Thursday, August 30, 2012

Insurance; love, hate, hate? It's been nutty..

Whew, I dont think ive gotten any of these blogs done in a timely manner (whatever "timely" is when you can do them at any free will) :) Non-the-less I am going to try to make this another 'catch-up' without endless update.

Earlier today I saw Dr.Bragg who I like, I really do like her and she's kind, good at her job and genuinely cares to help but OMG I sincerely feel a bit like I must drive them nuts (not that they ever act like it!! And I am sure they have other shunt pts which just as many issues) or atleast I feel like I ought to just rent a room at her clinic; agh these shunts are enough to drive someone off the deep end!
On the one hand they do really help a great deal; on the other hand the associated symptoms since we placed this 2nd shunt could drive the pope nuts i'd think. The issue right now harkens back to one we dealt with in the beginning of summer with pretty intense side pain/low back pressure likely from the shunt sitting on a nerve or irritating a nerve in where it's threaded in my low spine (it then runs up in to mid-thoracic spine which she has commented she wonders if this location although necessary if there is not enough CSF from the narrowing in my spine and so is part of the problem the 2nd shunt (or LP shunt) not draining enough due to partially occluding at times at that tip of the catheter due to not enough fluid.) We dont know. Headaches actually are really only pretty bad at nights and mornings are un-enviable for the first hour or couple hrs depending on the day and then the days except for the past few days (in which symptoms have been some-what worse) havent been that bad since we had turned the VP shunt back down to .5. Today we turned the LP shunt down and are going to try this. She told me she is on-call over the long weekend and so if needed she'll meet me in the hospital to re-set the LP shunt higher if the pain is worse  and/or if needed she can see me in clinic tomorrow to re-set it or figure something out. Right now there's no change one way or the other w/side pain and low back pressure but am curious if H/A's will be better over-night or in the morning..

One of on/off symptoms that I think is related to this LP shunt and which I keep forgetting to  ask about (even notes dont remind me to remember these sort of things!) is the leg discomfort both numbness (way back in spring we  where going to watch this so not as concerned) but anytime I sit for more than 10-15mins I get an  incredible discomfort and ache in my upper legs (back and front but mostly back) and its very possible its just muscle issue although id think w all the strecthing I do id be hitting those muscles well so I really dont know. I do know its a pain and a pain even in the butt; damned MPS I tell you sometimes... I hate having to ask people questions much less about new issues!

I am back in splints for the carpal tunnel symptoms although only wearing one side and at night for now and had to reschedule the EMG for next week due to a neurosurgery appt tomorrow that was scheduled Weds morning. The actual hand appt with the new surgeon is the beginning of Oct.  Im not actually sure if this is carpal tunnel again (would be a third time if it is as ive had 2 previous CT releases each hand and tendon transfer on the R thumb). I wondered if it could be from the area in my (lower?) neck that doesnt have much CSF causing referred symptoms but I dont know.
In other news I sorted out some providers issues and in a flurry of phone calls late last week it looks like I can use my secondary insur to stay with/reimburse those providers who are not in-network with my primary insur plan and whom I am not to willing to leave which was exciting news. Who knew that something like being able to stay with a provider could mean such good news, right!?  But in the case of my Pain dr she is fantastic.

I scheduled an appt for Nov with the Ortho-spine surgeon I see at Twin Cities Spine Center/UofMn figured this was as good a time as any given some symptoms and changes and I also have to go back (albeit a year late due to all the shunt surgeries and the IRB programmable shunt change) for the Neuropsych study testing anyways and can piggy back the two. My Pain dr has been urging me on and off to see this dr for some time so I figured I should do it once. He's good at his job and very familiar w MPS neck issues/back issues so it will be a good thing ultimately.  Ive not seen him since 3 1/2 yrs ago and 3 months after my neck surgery (which was on  election day 4 yrs ago)

Last week (17th or whatever that Tues was) I saw a Neuro-Opthalmologist at UW; she did Visual field studies, retinal and corneal pictures, and some other scans/tests and went ok. The reason for this was all the shunt issues and vision issues (which do mostly iron out when the shunts are working) The really only thing was  retinal damage/cont'd changes on Visual Field Study and mild optic nerve damage. She wasnt sure if the retinal damage was actual damage/degenerative changes or if it was due to small eye openings and defects on the VF studies but due to the cont'd presentation on these results and the 2 studies from 2 yrs ago she wanted to repeat the tests again in 6 mo. Not the most exciting test (is any really though) and tedious but not painful and each eye takes about 10mins so should be ok. Just alot of boring clicking while staring at a center dot to see what areas if any of a persons visual acuity are affected by issues.

