Wednesday, December 21, 2011

Finished with the Zyvox!!

For a while I sincerely felt like this day would never come - I think this was definetly one of the worst medications but in a subtle way ive been on in a long, looonngg time. 5 weels ago I found out about the CNS infection and started the Zyvox - thankfully I am now finished with it as of last night-my last dose! This med has brought on such incredible fatigue in a way I cant even describe (not unlike that caused by beta blockers but different at the same time). When I had asked the Infectious disease docs about it the NP had said this was surprisingly a very common noted side effect in their patients on it although it isnt listed as a side effect in the literature. Atleast I knew I wasnt crazy!

Yesterday and today have been surprisingly tiring (in a different way I guess if thats at all possibl!) not only do I feel tired but I feel completely exhausted which is odd as the past 3 weeks (or is it 2 weeks only?) since surgery energy wise have been fairly decent other than the zyvox effect. I think the continuing annoying pinching/searing very present but intermitten feeling along the proximal portion of my shunt isnt helping I actually wonder if this isnt draining alot of energy as the past 2 days have definitetly been a little harder and a lot more often and occuring for longer periods of time. Ive also had a few symptoms re-occur but just beginning last night and today so maybe thats just a fluke and will again improve. - it sure would be damned nice if it did!!! Because of the vision issues ive taken to wearing my glasses for reading anything although the glasses annoy the h-e-double hockey sticks out of me because I despise the way they feel. I just cant make myself wear them all the time for this very reason.

Audiology testing yesterday was stable w/the mild hearing loss at sensorineural level (highest frequency equated with difficulty typicaly hearing in loud environments or differentiating conversation when more than 1 person is taliking in a crowded room. For me it just has been sensitivity to a lot of noises (air compressor, elevator doors sliding shut when they are slow closing, etc and being in crowded rooms. Not to big of a deal. The noise thing may even be more of a sensory thing but I guess that could go with hearing, who really knows, or atleast I dont off hand!

We're making slow - really slow progress on our collaborative effort (genzyme and myself) for the identifying un-met needs in adults with MPS I project which has been nice and although I think this is going to take us months still we have some really good ideas and a good group involved in this effort.
This is about all I know - not the most enlightening or entertaining update (are any of them really!?) I know.
Warm wishes for a Merry Christmas and Happy Holidays!


Thursday, December 15, 2011

Neurosurgery fup

I had fup appt this morning with neurosurgery and she removed all of the sutures, staples and dressings including the dissolvalble sutures (because she said she was impressed with how irritated my skin got even from these). The only thing left in was the dissolvable sutures in my head incision but the staples and dressing where removed there. In total 6 incisions are now free and I can wash my hair in total tomorrow which will be great as it has been incredibly itchy to both from the dressings and from bacitracin ointment they used over the sutures and under the staples/dressing. We talked about what could be causing the pinching at the R side of my reservoir/valve and she said it's possible it is either from drainage or from a disconnected piece from how they inserted the shunt (xrays where done the aftenoon after the surgery though) or that something ir irritated and/or possibly the ventricle collapsing when CSF is draining though that to would be odd (but not impossible) since we have the second valve in place. What I do know is ive not experienced this sensation before so it's a litte unusual.

She ordered a shunt series (xrays) and a add-in brain MRI which they got the radiology dept to do right away this afternoon to. I should know the results of xray series and the brain MRI in the next day or so. Otherwise if it doesnt show anything like a disconnected piece she to use her words 'doesnt want to torture me during the holidays' so we are hoping these symptoms improve or at the very least dont get worse as my headaches actually arent to bad - they defintiely arent perfect but they arent as bad as they have been sy before this 2nd valve was put in 2 surgeries ago (about 60-70% improved) so we're hoping the shunt just doesnt occlude and symptioms keep improving. I fup with her as long as nothing gets worse in a month.  On a good note the CSF culture from last weeks surgery also remains negative which means I should finish the linezolid (zyvox) next tues - I will be thrilled!! I am tired of being tired from it and taking a nap just about every day bc it makes me so tired!

Happy Holiday wishes,


Tuesday, December 13, 2011

1 week Post-Op

Incision at upper cest - shunt tracts down from front of forehead behind haieline to behind ear and then downward to where the 2nd valve sits under this dressing.

Reaction to the tegaderm used to cover eyes during surgery  "raccoon' look.

