Friday, February 27, 2015

Living in the Light... 'Patients as Partners', Febr 28th, Rare Disease Day

I am pleased to introduce 'Living in the Light' and Levi Gershkowitz whom I had the pleasure of meeting a few weeks ago at the LDN WORLD meeting. Levi does professional photography of rare disease pts., trying to portray pts as more than just the disease they have. While i've done pictures before (for Genzyme) at another Conf. in Vancouver there was something a little different about working with Levi.
We didn't have alot of time as I had a meeting before I met w Levi and a meeting after BUT he did a great job and was truly fun to chat with and an easy conversation. You know how sometimes people ask you questions and it just makes you sort of freeze up? I don't think I felt that at all while talking with Levi. I also think what he shared below really captured my story well, in a way i'm not sure I could have done.. I'm not sure what made me think of it but I said to him in emphasizing that MPS is just a part of my life (a big part but still just a part) that I live an 'abnormally, normal life'; meaning my nornal is definitely not what anyone else would consider "normal" but I don't think my life is bad and I am glad (I think) for all the experinces in a way that MPS has given me.
I think in some ways I have a unique outlook on life and even on some of the issues I deal with. I think having MPS has brought plenty of challenges but it's also given me many experiences that I in turn can use in other aspects of my life. I for instance indirectly find myself using examples from my 'MPS Life' while teaching my Sunday School kids and I feel MPS has really made me appreciate my faith. I also think it has given me a greater appreciation for just how caring some people are and the realization that in the medical field I am not going to see eye to eye with every doctor I meet nor is every Medical Doctor going to always agree with or believe me but that doesn't mean I am wrong and sometimes it doesn't mean they are wrong.
Usually (though not always) disagreement just means a lack of experience with whatever issue it is I am trying to find an answer for on my part and has taught me some pretty fierce tenacity (keep on keeping on till you do find that Provider who believes you/wants to help you/can see outside a stereotypical box).
I feel blessed to have had the opportunity to attend the LDN Mtng and to not only work for the Foundation I do, to have had the chance to talk to so many Researchers and to hear so much exciting research that is finally so close to fruition for MPS I pts. In addition to this and learning it was nice to be around other families and a friend who like me was a very (VERY!) late diagnosis and just share our frustrations.
I was a late diagnosis but Erin as crazy as it seems was actually not dx'd w MPS I till she was 38. I was able to help her some with issues that others helped me figure out when I was first diagnosed. I feel like living with this diagnosis continually reminds me it isn't about me and instead I feel like it's my duty in a way to help others by sharing what so many along the way have shared or taught me..
In general really it's just exciting knowing the research that has been talked about for so long finally seems like it is so much closer to actual patient access! I am grateful to Levi and his push to bring patients and our daily struggles in to a spotlight where medical professionals might better realize pts are not just a diagnosis BUT people first! There are so few adults with MPS I so it is genuinely nice that Levi by doing his photography and story telling will help Medical Professionals realize that many pts do not in fact have typical MPS I features but can still be significantly affected.. It seems particularly poignant that we did this shoot and storytelling just a few weeks prior to Rare Disease Day (tmrw Febr 28th) as perhaps our sharing my story, late diagnosis and mild features despite sometimes significant MPS involvement can help more Medical Professionals and Families realize ones look has little to do with how their disease may progress..
Below is what Levi shared based off the interview he and I did at WORLD prior to our photoshoot.
Thanks so much for stopping by, join this blog as a 'follower' to the R of this post. =)
Erica (and Levi, below)
Breaking the mold has always suited Erica well. She does not want to be fit into a box, or classified as part of a larger group. Even after being diagnosed with Mucopolysaccharidosis Type I (MPS I), she didn’t want her life to be forever defined by the disease. A disease so rare that only one in 100,000 people get it. “MPS is just three initials,” she proclaims. “I’m still Erica. I’m still a person.” Despite the rarity and severity of her affliction, Erica has spent more time developing her sense of self—to her, an equally important task—then letting MPS dominate her daily life. “Sometimes I feel there’s too much focus on the diagnosis instead of on the person,” she says. “And helping them become somebody despite that diagnosis.” The desire to find herself amidst the staggering amounts of doctors visits, weekly Enzyme Replacement Therapy (ERT) treatments, and regularly necessary surgeries, to some, might seem like a secondary issue. But to Erica, defining herself, and by virtue, helping others find themselves from within the turmoil of a rare-disease diagnosis, is perhaps the most important thing at stake. Within the MPS and Lysosomal Storage Disease (LSD) communities, Erica hopes to guide others to make similar