Hi,

Can anyone tell me if they have any experience of splenic irradiation or have heard of anyone having this.

I have CVID with an enlarged spleen which is causing me ITP and Neutropenia. My Immunologist referred me to an Oncologist to discuss whether irradiating my spleen would be a possible treatment to reduce the size of the spleen and therefore decrease its capacity to take out my white blood cells.

However, they are hesitant to do this as I am 35 years old (quite young in their eyes) as the treatment is Radiotherapy and therefore carries the risk of cancers (Lymphomas etc) in future years.

They have researched whether there is anyone in my position who has had this done but cannot find any documentated cases.

They suggested I ask the forum as some cases around the world may exist but may not have case studies done on them.

I hope someone out there can help!

Many thanks

Dom

Please share outcome. I have been diagnosed with enlarged spleen after last IVIG infusion. Thanks.

I too have an enlarged spleen. It was mild, at first. But now after 6 months of IVIG it is worse. I was diagnosed with Hypogammaglobulinemia. It seems strange to find this out at 31. I was not sick as a child. I am still doing the same test over and over, Tired of Drs. too

Hi,I too have an enlarged spleen,the doctors said it is the size of a football.Usually they remove it when it becomes enlarged.In my case they cant operate.I would like to hear about any info you may find on this,it would be greatly appreciated.

Hi,

I'm 32 years old I was diagnosed with CVID and also IGA dificiency in 2004 howevever the doctors at Mayo clinic are pretty certain I've had this since birth with all the health problems I've had. I owe a lot to the doctors at Mayo. When I was very young it could been days, weeks, or maybe a few months I needed a platlet transfusion and shortly after that they were told I had an enlarged spleen then with no treatment for whatever reason it went back to normal this was in 1974. During the fall of 1984 I needed a physical since I wanted to try out for wrestling, they discovered then my spleen was enlarged so I was referred to UW of Madison Childrens hospital in Wisconsin. A few months later I had a rash it was herpes syplex something also known as shingles. In 1987 miracuously all symptoms were gone no more enlarged spleen I was quite happy I could do the same things all the other kids were taking for granted like riding a bike or climbing a tree. Well about year later I noticed myself that my spleen was enlarged again had cat scan and I was right only this time it was larger than a football the Dr.s quickly decided it needed to be removed, when I went in for surgery I weighed 115# when I left the hospital I was 55# I lost alot of muscle from being in the hospital for almost 2 months most of the time bed ridden my friends didn't reconize me they said I looked like an Ethiopian not to offend any Ethiopians but you get the idea. Keep in mind with an enlarged spleen if you rupture it the toxins in the spleen can be deadly. After the surgery up until I was diagnosed with CVID and the IGA dificiency I would get chronic ear infections, always got colds that take forever to go away and the flu would drag on forever, and for the longest time myself and my parents always thought it was simply not having a spleen. In 2004 I went in to have emergency gall bladder surgery and then had complications I some how got an ecoli infection for awhile after some tests they thought I had Langerhans Cell Hystiocytosis then they thought it was something else when I finally got fed up with being a guniea pig and asked my family Dr. his honest opinion what he would in my shoes to find out whats wrong with me he referred me to Mayo clinic in Rochester Minnesota they were a better suited amazing the better technology they had it was siad to to me that alot of smaller hospitals are 2 to 3 years behind the Mayo clinic in technology. Now I've been receiving Octogam sometimes Gammaguard every 2 weeks and I'm happy to say big change in my health.
Sorry for such a long post this my first time on this site never really looked into any websites on this subject before I happened to be going through some old paper work from Mayo and came across a news letter from IDF and through that website stumbled upon this one.
I noticed the last post on the spleen subject was almost a year old so I hope whatever decision you and your Dr. came up with worked out in your favor.

Good luck,

Al

Ciao
I had a very enlarged (twice as normal) spleen after 1 year of IVIG treatment.
It 'ate' all my white blood cells, and my doctor though more safetly to remove it. In July I underwent slenectomy, and my white cells returned to normal.
I hope someone else can share his experience about this argument.

Kiss
Bea

My son, age 31, was just diagnosed with an enlarged spleen (6 times the normal size). He has been on IVIG for CVID the last 15 years, or there about. I too am curious about the pros and cons of spleen removal. My son's spleen as a tear in it. The doctors are hoping it will mend itself. Good luck to everyone.