Dysautonomia (Autonomic Dysfunction) Community
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612876 tn?1355518095

Quick update

Sorry, accidentally erased what was already supposed to be a brief update because I need to lie down, so it's getting even briefer.  

1.  Lab goofed on orders for my genetic test (yes, for the second time).  Tuesday will have blood drawn and sent off to Mayo again, this time under supervision of the lab's manager.  Long wait and anxiety, round 3.

2.  Skin biopsy for small fiber peripheral neuropathy, after clearing up potential mixup with dysautonomia-safe local anesthetic, went smoothly.  That is until later that evening when I went through profuse bleeding, dealing with an on-call resident that I wish I could have reached through the phone to choke (so fun when they don't "get" dysauto and you're too busy having an emergency to walk them through it), having the circulation cut off to my foot and it turning blue, simultaneous cell phone issues with constantly dropped calls for no apparent reason just to add to the "excitement," etc.  Finally decided to just bypass the neuro department entirely (that had done the biopsy) and call my primary care office's on-call physician, where I got a sane response and instructions on how to properly re-dress the wound, stopping the bleeding and restoring circulation to my foot.  And also was told who to ask for and where to go (at the hospital) if that didn't work, rather than the former resident's instructions not to show my face at the hospital until I'd bled out at home for at least 12 hours (nice!) ... that is, all night long until no sooner than 7 AM the next day.  Presumably, until he was off his shift and it was someone else's problem.  

3.  Cell phone company agreed to replace the phone, but it's on backorder.  :-(

4.  After returning circulation to foot, realized the reason it hadn't been hurting after the anesthetic wore off was because I couldn't feel it because it had no bloodflow.  Bandage fell off second biopsy site on its own and out of the bottom of my pantleg when I stood up.  Raced to rebandage that so it would be at least semi-sterile and not get infested with germs.

That's just an overview of the way things have been going.  We've also had the dog throwing up, sudden home repairs needed, yadda, yadda, yadda.  I need to go hide under a rock until someone tells me it's safe to come out now.  

On the question side of things ... can anyone who has had the skin biopsy tell me how long these take to heal?  I have one on my thigh and one sort of by my ankle.  Depending on the results from these, they may go back and do my foot as well.  (They have steri-strips on them, if that affects healing time?)
13 Responses
Avatar universal
Wow, you just keep on going through "one more thing" huh? I am so sorry for you kiddo. I am praying. Keep holding on. I wish I had something to say that would just bring you jumping for joy, but I am afraid I dont--but I  care.
Avatar universal
Heiferly, I am sorry u are having such s hard time. Did they do a punch biopsy? If so it shouldn't do that? I know Marie had that biopsy done and hers healed fast. I am waiting to have that test. Maybe I will pass after hearing your experience.
875426 tn?1325532016
Sounds frustrating!  Leg biopsies tend to take longer to heal due to how far away from the heart ther wound site is.  I had a mole removed on upper leg, skin stitched, and the thing got infected if I recall right & it ulcerated.  I had a dr. who wanted the derm dr. who did the biopsy to see their handiwork- he was not pleased.
612876 tn?1355518095
Yeah, it was a punch biopsy.  The one on my thigh didn't bleed like AT ALL.  I changed the bandage and it looks *perfect*.  I've also had one in the past on, *ahem*, a very ... shall we say ... *sensitive* area ... because they needed to biopsy a mole I had down there to make absolutely sure it wasn't anything insidious (that's the last thing I need right?).  It turned out to be completely benign, and the punch biopsy itself really wasn't too bad, which surprised me considering that it was in a very delicate place.  

So I guess my point is that ordinarily, I don't think punch biopsies are really a big deal.  I mean, it wasn't something I was looking FORWARD to, but I wasn't expecting this mess either!  And considering I got two in the same day, done by the same person, using the same procedure, and one turned out just fine and the other went haywire ... I think it was likely just bad luck or a fluke or whatever.  So I hope you won't be discouraged from getting it yourself.  Actually, depending on the results of this one, if she suggests moving forward with the biopsy on my foot, I'm still going to do it even after this brouhaha.  

I am still waiting to hear back from their office today as to whether they want me to go ahead and change this bandage and wash it up today or give it another day before doing that.  Go figure, my doc went on vacation so someone is covering for her now.  

Note to self:  ask if doc has any impending vacations before confirming procedure dates.  Never schedule anything on a Friday, on a day when the doc will soon be leaving town for vacation, and preferably get stuff done early enough in the day that there's a chance if things go wrong it'll still be during office hours.  (A girl can dream, right?)

