Niece, Neurosurgery, Pre-op

So there are a few things to write about which i'll try to get to this all tonight vs coming back in a different post - my neice is here til weds after picking her up (she lives about an hour from where I do) earlier today so I am trying to get to bed a little earlier tonight. The CT scan took place on thurs at UW after much going back and forth between my insur. and the hospital radiology dept. (which according to my case manager the prior auth wasnt that difficult it seems instead that something kept getting mixed up.)  Once this was approved the scan which as most know was relatively quick - the barium part which is what highlights the small colon, intestine, etc. not so much. I probably wont know that result until early next week which will also be when I know if the surgery stays scheduled for the 9th or if we need the general surgeon involved. The plan if the general surgeon does have to be involved would be for my neurosurgeon to revise the shunt from the front-peritoneal incision and work her way back testing each component. This technically is more difficult in LP shunts so my neurosurgeon is hoping she will be able to enter from the lumbar incision and test the shunt tubing back to side, etc ruling in or out each portion.

Today after picking my niece up in Port Washington we headed down to milw (wauwatosa) to my Internal med. drs office for the pre-op physical which was at 3. (it has been an insanely busy week of driving and to boot after I got back from madison yesterday I detoured to my parents to have my dad double check my breaks as they sounded terrible - he is getting the parts for those to be replaced.)  So anyways the pre-op which was with my Internal Med drs Nurse Practicioner whom also is very familiar with my care and providers and also very nice. She asked some questions about this surgery and did we think it was really the shunt causing the headaches given the need for another revision to which I explained the failure rate of shunts in the first 6 months to 1 year is abysmally low (something like 40-60%) and how with Dr.Bragg drawing off the fluid she did last week it was like a light switch just that easy to have no headaches again. She asked how I knew the surgery had worked in the first place and I explained how multiple of my drs both ones who see me frequently due to the way it is set upand one or two who see me only on occassion commented just how much they could tell a difference and not in like physical appearance but more in my eyes and how I just appeared to them much more relaxed overall, appeared as if I was less tired and how my eyes especially just looked so much more alert and like I wasnt guarded because of these headaches. How much of the autonomic stuff improved, the breathing issues though cardiac related also was improved and how when the headaches began to come back again at first I literally would reach up as if to remove a tight headband not realizing it was the headaches and that I wasnt wearing a headband and the H/A's only worsened from there over the past week and a 1/2.  Towards the end of the appt she commented that she thought it might be a good idea to set up regular appts with either my internal med dr or her and that she was going to talk to  my dr (they work together on pts or atleast my care) about having me see one of them every 6 weeks because so much is and has been going on and so they are in the loop and can help coord where needed. She also commented and I couldnt agree more that we both hope my neurosurgeons nurse never leaves that office bc we both really think she is amazing at dealing with all of my outside providers and coord everything when it comes to these surgeries. (and seriously she is one of the best nurses ive dealt with and extraordinarily kind to boot which is always a nice trait to have in the providers you work with! While my neuro-endocrine dr is aware of this next shunt revision my NP was going to double make sure all the needed orders for the pre and post surgery solu-cortef where in place.

Lastly the UW Urology dept called today about calling in an antibiotic to take prior to thurs urodynamic testing due to the self-cathing thankfully this will just be 2 days prior and I will also stop the oxybutynin 24 hrs before.

I'll update again when there is something to update on!
Tomorrow not only will my niece (11y/old) be here but my 9y old and 5 y old nephews will as well so it ought to be a 3 ring circus at auntie erica's apt! :) The neighbors will get their due noise payback perhaps! (joking of course)

Erica
ps I apologize for any sp or grammar errors I didnt go back and sp check this!

CT scan, General Surgeon, Neurosurgeon

So I get people, providers, frinds, family often who will ask "how are you feeling' or "how are you doing" and the honest answer would probably be it depends on the time of the day because right now it really does depend very much on the time of day for how I am feeling. But in all reality in the broader scheme of this how do you answer this question? Sure you could be honest and be negative or you could just answer your fine and let it be that. I am beginning to think that a good answer is for family, for providers, for anyone who knows me atleast some and who really wants atleast somewhat of a gauge that my answer should be:  I am still good bc take away the physical stuff I am good actually bc there's plenty to be happy about regardless of health! Because I am still surrounded by the best little angels (okay maybe not angels but devilishly naughty and funny forgot to grab their halo's in disguish angels!) who make me laugh and crack me up and keep me on my toes and even make me frustrated sometimes so I know ive got plenty of reasons there alone to be happy! Nothing ever beats the smiles, hugs, phone calls and  "I love you auntie erica's"!!! Definitely there are those moments when MPS and it's associated problems such as these headache kick my rear and I am tired and would like to exchange my body for a new upgraded less rusty model but I dont think i'd ever actually want to switch my life frustrations and all, bumps, bruises, occassional tears and all around ups and downs included because im not sure I would be who I am good or bad without all these experiences.

