Thal Minor - spleen is huge and hurting, pushing my kidney***6 month update**

In addition, I have Gilberts Syndrome. And when you combine those 2, I am also having severe Gallbladder problems.

I Know it is my gallbladder even though the ultrasound and HIDA came in clear. My oncologist believes that also. It is frustrating because I am healthy other than the painfull gallbladder and the huge spleen.
The GB issue started in October. Many severe classic attacks. My right shoulder is killing me. I almost cried when the ultrasound tech was scanning, and I was sure they would find stones, but nada. Then in Dec my spleen started to swell pretty quickly. They did a PET scan and there is no cancer at all.
Dr said he suggests spleen removal and GB removal. I am 100% with the gallbladder removal, buy i am only 98% with the spleen. My mother had hers removed at 38 also. Now she has to take chemo now due to too many platelets. I am nervous about the spleen being removed, but I am in pain from it. I know my condition is not as serious as most. I was bodybuilding untill october when GB began. I have lost 30 pounds of muscle since then. I should have no problem getting it back, right? Thanks. just a bit nervous about the spleen removal. Once it gets this big, would it ever shrink? Thanks

HI DONNA

Donna,

Try to maintain good Hb by taking foods which are rich in iron. Spleen is enlarged due to low hb. If you maintain good hb, you should start seeing it getting shrink and back to normal. Moreover your doc might suggest iron tablets additionally if hb is low.

-P.

I dont think I have a choice at this point. My spleen is causing pressure on my kidney, lots of left shoulder/back pain. it is sensitive in the front as well. dr did say i have a cyst on it as well. he said it wont shrink. looks like i have a baseball sticking out my left front torso. It is just do darn uncomfortable. When you put my gallbladder pain into the mix, It all hurts..... I need to get them out to get on with my life. I am down 30 pounds since october.
Any post splenectomy advice will be welcomed. I am scared a bit. OPSI is scaring the hell out of me. My mom in her late 50's is now dealing with incredibly high platelets. I assume I will be dealing with the same.

Once my spleen and gallbladder are gone will I be able to resume my bodybuilding?

Donna,

Once you are healed from the surgery, there is no reason you cannot resume bodybuilding. The combination of Gilbert's Syndrome and thal minor does lead to gallstones, and it may be that you have a stone lodged in a duct that is causing the pain. The spleen size is unusual in thal minor, but not unheard of, as minors do often have enlarged spleens, but not of that magnitude. But it does happen due to a high rate of red blood cell turnover or hemolysis. Regardless of the cause, the description you've provided of your spleen size presents a spleen that is in danger of rupture from a sharp blow.

Once you have had a splenectomy, you want to guard against clotting issues and pulmonary hypertension (PHT or PAH). Natural vitamin E complex can help you avoid the clotting issues. L-carnitine or L-arginine supplements can help you avoid PHT. If you've been bodybuilding, you may already be taking this. Think antioxidants, both supplements and diet. The high rate of hemolysis leads to a high rate of oxidation in the body and this must be countered to maintain good health.

Andy, thanks. Actually my name is Mark, I said Hi Donna because I knew my mother in law was reading this and I was saying hi to her.
I am really nervous about this surgery. I weighed 230 all muscle in October, today I am 200 and I lost it all.

So since I am suffering classic Gallbladder problems but all the tests show my gallbladder is fine, you think there might be a stone in a duct? The oncologist is just putting my Gilberts and Thal together and deducing that my GB is bad.

The things about my spleen that make me nervous are germs. I have 2 small kids who are like little Petri dishes of germs. Also I like to fly a lot, so being on comercial airlines with people all around, is that dangerous? So vitamin E will help me be proactive with the platelet issue I may face in a few years? Dr said in 2 weeks I can begin lifting again, sound right to you? He will do it laparoscopically. I know I am rambling but I am very nervous.

Sorry about that Mark. How big is your spleen?

Vitamin E is a mild blood thinner and powerful antioxidant. It can help reduce the danger of clotting and also helps to counter the oxidative stresses that are caused by the high rate of hemolysis you are experiencing.

