Sunday, February 7, 2010

Post Muscle Biopsy and should still be working on that School work...

Hehehe... Oh well. I am slowly making progress on that school work I have due tomorrow morning at 8 am... My brain just doesn't want to process the hard stuff anymore. The sad thing is, its not hard, my brain just doesn't want to process anything right now... Could be the narcotics, of which I have only taken one today , but mixed with Keppra it really deals the brain some funny hands... I would love to have taken more doses because the pain is still out of this world, but I can't take the meds and take care of the kids too. It seems that on meds i am loopy, dont make much sense and extremely tired and groggy. That does not make a good combo for keeping Josh from blowing things up at 3 years old or to help his potty training either. Hahaha. I could hear the stories now... Why do you pee standing on your head Josh? (asks his wife 20 years from now)... Well, I'm not sure. I just remember my mom telling me that it would help.... (says Josh with a puzzled look on his face at 23 years old...) hahaha. Oh well. Maybe the affects on them wont be that extreme, but it is affecting my parenting none the less. I don't know how drug addicts care for their children. Oh, that's right, they don't...

Today the incision started bleeding again at the bottom. It was frank red blood, like a hematoma opened up and flooded the dressing. I changed the bandage out 3 times, saturated, before it slowed down. I guess that is a good enough reason to call the doctor tomorrow. Anyone else in this world believe it would be important to be able to reach a doctor on the weekend?? The incision does not appear to be open in any place. It is not red or draining green or grossness and I have not had any fever, so I don't think it is infected. The bruising all around it leads me to believe there was probably a hematoma (collection of blood) around the site where they took the muscle piece and that finally found its way out. I hope its done.

Another thing of concern is the pain in the back of my calf. It's the surgery leg, and there is an unusual pain in one pot on the back of my calf. It's a little warm, but no red or really hot spots. Most times nurses are taught to be suspicious of this sign as a potential blood clot in the calf. I am not on birth control (which would increase the risk of clotting) and the surgery was only and hour, plus I was up and about, not laying on my butt for days,so it seems unlikely that it would be a blood clot, however, it seemed unlikely that I had EDS, a mito disease and everything else I have been through too, so who knows. Some EDSers have a tendency to bleed and some to clot fast. So, I will mention it to them on Monday when I call, but am sure it will not be of great alarm to them. Maybe it is just because I have been walking different. We'll see.

If my incision starts bleeding again I am inclined to go to the ER just to make sure it's not a big problem like a bleed or deep infection. I hate to implicate anything, but infection the day of surgery (it started draining then and hasnt stopped) would not likely be a surface infection like those caused by home contaminants. Usually Deep infections come from nosocomial infections, meaning it is obtained while still in the hospital, and deep infections usually mean contamination during the surgery itself... So, I will not implicate or accuse anyone of anything, especially since it doesnt appear like an infection, but in fact it looks like frank bleeding. We'll see. I am rambling. Exhausted... Ok, back to school work... Need to finish it ASAP before I fall asleep..... =)


  1. Hi Trish,
    Daughter as you know has recently had a deep punch skin biopopsy done and her bleeding alarmed all but the Consultant doing it as she was prepared for massive bleeding - she had extra internal stitches & many steristrips externally plus pressure bandage for much longer than is usual the time to normal to stem the flow). She did have some bleeding after. I would say without the additional stuff we would have to have gone to A&E.
    I take oramorph for breakthrough pain as an add on to that which I take already. I understand totally though about being too zonked out. I take oramorph during the evening because of needing to participate in life. I did have good pain relief with buprenophrine (transtac) patches for some time but out of the blue these suddenly gave me massive migraines so unfortunately had to stop.

    I only have knowledge of Toprimirate (sp)/topomax/ which my son was prescribed initially for his epilepsy unfortunately it did NOT suit him at all, he lost the ability to speak with it and had no short term memory, it also caused a massive drop in appetite and as he was at the time a skinny teenager he could not afford to lose weight. Struggling for over six months he was changed to sodium valproate/epilim chrono and this does suit him much much better. Recently he has had to have his dose increased and for a few weeks he was very sleepy again but as with many AED's I believe the body gradually got used to the new dose and the side effects abated and efficacy is good. I don't know what opiod you are taking but its worth I think trying varieties/dose of pain relief for maximum effect etc and relief from side effects. I imagine that must be difficult with the Keppra.A friend takes it also and hates it. Our neurologist believes that its no good taking an AED if the side effects outweigh the efficay and advocates a change. I don't know what type of seizure's/episodes you experience so its difficult to comment. I have a little knowledge because of spouse and son's epilepsy the only time I have had a inkling of what its like to have epilepsy was when I had a reaction to a med a long time ago and I am afraid I cannot remember its name and suffered seizure like episodes which were put down to that but it took an awful long time for the medical profession to work out it was the medication I had been taking for some time.