I got a call today from my Neurosurgeons office scheduler regarding doing a CT scan an having this done as soon as possible as Dr.Bragg is concerned from what her nurse told me that she may have to work with a General Surgeon although im not sure what exactly Dr.Bragg is concerned about. I know when I saw her last week she mentioned that one of the possible reasons for the shunt malfunction could be that the shunt peritoneal tubing could be against the intestine. While talking to her nurse I was working out some details regarding this CT and questions so never did ask for the actual details - it's actually amazing and a little embarassing to admit how often I forget the logical questions like what is the actual reason for someone else being involved! If the CT turns out to be fine then Dr.Bragg will proceed on her own but if she finds whatever she is looking for we may have to push back the surgery in order for her to be able to schedule the surgery along with the one specific General Sugeon she wants. If there is anything I could ask it is that my readers please pray whatever the outcome of this CT that the surgery still happen at the latest on the 9th because these headaches have been aweful and come on like nothing I can compare to - with the previous shunt issues the problems would be gradual and while very bad where atleast intermittent but these occur all throughout the day and I have very little periods of time without the headaches. Thankfully this weekend turned out to still be pretty nice - alot of time in the pool and very enjoyable with neices and nephews and family I just was very tired and the periods that the headaches where the worst where definitely the worst with feelnig down right exhausted. Like I said above I still have a good life and I am lucky enough to have a neurosurgeon now who wants to help and her team who are very good are very nice to work with - her nurse is second to none as far as helpful! Right now alot of other MPS health issues sit on the back burner including the hip issues for which I talked to the MPS-Ortho at Mn over the weekend (email) and he was extremely nice and understanding. Thankfully most of this is stuff that while uncomfortable can be pushed aside for now and can wait. The CT scan is set for tomorrow at 3:00 after I finally convinced the radiology folks tha no my  primary insurance does not in fact require a prior authorization for a CT scan (would have required a 5 day wait) and that yes, I did have my primary insurances policy certificate sitting right in front of me on my computer! Thank to my insur. Case Manager for having sent the new benefit year policy certificate just a couple weeks ago! This CT scan requires no food or drink 4-6 hours before hand (ooh joy!)  which is always interesting with the blood sugar spikes and lows and subsequent extreme ftigue but I will manage and have a snack along for right after,

I saw my P-MD this morning and she was able to help me sort out the urology - bladder issues and immediately called my neurogenic bladder specialist who I will see in august and talked to him about starting  a medication to manage the bladder urinary retention atlest up till 24 hrs or so before the testing. She told me if she didnt hear anything back while she wasnt totally positive what was best to try she would start something but by this afternoon the nurse from urology called and said my dr there had agreed and they called in a med for 3x's  a day (an anti-cholinergic) called oxybutynin which works by essentially drying up fluid in the body. Given I already take lasix I did email my Cardiologist to double check this was ok and will start once he gives the ok. A secondary effects of this med (which is what Dr.Bragg initially told me urology told her they would reccomend starting back in may if my post-back/shunt surgery nerve injury problems hadnt resolved by 2 weeks out. )  is that it causes dry mouth (bad for teeth then) and decreased sweating of which I have really abnormal sweating patterns already. P-MD said if side effects where to bad to stop and let her know.

I will update again when there is something more to update on  - in the process of working out which day my older neice will come and stay this coming weekend - i'll pick her up either fri or sat. though fri is a little tricky since I also have to go to milw for pre-op and Lis is in Port Washington area about an hour from me and an hour from milw. I think other than our family day at bay beach will be low key week with her here, swimming, games and outside with nephews due to the headaches and movies at night. She doesnt mind going to my weekly infusions and next week is the nurse who usually brings different games so will be fun to.

Take care,

Erica

Neurosurgeon article

The kind of doctor we all wish we had and I somehow am lucky enough to be able to say I do have now. Any sort of provider who would put herself in her patients shoes in a small way to think up an idea such as sharing her wedding day with her patients clearly is a gold note in a sometimes bronze filled chest of choices. While I dont know this doctor all that well simply because ive only been seeing her as my neurosurgeon since the beginning of may and had my first surgery with her the end of may for the shunt revision and laminectomy it was easy to tell right off that she was committed to her job, committed to helping her patients get answers and feel better and okay with working together with other providers when needed. In other words it clearly isnt about her but about her sharing what she knows. Just a nice story in a often tumultous world we live in filled with sad and mind boggling bad news.

http://host.madison.com/wsj/lifestyles/article_751cd416-af01-11e0-89c3-001cc4c03286.html