Well, if Marie's healed fast then I'm going to try to take a page out of her book and go for a speedy recovery!  :-D  If only I can get the results speedy too ...  Heh, I'm so funny ...  

I miss our weekly updates.  We need to start those back up again.  I like keeping tabs on everyone.  Anyone else miss those?  Or were people getting sick of them?
Avatar universal
Heiferly, If u don't hear back from Dr then I recommend leaving bandage in place another day to be safe. Hopefully they will call.
I definitely miss the weekly updates.:)
Avatar universal
I hope you heal quickly.  I didn't know that you had to do a skin biopsy for that type of neuropathy.  I learn something everytime from you Heiferly.  Take care and sending you good health.
612876 tn?1355518095
I did leave it alone for another day.  Too much drama yesterday ... aide ended up having to call the squad for me due to a bad migraine.  I didn't have to go into the hospital; between my aide and the paramedics they were able to do what I needed here.  But it was a rough night.  

My aide this morning juggled cotton balls, neosporin packets, Tegaderm, etc. while I fussed with washing up the two biopsy sites and changing the bandages today.  The one on my thigh looks great.  The steri-strips are a little loose from the one on my ankle, I think because there was so much bleeding but I did my best not to completely dislodge them while washing it up, and got a fresh bandage on it.  It buggered up the pain a bit having to mess with them, but I took something mild for the pain and that worked well enough.  All in all, I think the healing business will go well except for having to keep them dry for a week ... I'll be glad to get back to "normal" showering!  (Well, normal for me ... I dream someday of standing up in the shower again and not having someone else in the bathroom to assist and in case I faint, LOL!!)

I went to the hospital today and had my blood drawn for the genetic test.  Third time's a charm!  Everyone keep fingers crossed that this comes back negative!!  It will likely be several weeks (or over a month??) before I hear back on this one.  I'm guessing I'll have all the biopsy results first (she said two and four weeks for those).

Hugs to you gals!!  Thanks for being so supportive.
Avatar universal
Praying for your test to be negative.
Avatar universal
Sorry things have been so rough.  I know the feeling of wanting to crawl under a rock. Hang in there!  I know it's hard when there are lots of challenges at once, in addition to the usual ones.  But things will get better.  :)

What is the genetic test  that you are getting?

Take care,
Avatar universal
Well I just came back from Vandy and so far they were not much help yet, I am awaiting some lab results I expected it too have a large dysautonomia testing lab it was a closet the MD was good but did not have too much input into what is going on with me, but on that note I had a QSART too test for small fiber neuropathy why could you not have had that test? She reported it came back borderline normal but not in the range of neuropathy for pots whatever that means, I am awaiting my blood volume testing which was not bad but after I had it done and had to fly home the same day WOW I have been feeling awful I was doing much better then before I left, so I hope it was not a wasted trip. I hope all your results come back normal .
612876 tn?1355518095
I'm being tested for fabry disease.
612876 tn?1355518095
I have had a QSART. The QSART is not equivalent to the epidermal nerve fiber density skin biopsy.  (As a sidenote, QSART and TST are not equivalent either. All three of these tests yield different information.)

The ENFD skin biopsy may be done as a follow-up to a positive QSART, or to investigate clinical symptoms of small fiber peripheral neuropathy (which doesn't necessarily have anything to do with autonomic, per se).

Sorry to hear you were disappointed with your workup at Vandy. They do have the capability to do the full complement of autonomic tests there. As it goes anywhere, which tests are ordered for a specific patient is another matter entirely.  I hope you at least get useful results from the tests they did run!
612876 tn?1355518095
Ah, I found the links to the info on the biopsy I had.  Here are the two things they're looking at in my skin biopsy; this is from the website of the actual lab that's processing it.



I don't know about Vandy, but I know at Cleveland Clinic's autonomic clinic they do the skin biopsy as a follow-up to an abnormal QSART.  Mine was only slightly abnormal back when I had it (so they advised holding off on the biopsy at that time), but my symptoms related to sudomotor (autonomic nerve) dysfunction have gotten significantly worse since then so the presumption is that if/when we repeat the QSART at my next appointment, it will be more abnormal.  Right now the skin biopsy was warranted due to small fiber *sensory* neuropathy, rather than anything to do with my autonomic neuropathy (which kind of blindsided me).
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