There has to be an explanation for your gallbladder pain and that would involve gallstones, whether or not they are easily detected. Gallstones blocking a duct can be extremely painful, so this is a real possibility. Thal minor alone greatly increases the possibility of gallstones and Gilbert's magnifies that risk. However, the combination does not create such severe symptoms in most patients. Because we occasionally hear from a beta minor who has symptoms of favism, I think you should review the list of antagonistic substances that can cause hemolysis. It is named favism after fava beans, which are a broad bean, but it can also be related to ingestion of certain medicines or chemical exposures. Your high rate of hemolysis is unexplained but is evident by your large spleen. See the link at http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830

Here is update after seeing my surgeon.

He said they both new to be removed. I did not get the measurement but he kept calling my spleen "massive" and all of the dr.s that have seen it and felt it were astonished. He said there is no way to remove it laproscally. Now it appears we are looking at long recovery time. Add to that I need 2 vaccinations that I need 14 days prior (gettin them tomorrow) and my wife Goin to Europe for 9 days on the 17th. I probably won't even have surgery untill the end of Feb. damn.

Update. Surgeon called today. I will be getting spleen and gb removed on Wed feb 6. 1 day before my birthday. I am gla this will be over, but I am nervous as hell. As I said before, this will not be laparoscopically done, the will be a big insouciant because the spleen is so damn big. Any pre/post operative advice? I will be in the hospital for 4 days.

Make sure you understand the post-splenectomy requirements concerning the pneumovax vaccine and daily use of antibiotics. It is common to take daily antibiotics for 1-5 years or more after a splenectomy. Talk to your doctor about this. Also, be aware that there may need to be some alterations to your diet after the gallbladder is removed, if you consume foods high in animal fat.

I know you're nervous about the surgery, but it is a fairly common procedure and many thal intermedia and majors have had it. Our member Nur had a huge spleen removed (25 cm) without any problem, and she is not a large person.

ALL THE BEST AND HAPPY BIRTH DAY IN ADVANCE.

DONT FEEL NERVEOUS AND FOR THE BIRTHDAY ALSO . YOU WILL RECEIVE SPLEENECTOMY BENEFITS ALSO FOR THE LIFE TIME

Dear Mark,

I wish you a successful surgery and fast recovery! I hope you feel better after the removal of your gallbladder and spleen.
Please give us your feedback on how you feel after the surgery and how you cope with the new challenges of removed spleen.
It's really important for us (I believe) to have feedback from people that underwent spleen removal.

Best of luck!
Mart

Surgery was 3 days ago. Gallbladder was removed lapro, and spleen was open. In my bwlly it was over 25cm. After it was pulled out It was 18cm. The doctor took a picture of it. I do t know if I can post that or not. Just now 3 days after surgery, I am getting 2 pints of blood. I feel terrible, but doc says it was because my hemoglobin was so low. I am halfway through my transfusion. Will keep posted

That's a pretty big spleen. It's size did pose a danger to your life from accidental rupture, so removal was the best course. I think you will feel much better once your Hb is higher. Good luck with your recovery.

My first day home after surgery. My spleen was 1900 grams. Their was a vein running down the middle of the spleen that was the diameter of a thumb. I am sore. My platelets are holding at 420. 3 days after the splenectomy, my hemoglobin crashed to 6? I think. They transfused 3 units of blood. I remember nothing at all for 48 hours after. I feel ok now. I hate taking pain meds because they are making me feel terrible. Hydrocodone always makes me feel ill. Any alternatives? I do have a pic of the spleen if anyone wants to see it

My first day home after surgery. My spleen was 1900 grams. Their was a vein running down the middle of the spleen that was the diameter of a thumb. I am sore. My platelets are holding at 420. 3 days after the splenectomy, my hemoglobin crashed to 6? I think. They transfused 3 units of blood. I remember nothing at all for 48 hours after. I feel ok now. I hate taking pain meds because they are making me feel terrible. Hydrocodone always makes me feel ill. Any alternatives? I do have a pic of the spleen if anyone wants to see it

I'd want to see the spleen pic, just curious. 2 Kg, hmm, that's huge.

Hope you'll feel better, you'd feel glad in future for this courageous step of yours.

As for painkiller, try ibuprofen.

-P.