    After my pain management course I really felt combining a multi-disciplinary approach to pain managment helped me manage my pain so much better. I really feel for you juggling the epilepsy meds and those for pain relief for the EDS. Even more reason why over here you would qualify for a good pain management course combinging pacing 'oh yes' and all that jazz!

    I really do go on I am sorry Trish!

  2. Me again - don't groan. It just shows bloggers can become pals as if we lived near I could pop in for a cup of tea and a natter!

    I just remembered On a fact I simply have to with a stress on have to let you know before I properly go!

    Regarding a previous post you made and 3D movies and not being able to see the 3D effect I read in the paper today the following -

    stunning effects in the hit film avatar can make you sick doctors are warning..... They believe some 3D scenes can trigger a condition known as vestibular conflict. Dr S. Levinne of Minnesota Uni explained - the body's need to know where it is in physical space can be severely exposed by virtual imagery. If messages to the brain are in conflict the eyes say you are moving, ears not the brain becomes confused..... There was a comment at the end that said that the Studio's are aware that the new effect is causing some problems but assure they will iron them out. (Due to copyright have changed some of the wording Trish but the meaning is still the same)

    So you reporting that you had none of the 3D effects is probably worth noting as you said at the timeand may indicate that something is it vestibular? is not working in quite the right way for you in not seeing the effects.

    I know in EDS we have poor propriopeception (skills)but not sure this extends to not seeing 3D in films anyhow I have never seen a film in 3D (how sad am I)and am going to have to now to report back my encounter or not!! Just can't sit that long.

    So I am left still wondering why you couldn't see the 3D effect at all.

    well I am finally off after really really rambling twice - its my evening meds kicking in! Thank you for putting up with my bla bla you can always delete if its a bit much, I won't mind. Don't have your email so can't contact you that way. Thank God I hear you say.

    Take care Trish

    As ever long comment, I don't subject this to everyone you know. Not sure why I do with your blog. will understand if you don't get through all the bla bla (x2!)Hope you don't wear yourself out with the deadline.

    That is absolutely definitely enough rambling from me!! ha ha
    Hoping the bioposy heals well.


  3. You're so funny!! I would love to talk outside the blog commenting world if you felt up to it. My email address is I am also on Facebook under that email or under Trish. I dont consider your talking rambling by the way. Underneath the med talking you have some very good and deep thoughts. My doctor talked to an opthamologist that described the 3-D problem as being a problem with polarization, but they were unsure if it were a problem with the EDS, chiari or this possibility of mitochondrial disease. Noones really checked into a vestibular dysfunction, and it is a good thought that I will bring up to my neurologist at the follow up. She has mentioned many times that giving me multiple diagnoses does not make as much sense as keeping all the symptoms under one roof like mito disease until that has been ruled out. SO, we'll see. So far Keppra has not had major side affects. I was on it by itself and did not have near the symptoms that I did on Dilantin or Topamax. I started on Topamax in March last year for migraines and had horrible side effects from it. I could not function. My primary care doc started me on Tramadol for the regular EDS pain, and it seems to be helping that a lot. I can tolerate times much better than before. The narcotics are purely for the biopsy. I have never been one interested in taking narcotics. I just get through the pain without it. I have seen what narc addictions can do to people, so I was turned off, plus really the only benefit I get from them is getting very sleepy, and sleeping off the pain. I would like to talk to you outside our "blogging world" if you feel like it. Let me know. Trish

  4. Sometimes treatments have side effects and if I recommend a muscle biopsy and enough rest too much drugs ... ask your doctor to tell you that you should take

  5. Just came upon this through googling muscle biopsy...amazing how there's not much info on the subject. How long was your recovery from the biopsy? I had mine done 4 days ago and still in a lot of pain and hobbling everywhere. Thanks. Kerrie