Lumbar incision - LP shunt removed.

It's no longer 'welcome to D6/4' but 'Welcome back' from the nurses.
 Lumbar incision a week later
 Stomach incisions from LP and VP shunt removal and replacement

Side incision from removal of LP shunt  reservoir and valve
 Shunt card for the 2ns valve. (paedi-gav)
Just  a quick note - I basically guessed and thankfully was right about what labs the Infectious Disease docs wanted since I hadnt received a lab order from the neurosurgery floor discharge team on fri. I called my PCP and asked them if they would be able to order the labs and they where fine with this. I'll probably see if I can do the other Lab at UW on thurs. Lisa, from my neurosurgeons office called today and she confirmed it was a CBC w/diff and also let me know that so far the CSF culture has come back negative (day 6) and that they would cont to watch the culture to make sure nothing grew back.  I see them thurs to get the stitches out of the various different incisions - in total I imagine there is around 20ish sutures and 2 of the incisions I think are dissolvable so it is the staples in my head and side + back incisions that will get removed + the small incision in my upper chest.

It was a completly exhausting and tiring weekend but we had alot of fun - sat we (sister, mom, sister-in-law and niece) went to Appleton and then on sun we baked pretty well all day. Needless once I did finally fall sleep sun night I slept well! Other than waking up pretty often having to go to the bathroom I did sleep and last night think I may have finally caught up some what. I will be thrilled when the linezolid (zyvox) is done - shoot I may throw a party, this med sure causes unending fatigue on top of all the other stuff!

Will update after tomorrow's Urology and thurs Neurosurgery appts.
Take care,


Friday, December 9, 2011

Post-op day 3 - Discharge, post 2

I just need to vent and this is the place I do it. So i got discharged as planned - I didnt hear from my neurosurgeon as she was in surgery so didnt get a chance to ask her what I wanted to (kind of makes it feel like there  are things un-finished when this happens but I get they are busy).  I guess when I have to ask the nurse every little question and for help on things that other nurses just automatically do (re-covering incisions, how to remove the Port access needle, meds, erc) and I am already overly tired from being unvcomfortable sleeping (pain is controlled just hard to find a good laying position) then all those otherwise little things really get to you. I didnt mind this nurse and she was nice it just felt like there was alot of things that werent done and we scrambled to do after I was already down in the Pharmacy-discharged. I guess as the patient I dont want to have to tell a nurse what needs to be done or ask for help on very little things. I already dislike asking people for help so topple that with my being exhausted and I just felt/feel unsettled.   I also know the more specialists you get invovled the more chaotic communication can get but in this case I felt like there was simply 0 communication between my surgery team and the Infectious disease team. Simple things like who was going to write the lab work order - each told me something different and then not providing their contact info even though im supposed to fax them lab results and/or if any issues with side effects of meds. We knew id need to be on the Zyvox (linezolid) for another 2 weeks so why would they wait until the day of discharge to try and get those prior auths??? If there is one thing that irritates the piss out of me this is surely it - I even asked on weds if this shouldnt be started on and then yesterday they told me it had been. (it wasnt). I dislike I think most of all how they have a NP on the floor who does the discharges - I just personlly think it would go sooooo, soooo much more smoothly if it where done by the patients own providers who've been in on all the communications and rounds and thus know what all is going on vs guessing in the end before discharge. The nthe NP never communicates and so you literally feel like even though you've dealt with this stuff before that she doesnt care and isnt going to listen albeit it would clearly make the process faster. I usually bring in 2 of my meds because of the brand they are -Dad had to run back up and get these thankfully he remembered as pharmacy and the nurses hadnt. It honestly was just one thing after another and to tired to think rationally. I especially hate that things are left in to the weekend and will have to be dealt with/figured out on mon - I always, always prefer to be discharged and things just run smoothly! COMMUNICATION!!!

I do still have the stapes and dressing in my head - my neurosurgeon had talked about removing this before I left (there are stitches underneath to) but I guess either the residents didnt think of it to come back or my dr had planned to do it but got busy. I know tomorrow i'll just deal with it and figure out how to make it coverable but it is much bigger this time than usual (she usually makes the residents cover it with a much smaller piece of teflex/staples) but said she had been closing another area when she realzied they had already put it in. This is life i guess. I just sincerely pray this is it for awhile - that the blurry vision improves and as does low back discomfort and headaches get back to a good place (they atrent so bad right now kind of up and down but hopefully improve more),  I get all the staples, dressings and stitches out next thues so will be happy about that and will ask my dr if there is anything I/we can do to manage the eye issues till they improve - I dont know that there is anything but was just what I had planned to ask her more about today. (we talked about it some the other day).

