Frustrating Biopsy Appt Today! Wish Anyone Here Knew About Pots!!!

[AllAboutPeace]

I know that most of us have had frustrating experiences with medical professionals, so I'm hoping that someone will have some advice. I did try to look through old posts, but I had a hard time finding the right keywords to search.

I had a biopsy today (for a breast lump). It was done by a radiologist and his radiology tech. I had been told that I shouldn't have aspirin for 5 days before the procedure, but other than that there was no preparation. All the radiologist had of my now quite thick hospital file, was a requisition (one flimsy piece of paper), which I'm assuming had no information about POTS whatsoever. So I explained to both of them that I have POTS and briefly explained (fluctuations in hr, bp, and low blood volume). I might as well have been talking about the weather...

They explained the procedure: local anaesthetic, a hole in my skin to put the extraction needle in, then a large needle to withdraw 3-4 samples of tissue. I asked if there was adrenaline in the local, to which they said no. When the doc made the cut in my skin, the blood started flowing out. At this point, he asked me if I was on any blood thinners...good timing for that question, right!?!?! {I hadn't realized that the large amounts of water would have a similar affect - lesson learned}.

Anyway, he tried to stop the flow of blood, then proceeded. As soon as he started digging around to find the lump, it started bleeding again. So, I'm laying there waiting patiently for him to get his samples while I can feel the blood now flowing down to my neck, down my side, and can see it all over his instruments. He took about 10 minutes to get the sample (maybe longer)! The lump kept slipping away from his needle. I told him that I can actually pinch the lump, so I could hold it for him, but he thought that wouldn't be a good idea. I again explained that it's not good for me to lose blood. There wasn't even a blood pressure cuff in sight. At that point he told me that I just shouldn't look at the blood...and gave me one of those patronizing smiles (you know the you're-just-anxious-you'll-be-fine kind). The sight of blood doesn't bother me one bit and I didn't flinch from what they told me would be very painful (and it was!). It is sooo frustrating and unfair when we are labelled that way.

Then he got one sample and said "ok, that should be fine". What??? I had been told they needed 3-4 samples of tissue (plus he found a second lump today that had been missed on previous ultrasound and mammogram). So I know as I'm laying there that this procedure is going to have me in bed for days, so I told him that I want him to be thorough. He did then take a second sample. I managed to get off the gurney and remain upright long enough to plunk into my wheelchair.

Is there a better way to educate the peripheral doctors that we have to see? I've tried to find a brief, yet comprehensive info sheet that I can print off and give to them. I found one from NINDs (I think) that is brief, but is missing alot of information. Has anyone found a way to explain POTS with some success? Any tricks of the trade?

[tinkerbella]

I always show new docs the DVD, "CHANGES" that came from here ~ I wish it was on youtube now. It would be great when I go to a new hospital, new doc and don't have it on me ~ SOMETIMES I don't get it back right away ~ Do we still sell them? Could it be uploaded to youtube?

Bellamia ~

[AllAboutPeace]

Thanks, BellaMia! I'll try to find that DVD. I find that just telling them about about isn't very productive. They tend to look at my like I'm saying "whah, whah, whah" (like what Charlie Brown hears when his teacher talks)...

[tinkerbella]

lol ~ I know just what you mean ~ It used to be on the home page of Dinet ~ doctor had to make a visit to my VNA AND educate them about me. I was very blessed and grateful. He is very special and one of the only ones in the area who know about POTS. He sends me into the city for fine tuning and for the mito disorder, as I'm in the burbs. Maybe I'll ask him to do a youtube series.

Bellamia ~

[janiedelite]

I talked with Rachel about the DVD's and we will be able to order more in the future. But right now there are still a lot of details to work out surrounding our change in leadership and getting the finances to order and mail more DVD's. So we can't order more DVD's yet. Sorry!

[peregrine]

I wonder if we can put together an infosheet about POTS/dysautonomia and if there's a medical professional we can run it by for san-checking? Or does such a thing exist and I've missed it? It might be nice to have just a pdf folks can print out and hand to their doctors. Obviously anyone can put together one of their own (and probably should, it's worth a shot), but if we have a more official-ish one I assume we'd need someone with an actual medical degree to take a quick look at it :^)

[janiedelite]

Here's DINET's dysautonomia brochure (it's on the home page): http://dinet.org/images/DINETservicesbrochure2.pdf

Here's Dr. Grubbs guide to POTS diagnosis and management: http://www.dynakids.org/Documents/pots_article2.pdf

Also, DYNAkids.org has lots of brochures. They're geared toward helping patients who are kids and teens, but still very informative.

[juliegee]

So sorry Peace That sounds awful & it's even worse to think that he may not have gotten enough tissue for a good biopsy after enduring what sounds like a pretty substantial plasma loss.

For my son, I have always E-mailed his ANS doc at Hopkins & gotten instructions that I passed on to his docs before surgeries, procedures, etc. IF the doc doesn't seem to take it seriously beforehand, we move on- really. It's so much easier to be assertive for my son; than for myself I know lots of Moms can relate to that one.

Dr. Rowe's instructions have always included extra IV fluids, i.e. several bags throughout. Mack's doc have usually opted for general anesthesia for even "minor-ish" procedures- like wisdom teeth extraction & nasal cauterization, etc.- as they say they have more control over his vitals and airway that way and he is ultimately safer.

Do you have a good ANS doc that is in charge of your treatment plan who could write instructions? Hope your biopsy was good news & you are feeling OK after the procedure.

Julie

[McBlonde]

Oh... Julie! Glad you posted that! I had forgotten. THAT is exactly what sent me in to the crash from ****. I had a ROOT CANAL, lol!! I wonder if an IV of saline AFTER the root canal would have kept the crash from happening or even just kept it from being as severe?

Edited February 28, 2012 by thankful
Removed Profanity

[tinkerbella]

I FOUND THIS on you tube today ~

http://www.youtube.com/watch?v=Fx688XLvA8k

part 1 CHANGES

part 2 is there also ...

This will make many of our lives so much easier !

Mast Cell has a wonderful video on here also.

[tinkerbella]

http://www.youtube.com/watch?v=bTM8RNzV6k4&feature=related

part 2 found on youtube

[AllAboutPeace]

Thank you all for the links and videos - I will definitely be making use of them as educational tools! I'm not confident that any of my doctors would actually take the time to invest in learning about it, but I will try. Some of the doctors come and go in such a rush that I feel like I need to use flashcards with keywords just to keep their focus.

My family physician would probably take the time, but I think he really feels like POTS is out of his realm. He has offered to give me any referral that I want and his is very supportive.

Julie, thanks! I have a few more days to wait for the results. I totally relate to your comment about advocating for your children. My son was a preemie and had a rough start to life - it felt so natural to advocate for him (and without second guessing).

I have an internist as my POTS doc. He diagnosed me, but has had no direct experience with it. None of the internists at my local hospital have had any experience with it. The cardiologist that I had been seeing passed my file over to him. The only neurologist in my area had a consult with me when I was hospitalized and after spending 10 minutes doing a brief exam,he declared that I wasn't having any neurological issues without even looking at my file or talking to my other docs. I will be doing a 4 hour drive to see an electrophysiologist, so I'm hoping she has some knowledge about POTS, or at least be able to educate me a little about the ECG rhythm changes I've had. I'm just thankful for all of the access and information that I can gather via the internet and this forum - I'd be so lost without it !