realizations for themselves. “Just because you do or don’t have a name for what’s wrong with you,” she says. “it does matter, but it also doesn’t matter, because that isn’t who you are.” She doesn’t view her mission on earth as something with concrete goals, but rather, wants to move in a decisive direction, towards building a positive dialogue and understanding between MPS sufferer’s. “I just feel this passion to help others, especially other adults, realize that we do have these disorders, but that doesn’t mean that you still can’t have a life.” She is also dedicated to passing this message along through her involvement with Gene Spotlight, a Florida-based non-profit organization that helps spread awareness and research funding of LSD diseases, promoting grant funding opportunities for drug research, and connects with patients. “A lot of what I do is connect researchers to patients and patients to researchers,” says Erica. She also tries to help find funding so that individuals and families can attend LSD-related conferences or for other resources, a great way for people to find community and ways to cope with their conditions. Outside of the office or conference hall, Erica has found more public ways of supporting her cause. For the past three years, she has taken part in Running for Rare Diseases, which is sponsored by Genzyme and takes place at the Boston Marathon each year. Runners sponsor patients with rare-diseases, and a area is set up where the sponsored patients and families can cheer them on. “It’s huge this year,” states Erica. The first year there were only 15 runners, but now there are over 90 registered. "There have been many ways to get involved and raise awareness since diagnosis and it is just a way to feel like I am making a difference and to feel like despite MPS I can make a difference" As an adult with MPS, Erica also recognizes the importance of social tools, especially social media, when it comes to living a more normal life. “Facebook is like the medium for rare-disease people to find each other,” says Erica. “You meet a person, or a researcher and they connect you to other folks.” The connections that Erica has fostered as an adult are a testament to her undying positive attitude, and the high standards she holds herself to. She was diagnosed with MPS ten years ago, at the age of 21, which is relatively old for an MPS I patient. The diagnosis followed years of hardships that she faced as a child, when she was unsure of what was wrong with her. Throughout elementary school she was often faced with the fact that it pained her to try and do what everyone was expected to do, like write several paragraphs with a pencil, or even sit cross-legged. “Why can’t I do this, while other kids can do this?” she asked herself, frustrated. She suffered from intense headaches, that kept her home for much of first grade. “As a kid you don’t know that that’s not normal so you don’t say anything to anybody,” recalls Erica. Her issues were multiplying though, and not getting better. “My headaches just kept getting worse and worse as I aged.” Her vision was suffering too. Her heart wasn’t working correctly. She needed carpal tunnel surgery. She started seeing more specialists for the myriad of health problems that arose with many diagnosis tested for and ruled out. It took quite a while, but around the time she turned 20 she started seeing a congenital cardiologist, who first proposed that she might have MPS. Several months later she was officially diagnosed. Despite the long time it took her to get a proper diagnosis, Erica never let adversity get in her way of doing what she wanted to do. “Even though I had all these issues as a kid, and it frustrated me that I wasn’t diagnosed, In a way I’m kinda glad that I wasn’t, because I think in a way I was able to have a relatively normal childhood. I mean yeah, I didn’t feel great, but I worked part time, I did a few sports, I graduated high school…” Upon being diagnosed Erica quickly transitioned into getting regular ERT treatments and began to get more operations to correct some of the damage the disease had caused in her organs. To deal with her headaches she had to get two shunts; a ventriculoperitoneal and a thoracic pleural shunts surgically implanted to deal with what turned out to be hydrocephalus. Since the implants, she’s had about 35 surgeries to deal with the shunts but believes it’s worth it. “The difference with the shunts is night and day, while imperfect it's better than it was before this” says Erica. She has also had open-heart surgery twice to repair a bad aortic valve and will face replacement of her mitral valve in the future, but also feels she made the right decision. In total there have been 60 or so surgeries as MPS affects virtually all organs, joints and body systems but these to are just a small part of life with this disorder and who she is. Working with the medical system comes with an incredible knack for showing patience, and the complications can drive some to the brink. Staying true to form, Erica has waded through the most difficult of circumstances only to come out stronger. Now, she wants to find and maintain a healthy balance, both mentally and physically. “Sometimes I’m so busy thinking about what’s tomorrow or what’s in the future, that I’m not really enjoying what’s going on today,” she says, reflectively. With so much new research and advocacy for MPS patients, of which Erica is bound to be involved in, it can be hard sometimes not to think about the future. Well, surely she’ll be taking it day by day.