A comment I posted on fb basically venting or something (whining a little maybe?!?) And a friend whose daughter also has MPS I and although much younger reminds me some of myself:

Me: "The amount of money I now spend on drs n PT being scattered to the wind should be ILLEGAL! :/ Cant imagine s/o w crappy mpg."

BH: "What would happen if you went a year without a medical visit?"

Me:"It would be nice but not feasible; would mean no ERT (wkly), no Pain mngmt (due to FDA regulations monthly visit), no PT which although I do stretching and strenghtening at home at PT she does a hands on technique which both helped wonders... for QOL. It would mean anytime/everytime the shunts re-programmed themselves (has been 3 or 4 times in several mo's) to a higher setting id have to live w the pressure vs very little H/A's when the shunt settings are at the correct settings. It would mean the cardiac issues would be messier or more complicated then they are already are as we've tried to adjust meds accordingly for the L sided heart failure symptoms, valve issues, etc. And the list goes on endlessly.... I dont love doctors or therapists and gets annoying but i'll take some measure of feeling better and dealing w seeing them over not feeling good, no quality of life and no answers... why do you ask?" ~ "And no botox which I also dont love but it beats the back muscles in near constant spasms! Being Elly has MPS I and although transplant so is very different you I am sure know..."
BH: Kind of knew the answer..just hoping others would read it. :)B.

Lol, I couldnt help but laugh; knowing B as well as I do I really did know he was pretty much giving me a hard time/teasing me a little but it still made me laugh. Im really not sure outside the MPS community a person can get just how "insane" this MPS "stuff" can be; it sure never stops!
All for now, i'll update whenever there's something new to update on or if anything changes w shunt issues.
In the up-coming weeks some of the appts or tests coming up include appt with the new Neurologist taking over the Botox injections, cont'd PT in Madison w the new Therapist, EMG test, and other "not new" follow up appts.

Always fun,


Monday, August 20, 2012

Providers here, there and everywhere..

Below is a list of all (minus one or two in Mn) the providers I see and the recent switches - this MPS stuff is very crazy! I see most of these providers at 3 or 6 mo intervals w Neurosurgery tending to be more often and  PT every week for the most part + Pain Mngmt 1x montly and Neurology (formerlu PMR) every 3 mo for the series of botox injections..

These are all my providers:

PCP: Peggy Simpson, MD
         Dean Clinic
        Fish Hatchery

Neuro-Opthalm. - UWHC (Dr. Chen) - May switch to Dr. Weir at Dean, depends on 8/21 appt.

Neurologist - botox - Dean
  Theresa Mangin, MD (taking over PMR-Tchekanow @ MCW)

Urologist - Dean (from UW)
Jennifer Maskul, MD

Hand - Matthew Bliss,MD (from FMLH)

PT Kathy Nevins - Dean Madison (formerly done BD)

PMR - possibly to Dr.Bender (pain mngmt) - working to try stay w Dr.Bratanow???

Providers staying the same:
(insur approved) Cardiology (CHW), Endocrine (FMLH),  Neurosurgery (UW), Genetics, Infusion. (CHW)
*Ortho-Spine MN (??)

Alot more chaotic w providers here, there and everywhere so there wont be much coordinating of  appts on my part whih is crappy for the same day anymore.
 A few bumps but no big hills in the past 2 months which is nice!!!
Grateful to be this far in sorting new providers and for all the help/patience w this from my Insur Case Manager especially w/sorting this all!

I see Neuro-Opthalm tomorrow (tues), PT Weds (both in Madison),  and Pain Mngmt on thurs - ((cringes at schedule))


Saturday, August 18, 2012

Doctors, Appts, Zander, Oh My!

Wow, so it's been an incredibly busy and pretty tiring (but not bad) few weeks since I got back from Boston between new provider appts (3 or 4 of my providers switched to Dean clinics due to the switch from POS plan to an HMO plan; the rest of my providers at FMLH, CHW and UW stayed the same through special 'out of network' approval. Work with my job especially catching up on things we wanted to do and get out to families from the meeting and regarding updates and the usual scheduling and insur stuff on top of watching my nephew Zander the past 2 days and several more days in the up-coming few weeks.

