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Had the lobectomy.... FINALLY!

Jun 24, 2009 - 0 comments








After more than 2 years of fighting surgery, I finally decided it was a battle I just really didn't want to deal with anymore and had Herbie (3.9cm nodule in my left lobe) taken out yesterday.  Overall, feeling pretty good.  Tired, hurts to swallow, still a tad funky from the anesthesia, but otherwise ok.  Going to see if I can go without pain pills today.

I'm very pleased they only took out the left lobe.  There was some concern about the nodule being cancerous based on past FNAs, size, etc.  Doesn't mean I'm out of the woods yet, tho.  Further analysis of the nodule is pending and I could still have to to back in and have the other half of my thyroid taken out next week.  Crossing fingers, knocking wood, and all that good stuff.

Another reason I'm pleased is because the surgeon did a very small incision.  It's about 1-1/2" long.  That's it!  I can already turn my head both ways, albeit carefully.  

I'm really looking forward to benign pathology results, getting the follow-up visit out of the way, and getting on with other things in my life.

Updatey stuff

Dec 31, 2008 - 0 comments









brain lesions

Hadn't realized it's been so long since I visited this site.  Anyhoo, here's what's been going on....

Got the thyroid u/s results back.  Herbie's still there, but "stable", so that's a good thing.  Leveling out at a comfy 3.7cm.  Still need to see a surgeon, but that's kinda down on the list for now.  Have more immediate concerns.

And those would be the continuation of the neuro stuff.  Seizures are happening during the daytime now.  Not grand mal, but simple partials and (I think) sometimes complex partials.  Also have right-sided weakness which has been going on for 2 months.  Loss of some fine motor skill function in my right hand as well.  Fun stuff, huh?

My current neuro is an idiot or at least does a very good impression of one.  I called him when the right-sided weakness started and he said it was nothing to worry about.  I called him when my seizures changed and he said since I didn't lose bladder control or bite up the inside of my mouth they weren't seizures.  Apparently, he's never heard of simple partial seizures.  He also said my sleep study was "normal".  I got my hands on a copy and it sure as he** ain't normal!  Less than 1% delta sleep ain't normal!  The average is about 20% a night.

I tried the Provigil he rx'd.  Was only on it for a few weeks.  It didn't do diddly.  Maybe the dosage was too low at 100mg.  It also triggered microtremors in my jaw and right arm, the same places that tremor when I get seizures.  Coffee doesn't do that, so it's back to the java.  Yay coffee!

I have an appt with an epileptologist on the 15th and an appt with a brand new shiny neuro on the 29th of next month.  This'll be interesting.  I'm hoping one of them will order a thin-slice MRI.  Very curious to see if the lesion in the left lobe of my brain has changed at all.  The last MRI was done before the seizures started and the slices were so thick they'd have been good for making french toast.  Mmmmmmm...... french toast.  *Drool*  But I digress.......

I've been off the lyme meds for a little more than 2 months now.  I'm feeling considerably better these days.  Still somewhat tired, but the bone-crushing fatigue is gone.  And I don't feel 'sick' anymore.  Most of my physical symptoms are completely gone.  The meds were doing a serious number on the ol' bod.

Feeling sort of like the other shoe is going to drop any day now.  I'm really afraid of a relapse, provided it was lyme in the first place.  Then again, since my neuro symptoms continued to progress while on meds and nothing got better, I'm wondering if it wasn't lyme at all.

Will post again once I see the epi.

New/old developments

Oct 31, 2008 - 0 comments

Hrm.  Last time I posted was shortly after getting the picc line out.  It's been kind of hectic since then.  So here's the update...

Got a polysomnogram (sleep study) and MSLT (multiple sleep latency test) done back in september.  Just got the results back this week.  Even though I had several wake-n-shake events during the study, they weren't detected.  Btw, wake-n-shakes consist of waking up, part of my body going into tremors for a few seconds, and then fall back to sleep again.  This can happen only once a night or as often as 6-7 times a night.  The MSLT came back as showing moderate excessive daytlme somnulence (fell asleep during all four nap periods in under 7 minutes - that's not normal, apparently).  No narcolepsy or apnea tho, so that's a good thing.  The neuro wants me to start Provigil to help with the EDS.  If it helps with the wake-n-shakes, great!  If it doesn't help, he's going to refer me to a sleep specialist.

Had another thyroid ultrasound done a few weeks ago.  Haven't heard the results yet.  Of course, the massive swelling that'd been bothering me was gone the morning of the ultrasound.  Figures.  Need to get my hands on a copy of the ultrasound.