Tuesday, February 24, 2015

Neurosurgery (shunt) f/up, Hand surgery f/up, etc.

This is one of those updates i've been thinking about for days but have not actually sat down to write. I have also been pondering what to write for a RfRD (running for rare diseases team) Patient Partner blog and coming up with a blank on that to.
This last Fri for the 1st time I chatted with my 2 new RfRD running partners on the phone (I have 3 this year, 1 returning, 2 new members) and thought i'd get a little inspiration there but haven't really? I have some thoughts for what to write this year (my 3rd year on the team) but no clear path on how to lay out what I have been thinking yet.. hopefully I will get there! I do really like my new runners though, they seem fun and we had a good chat, the time sort of just flew past which says a lot as I am not much for talking on the phone!
This last week I saw Dr.Bragg in f/up which went fine, really nothing to important out of that Appt other than we just watch and see and for now as imperfect as the headaches and resulting (pressure related) symptoms are it's somewhat better than it could be (could be worse) so she just said to f/up in a month or if needed call her sooner. I didnt think to make the appt on the way out and havent called to schedule yet but will get around to it at some pt. I think the worse is the pressure affects in-directly the sciatic nerve/symptoms down my leg (from reading online and having talked to a couple others w/former spine shunts it seems spine shunts and leg nerve irritation is not at all uncommon those less commonly known amongst our drs.. It is definitely a symptom that occurs related to the shunt(s) functioning less than well and not only occurs at night waking me up but intermittently as pressure builds during the day.
Breathing has been an issue the past 5 or so days (not so much SOB just intermittent feeling difficult to get normal air) though I honestly just don't know if this is related to fluid building up in the pleural space or something else or perhaps multi-factorial ie cardiac and shunt combined in nature.
This combined w the headaches and leg symptoms could drive a sane person batty! I swear really MPS is like a mind game not only trying to figure out issues but figuring out when something is really an issue to the pt of telling 1 of the Providers about and then IF it is WHO/Which one!

I was sitting at ERT writing some of this post yesterday (Mon.) and finishing the rest now, a day later. At ERT I generally have quite a bit of time even after having finished (what I can do there) my SS lesson plan, taking care of other phone calls, filling out any papers I have to and tyingup a few other loose ends related to other stuff. I figured since I had my netbook in my bag I might as well try to type out part of an update (at the time I was initially writing this i'd had about 2 more hrs of a 5.5-6hr infusion to go). =)
Today I saw the Hand Surgeon and he is happy about the hand surgery recovery. He commented the only concern he'd had w the surgery is when he did the hypothenar fat pad graft there wasnt much fat tissue to begin with for him to work with for the fatpad graft but he felt what he had he was able to get a good cover. As far as the splint I am able to not wear it other than he and the OT recommended with a few things to perhaps use it (but my discrection) and OT recommended at night as they are concerned this is already the 3rd CT release for each hand. I am not entirely sure wearing a splint would or would not prevent recurrence but don't know. I guess i'll just see if I would wake up w symptoms I can put it on but otherwise symptoms have for the most part been really good! Is always nice when something is good! =)
Typically with just a carpal tunnel surgery release a patient is in a splint for just 7-10days. Because of the hypothenar fatpad graft the healing process is longer though I was able to take it off at home when doing simple, light activities. I am glad to be done with another hand surgery!
I do have to share something funny that 2 of the OT's both of whom worked w me a bit over the last month (related to post-op care/splint care) said. I had just been taken to a table in the rm and they both, walking past said "Hey, Erica, we're fighting over who get to work with you today" =)
I have to sort of laugh about being in Milw. yesterday, and Madison tmrw + Weds as last wk it was Milw. 1 day and Madison 2 days. Last wk Dr.Bragg asked me at her Appt if I am ever able to coord. appts for the same days? Clearly it would be hard to do so when in 2 different cities but for instance like last wks 2 Appts in Madison and 2 separate places this wk I see the Hand Surgeon Tues at Dean West and PMR doc at UW in Middleton (botox injections in spine/neck) on Weds in addition to the usual ERT every Monday.
It would be great if it where a little easier to coord. appts though! Most rare disease pts know and understand this struggle though; just yesterday I was reading a funny article for 'Rare disease day' and 1 of the points was about never being able to coord. appts and doctors being in multiple different cities/medical centers.