A week ago I saw my new PCP for the 2nd time to deal with a bunch of referrals and since I 'officially' had chosen her then we went over a few other things although nothing earth shattering and more background stuff like medical issues. I wont have to see her for all referrals but since we where dealing w 4 or 5 different ones and I am so new to her the nurse and I decided this was the easiest. By this appt she had already helped situate/refer to 2 other drs (new pt referrals not insur referrals) for the possible new PMR doc and as well for the Neurologist who is going to take over the botox in my neck, mid-spine and shoulders that was otherwise being done at Froedtert in Milw.
Some of the new referrals we sorted out together was although Cardiology out of network had already been approved by my insur we still needed the form/info to be submitted, we where sorting out Urology and who would do that ie would it stay w the doc I have had at UW referred by my neurosurgeon or was there someone at Dean who also had spine-nerve (neurogenic) bladder background. The 3rd was for the Orthopedic surgeon at UofMn/TCSC who did my neck surgery and who my Pain mngmt dr thought I should see once (she was recommending I see him last fall/winter already but the endless/continous shunt surgeries kept stopping that) and there was a 4th referral of which I am blanking off hand.

At this point ive transitioned to the new PCP; she seems nice, is young-ish and so seems energetic and interested and has already learned an amazing amount about the issues and MPS in general from when I first emailed her and she said she was interested in learning but didnt know alot about MPS.

I have appts w/a new Urologist (they just called yesterday) and testing + appt is set for Oct but this new dr from reviewing my referral wanted to try a different, new medication sooner and that is one of the drs that is switching to Dean (from UW) but this drs background includes an interest in neurogenic (spine-nerve signal) bladder issues so hopefully it will be fine. :)

Ive already met the new PMR dr who isnt doing the botox but may take over for  my current Pain Mngmt dr (=/) unless my PM dr is able to 1. become a dean provider as ive mentioned before or 2. I can see her under my secondary insur. I have to figure that stuff out when I see her this upcoming week. I liked the new dr but can tell she very likely wouldnt be as involved or over-all interested in all goings on of my care as my current PM dr is and plus I just really like my current Pain dr. =/ Ive been really grateful Dean has been so good about realizing so many of my drs are very sub-specialized and they (Dean) dont have the same specialized drs to take on many aspects of my care and even PCP I can deal w as this new one seems good so far but I really, more than anything want to keep this Pain dr and going to figure it out one way or another. Anyone in the pain community knows how hard it is to find a Pain dr worth their weight in gold and even if I get frustrated w her secretary this dr did and has done wonders for my care on top of never not believing I knew what I was talking about regarding when my former Neurosurgeon dumped me and the neurosurgeon at UofMn kept telling me my shunt was fine and I knew, just knew the shunt was not right. Dr.B was there backing me up and trying to help when many others on my 'team' didnt.

Botox is switching from the PMR dr I see at FMLH to a Neurology dr at Dean who was interested in taking my case and doing the Botox. This is set for mid-Sept. (this is done every 3 mo) This should be ok and although if I had to switch I was kind of hoping it would be to the dr my neurosurgeon refers most of her spasticity/botox pts to in her hospital it should be ok and the Neurologist has copies of my Pain Mngmt drs last few notes and the PMR drs last few clinic notes to so she knows what is going on.

Neuro-Opthalm is staying at UW and finally getting the testing and then appt done on tues. - I say finally bc ive re-scheduled this multiple times due to shunt surgeries and then as we where sorting out if this was going to be moved to Dean or did Dean's Opthalms recommend I stay w UW's program. Altogether the appt they say takes around 4 hrs which should be boring and long and I dont expect any earth shattering news; hopefully they can tell me if my glasses rx is correct (ive been wearing them alot more often these days) and just generally a good opinion to have given all of the shunt issues we've had over the past year+.

This past week just over with was even crazier as monday was usual ERT and got home close to 5 after leaving my apt around 8am. Tues I had an Neuro-endocrine appt back in Milw again this time at FMLH (hospital next to where ERT is at CHW) which went well and able to cover a few things with this dr. The lab work all came back fine or stable which is good. The main 2 things or concerns where 1. why are periods so late and so light/sporadic and 2. getting the class done for the emergency cortisol replacement (solu-cortef injections) and she re-covered the times she most stressed it should be used (fever/sick or throwing up, nausea specifically) and she was glad the new PCP brought this injection concern up as it was something she'd been mulling over and thought it was a good idea to have on hand and help recover from any of these episodes. Insur approved these injections so I do have them on hand and the class is scheduled from 2 wks from this past fri. as I had to re-schedule it.

