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Has anyone else had a Partial Splenic Embolization?
My platelets had been dropping for several year and my spleen was grossly enlarged. After complaining about not being able to bend over any longer (for two years) my hep and IR doctor chose to do the PSE. It's been a struggle since then and now my hep is considering TIPS then back onto the trx waiting list because they don't know why it didn't work. I'd just like to talk to someone about how their procedure and recovery before my next hep appt Jan 21. I've had a fatty liver since early '90's, then taking Augmentin damaged what was left of my functioning liver in 2013. I've been on the trx list before but currently off of it in monitoring mode with MELD at 10. I really don't want to go back on it, it gives me great anxiety being listed but if TIPS is the answer then it's back on the list. I need someone besides myself and hep dr to discuss this with. Thanks
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@azkellyw, if I'm understanding correctly, you had a splenic artery embolization (SAE), but it didn't relieve or repair the issues you are having with your spleen. Now your doctor is suggesting that a transjugular intrahepatic portosystemic shunt (TIPS) might be the answer. Do I have that right so far?
@gphetteplace @marinab @arqui02000 may have experiencing to share with you about either procedure.
Kelly, I can understand how anxiety ridden this all is. How are you doing? Any update?
Yes, that is exactly the issue. It was to increase my platelets and reduce the size of my "enormous" spleen. It did neither. It caused more unexpected issues than they have experienced in the past with the SAE and are baffled. On January 21st I have my next hepatology appt to see if TIPS is the next step. I just need to chat with someone who has had the SAE and see what they experienced.
I'm having trust issues with my hep team which is adding to the anxiety. Stick with the team I have (Banner) or try another hospital for a second opinion (return to the Mayo AZ)? TIPS being a one way street isn't something I want unless it has to be done but I need confidence in the doctors which I don't have. I'd go back to the Mayo in a minute if someone in billing/insurance would give straight answers instead of cut and pasting then marking the portal message as not able to reply to them. This isn't helping the anxiety either!
Thanks for replying Colleen...the only update is the fluid retention has gone from ascites to lower extremity edema. The Furosemide seems to have stopped working so now I'm self medicating with Torsemide. GI's don't want to get involved if TIPS is coming as it is interference so I'm pretty much on my own if I can some get answers on the 21st.
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1 ReactionHi Kelly,
I developed hepatic artery stenosis after my transplant. The artery was tortuous so they couldn’t put in a stent. Rather than a surgical revision they did a splenic artery embolization, which successfully improved the blood flow to the liver. I had no side effects from the procedure. I’m not sure why they did one on you, and I’m so sorry you’re struggling. I did have refractory ascites/esophageal varices before my transplant and a TIPS was discussed, but I got my transplant before we got that far. For the record, I am incredibly thankful for my transplant. I’m almost 5 years post and feeling great.
Good luck!
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1 Reaction@azkellyw, you can call billing and insurance directly at 844-217-9591 (toll-free), Monday through Friday
https://www.mayoclinic.org/billing-insurance/contact-us
I hope you get some answers. I see @gphetteplace kindly shared their experience with you.
Congratulations on a successful transplant! They did it because of the size of the spleen and it was putting too much pressure on the hepatic vein. Of the five "fingers" off the artery that enter the spleen, the cut off three of them expecting the spleen to reduce in size which at that time was 26 cm x 9 cm x 20 cm with a volume of 2,360 ml. My platelets were down to 20 with my lumbar degenerating quickly so they wanted to get the platelets up so I could get my back surgery done but the platelets dropped immediately and I didn't get it repaired. I also have a collapsed sinus that needs surgery to reopen it but again the platelets are too low and the INR is too high. The SAE was a failure for some reason that they can't figure out. Now besides having varices in the esophagus I have them on the spleen too. Too much pressure.
I'm having parenthesis in large volumes of 5-8 liters every six weeks. That shouldn't have happened because of the SAE either or my hair falling out or loss of taste or major joint pain. Both they and myself are at a loss as to what happened. So that was why the TIPS discussion came up in September but they wanted to wait a few more months hoping that getting further away from the SAE may get my body back to the "normal" way it was.
I haven't talked to my hep since September so I don't know what the plan is but I'm getting annoyed with lack of response from the messages I've sent him and the nurse navigator is now dodging all questions. I'm giving him one more shot at explanation and plan forward on the 21st before I decide to transfer to another hospital or stay the course.
Sorry, rambling. It's just nice to chat with someone when you don't have to explain all the terminology to just to try to explain something.
Separate question: Post trx besides the new immunosuppressants to you still have to take diuretics, MiraLAX and watch every grain of sodium?
Thank you for responding...
Wow. Was the enlarged spleen associated with liver disease? That’s a huge complication. My INR/PT were whacked also. I almost bled out after my kidney biopsy. So glad all that is over!
They were draining 7-8L every 10 days before my transplant, and I was having bands put on the esophageal varices every 6 weeks (they would only do 5 at a time). Horrible procedures, but my mom bled out from those, so I know how dangerous they are. I had a lot of them because the doctor I was seeing at Banner wouldn’t band them because he said they wouldn’t reimburse him. Mayo did 4-5 procedures before my transplant. The remaining went away when the portal hypertension was resolved. Is the risk the same with the splenic ascites? Could you bleed out?
Post transplant I do try to maintain a healthy diet, including not overdoing it with salt, but nothing like before transplant. I did become mildly diabetic (not uncommon due to the drugs), and now I take a low dose of Ozempic to manage it. I didn’t ever need MiraLax. I took a diuretic to help lower my blood pressure (didn’t do a thing for the ascites in my case). I still take one 2x/week, but I’ll probably eventually go off of it.
Happy to chat any time! Good luck with all this. Hopefully you can get all this resolved soon.
I was able to get ahold of a great gal in patient services through billing that answered all my questions (and even gave me the answers I liked :-)). I feel a lot better about going back there now. I'll have to see how appointments goes next.