On an unrelated note and i'm not entirely sure what has made me think of this (other than perhaps hearing, reading and thinking about the Ataluran drug so much in the past few wks which is the drug being studied for non-sense mutation (atleast one mutation makes no enzyme) MPS I pts and which is expected to finally hopefully go to trials this summer. This same drug is in Phase III trials for DMD which is a form of muscular dystrophy, a muscle wasting disease for pts who also have atleast 1 of their 2 mutations that makes non of the needed enzyme.
Anyways it occured to me that while DMD and MPS I are very different disorders it is almost striking how many of us MPS I pts where initially diagnosed with or thought to have/tested for some form of muscle wasting disease?! I know many other type I pts who where diagnosed in their teens who tested for or dx'd w some form of muscular dystrophy or muscle disorder and I myself in addition to drs later wondering about connective tissue disorders was tested for and the question batted around about a muscle disorder called Charcot Marie Tooth (CMT) primarily due to the significant nerve issues in my hands and the changes in joints + cardiac issues.
Just an interesting observation I guess. Last wk I had fwd'd an article related to MPS I and Ataluran to my Lung dr as I know her interest is Cystic Fibrosis + I know this drug is also in studies for that. She emailed back that she hadnt been aware the drug was a potential for MPS I (but thought it was exciting) and that her Center was in fact part of the on-going trials w CF pts and this drug.
Sort of funny how my PMD once she found out about the Elmiron shared she has experience w this with several of her pts and is willing to manage it if I do opt to start it. Elmiron is another drug I am potentially going to start for MPS I once I see the Genetics dr in Boston as he is willing to prescribe it and my PMD thinks it's a good idea to try.
I have known about both these drugs (Elmiron, Ataluran) for some time and yet had no real clue 2 of my own drs have experience w the meds separately. =) Small world and goes to show really how in many ways, many of MPS's issues counter-cross to other disorders.
Will update again sometime soon, if your the praying type please pray the headaches would stay stable OR even improve - that would be AWESOME! I know some around me have commented "you look good, you must be feeling good" which is nice to hear BUT I also feel guilty then and quite honestly most of the time I feel like I can't really be honest about what I am really feeling. =/
Thanks for stopping by,

Sunday, February 15, 2015

WORLD LDN Meeting, FL., Positive steps in MPS I world!

This WORLD Lysosomal Mtng was actually the best one i've attended yet (i've been to 2 others) and finally seems like there is alot of excitement and buzz in the air regarding new/upcoming ttreatments for MPS I!
Thurs I had lunch with per the Foundation I work for regarding a grant they fund with AMICUS Therapeutics (John Crowley's Foundation, he was not at this lunch but did talk to him a couple times during the wk and he was at a similar lunch last yr at WORLD.
At this same lunch was a doctor who is now at Boston Children's Hospital/Harvard and who sees 8 or 9 other MPS I pts (in our world thats alot!) and of these has several on Elmiron the anti-inflammatory drug I have been trying to convince my Geneticist to look in to more (but he refuses to).
In any case this dr and I where talking and I was asking about the Elmiron in relation to the Coumadin (blood thinner) I take and he felt one has no impact on the other. After talking some more I mentioned I planned to be in Boston in April and would I be able to see him, would he consider prescribing this drug for me? Long and short of it is he asked me to email him my info and his NP is working out details now, she is working to set it for around the time i'd be out there.
It is always so nice talking to the drs who really get the genetics/metabolic aspect of MPS and who unlike my Geneticist are willing to consider thinking outside the box! I love how open to helping drs are in the MPS Community! I think in all honesty every dr I talked to said to me "If you ever have other questions please don't hesitate to email me"! So cool! =) In addition to drs I sought out or was introduced to there was a Research Student there who had gotten ahold of me on fb and who wanted to me. We sat down Thurs afternoon, his group is working on a form of Gene Therapy and he was just interested in general in my thoughts on it and my thoughts on various MPS things. He likes most Research Students or the drs was interesting to talk to and I think he was able to get useful info from what I told him.
On a related/un-related note this same dr (Dr.Bodemir) is likely to be one of the study site drs for the PTC drug trials and he feels this may start as early as summer. He feels the trial will be 8-12wks (or maybe it was 6-8wk) in lenght (so relatively short actually) and is a drug that those in the MPS community feel will cross the BBB and get in to the cardiac areas which ERT does neither. Ataluran is taken as a powder (mixed in liquid) 3x's a day.
Right now this drug is in Phase III trials for DMD and CF and in the UK is approved for use for DMD. The MPS I trial was originally slated to occur solely, initially in the UK but the new word at this mtng was due to not enough patients for enrollemt there (UK) it will now be a cross-continent study taking place both in the US and in the UK.
I do have 1 non-sense mutation and also participated in the original PTC skin biopsy studies at PENN (CHOP) a few yrs ago so am hoping those 2 things along w if I am an established pt of Dr.Bodimer's will help me get in to the PTC (Ataluran) study once it where to start!?!? Time will tell but I am praying! going out to see