Hope Elliott, looking every bit the composed 5-year-old, barely left the bride's side Saturday. Her hand gripped a bit of the white lace train as Dr. Taryn Bragg visited with guests at the reception.
Hope was, after all, one of Bragg's first patients at American Family Children's Hospital last August, and she is one of the happy reasons why the pediatric neurosurgeon's wedding to attorney Josh Bowland took place at the hospital on the steamy afternoon of July 9.
At the reception near the tiny hospital chapel where the vows were spoken, the couple greeted small patients, some hitched to monitors, others recovered. The kids got cupcakes, the punch was non-alcoholic, and Bragg gave out goody bags. Next on the schedule: visiting Bragg's patients in their rooms who were unable to come downstairs.
Hope, who will attend kindergarten in McFarland this fall, declared Bragg looked "cute." The bride glowed.
"They are like my own kids," Bragg said. "My goal is to make kids happy and healthy and to help them live the lives they were meant to live. This is exactly what I wanted. They are a part of my life, and they are a part of my happiness. That's what today was all about."
Bragg was doing an additional year of training in pediatric neurosurgery in Salt Lake City when she turned to an online dating service. Bowland's subscription to eHarmony had about run out, and he'd pretty much forgotten about it, said his mother, Stephanie Bowland of Woodland Hills, Calif.
Bragg spotted Bowland's photo online, they arranged for coffee and have been together ever since, she said. Bragg and Bowland have the same birthday - Aug. 16, 1974. "We feel like we are mirror images of each other," Bragg said.
Bowland was a well-known defense attorney in Salt Lake City. About a year ago, he moved with Bragg to her new job in Madison and started checking out the Dane County courthouse. One day, Bowland talked to Dane County Judge William Hanrahan, who, learning of Bowland's plan to marry Bragg, offered himself as officiant.
So it was that Bragg, Bowland, Hanrahan and an overflow crowd found themselves in the hospital's tiny chapel at the first wedding held at the children's hospital. In lieu of gifts, the couple asked guests to make donations to the children's hospital.
"We really wanted to give back to my patients," said Bragg, who treats brain tumors, congenital malformations, cerebral palsy and hydrocephalus, among other ailments. "They teach me so much more than what you can get out of a textbook. Kids want to get better. They are very motivated. They don't have same negativity that adult patients do."
Take 4-year-old Kaylin Hoernek-Ruff. Bragg operated on the red-haired little girl about nine days before the wedding for a shunt revision. "She was in the ICU for three or four days," said her mother, Kathy. "Now she's attending her surgeon's wedding."
Kaylin's father, David Ruff, was moved. "This is just a tremendous, wonderful thing to do," he said. "To have this (wedding) to benefit the children that she works with is beyond kind. It's unheard of. I was so touched by it."
And don't forget Hope, whose future would likely have included a wheelchair had not Bragg and her colleagues operated.
Born 31/2 months early, Hope weighed 1 pound, 13 ounces at birth. Last year, doctors found a cyst on her spinal cord, among other problems — and the youngster was in the hospital for three weeks.
Bragg grinned at Hope as the reception wore on. "Last August, we operated on her twice to clear a bad infection, and she was a real trooper," the doctor said. "She went through a lot, and it was hard."
Hope's mother hasn't forgotten.
"Dr. Bragg just really made us feel that things were going to be OK - and there were times when we didn't know that things were going to be OK," said Lynne Elliott.
Elliott said her daughter was particularly eager to see the wedding kiss.
"It was long day today waiting for 4 o'clock to come around."

Copyright 2011 madison.com. All rights reserved. This material may not be published, broadcast, rewritten or redistributed

Ive been meaning to add this at the end of blogs but if you'd like automatic updates about this blog and blog updates you can 'follow' rarelydefined.blogspot.com by clicking on the 'follow' link to the right of these updates and entering your contact information either as 'anonymous' or through gmail or other id's.

Erica

Neurosurgery and shunts

I really did have the intentions of editing and updating the rest of my last blog post - has been a pretty busy week and so many different projects many actually that require just intermittent input in (a joint APF and Advanced Pain Mngmt Run/Walk. Proclammation APF statement release w/APM, responding to a potential new APFAN volunteer advocate to interview her per my regional managers request, etc) and others that are a little bigger (Peds meeting planning, etc) but also done over time but non the less time consuming! My to-do list has increased for monday (infusions are every monday so I take this to schedule/cancel/set-up those appts that do not need to be taken care of immediately. I also use this to work on anythng insurance related that has to be done as well as generally if any minor cmmunication needs to happen with any particular provider or providers office i'll also add to my 'to-do' and make it my best intentions to delete off as many things as I can every monday. Of course there are so many appt changes and insurance (primarily phamacy benefit more so than medical benefit) issues to deal with particularly when adding new medications or making changes else-where in care that cant wait for monday so everyday ends up being you have to deal with some problem, concern, issue or delay atleast w one benefit or another (I feel blessed to have the 3 insurances I do and wouldnt ever complain but it gets pretty complicated and keeping the benefits coordinated and paperwork sorted is interesting to say the least and often for instance even at the pharmacy where I know the staff well I have to help them sort out which of the benefits is 1st and can be usef for what. Also when something needs to go through my insurance case manager or I just need to ask for her help to clarify something or if she calls me about something these almost always end up being 30-45min+ calls that I seem to do a really good job of missing alot and so then I have to call her back in between whatever I am currently in the middle of to. (not that I mind I just often think people probably wonder why I even bother to carry a cell bc I seem to miss more calls than I answer! - This week for instance I played phone tag no less than 3 times back and forth (so 6 total calls for each the nurse and I) w/my urology drs triage nurse and the same with my Pain mngmt drs secretary the latter being regarding a medication Prior Auth. )  Then because the Urology office PA didnt want to do anythiing till after my urodynamic testing in 1 1/2 weeks I called my PCP's office who I had also played phone tag w several times (purely my fault due to being in meetings and appts) and set up appt with my Primary internal med dr for the bladder issues to see if she might be able to help (that is mon) so I might be able to sleep a little. Also because of the shunt revision on the 9th I had to schedule another pre-op appt w/my PCP's Nurse Practicioner (whom I get along with well and who did the last pre-op). Fit in there the 6 hour day at ERT monday, and the appt and testing with my neurosurgeon thurs and a whee bit busy. Sometimes to it's like someone asks you what you did bc I often think people think I have all this extra free time due to being on disability and they will ask and I dont even know how to answer??  - How do you answer "full time receptionist, secretary, insurance person, patient and advocate and feel pretty terrible alot of the time to in that mix?"  Lol you dont so I just dont answer the question other than generic answer and really think people should try better to get a clue about what patietns w/super chronic head to toe illness go through and/or what the family of kids with disorders like this go through and maybe they'd get that we cant always just drop everything at a moments notice bc our job isnt 9-5 and isnt a paying position either!  Needless this week has been insanely insane!

