I posted a while ago that they were scheduling me for a CT with contrast due to a calcification that is not in the ureter. Well I am scheduled for Friday and results Tuesday night. Now that things are scheduled I am nervous as hell. Not for the test itself - I can handle that. Not that the contrast is fun to drink and I know the IV Contrasts hurts like hell when they take the picture but that is short lived misery. I just what answers as to this mystery stone and yet I fear them too. 2 years ago my mystery stone turned out to be a benign lymphoma that was correctable with surgery and 3 months disability but the form of lymphoma is not suppose to recur!!!! So what is it know??? :confused:

Frustrated and scared and needed to vent to someone other then hubby (who panics worse then I do - but that is a whole OTHER post. :rolleyes: )

Thanks Allie. Do you give vicious headaches after IVP. My head was killing me yesterday as if I was clubbed in the back of the head. Spent the whole PM asleep - which was GREAT by the way.

Thanks for the support!

Hang in there kiddo! My fingers are croosed that you get some answers soon!

I'm sorry your both having to go through so much :( I hope the lymphoma has not come back for you 2plus. and I hope you find out soon allie whats going on with you too.

2plus1,
I didn't know you yourself were having problems till I saw this post.
you answered one of my posts and I thanked you for your answer to me. you happen to be extremely helpful.

Now it's my turn to try and offer you a cyber hand and shoulder to lean on for support.
you can talk as much as you like. I'm here for you hon. I too know how it feels to not want to talk too much to our men because we're afraid we're bothering them. I'll bet you any money he doesnt' mind at all. he loves you.

it's good to share our problems with others in cyber land because it's like therapy. it is for me anyway.
my question to you is that you mentioned they found this calcification during testing for something else? and that you have other health issues going on? what exactly if I may ask is the other thing going on?
I too have other issues besides the hydrophrenosis.
I feel the older i"m getting the more health problems are rising. I"m 46 yrs old and feel as if I'm much much older at times.

you also mentioned you had a form of benign lymphoma? did they specifically say you have a lymphoma? or is it a lymphnode, not a lymphoma, that is benign? I've never heard of the term" benign lymphoma". all lymphomas are malignant and there are variant types, such as 30 different subtypes. they call it either a non- hodgkins lymphoma or it's hodgkins lymphoma.

I too had a huge lymphnode, but it was in my neck, back in the 80's. they did an excisional biopsy and it wound up being benign too. the name of mine was"Atypical follicular lymhpoid hyperplasia" which means "benign".

since then, it has returned , but not as large, and I feel ill on the days it enlarges. it comes and goes. I feel fluish the days it's enlarged and just plain yucky. my drs aren't concerned about it though.

sometims cat scans can have false readings. are you feeling any symtoms?
where is this calcification located? in the abdomen or your kidneys?

I'd love to exchange more words with you if you have the time. feel free to write more if you're up to it. don't feel you have to go thru this alone. I"m extremely intrested in finding out more detail of your problem and what the diagnosis is. good luck on your test on friday and my thoughts will be with you. good ones.
sincerely,
Linda

I just wanted to let you know that you are in my thoughts and prayers....

Terry

Linda,

It was in fact a benign LYMPHOMA. It was diagnosed as Acute Giant Benign Lymphoma aka Castleman's Disease. It was quite scary because they wanted to do a needle biopsy in which case it would have showed as + for lymphoma and I would have had to do chemo but my surgereon saw the size and realized lymphoma or not it had to come out. It took over 2 weeks to get the biopsy back but that was the diagnosis. They even sent it off to another hospital for another diagnosis. Castleman's is a rare disease where less then 200 people have ever been diagnosed. The only symptoms I had at the time was pain and a resting heart rate of 120. (Ironically BP was normal).

Anyway, the CT showed the calcification in the kidney but when you zoom in you see that it is not so I am not sure exactly where it is. I have had fever, decreased flow, nausea and pain under my rib cage which is why they thought stones. No other signs of infection. I also have a horseshoe kidney so the exact location of the calsification in harder to pinpoint. I passed a little fleck of something the other day and started to feel some relief.

Thanks for the support guys!

3 hours (and counting) to go. Will update tonight.

OK the results are in. There is NO Lymphoma. There is a 3 mm stone but the rest of the results are interesting, unique, confusing....

There is a horseshoe kidney - which I knew with a duplicating collection system which is prominent on the right side. The right side is collecting about 3 times that of the left. The problem is there is a UPJ AND the ureter is wrapped around my superior vena cava which makes surgery difficult and dangerous. The fusion line along the two kidneys shows blood supply and venal tissue so is not just a typical fibrous band found in many horseshoe kidneys. (And here's the key to my screenname) I also have 2 uteri so it appears from the new scan that the birth defect that caused the renal fusion was the lack of an arterial seperation during fetal development. This also increases the risk of a major bleed if surgery is done.

Next step renal scan with Lasik which the uro told me should hurt like hell if the pain I have been having is physiological (which the key question is - Does it hurt if you drink large quantities - I said yes.) The results of the renal scan will determine if they need to do surgery though at this point I would rather live with the pain. The risk for correction is too high.

If renal function is compromised - and only if - will they consider surgery but they will do at a MAJOR surgical center with a vascular surgeon on hand. Fortunately my local hospital (to which I am a frequent flyer at this point) is affiliated with Columbia Presbyterian in NYC and they would be willing to do the surgery - oh YAY! Glad I can entertain and satisfy the intellectual curiosity of some eager cutters. My doc would only assist - he admits he would not cut himself due to the complexity and uniqueness of my condition. Alas even if the renal scan is succesful they will continue long into my future and the possibility of surgery will always be there. Oh and have I mentioned that previous surgery (and scar tissue) rules out the chance of laproscopic repair.

Despite all this I feel relieved, I think. Either that or the reality of all this has not set in. I am just going to relax and see what the results of the scan are. Thank you ALL for being there tonight - I felt the cyber hands holding me in the chair.

I will keep you posted as to any future developments. Sorry for the long post but there was a lot to explain.

I'm so glad its not lymphoma again though, but wow you are one tough cookie to deal with that and not seem to be too freaked out. I really hope whatever is best for you medically is done. Take it easy!