On an different note, it turns out although our Hotel was offite (Ritz Carlton, about 15mins drive) that the people I work for (their Foundation) in addition to paying for a hotel room for myself and for themselves offsite paid for a rm each of the days we where at the WORLD Mtng (held at the Hyatt) so we'd have a place to hang out/nap or do whatever we wanted in between sessions we where attending and other mtngs. Weds and Thurs. there where several long breaks between relevant talks so this was reallly, really nice to be able to go up to the room if we wanted!
A fairly newly diagnosed MPS I Adult friend of mine (she lives in Orlando) was at the mtng so she and I hung out some, attended some of the sessions together and Weds night went offsite and had dinner together. Awesomely enough the people I work for arranged a car service for anything I wanted to do and going to/from the airport or hotel to hotel when they and I where not together.

I defintely did not feel great in the mornings and night but could move at my own pace and I know myself well enough to know how early to get up or how to sleep to semi-help and for that matter know some of the things besides Zofran that help calm my stomach. I'd defintiely have loved to feel tip top shape (alot better) and thus have had more energy BUT I still had a good time! The weather was NICE! Humorously people kept saying "it's cold here today" (breezy but not cold!) which that weather was a peach compared to what i'd left and especially what I came home!
This week is a little busy with several appts., Lent starts Weds and we also have a SS Teacher's mtng Thurs night. I believe it is Thurs I see Dr.Bragg so I am praying we could sort something out w these headaches/sciatic symptoms (I am 100% sure it is related to the shunt stuff now) and associated symptoms.
On an un-related and very quick note I ran in to an old friend of mine from Genzyme, he was our MPS I Marketing Director when there still was an MPS I dedicated team and once Genzyme was bought out he along w the majority of that (marketing) team was quickly let go. Although we'd emailed occassionally this was the first time i'd seen him in yrs! He actually same me as I was walking out of a session and hurried to catch up to me. Super neat to see him and now we have each others info again. The MPS I Team really hasnt been the same since the Genzyme buyout/merger, not much if anything really gets done these days mostly I imagine due to funds being cut.
In any case i'll update soon, perhaps later in the week,
Thanks for stopping by,

Thursday, February 5, 2015

Shunts, Cardiac stuff, WORLD Mtng (FL.)

Febr. 28th is Rare disease day and Congenital Heart Disease Awareness Wk 14-20th

This has been a really quite interesting (not really in a great way) couple wks with these headaches; I am not sure what to make of them but they are occurring off and on throughout the day in the same pressure pattern except there is also an almost migraine like component along w the intermittent pressure causing mild vision distortion.
The headaches when they occur while being widespread throughout my head also tends to be centered on my forehead (2 headaches in 1 really) which this in and of itself is similar (but milder) than the headache I got when the VP Shunt completely failed a few wks ago and as well same as other times when it failed. I don't by any means think the VP isn't working just that this is weird!
One thing I've been able to do to mildly break up the headache when it seems like it is going to get pretty bad (but I don't think it would get as bad as when the VPS completely failed) is depress the reservoir on the shunt - this is the little built in device Dr.Bragg uses when she taps the shunt or draws of CSF.
The one day I was not at home and was a little desperate to try and improve the symptoms as I needed to drive home from an Appt I was at and seemed like a relatively simple thing that shouldn't I wouldn't think affect the shunt since I only do it once each time the headaches get pretty bad.
Needless depressing the reservoir did help the headache and symptoms that time and other times since then atleast enough where I wasn't as nauseous and could focus and feel pretty human - human enough to do whatever I was in the middle of! I truly think there is something wrong w 1 of these shunts as this is not my 'normal' at all.
The headaches after I saw Dr.Bragg last Monday came back by Tues and have been the usual worse in the morning, worse at night, better but not perfect the longer I am up though as mentioned above they have been different than is my otherwise 'normal'. Symptoms feel a lot like my head is swimming actually.. I am trying to read a realllyyy good book but can only read a little bit at a time so I typically read, take a break, come back and read for a little while again. Thankfully talking to Dr.Bragg as hard as it is sometimes I have confidence she believes me and isn't giving up. Hopefully once she returns from her vacation (to FL ironically around the same time I will be in FL.) and I am back we can figure something out.
As much as I am looking fwd to the WORLD Mtng I admit I am a tad nervous as the meeting is at a different hotel than where I and the people I work for are staying at so it's not as if I could just go up to my room, take a nap and come back to a session if I wanted (not as easily) this time! Other than logistics being more difficult I think the overall meeting will be good.
I kind of wish I didn't have ERT on Monday as there is a satellite session by PTC Monday night on their drug Ataluran for MPS I and the studies for this that I would really like to have gone to! It is nice to always catch up in person w the varied MPS docs who I bounce questions off of throughout the year and we have a Lunch w Amicus (Therapeutics) on Thurs which I am really looking fwd to though.
MPS Awareness, Rare Disease Awareness, CHD Awareness