So anyways about the neurosurgery appt - Dr.Bragg looked at the incisions and thought the swelling on my back (and commented how swollen my valve and reservoir + catheter from lumbar to side incision looked asking if I had noticed this at all as well) and asked how I was feeling both headache wise (last time I saw her I was still feeling great and although I have talked to her nurse Lisa since that last appt) and the leg and bladder symptoms. Once I explained that the headaches had started to come back slightly last weekend and then full on by monday where I slept 3/4's of my infusion (4 hours and due to delays in starting was there 6 but I just never, NEVER sleep at infusions) and only seemed to get worse by monday night she asked a few more things and talked to me about ordering xrays and then doing a shunt tap using the newly minted reservoir she put in last time. The xrays looked ok other than whatever CSF fluid was there and the shunt isnt disconnected at any point so we proceeded to a tap. For this I just layed on the exam table on my side and she cleaned the area where the LP shunt valve and reservoir sit and explained the procedure. (very simple). This reservoir is essentally the very same thing as my Port a Cath for infusions and a dome like device connected to the catheters. She used a needle to insert into the resevoir, draw off some fluid to check color (for infection which was fine) as well as to check flow cosistency as best she can by this metod on the lumbar to side catheters. After that she drew off about 20cc's of CSF to see if this would relieve my headaches and we again discussed what that would mean. She told me I could call her nurse or secretary if I noticed a difference either later that day or on fri and said that if we did do further shunt revision she suspected either the LP shunt cathether sitting in the peritoneal (abdomen ) area was up against something such as intestine blocking the CSF from escaping (these cathethers only have slits at the very tip of the cathether which is a slight downfall and increases obstruction risk) 0r she said we may need to consider a completely different type of valve for the shunt, the one I have right now is a horizontal/vertical meaning flow is controlled both when upright and when laying down to prevent over-drainage and low pressure headaches. By the time I was 1/2 way over to UW from AFCH via the skywalk (couple minute walk) it was literally like someone flipped a light switch and just back to being headache free. I still felt tired and other things but that is always something that takes a few days after pressure is relieved to dissipate and go back to a more normal. I talked to Lisa my drs nurse again thurs after I got home from the UW Peds meeting and we scheduled surgery for teh 9th of august and pre-op physical is this coming fri.

I am also picking up my neice either thurs or fri next week  - she lives about an hour from me so she will be spending 6 days with me and going w/my parents, my older nephew and my sisters family and my second to oldest brothers family to a amusement park we go to every year for the day. While my schedule is pretty full while Lis will be here bc I still have to go to the pre-op appt and ERT on monday following when I pick her up we'll have time to swim and Quinn my older nephew will come stay and just in general have fun together. I know she has been really looking fwd to it as have I so in that respect although I am not looking fwd to dealing with these headaches for another 2 weeks I am glad teh surgery didnt end up being when Lis and I planned for her to come and during our day we go to Bay Beach! My brother who is coming to BB will then thankfully drop Lis of at her house on their way home since they live pretty close by each other and I have the testing at UW the day at bay beach as well as a meeting that thurs also at UW.

Will write more soon - God Bless,
Remember even in the trials we all surely face, God does know our plan and the path he has laid,
Erica

Fluid around back incision 5 or 6 days after the last one - very obviously increased but atleast we know the fix.

Neurosurgery appt, shunt tap, UW/AFCH Pediatric Pain meeting

So I was at a meeting yesterday for what I do with the American Pain Foundation at UW after my appt with neurogery (i'll update on that in a bit) and we where talking about this meeting we are pllanning around Pediatric Pain and education. (myself, my regional APF manager and Peds + Adult Pain Coords at UW/AFCH). So i'll talk about the meeting later to but afterwards we where talking about surgery and pain management and meeting together to cont planning this meeting either at the hospital post-surgery or a few weeks a few weeks after and one of the 3 asked something about if I felt i'd be up to meeting after yet another surgery? I made a comment that after shunt revisions you actually usually feel really good bc you have gone from the this high pressure setting back to a normal functioning ICP level and the only thing is post-op surgical pain to contend with. (not realizing the irony of my just made statement and who I am sitting with). Both Pain Coords who I have gotten to know fairly well stopped and just looked at me and started laughing a little as in 'so thats how bad our post-op pain care really is - tell it like it is, Erica'.(both joking). I not realizing how ironic my statement was at first had to laugh bc when you stop and think about it these folks I work with for APF and the same people helping to manage my pain care afterwards (though not on my official pain mngmt team). I had to reverse a little and explain my comment as while the pain care is actually very well and all where really receptive compared to some hospitals ive had  surgery at, at the same time there are some facets of discomfort mainly due to MPS that cant always be controlled by pain care. I think we all get in the habit  of thinking all pain will be 100% controlle (atleast alot of patients) but realy it isnt going to happen msot of hte time  or atleast  I dont think it ill/does. Instead and I think this is especially true with MPS is I think the most bothersome forms of pain can be treate ie acute post-operative pain, chronic muscular/neuropathic or bone pain but the little things from being post op in MPS may not be 'fixeable' such as discomfort from being in bed for 24 hours and unable to turn yourself without a nurse ot two to log roll you or discomfort from being in an unfamiliar bed an less room to shift around. Discomfort f rom less areas to comfortably lay on such as surgery being on your back and sid so you may only be able to ocmfortably lay on your opposite side which then puts pressure on your hips. Some of these things can be helped by proper positioning, using pillows, having the nurse help change position but in the end not all of this discomfort is going to be 'treatable' in my opinion 100% because it may just come down to needing to get up out of bed when the doctor will let you nd move around, stretch the joints and get out of just one or two positions for atleast brief periods of time. But this is just my opinion. :) 

As for the meeting we are planning this will be for medical providers in the morning with speakers educating on how to properly assess pediatric pain in the verbal and non-verbal child, how to delineate from acute to chronic pain and how to know when it has gone from acute to chronic pain. Our  afternoon session while providers iwll be welcome to stay will be based towards helping families and advocates also understand Pediatric pain, how to properly treat acute pain (post-op and from injuries) as well as how to understand what chronic pain is and again when has it gone from acute to chronic. We really want to help families understand that tylenol is nt always an appropruate post-operative analgesic and that families should be asking their doctors for better post-op care for their children to facilitate better overall healing as well as especially in patients who've had chronic surgeries that longer post-op pain treatment is often needed and is OK!

