Strange symptoms - need answers!

StephN · 10-26-2007, 12:44 PM

Hello Everyone -
Once again I am "a puzzle" to my care team. More of a Medical Nightmare looking at it from my side. Let me know if any of you have ever heard of or seen anything like what I describe below. Thanks.

Last spring I posted about having been diagnosed with a clot along my catheter and needing to have anticoagulation therapy for that. Several answered about that and it seemed a good thing to do with reasonable success.

Now after the prescribed 6 months of taking these expensive Lovenox shots, I still have the symptoms I started with, just less severe. Now they are not even sure I need to stay on the shots as they may not be doing a thing for me.

Saw my port placement surgeon yesterday (the famous Dr. Hickman) and he was shocked at how puffy my face and neck still are and at the sight of the venous pattern on my lower chest and across my ribs. It really looks like a mild case of varicose veins spreading just below my breasts. Said he NEVER saw anything like that before and had me come across the hall for all his nurses to gather and take a look at me. They too were completely shocked to see how I looked.

Dr. H. will consult with some of his colleagues and try to come up with an explanation or another specialist to send me on to. Since the puffiness and venous pattern are on BOTH sides and fairly even, he is doubting the catheter is the problem. He is even suspecting an allergic reaction of some kind, but to last this many months, is also strange.

I could see the wheels going inside his brain as he stared at me (really more like staring past me at my problem). So, I have hope that somehow I can get to the bottom of it.

PinkGirl · 10-26-2007, 12:48 PM

StephN, Is there really a Dr. Hickman, or was that a joke?

StephN · 10-26-2007, 12:58 PM

My Dr. Hickman IS the venous access device specialist who was inventor of the "Hickman line." It has its uses for some patients, but he mostly does subcu port implants.

He is on the older side, but I would not trade his experience for a younger surgeon.

Lolly · 10-26-2007, 01:03 PM

Steph, I've had small variocose-like veins around the scar line of my left-side mastectomy, ever since my first recurrence in 2001. The recurrence was to the nodes, supraclavicular and neck, on that side, and also a small area of skin right over the clavicle. This little area of skin has also had a veinous look ever since.
My onc is always vigilant about checking these areas, looking closely and feeling for any possible lumps, whenever I have a clinical.

My "vein" problem may look entirely different than yours, so don't know if this is helpful, but at my initial recurrence a biopsy of the clavicle skin disturbance confirmed it was b.c., but was determined to be NOT inflammatory.

Hope this helps rather than scares. If it continues to be a concern, maybe a biopsy?

<3 Lolly

Sheila · 10-26-2007, 01:13 PM

Steph
I will ask my brother who works as a cardiac interventologist at several Kaiser hospitals and is very familiar with the Hickman Port as well as many others...he is always telling me what type of port to get if I need one....they are very fond of the ones in the forearm....but he has stated that the Hickman is state of the art....anyway, he deals with ports every day, I will check with him.

StephN · 10-26-2007, 01:44 PM

Thanks Sheila -
My port is a BARD make. It is not a Dual Lumin, the normal single. There are a few models and I am not sure which I have.

FYI - A Hickman line has the end left outside the chest and capped off.

PinkGirl · 10-26-2007, 01:49 PM

I had a Hickman line for my treatments and loved it. It changed the
whole "chemo" experience. It never occurred to me that some guy
named Hickman invented it......cool...

Barbara H. · 10-27-2007, 08:50 AM

Hi Steph,
I don't have any answers, but my thoughts are with you. I hope the experts can clear your situation.
Sending healing thoughts your way.
Barbara H.

fullofbeans · 10-27-2007, 02:23 PM

same here I cannot answer your questions but my kind wishes for a swift recovery are with you

kareneg · 10-28-2007, 03:44 PM

I am sorry but I have no answers but I wanted you to know that you are in my prayers and always in my thoughts. I hope they get to the bottem of this fast. All my best.

StephN · 10-28-2007, 04:09 PM

Thanks All for your nice thoughts and prayers. Appreciate them.

Wanted to clear up a couple of questions.

1. The venous pattern (like webbing) is NOT in my radiated area. It is fairly uniform on both sides of my midrif area. Now hove a few NEW veins showing on my back under left shoulder blade.

2. I do not wear tight bras or use underwires. Nothing else constricting.

3. No pulled muscles from exercise or overuse of that area - like I am doing hard pilates every day! (LOL)

This condition is so unusual that NONE of my several doctors have ever seen something like this. I feel like a mutant!

lilyecuadorian · 10-28-2007, 04:39 PM

Steph I' thinking about you ...so sorry that I cant help ...just with my prayers ..my mind ...

Alice · 10-28-2007, 06:56 PM

My first thought was that there may be some reaction to the materials used in the line ie: being allergic to latex. We are all used to people being allergic to latex but there are other things that less people are allergic to that we don't hear about as much and can be just as problematic to the people that they affect.
Alice

Sheila · 10-29-2007, 05:28 PM

Steph

Here is the advice from my brother and his Dr Collegues in southern California

Subclavian vein occlusion caused by the catheter....very common...get a upper extremity venogram by Interventional Radiology to confirm....Maybe vein angioplasty would open it but usually only for a little while

Hope this helps, Sorry it took until today when he was at work....

lilyecuadorian · 10-29-2007, 06:16 PM

OMG that is one great form of SUPPORT ...Sheila I hope so help too

StephN · 10-29-2007, 11:42 PM

Thanks, Sheila -
I did have the venogram in May which showed up the partial occlusion in the first place. With this info I was put on the anticoagulation therapy.

Maybe I need another one, but am still waiting for the concensus from my team at the cancer center.

Since I have the other symptoms not so common for a problem caused by the port catheter - this is the puzzle. Still giving myself the shots till told otherwise ...

Mary Jo · 10-30-2007, 08:48 AM

Just to say I'm thinking about you and hoping a conclusion is coming quickly.

Love and a hug I send,

Mary Jo

Julie2 · 10-30-2007, 06:16 PM

Hi Steph,

Hope your problem will be resolved soon. Sending good wishes and positive thougts on your way.

Julie

chrisy · 10-30-2007, 08:41 PM

Well, Steph, you are very special. Somebody's got to keep that crack medical team of yours on their toes - but I reckon you are probably tired of it being YOU. Hope you get some answers soon!

Much love
Chris

Roz · 10-31-2007, 02:20 AM

Hi Steph, I also have a BARD port. I have had it in for more than 2 and a half years now. I have it in the inside of my upper arm. I often find that I get a little bit of swelling below the elbow. I can't work it out at all. I have asked the chemo nurses and they don't seem too concerned and I don't have a fever. I am sorry that you have had these current problems, I hope they can resolve it all soon.
Regards, Roz