Infusion Site
The new infusion site at FMLH cont's to go well, the one thing that gets on my nerves but has nothing to do w the Nurses or Staff (who I really like) is they are required to do vitals ever 15mins (every time we initially ramp up) the 1st hour, though we initially ramp up over a 2hrs-every 30min. run. and then they still have to do them at minimum every 30mins-1hr over the 5.5-6hrs infusion time.
Definitely gets on my nerves! Thankfully the Nurses and Aids and Pharmacist really are nice, nice to talk to and humor me.
Overall I feel blessed with really great Nurses who genuinely seem to like me at this new Infusion site. - I admittedly am still always amazed when Nurses I've met once or twice make it a pt. to either get assigned to my care the next week or stop by to chat and check in on something we may have talked about the week before (an upcoming appt, symptoms or just b/c "I wanted to say 'hi'")! I love that the Nurses like me and that I still get to see my former infusion Nurses when doing INR at CHW.
Cardiology, INR
Nancy, the NP in Cardiology (ACHD Clinic, CHW) called with the INR (blood thinner result) Monday and I am always amazed how well she and Jane (Dr.E's Nurse) and Dr.E communicate, share news with each other. INR approx. 2 wks out from surgery cont'd to be low so they opted to up the Coumadin dose which will now be 6mgs 5days and 4mgs 2days with re-drawing labs before ERT in 2wks.
I guess what it comes down to is compared to my 'Team' of Providers when I first really started this post-MPS diagnosis vs now is like night and day, and as much as it gets tiring forever seemingly having something going on I genuinely don't mind working with these Providers. I dislike having to ask for help but even that if I have to do it I am glad it is with this group of Providers whom I trust!
I can't say I really get it (yet I do) but our having slowed the ERT Infusion rate to 5.5-6 hrs (this is ultimately what it has ended up being at each week now) has really helped the breathing issues. While it's not perfect it is better then it has been in awhile. Also cutting down on how much fluid I drink in a day significantly has helped.
This where I used to make it a point to drink as much water as possible now I try to drink as little as possible (figured this out almost by fluke chance) and the difference is oddly, weirdly good. Ironically it seems restricting fluid has affected feeling lightheaded/dizzy at times though at the same time I am unsure if this is due to cardiac or is it more of a shunt thing or perhaps related to both.
Fluid does seem to be re-accumulating in my pleural space so it is possible it is a pressure related issue more so than Cardio. Just another annoying issue to sort out.
Is it related? Pain Mngmt dr., Sciatic discomfort, TPL Shunt
On a shunt related note I've thought for a long time that the L leg ssciatic nerve type pain was somehow related to the Thoracic Pleural Shunt and last mont the days leading up to the VP Shunt having quit and then especially that day it quit make me really have no doubt it is related. Similarly when we fixed the VP Shunt in Nov. the symptoms improved and had mostly went away which is what led me to reallly think there was a relation.
I was talking to my Pain Mngmt dr who has felt there was likely some kind of tie in for some time about all of this today (I hadn't really thought to mention it to Dr.Bragg but will at the next Appt) and Dr.B feels where there is excess pressure placed in the spine and perhaps the catheter is expanding or if it is sitting near a nerve that is causing spine nerve irritation and the intermittent leg symptoms I experience.
Somewhat curiously I posted about this on fb and a friend of mine who also has 2 shunts and has had numerous issues (non-MPS, does not live in WI) mentioned she has read quite a bit about spine shunts for hydrocephalus and pts having issues w on-going leg irritation. Atleast I know I am not the only one then!

Thanks for stopping by,