I have to get going so will update on the neurosurgery appt a bit later today if im still standing upright that is! Hopefully get better sleep tonight a busy but fun weekend ahead!! Will also update on the urology stuff and some appts I made with my PCP around this.

Erica                                                                                                                                                                                                                                                                              

Urology and feet

Quick note - talked  to my primary care doctors office today about the lab results and the nurse after calling me initially then hung up talked to my PCP's NP (also very familiar with my team/care) and then called me back again. The lab to check if this latest UTI was taken care of with the nitrofurontoin came back negative so that is cleared - we'll see for how long this time. When I asked this nurse if she had any suggestions of what might be causing these cont'd waking up 6-7-8-9+ times a night she said that my NP thought it could be from bladder spasms and they reccomende I call Urology and try to get in with the clinic ahead of the urodynamic testing or have the urology clinic call them (PCP) and see if they could work out some kind of solution to treating this till we find out whats going on. I cont to have the problems with having to cath several times a day due to urinary retention and difficulty starting urine stream in addition to the emptying so it all is probably related. The Urology clinic nurse called me back and was going to talk to the PA I saw back in June and will call me back tomorrow morning.

On a different note in PT today my physical therapist commented on how swollen my feet appeared (not ankles but feet) and that he hadnt ever seen this before in me - when I asked what he thought this was from he thought from the spine surgery, The only thing I had noticed is in slipping on sandals they appeared much harder to get on but at the time it didnt click why and they where tighter wearing also didnt click though. It simply cont's to amaze me how long out (yes 2 months isnt that long but long enough!) various symptoms cont to show up!  He also thought the feet numbness ive been experiencing the past few days could be from that.  The headaches have been cont'ing today the only time they really went away was for a period of time later this afternoon.

I fup with neurosurgery tomorrow and then have a meeting for my work with APFAN regarding advocay at UW surrounding Pediatric Pain awareness myself and the UW pain coords are interested in collaborating on together.

Will try to update tomorrow night,

Erica

is there ever a rigfht time?

I always have an extremely hard time knowing when to call a doctor - do you wait till symptoms are full blown? Do you call at the fisrt sign of symptoms? (I dont) Do you try everything you can on yuor own first?
This week has been particularly bad with various symptoms both the UTI seeming to not be fully trated yet again (did the lab for my PCP yesterday at her request after last weeks nitrofurontoin antibiotics), a yeast infection (yup TMI I know) and having aweful headaches with numbness in my feet (new) and right now my hands are periodically going numb. I am so tired from gettting up multiple times (think 7-8) in a 8 hour period to go to the bathroom last night that I didnt sleep well. It all isnt really getting to me but I cant help but wish these symptoms would once and for all be treated and stay away. I wish the swelling at the shunt incision would go away. I wish I would feel a little energy (the past two days have been down right aweful - I slept through 3 of the 6 hours I was at infusion and came home and tried to fall asleep around 10:30 which didnt work so well. In addition to the swelling at the lumbar incision there has been swelling between that portion of the shunt and the side incision where the shunt H/V valve and reservoir sit but that is only intermittent so possible is just either from fluid backing up or intermittent swelling. The only reason it is noticeable is because normally I never notice the valve and reservoir are even there even when laying on that side and now any time I am on that side it is a distinct uncomfortable feeling - a feeling I didnt even have right after this last surgery) Frankly I dont know. I know I could call my PCP and go in and see the NP for the issues and see if she could help get on top of the UTI or I could call my Urology office and I also know I could call my neurosurgeons nurse who is always helpful but again it comes down to just not liking to bother these providers. I already see my neurosurgeon on thurs and just dont know that it's really shunt related headaches - so keep thinking well maybe it will go away (very possible) or maybe if I give it a few more days will be more legitimate I dont know why my brain works like this but I guess after so many years of so many drs questioning me even though I know my nrsgn believes me and knows there is hydrocephalus I still worry perhaps unfounded (but I dont think one could blame me) that if there are cont'd post-surgery complications I would scare her off to.  I rhink im afraid to lose another neurosurgeon and have another dr tel me they in essence dont believe me.  Instead id rather just deal with the symptoms no matter how bad I feel atleast till my normal scheduled fup vs calling and bothering them or being a nuisance patient. (my words) . Ooh I know as far as the urologic cont'd complications it's less than wise to procrastinate dealing with this cont symptoms but it sort of seems like well if the last 3 cycles of antibiotics didnt clear it up why would another cycle? I know, I know trial add error and I do know this!  I guess i'll lay low today if I can take layin low for a day and see how I feel tomorrow - if none of the female and urologic stuff isnt better than will call my PCP and try to get in with the NP.

