Long Time, No See: 8 Years

Hey everyone, it's been a while.

 

This is the short version of my success story.

 

It's a little bit embarrassing, because it's been eight years, right? Well, turns out, it wasn't eight years.

 

To be quite honest, I have no idea now when I got better from long-term, high-dose clonazepam use as directed by my doctor. I tapered over three months with the help of BenzoBuddies and you made a really painful process much easier for me. I owe you all a debt of gratitude.

 

The horrible rotten feeling lingered, months turned into years.

 

I was seeing doctor after doctor who assured me there was nothing wrong with my brain or my nervous system other than a little bit of neuralgia and some generalized anxiety. I recently had a pristine brain MRI after decades of chronic pain. I felt like I was going mad, that it must all be in my mind, all the standard stuff we all go through.

 

Then I found blood in my urine. Lots of it. That was not a benzo withdrawal symptom.

 

I saw some doctors who found a one-inch "staghorn" kidney stone in my right kidney. Not a biggie, they said, if something were wrong, you'd know about it. The pain would be unbearable and you'd have a fever. Come see us again when covid is over and we'll get that taken care of.

 

I saw another doctor more recently about some spotting I was having and in the process of diagnosing that, they started to look into my kidney function. They ordered a CT scan. Then they ordered a radiological kidney-function test, where we found out the kidney stone had completely blocked the kidney and it had disabled itself and was no longer functioning to filter my blood.

 

Turns out — this is actually more common than one would think — there are people who will live their whole lives without knowing one of their kidneys has gone hydronephrotic (which may clear itself or not) or even nephropathic and off the grid. Others have severe pain or kidney infection.

 

The more you know.

 

In the CT scan, they noted that it appeared some urine was backed up behind the stone. Again, pretty normal, they said. Nothing to be overly concerned about.

 

We scheduled a surgery to look at some extra tissue they noticed in my ureter, between the bladder and the kidney. Just to be sure it wasn't cancer.

 

Thankfully the surgery went well, but what they found was surprising. It wasn’t urine that was filling my kidney, it was an infection. Apparently, it had been there quite a while. Bacteria love kidney stones. Lots of hiding places from the body’s immune system.

 

The best guess my nephrologist, urologist, and I have managed to come up with is that the reason I ended up on all the horrible medications I was on — including the clonazepam — was because I had a blockage of tissue (non cancerous, thank goodness) in my ureter which caused the kidney to go hydronephrotic and eventually nephropathic.

 

Total kidney shutdown.

 

In 2009 I had a tooth abscess that I allowed to get out of control before I asked to be taken to the emergency room. One of the concerns the doctors had was that because the bacteria had been in my face so long, it would have had plenty of opportunity to migrate to other places in the body. They had me on antibiotics for quite a while after that. It’s possible no amount of antibiotics would have been enough, if the abscess bacteria was able to hide away in my kidney — on the sharp outcroppings of struvite crystal — safe from my immune system.

 

Over the course of diagnosing my illness I’d been on long-term antibiotics and many courses of short-term antibiotics. Perhaps, all for naught.

 

I was on many pain relievers, including morphine, and many muscle relaxants: notoriously, clonazepam. If we’re right about what happened, all of pain and muscle spasms I was experiencing were from my body freaking out about the right half of my urinary tract being blocked and then infected and inflamed. Apparently bodies have reactions like that.

 

Because of many factors, but mostly because I was uninsured, doctors took little notice and would do little more than prescribe medications to ameliorate the symptoms. I talked with people who were there and they remember me noting the symptoms which are also symptoms of hydronephrosis.

 

I suppose had I been insured, those doctors would have ordered imaging tests. I don’t know if 2001 tech could have even seen the scar tissue blockage, I could barely see it in the 2022 CT scan they showed me, which presumably has higher resolution, though I don’t know for sure.

 

It is what it is.

 

One thing this group has taught me is that terrible things happen to good people. I’m not even particularly all that good a person and it happened to me. I can only make the best out of the life I have in front of me.

 

Next week is my surgery to remove my bad kidney, the rotting stone within it, and the inflamed portion of the ureter. I believe it will go well, though no surgery is without risks, especially one to remove an infected organ.

 

But I think this is the end of my benzo-withdrawal story. To be honest, I couldn’t even estimate when it ended. It may have been two months after my taper, or two years.

 

What I thought was benzo withdrawal was a combination of many problems. I suppose I won’t know for sure until after the surgery and my kidney is no longer sending out distress signals and my body is no longer fighting the infection. I guess we’ll see.

 

If I don’t make it back, I wanted to leave everyone some hope. Everything ends, even the good things. Just as there will always be new beginnings.

 

I’ll come back one more time with an update. This is mostly just to say, “Thanks everyone. You made this journey so much more bearable. I hope your denouement arrives when you need it and that it is cathartic and filled with gifts of wisdom.”

 

Mine sure seems to be.

Gosh, what a journey you've been through. Thank you for sharing your story. I'm glad you finally got to the bottom of it and I wish you all the best for your surgery!

I'm so sorry to hear all that's transpired with your health but thank you for letting us know that not everything is benzo related.  I'm sad you haven't received better care, but I'm glad you advocated for yourself and hopefully this will help you feel much better.

 

I hope your surgery goes well and I'm grateful you'll come back again to let us know how it went. 

Incredible story.

I can relate having experienced several misdiagnoses throughout my life, including a ruptured appendix that was missed for two weeks. What a hassle. And how unjust that you couldn't get the tests you needed!

You are incredibly strong. Sending you good thoughts for your surgery and I do hope you'll let us know how it all turns out.

 

 

Sorry your going through this  I remember you well and you lovely pics of you canoeing in Seattle and other stuff you were doing, and often wondered about you too  I have Nephritis of  one kidney, I can't swear on it but I  really think Benzos may have caused, I hope you recover soon please let us know how your doing, thinking of you 

 

                                                                                  Love Nova  xxxx  :smitten:

Wow! You have traveled a difficult road. I wish you well and am praying for a successful surgery. Keep us posted!

 

PG

I'm so sorry to hear all that's transpired with your health but thank you for letting us know that not everything is benzo related.  I'm sad you haven't received better care, but I'm glad you advocated for yourself and hopefully this will help you feel much better.

 

I hope your surgery goes well and I'm grateful you'll come back again to let us know how it went.

My words exactly to you, Vegan. May you have a safe surgery and go on to live a happy healthy symptoms free life. You’ve been a trooper for sure. Thanks for sharing!

Hey, everyone.

 

First of all, thank you so much for all the well wishes. I'm certain they helped me.

 

I am home from the hospital and recovering nicely.

 

The surgery took six-plus hours (the surgeon's notes say that in my case, the operation was 300% more complicated than normal), but they got all the bad bits out (it had been infected and scarred up for quite a while, the notes say, but there is no way to determine exactly how long).

 

I am on the mend and looking forward to a better life than I'd thought possible. A bit difficult to determine what symptoms have passed and what will remain, but I can tell something is quite different. I don't have that feeling that "something is terribly wrong with my body, but I can't put my finger on what".

 

I appreciate you all so very much. Wishing you the very best. <3

 

Thank you so much for letting us know how it went, I'm thrilled to hear something is quite different, what a relief it must be to be rid of that feeling.  I hope you'll come back when you sort out your symptoms.