Weds., I saw the new PT for the 2nd time and proceeded to get lost (I knew where I was just couldnt figure out where her clinic was even though id been there 2 wks before!) so I was 30mins late for a 45min appt but she made it into 45mins anyways. She seems good at her job and at the technique my former PT used its just a pain having to drive so far to see her! (she and my former PT are the only ones that do this technique here in WI)

Thurs I was watching Zander my youngest nephew all morning and afternoon and he had his autism-ABA class starting at 12:30. In the morning we ran down to Madison (about an hour drive) to the book store (library as he calls it which we also frequent together) and got some new bug/butterfly books and then went on to my neurosurgeons ofc where the Nurse Practictioner whom I had talked to the day or so before was meeting me to re-check my 2 shunts and re-program my VP shunt. The shunts keep re-setting and so she checked both and re-set the VP shunt back down to the correct .5 setting, the LP shunt setting was fine. Zan had a blast playing in the waiting room (neurosurgeons ofc is in the childrens hospital) and was a bunch of other kids he did extraordinarily well interacting with. He didnt have his customary headphones on (to mute noise levels) and never once complained plus had really appropriate and cute conversations w the other kids and some parents + there was a child life therapist/volunteer Zan interacted with for coloring too. Not that I/we wanted to be there but was actually really worked out well for Z to burn off energy and nice to see how far he has come with interacting with other kids his age and younger + older! It was totally AWESOME! Once we saw the NP (Sue, whom I really like) Zan was fascinated asking her a hundred questions and playing w the actual re-programmer dial once she was done with it (and Zander-izing it to where we thought for a bit we werent going to get the two pieces back apart!).  Once we got home it was busy, busy w Z's class and making lunch and fri was more of the same class for him in the morning and afternoon and play, play, play in-between. I was super tired on fri, even more so than thurs but still a good time and for a while he and I even just laid in the grass in the front yard musing about bugs and flowers and fans, ooh my. :) (Zan's favorite things).

Next week is another busy one w ERT mon, Neuro-Opthalm tues for 4+ hours, PT weds (both in Madison and all 3 days an hours drive away), my Pain Mngmt dr thurs (back in Milw and another hour drive one way) and watching Zander on fri again. Ooh my, oh my this crazyiness shall end someday, right!? =)?

Over the past yr ive met 2 families (on-line not in person) whose kids have Hydro and shunts (one of the families is the one my neurosurgeon would often talk about in comparison to my shunt issues and who has 2 shunts as well and who one of my infusion nurses sons goes to school w.)
Anyways so this 1st family has asked me several times if I was interested in participaring in a Hydro Walk in Milw and I wasnt really sure but promised id think about it. It is taking place at the Zoo and that is someplace we (my sister-in-law and my sister + family) want to go this fall so I figured instead of just registering to walk id do more good and help out as a kids area volunteer which seems like fun and a good way to help. Even if we dont end up as a family going to the Zoo w/the kids that day this is a good thing to do .Hydro for MPS is sooo different than Hydro for someone born with it as their main issue but it's still a common issue and still the same treatments generally for both Hydro and for Hydro caused by MPS. Last year and the year before I had stuff I was doing for the Amer. Pain Found including a walk last year that I was asked to volunteer at with APF materials/information as the walk was being held to raise funds for APF. We where asked back in fall to do the same thing for this same walk/group but since APF has closed I figure this Hydro walk is a way to still help make a difference just for a different cause. It should be fun and although nervous since I wont know a soul I am looking fwd to hanging with the families kids in whichever area  I end up being assigned! :)

I know this post is long so if you've made it this long thanks for reading and stopping by!