Will update soon -
In all things God does know the path he has laid out for us,

Erica

Documenting the incision; dealing with ups and downs

Do you ever have those days where you just need time to be pissed off or frustrated or just a little overwhelmed? I happened to be at my parents visiting for awhile this afternoon (sat) and my Dad and I where sitting out on their back deck talking about anything and everything to do with the week. I was tired (waking up 7 -9 times a night to go to the bathroom is not make for fitful sleep even if you fall back asleep quickly!) and feeling a little bad about a conversation my sister and I had, had the night before and was thinking of the coming week with soaring temperatures and basically just feeling one of those 24 hour blues although in this case it was more like a went to bed frustrated, woke up tired and in between dropping everything under the seeming sun which was getting on my nerves I just needed time to think out what I was upset about. Anyways my whole point is that sometimes having those relatively short frustrated periods and getting it out of the way is better than carrying something in your mind and on your back day afrer day after day. While nothing is really feel sorted when it comes to my sister and I miss her terribly and admittedly I do worry a little from time to time but instead of hanging on to all this and letting it get me further annoyed and further frustrated I just let go of it all after awhile today with the realization that I can control very little of the above circumstances and can only do some much especially when the other person pushes you away. I really think having a 24 hour or so period to just mull over something, let it "get" to you and try to make sense of it while realizing it is probably ok to feel down is better than ignoring something and it subconsciously follows you in everything  you do or you become so caught up in the problem(s) without realizing how much of an impact it is having on your emotional and overall self.. I think maybe this is why I can look at most things even some of the really hard things in life and in MPS more optimistically bc I can carry it with me for a bit, feel bad about it but then I can either set it aside, deal with it or can come to realize it isnt the worst thing that could happen and i'll get through it no matter how large or small the problem is. Doesnt always make the present time easier when dealing with those issues but still that ability to sort and deal and look at things reasonably is probably a key part of a functional person. I dont really know if this makes sense but more or less just my musings I guess.

Earlier this week - monday or tues maybe? Some fluid but not looking to bad and by this point had been about 1 1/2 weeks since this swelling started back up.      

 Saturday night - more swelling (??) it appears and holds fairly steady throughout the day though tonight seems worse than at any point so far - has been odd feeling - not only like the actual pressyre sensation above this site but to the L of the fluid closer to it seems my side has some weird sensation I cant quite describe. Ive always had where the valve area of the shunt seems to shift and rub on nerves and that to started up but not to bad and is long and dull in lenght vs short periods of pain and breathtaking.

Back view of the incisions - reminds me of a silly putty container really - not sure why that would come to mind but it does!

I decided to document this fluid over time 1 to 2x's a week just to see with my camera since other than feeling I cant see what the area looks like. I did go swimming today but was more walking around in the pool and laying on a small childs floatie vs to all out hoarsing around but who knows maybe thats enough to cause this increase. WEIRD!!!

"Wait and see" Neurosurgery appt

Just a quick note to say that the appt went fine - I dont think this dr either remembered me or he wasnt saying anything which I sure wasnt going to bring up the past bc it's the past (doesnt mean I trust the guy anymore) and I think my recent shunt revision spoke for my authenticity as a patient and that my neurosurgeon was able to demonstrate there was in fact a problem. Initially he asked who my neurosurgeon was and I said who it is (his colleague) and he immediately responded that he remembered my case and the problems that occured as my neurosurgeon had been talking to him about me. I was a little amazed by his immediate judgement that everything is fine by just glancing at the fluid area (a perfect description of it would be the size and shape of a choc marshmallow egg - the kind you get at easter. ) but at the same time his explanattion of why it might be a benign short term problem that will go away with time made sense - he just said that this problem can occur with laminectomies like I had and the extra trauma of having the LP shunt in that area can cause it to persist for a while.  He just said that if it kept on increasing in size or the area became hardened and less 'squishy' than it would have to be addressed. I trust that explanation (hey we can trust an explanation without trusting a dr ) :)  and my only question for my own neurosurgeon will be why the fluid would have went down in the 2 weeks post-op and then 3 or so weeks later it would all of a sudden reoccur and that ques is more bc I am genuinely curious about the mechanics of these 2 surgeries together.  I have a normal scheduled fup appt next thurs with my own neurosurgeon back at the same clinic so I suspect her nurse and my nsg will want to keep this to not only monitor the site but so she and I can talk about the other post-surgery neurogenic issues and she can keep up to date/help where needed. I expect i'll  call her nurse tomorrow about this and double check if I am to keep the appt or if she'll want to move it back a week or two.

Otherwise not to much going on, my younger cousin came with to this appt and waited in the waiting area and pre-appt we did a little shopping and after went out for supper which was nice. - will update soon,

Erica

In Christ alone....

Just wanted to share this hymn we sang in church rhe other day - beautiful and yet remindful of what we have and God gives to us.

In Christ alone my hope is found
He is my light, my strength, my song
This cornerstone, This solid ground,
Firm through the fiercest drought and storm,
What heights of love, What depts of peace,
When fears are stilled, when strivings cease!
My comforter, my all in all,
Here in the love of Christ I stand

No guilt in life, no fear in death,
This is the pow'r of Christ in me,
From life's first cry to final breath,
Jesus commands my destiny,
No pow'r of hell, no scheme of man,
Can ever pluck me from his hand,
Till he returns or calls me home,
Here in the pow'r of Christ I stand.

I'll update tonight or tomorrow on how the neurosurgery appt goes.