I k now I sound whiny and grumpy and I apologize - tomorrow will be better and I will be better for it.
What a week!


Revision 13 (VP shunt 4th) Post-op day 3

Should be getting released today, my goal was by sat so I could go with my Mom, sister and sister-in-law to Appleton.  Some oif the things that have to be done before I am released today include the PA (prior auth) for the Linezolid (zyvox), logistics of the lab work, and Infectious disease docs figuring out concrete plan of action which right now stands at Linezolid for 2 more weeks, Lab work 2-3 times a week here and they'll call if the CSF culture comes back positive which they expect if it's going to it wont until day 4 or 5 as the last 2 cultures havent shown up till days 3 and day 5 - a slow growing bug. Given I have the Port I wouldnt need to have a PICC line inserted but we're still hoping the labs come back negative.

This time has been so weird - every post-surgery it honestly feels like healing has went really different - this time I suppose because not only did we take out 2 shunts in 2 completely different locations (8 incisions) but then we put in a new VP shunt to boot. My lower back is pretty swollen yet although the incision is about 3/4 the size of my previous lumbar laminectomy/shunt revision in May using the same incision.

I think honestly I just feel tired and exhausted and worn out by all this - it's not that  I dont think it will get better or even that im worried what if this shunt doesnt work given the VP shunt removal showed us there was yet another occlusion in the process. It's more that im just tired from all the other things that go along with surgery and cardiac stuff has been a little nutty (increased-racing heart beat and skipped beats) and the usual re-adjusting to anesthesia getting out of my body and lack of sleep and head adjusting yet again (not low pressure just pressures in general always go through a 'process' period of ups and downs the first week especially. Honestly I think athough I like the nurses here on the floor and find them almost all very sweet (several have told me they specifically requested to have me on their case load when they find out I am coming in/or here which is always a near thing to know even if it's sucky having spent so much time on a hospital floor that the staff likes you and apparently not a pain as a patient.  I think im just tired of feeling good, not feeling good, surgery, healing, surgery, healing, feeling good, not feeling good and then feeling good again. I will be extremely excstatic (and I bet my neurosurgeon and her nurse will be to) when we have the shunt figured out and in a good place for a long while! That all said I am still very grateful to have my neurosurgeon and her team who want to help and are funny and just plain care despite all of our ups and downs over the past few months - the fact that they continually have some other ideas amazes me and I am grateful to them for that!

I will update again soon but atleast I am headed home today - very excited about this and more excited about the weekend. I know it's going to be hard the next few weeks trying to cover all these incisions for showering and then re-cover them afterwards when some are in some hard to reach areas but im thinking maybe I can go every couple days changing the dressings as long as I can keep them dry in the shower and just have my infusion nurse change them on mon and if im here for labs can always ask one of hte neurosurgery nurses to help or famiy - will figure it out - in the mean time my ever thinking mind is always try to figure out the best details just because.

Take care and thank you for following the ups and downs over the past few months,


Tuesday, December 6, 2011

Shunt surgery: VP shunt revision 3, Revision 13

12/7/11 - 12:10
 Infectious Disease docs stopped by again a bit ago; they'll watch the CSF culture for about 5-7 days and while we all expect/hope it comes back negative (infection under control) if not or if i begin to have negative side effects like bone marrow suppresion they will switch to a IV antibiotic and the antibiotic would be given for longer than the current planned 2 weeks (if negatve). Suprisingly they said that tiredness is a common reported side effect in their pts of zyvox but not reported in literature.