Wednesday, August 8, 2012

Well it's continued to be a busy few weeks - I finally (I think) have settled on a new PCP which means I need to say 'bye' to my other 2 (PCP and her NP who I worked most closely w). I had a 2nd appt today which was the soonest I could fit in to get 4 different PA's/referrals worked out between who I will see for PMR (Neurology at Dean or PMR at UW), the paperwork submitted for Cardiology although he has been approved already as an out-of-network provider for coverage in-network. Pain Mngmt - im not sure when my PM dr will know if she will be accepted in to DHPs in-network  plan or not and otherwise there is the PMR dr at Dean that has my paperwork and wants to see me (she does Pain Mngmt but not botox so thus why we are looking at the 2 other drs (neurology or PMR) for Botox management. ** Add in I am going to be seeing the Neurologist at Dean for Botox, I personally think PMR would have been more helpful but we'll see; maybe it will go well.  Hand surgery is another one, that dr agreed to see me, has my paperwork and doesnt require a PA but wants a EMG.  The appt went well today and I think the PCP is very organized and efficient and gets things done quickly; she left me to fax/scan the referrals she printed to my Insur Case Manager (which I am happy about I am glad to have copies of these referrals and to know they are going to the right person.) :)  Otherwise we covered  a few small things and she was going to work on a few things in the background of which she already mychart'ed me 1 of the end results - efficient and fast, love it!

My niece and nephew where here from last weds to yesterday (tues) - thurs we went to the Zoo in Madison  which was alot of fun and although very hot we saw most all of the animals with each of us having favorites. :)                
                  Lis and Quinn on the playground at the Zoo
                                           Playing Turtle
                                                Watching the bears
                                                           Lis and I
                                      Thurs after spending the day at the Zoo I had an appt with Dr.Bragg my neurosurgeon which went fine although one thing she did do was depress the reservoir on my VP shunt which of course caused the usual triad of symptoms about starting about an hour after and getting progressively worse as the hours wore on and lasting well in to friday morning. Symptoms wise the worst thing is the LP shunt rubbing on the nerve and irritating my side/low back but we are hoping this will heal and ease up and we will just watch. As long as things stay the same or improve I will go 3 mo in between seeing her which would actually be a record! We'll see and hope! :) Symptoms may not be 'perfect' but they are sure ALOT better than before the 2nd shunt was placed and I hope the nerve issue heals and otherwise will be happy with what is for now and wait and see. :) The symptoms I get from either shunt taps or depressing the reservoir I dont know what is the cause of that if its related to too little CSF in the lower C-spine area or what but includes initially a headache, then incredible neck stiffness to the point I cant move or bend my neck at all and then projectile vomiting, fever and stiffness all over. Its very weird and then slowly improves by the next morning. I HATE it!

                                                  Lis and Zander at the Marsh
                                                     Lis, Zander and I at the Marsh

                          Sunday night we went to the Marsh with my sister and her family which is Zander's favorite thing to do - he loves the butterflies, bugs and milkweed plants especially which is what monarch butterflies eat.

Tues we went to Bay Beach up by Green Bay which is an amusement park we go to every year and totally fun - my parents, sister, youngest nephew, oldest nephew, brother and his family all went to and we just spend the day running from one ride to another with the kids. The tilt-a-whirl, scat, giant swings, giant slide (100-200 feet in the air 4 to 5 set of flights to get to the top and sit on potato sack to ride down), carousel, scrambler, and so much more!
                                            Myself, Jenn (sis-in-law), Jordan, Lis and Zander
                                            Sara, Lis and Jordan on Ferris Wheel, Jenn and I and Zander in front.

Otherwise there has been a ton going on, I met with the new PT last week who is the only other one in the state that does counter-strain besides my local PT who is not in Dean's network and this Therapist thought it was slighlt ridiculous that I should have to drive over an hour to see her when there is a local Therapist 15mins away who does the same thing she does with good results to. Non-the-less she is willing and able to help me and I see her next week (our schedules didnt mesh this week). We will meet 1x weekly for 45mins sessions which is similar to what I was doing with local PT at an hour there.

I meet with the PMR trained dr tomorrow who does not do botox but does pain management and willing to follow me. I am not set on seeing her yet and cont to try to figure out how can I stay with my current PM dr' we'll see.

I have an appt in Sept with a Neurologist at Dean that does do botox and wants to follow me so that appt is 45+ mins and we'll see how it goes. Hopefully well and maybe she'll have suggestions to help.

Lots else going on including busy, buys with the new job and the extra income is admittedly very nice as is the ease of being able to do this job from home and even at times just from my phone if answeing emails, looking up information or fwd'ing information - I can store documents on my phone, just about anything, it is really niec!!

I'll updste again soon - thanks for stopping by - leave a comment or become a follower if you like,