Erica

Neurosurgery Incision

Bit of a busy day today and tomorrow looks to be more of the same - as I was headed down to madison west side I pulled off briefly to call my Neurosurgeons nurse (whom I love)  to ask her a question about the shunt/spine surgery incision fluid. While im not all that concerned with the fluid bubble there it is uncomfortable and hasnt gone away in the past 1 1/2 weeks now (and previously atleast would go down over ngiht and increase again throughout the day the first part of the initial week last week. Anyways when I asked her if this could be normal because of having had the spine laminectomy (bone removal, nerve bundle repair)  and also the lumbar portion of the shunt placed in the area she laughed a little and said unfortunately no and  that it was concerning to her.  She said something like "I suspect because you've been around the block your calmer than most of our patients would be" after I mentioned not having wanted to call her sooner or take her time - atleast they are an extremely nice group!
 She asked a few questions about the size both height and length and other questions and then asked if she could call me back. Several hours later as I was headed back home from madison (more on that in a bit) she called back and said she had talked to my neurosurgeons colleague (my neurosurgeon was married the weekend of the 4th and comes back next week) about what was going on this other dr (more on him in a bit to) thought it atleast concerning enough to want me to try and come in tomorrow if I could work it out. I previously had another weekly PT appt and a few other things going on tomorrow afternoon I planned on but just given the nurses desire I said I could make it (at 4pm UW-Hosp) and when I got to where I was headed after my initial meeting on the west side I called and rescheduled for fri with my PT and worked out a few other details for other things.  Now about the dr I am seeing every day when my neurosurgeon would come in and check in the 8 days I was in the hospital she would talk about what various specialists she had talked to thought about the various issues going on post surgery. She talked about this colleague a fair bit in reference to his suggestions and agreeance with her approach to managing the post-op problems. For that part he gets a few bonus points but my reason for hesitating to feel less than positive about tomorrows appt has actually nothing to do with the shunt and spine incision issue and everything to do with a few years rpevious to seeing my current neurosurgeon I saw this other dr and he pretty well labeled me as a drug seeker (even though I was in pain mngmt already by that point and my PM dr and I where  more than happy with progress  we had been making and she was very adept at tailoring my pain treatment plan to not just one but the assortment of pain types (muscle/joint/neuropathic) I was experiencing with very good results. This also was shortly after I finished the initial 5 month or so phase of the Intrathecal trial at UCLA-Harbor in CA and he just couldnt look past the fact that my MRIs did not show typical ventrical enlargement (and yet my neurosurgeon and the adult nsgn I saw this spring BOTH made ir plain as day in their reports that ventircle enlargement and papilledema RARELY occur in MPS pts and IT IS NOT a valid reason to rule out communicating hydrocephalus. He labeled me and belittled my opinions vs actually listening to the knowledge I clearly had about hydro in MPS and would not listen to my symptoms but instead made a split moment decision on what kind of pt I really was. He may be world renowned but that means next to nothing if you cant trust and treat patients effectively who you are seeing just because they do not "look" like a person dealing with chronic illness. We will see how it goes tomorrow but any fup post this appt will 100% be back with my own neurosurgeon! We will see how it goes I guess.

As to why I was in madison in the first place today I actually was at Dean Health Plan my primary insurance provider meeting with my Insur Case Manager which went fine and was nice. It's always curious to put an actual face to a name and voice so that was interesting! :)  The drive down to the west side actually isnt hard at all and while busy (5 lanes) I tend to love that kind of driving vs the in-town stuck behind slow arsh morons who cant get their foot to the pedal to just do the speed limit! Due to my own past speeding tickets I drive within 5-6 miles of the posted speed limit and try to be careful but geez is it reallly, REALLY neccessary to drive 15 in a 25 or 40 in a 55????

More soon,

Erica

Ooh this body of mine..

Just a quick note -there should be some new pics on the photobucket stream from over the past month. This past weekend my sister, B-inL Zander and Bella went to visit my brother and S-in-L and Sara, myself, Jenn and the 3 kids ended up taking the kids to the beach in random lake which was alot of fun and jordan + zander had a really great time playing in the sand (spent more time in the rocks than sand!) and swimming together - Zander is able to fully swim on his own without a life jacket and frequently does so at my parents house when we are all there - to the point of even jumping in front facing and back facing from the ladder and from the side of the deck (connected to the pool) and so Jordan has really taken to learning from Z which is really neat to watch.   -- Zander then spent sat night and after church and communion we met up with my sister at my parents although it was storming so no swimming.

For the past 5 or so days ive had symptoms like maybe I had another UTI/bladder infection but I wasnt really sure because it wasnt all that clear of symptoms (worse at night with some ngihts wakin up no less than 8-9-10 times) but then during the day was pretty fine. If anything due to the lasix I should have to go more during the day! Anyways I think this one which is the 3rd one since the very end of may/spine/shunt surgery has been the worst with much more symptoms once it fully hit and more painful - maybe bc the numbness is waking up a bit more? Needless sunday I ended up calling my primary medical drs on call service ( the first time ever I HATE calling and bothering docs so usually try to deal with symptoms at the very least till the weekday) - thankfull the on call internal med dr was really great and also suspected this is what it was/was able to see some of my past medical history though not the hospital reports and called in a antibiotic - nitrofurontoin again which is what I took the first time around in the hospital/just after being released. We worked out that I would take in a urine sample this morning before  I headed to childres for my infusion but I needless forgot that in the fridge. (gross huh!) so my PMD instead of having me do a new test since I already started the anti-b ordered a lab test for next mon which will be a day or soo after I finish this 7 day cycle and to confirm if it is truly gone. I also talked to Urology at UW and they have moved up the urodynamic testing a bit as well as the appt with the neurogenic-urologist (specializing in spine injury related bladder problems. The Urology nurse also said in the mean time instead of cranberry juice they really reccomend craisins a small container a day. I just was really happy both my internal med and the urology offices where helpful with this, without having actually saw me. I guess since this is the 3rd one in less than 1 1/2 months we all are used to dealing with it. =? I am going to also talk to the nutritionist about starting a probiotic given ive been sooooo many antibiotics in the last 6 months (atleast 6 pre-surgery and this will be the 4th since bc if you include the IV anti-b's and the 2 orals + this one - yikes!