Surgery wenr pretty well with a few surprises but started about 7:30 and finished a little past 10:30. Dr.Bragg started with the LP shunt removal whch she said when she got in to the lumbar portion of this she fiound that the 2 shunt pieces which should have been 1 where disconnected completely in to 2 pices (should have been connected as it was tied off but this area hadnt been worked on since the 2nd shunt revision in august and was initially replaced during the laminoplasty in May. The august revision  was just re-anchoring the catheter as it had come lose in that area. This she said was likely why there was still a small amount of CSF build up but Dr. Bragg does not think this will have any impact on the lower back pain as that she feels is from not enough CSF draining through the shunt. She was happy that the spine tissue was scarred off though so she did not have to mess around in the area of the nerve roots or with the nerve roots as happened during May's surgery. There are 3 incisions from this shunt removal. The VP shunt apparently right before I went to sleep from anesthesia I asked Dr.Bragg if she could in fact move the 2nd valve on the VP shunt although I fell asleep then before she could ask questions or we could talk about it - normally I ask not to have the 'sleepy' IV med right before they take you in to surgery but this anesthesiologist gave it anyways which kind of ticked me off and after I explicilty but nciely explained why I didnt want it.  Anyways so she when they got to that point did move the valve up to my upper chsst and commented how in the other location upper stomach/lower chest the valve clearly moved around quite a bit and she could definitely see why that would have been annoying as itwould rub on the bra line and clothing to.. When she got to the proximal catheter (in ventricle) and 1st valve/reservoir she found that these where once again partially occluded and said that this is probably why my headaches had improved so much but then basically plateaud. If this happens again she is planning to move the proximal catheter to a ventricle with more fluid space that is farther from the choroid plexus (near the front of the head and a coral like material that often gets occluded in catheters placed in the front ventricle. Placing the catheter tip att the back of my head/brain she said would give more space and she could place the catheter further in to the ventricle. In total I have 6 incisions and actually feel far worse pain wise tonight than I did this morning or afternoon after surgery. Sleep has been elusive which is a bummer as I am incredibly tired!!! - update I did sleep on and off for about an hour here and there.

The infectious disease doc stopped by 2x's today and decided that they will cont the zyvox (linezolid) for 2 more weeks with 3 times weekly lab tests as once a person is on this med for more than 2 weeks it can begin to suppress the bone marrow and I have been on it now for 3 weeks already. My labs where low currenly but the docs said it wasnt worrisome at this point and just needed to be monitored closely. If the CSF culture from todays surgery would come back positive they said they'd re-eval the treatment approach but we are somewhat limited in meds as I am allergic to the other 2 oral meds that cross the BBB and help CNS infections. Our hop is though that since ive been on this med for 3 weeks now the infection will be well under control and removing the 2 shunts will prevent a recurrence. (this type of infections act much like scum on plumbing when it clogs - very difficult to get rrid of and would  re-occur if the shunts hadnt been removed which is why shunts are often removed and eplaced with CNS infections.

Im sure im forgetting something so will update soon - thanks for the prayers. Sorry for the typos this is all  really blurry so having a hard time re-checking the spelling. =/
Hoping for sleep,


Monday, December 5, 2011

5:30/7:30 arrival/surgery (shunts)

Surgery at 7:30 - arrival 5:30. (Dr.Bragg does this when I am her only adult pt that day so that she doesnt get caught up in Peds neurosurgery cases and so I dont  have to wait around for her with no definite time). This means leaving my house 4:15 my parents house 4:30.  My Mom is attending my Great Aunt's funeral so will just be my Dad and I.

Pre-op called today and then the Pharmacist called (severaltimes) - as well as an email from my neurosurgerns nurse confirming the antibiotics to be cont'd. I will still take the cipro (UTI) and zyvox (linezolid-CNS/shunt infection) tomorrow morning along with all other meds other than the lasix which is usually given later in the day in these cases. Im not entirely sure how long i'll be in-patient but hoping to be out by the weekend as my sister in law and niece are coming and spending the weekend + they, myself, my sister and my Mom are going shhopping sat and baking sun. I know i'll be beating up on myself after this big of surgeries but will do what I can handle and by that point as long as out of the hospital will be craving some normalcy regardless of how I feel!

My infusion nurse left my Port accessed after infusion today so that is in place for surgery tomorrow and the only thing will be if anesthesia needs to do an arterial line and/or place a 2nd bigger peripheral vein which they often do in addition to the Port access. Non the less one down is nice!

I'll update when I can either tues night or Weds.
Saying my own prayers for this to all go well and the CSF cultures to come back negative for any residual infection!


Friday, December 2, 2011

Communication: the ever elusive issue?

I should probably start if you'd like auto updates sign up as a follower (or for email updates) to the right of this post.