Absolutely no changes on the latest and greatest lyme&co protocol.  Just as well.  We ran out of money.  Yup, can't afford to see the lyme doc anymore (out of network).  So I'm kind of hanging out in limbo here.  Decided to take a break from all lyme&co meds in order to see what my baseline is really like.    Since I haven't really been sure of the diagnosis anyway, have an appt with a shiny new neuro in January for a full differential.  Maybe she'll be able to figure this all out.  She was recommended by my current neuro because of her extremely thorough differentials.

The lyme doc had wanted me to start on bicillin shots, but since it was thought I'm allergic to penicillin, that might not be such a great idea.  So I went to an allergist to get tested.  Turns out I'm not allergic after all.  Very slight reaction, but nothing a chaser of benedryl won't take care of.  Nice to know.  Of course, it really doesn't make much difference since I'm won't be doing the shots because we can't afford the lyme doc and I won't self-medicate.

Interesting note:  very little change one way or the other since stopping the lyme meds.  It's been 2 weeks now.  Still keep waiting for the other shoe to drop, but nuthin' so far.

I'm sure there's more I'm forgetting.  Oh well.

New protocol - New concerns

Aug 28, 2008 - 0 comments



















pericardial effusion


sleep study



Now that I'm off the IV Rocephin and the picc is out, the doc wants to start me on a protocol from hell.  If it kills the bugs, great.  As long as it doesn't kill me in the process.

I'm starting the new protocol this week. This'll be the sixth one in as many months. Kinda worried about it. Sounds heavy, but I've known others who've done something similar with little, if any, problems.

I've been on zith and plaquenil and they're keeping me on those. Dropping the malarone. Instead, they've got me starting up on mepron for the babs, valtrex for the ebv and hhv-6, and rifampin for the bart. They also want me to get an allergy test to see if I really am allergic to penicillin. If not, then they also want me to start on IM bicillin shots. Ugh and ow. Somewhere in there they said they're also treating me for mycoplasma and c.pneumoniae, but I'm not sure which meds are for those (will be looking that up today).

I'm aware of the reduction in efficacy of malarone when taken with rifampin. Will be taking them several hours apart, since rifampin has a half-life of 3 hours (I think - another thing to check out today).

Not looking forward to swallowing yellow tempra paint (mepron).

Been mulling over everything since the PA and I talked yesterday morning.  I really feel like they're dropping the ball regarding my case.  Once again, I had to get her attention so I could make my points and talk about new symptoms and ongoing concerns.

She didn't know the picc was being pulled, let alone it had been.  She hadn't even glanced at the cardio tests I'd faxed a month ago.  You'd think if she'd know she was going to have a phone consult with me, she'd at least bother going over my file.

Let's not even get into the front office and how they had the night answering message on for more than a 1/2 hour after the office had been opened.  They finally turned on the daytime phones about 10 minutes after I sent them a fax letting them know the problem.  Maybe they didnt' wonder or care why they weren't getting any calls that morning.

She wants me to have another EKG and echocardiogram done, mostly to humor me, but partly because there was a pericardial effusion shown on the last echo and that concerns her.  She's taking the hospital cardio's word that everything else was normal.  I don't.  I'm thinking about seeing a good cardio on my own, if only to hear there's nothing to worry about.  This daily chest pain (plus light headed, short of breath, pressure in my shoulder and throat, etc.) is getting on my nerves.

Oh yeah.  Got my hormonal and ferritin results back.  Looks like I'm really and for truly in perimenopause.  Ferritin's down.  She said it was "normal".  If she'd bothered to look at my file, she'd have seen it was down over 20 points from the last time it was tested.  My ferritin's currently at 24.  That's not normal.  Ok, it's at the very low end of the normal range, but is not high enough to be non-symptomatic.  No wonder I've been losing hair again.  The optimal level for ferritin should be somewhere between 70-90.  You'd think she'd know that.

The more I think about it, the better this doc down here looks.  He's not an ILADS doc, but at this point I'm not caring.  Turns out, he's a holistic doc who treats with both antibiotics and alternative methods.  I'm ok with that, as long as he's good.  Wouldn't hurt to check him out anyway.

In other news, the insomnia is back in full force.  Been waking up anywhere between 3am and 4am, whether I need to or not.  I'm noticing some of the neuo effects from the sleep dep already.  The tremor in my right hand has become more frequent and stronger.  Brain just ain't there.  I'm looking forward to the sleep study.  Will be happening in 2 weeks (Sept 11-12).  Maybe that'll finally give me some answers.

Need to get copies of the EEG, the last echo they did while I was in the hospital, and copies of all the recent blood testing.  Also need to get a bigger binder for holding test results.  This one is full.