019 we (husband, daughters [4&2 years old] and I) boarded a plane to Warsaw, Poland. The clinic is actually in Poznań, Poland about 3 hours by train west of Warsaw MAP. 

Because it was outrageously more expensive to fly into Poznań instead of Warsaw, I travelled by plane Monday 9.Sept to Poznań while my hubby took a train with the girls later in the day. Dad of the year!

All my travel abroad skills came in handy.

The clinic is fantastic. Private wing of the hospital with new everything. The staff was amazing. They are doing research on CCSVI. I had three wonderful meals per day (although I did not stay or eat there at all times). We rented an Airbnb close to the hospital that was super. 

Anyone read Polski? Elevator to the 5th floor (5 Piętro).

"Thumbs up pic" after my first procedure

I had imaging (multiple MRAs, CXR), physiotherapy assessment, EKG, nutrition assessment, private hospitalists/nurses/aides, neurologist, vascular and neuro interventionalists, OH MY! What a team.

I’m sure I left out something important.

Sept 11 I had a repeat venoplasty where they were able to inflate a balloon in the left internal jugular and azygos veins. 

Unfortunately, the right IJ was 100% blocked with scar tissue (old blood clot that didn’t dissolve) and therefore impassable with the guide wire they were using.

Side note, because I had a neuro-interventionalist, they threaded the guide wire up my left internal jugular and over to the other side THROUGH the venous system in my brain. Yes, it was TOTALLY weird. No narrowings or blockages he could appreciate.

Amazingly, the vascular physician wanted to check on my left renal vein during the initial procedure to see if it was collapsed at all. Sure enough, my left renal vein was 78% collapsed being pinched between the superior mesenteric artery and my Aorta (for those of you interested: Wikepedia-Nutcracker Syndrome). 

Per the vascular physician, his experience has shown him that women with MS lesions in the thoracic spine (which I have) also have collapse of the left renal vein…interesting observation.

That led to a discussion and decision to proceed with directly approaching the scar tissue of the right IJ to attempt getting a guide wire, inflating a balloon, then placing a stent. Additionally, he wanted to place stents in the left renal vein.

We all agreed to move forward with the plan. So, on 13.Sept I had the additional procedures. I was supposed to be the first procedure of the day. They had to order the specific stent the doctors wanted and the stents were lost. So, I waited until later in the afternoon. Proud to say I was a patient patient. Used to delays after 12 years working in the OR myself.

I don’t brag much, but I’m pretty tough. I have completed many athletic events that were a “suffer-fest”. Plus, I had two children at my house without pain medication, does that legitimize my claim? 

Let me just say that I suffered greatly during my second procedure. I was not asleep or pain free….I’ll leave it at that. 

There were a lot of silent tears. And silent ulgy crying. I hate to make this comparison for the misinterpretation of Jesus and I, but I kept saying “My God, my God, why have you forsaken me?” It was not the greatest experience.

Whew, who wants a Norco?

I did request IV Tylenol after that one.

I mentioned above that I probably missed something important. I did.

My nutritionist, Jan, was also our “translator”. He was a gift from God. 

Literally, I am convinced he was there just for us. He picked me up from the airport when I had to fly in earlier than planned. He set up taxi for me to get to the hospital almost every day so I could stay at the Air BnB with my family in stead of the hospital. He not only helped with my nutrition, the day to day discussions with staff translating Polish to English but he sat with me many times I was just waiting, and waiting, and waiting for something while Simon was out with the girls. He bought the girls the most perfect gifts just because. He brought us the BEST Polish doughnuts with the MOST DELICIOUS frosting. He coordinated our move to a new Air BnB because we couldn’t stay in the original one when we stayed longer in Poznań for the additional procedures. He went with Simon and the girls for ice cream during my second procedure. He took Simon and the girls to get the BEST pirogies and brought them to the hospital since I had to stay over night after the procedures. He rented car seats to take us around for a good meal and some sightseeing. He printed our train tickets for Poznań to Berlin. For real, an angel from Heaven. Thanks Jan.