To continue on the theme of yesterday - communication. So I think I mentioned that my neurosurgeons nurse e-prescribed a continuation of the antibiotic my PCP prescribed as neurosurgery wanted it extended up till the morning of surgery but that my PCP felt it only needed to be for 3 days. (that is the recomendation for an uncomplicated UTI which this would fall under since although I do take a bladder med for retention issues I have had no issues of a UTI symptoms). So anyways I get a message back from my PCP today se still feels only 3 days is required but I should do what I feel is right... Ummm, ok????? I do really like this provider and I also really like my neurosurgeon and her nurse very much but since when is a patient supposed to be in the middle??? I know my PCP left a message for the nurse w/her antibiotic recomendation but it wasnt with my Nrsgns nurse and I dont think she ever actually talked to anyone on the phone beyond that VM.. Ive done all I can (and more) as a patient to smooth edges and presumably feelings in this matter but feel like no matter which way I take this I am stepping on toes - I dont think I have a choice but to take the extra 5 daysof antibiotic till tues mornings surgery given we need to know for certain there is no infection given we are already taking out the 2 shunts because of a different unrelated infection and im not sure if they will have to cath or not during surgery (foley) usually depends on length of surgery and if my neurosurgeon will have me lying flat for 24-28 hrs due to the spine portion of the LP shunt removal. I can understand neurosugeries concern given my history of UTIs over the past 5-6 month (due to the laminectomy and LP shunt revision-catheter placement in May and resulting nerve + bladder issues.) and desire to be extra cautious with this in preventing a infection post surgery to but also am more than a bit confused on why this has even turned in to the saga it has between these 2 providers. Who knows!?!

So readers, im curious how do you deal with providers disagreeing (in the MPS world is so frequent atleast in my experience) and how do you decide when providers give differing opinions? Im definitely struck time and time again by how often patients are (probably unintentionaly) put in the middle in not only diferring opinions but also making sure providers share info, communicate (or dont), and in trying to decide what to do.  

More soon,


Thursday, December 1, 2011


This week has been busy and yet times ive had a little more time to get things done or work on projects (genzyme) and spend time with my nephew and today he and my niece and sister this morning.

To highlight exactly how frustrating my care can be at times (im not sure if it's anyone's fault or if I am just to charitable) but monday I receied a messaged via the hosptial  electronic system from my NP that there was she suspected a bacterial infection brewing in my urine and so she was calling in a antibiotic to be taken on top of the zyvox (linaxolid) ive been taking for the past 2 1/2 weeks for the CNS/shunt infection. Tuesday morning my Nsg's NP called to make sure a antibiotic was started as they had gotten the pre-op form/info and also to ask me to let her know if the antibiotic wasnt prescribed up till surgery. I picked up the cipro tues afternoon and it was written for 3 days 2x's a day so I called back the nurse (Lisa) and let her know as I didnt have the NPs # directly on my cell. She talked to the NP and they asked if I could find out if my PCP-NP would re-prescribe the Cipro up till the following tues (6th) so I sent  a message back to my PCP-NP and she responded saying she had left  a message for neurosurgery NP and it was ok the way it was. Today I talked to Lisa again (I swea I talk to her more in the past 4 months than I have my own family) and she wanted it up till surgery - in any case she e-prescribed it for another 5 days 2x's a day. Wouldnt it be easier if providers just talked to each other??? Dont get me wrong I do really like both of these offices but good golly!! 'the gift of patience' is not always gift enough! ;0)

Symptoms such as the low back pain and vision continue without improvement which is really weird so i'll have to talk to Dr.Bragg about this before or after surgery but I do wonder if  maybe the low back pain might by some small chance improve once we take out the LP shunt (due to the shunt infections) 0 I guess we'll see..

Otherwise we are continuing to move along albeit slowly on the genzyme - adult project and this week I spent several hours identifying and contacting adults ranging from late 20's to late 40's and have heard back from one lady already who would like to participate. Myself and the mrketing + patient advocacy reps at genzyme are aiming for Jan to do our first part of this project w/about 5-6-7 other adults ive indetified and using pre-determined questions/information we've come up with. It has been interesting and I think will be useful not just to MPS I but across the spectrum of MPS's to other adults.

I'll update next week likely but in the mean time take care and be well,