Otherwise theres a few other things going on but will write about that later.
God Bless!!

Erica

Follow up and traffic fun

Todays adventures - ooh my ooh my ! It started with an appt with my Pain mngmt dr just for a normal fup nothing major - usually this occurs 1x a month per FDA guidelines on opioid prescribing rules. Not only do I end up stopping multiple times just to stand up for a couple minutes (about an hours drive) but the rest of the time I am trying to get comfortable bc of the fluid/swelling that has continued to hang around at my LP/laminotomy incision site - this fluid which fluctuates from very minor to more noticeable and more irritating when any type of pressure/touch is put on the area does increase and decrease in amount of fluid throughout the day sometimes correlating with a high pressure headache but most often is just there with no other symptoms other than it definitely aggravates the radiculopathic pain in low back/buttocks/L leg. I dont know if it is abnormal really or not since the fluid collection has been there since post-op and my Nrsgn is aware of it from even my 1st surgery fup 2 weeks post-op. I figure I see her in 2 weeks and since I dont have many symptoms headache related or atleast they are very fleating and the radicular pain is while very uncomfortable I dont think it is caused by the fluid colelction alone. I suspect the fluid will in time (hopefully! go down on its own - I had something similar with my 1st shunt placement also an LP shunt but that time it was more a golf ball size fluid collection that only grew and this is more a silly putty sized container and jello in consistency vs hard. So back to the appt - my Pain mgmnt dr and I agreed to try and switch around a coiple of my meds 1 at a time - right now if we can get insurance approvals we are going to switch from a schedule II opioid immediate release to a 1x 7 day release schedule III (less abuse potential thus the different rating) opioid if I can tolerate the patch system as I frequently react to most tapes/adhesives/patches (we previously tried both brand and generic fentanyl patch as well as various more localized patches such as lidoderm and flector). This med has less GI affects bc it is a patch system apparently and more targeted to certain receptors. I will also cont on a long acting 2x  daily opioid for now and this is less likely to change. We also are adding a topical gel lidocaine for the neuropathic pain and increased lyrica dose to calm down the nerve signals as this is a crucial time in nerve injury/repair healing to get on top of the nerve signals and make sure they do not become over-sensitive and overly active even after the injury has healed/when it heals in time. Later on we may add/switch out other meds. We also talked about the GI/Urology appts related to the nerve injury healing and whether or not I should see someone in private practice as this could be done sooner or wait but atleast for now i'll talk to my neurosurgoen first on the 21st as it seems more logical to keep all surgery related care at her hospital for communications purposes.
These arent very well but can see a bit of hte puffiness around the incision in the last 1-2

On the way home from this appt today I was about 20mins outside of milw on the interstate and about 5 miles from my exit to hwy 60 and I hear a loud noise which my heart skipped a beat and I immediately thought something hit my window. 1/2  a minute or more later it became quite apparent it wasnt my window  but instead my front passenger side tire was flat and I needed to pull off immediately. On this particular Interstate that was nothing short of scary sitting in the off-lane more in the gravel/grass praying for no idiots not paying attention and not on the road to not come by as I called my Dad who was close to an hour and a 1/2 away and then called my brother who was about 20mins away. Needless to say 45mins later and a few breathtaking - hair raising moments watching traffic as my brother changed my tire I was back on the road! YIKES! Thank you to my brother though im eternally grateful!!!

Tomorrow we are headed to Iola which is about 2 hour or 2 1/2 hours or so from where I live for a giant car show/swap meet which is something we do every year and always a nice time w/parents, sister and her husband along. and my mom, sister and split off for the better part of the day to do our own thing.

Take care - god bless,

Erica

Insurance

Just a quick note - I talked to my insur case manager last week and while I knew our Dean POS insur was approved and that my own policy under my parents (I am past the govt coverage age but Dean has made an exception last year when BDSSA first switched to them. Anyways last dec they extended the coverage another year to december when i'll fill out the same paperwork. The aldurazyme in the mean time is covered for another year and all contracts worked out and signed with the appropriate companies with shipments continuing every 3 weeks with a 4 week supply.

Otherwise things are improving - as I wrote last week I am back home and enjoying this - the most bothersome symptoms at this point would be bladder although this is still improvd and the numbness in some parts of low back and leg but yet muscle spasms in calf and ankle which occurs with walking, sitting, sleeping (constantly wake up) and the deep nerve pain that runs from buttocks to ankle with any period of sitting be it 10 mins or longer.  I follow up with my pain mngmt dr for normal follow up on thurs and she I am sure will have some insights on this as the lyrica alone isnt doing it, I had been using the lidoderm and flector patches on low back but bc of skin sensitivity I break out in rash, hives, etc and so stopped this and will see about he topical gel or cream form of this med. and cover with a different dressing one of my infusion nurses gave me.

Otherwise this past weekend despite being exhausting was very lovely with my older nephew spending sat-mon and then mon we also had a get-together/b-day party for Quinn who tunrs 9 on the 7th  Lots of swimming with my parents pool hovering around 80degrees - for my this pretty much was just standing and walking around in the pool or watching Zander as he swam back and forth while everyone else horsed around. Was nice.

More soon -

Erica