All in a days time..

Just a quick note that I spoke with my neurosurgeons office this morning and neurosurgeon is out at an outreach clinic on weds but was going to try her hardest to give me a call today - or otherwise if not today then perhaps we can catch each other tomorrow - I am hopeful she will have some cont'd ideas as these headaches are exhausting ie literally make you very tired some to do with the autonomic secondary affects of the pressure itself.  Ive also been trying to read various articles I can find on intracranial pressure issues and hydrocehalus over the past 3 or so days in spare time and have come across some really interesting articles that have made me think of some interesting questions. (one question I have is if ICP can be different in different regions of the brain ie could the ventricles have higher pressure (especially in MPS pts due to the build up of GAG storage on the vetricles making them rigid) than say the parenchymal areas of the brain which from what I understand is the area underneath the skull that bathes the brain in Cerebrospinal Fluid (CSF)? This is something I wrote down to ask and am very curious about.

Monday I did in fact make it to madison for the MRIs quite early with the first ones originally scheduled at 7:00am and arrival time at 6:30 which required getting up at 4:00am due to living about an hour from the hospital. Needless not to long after getting there many patients who where also there for MRI where getting called in ahead of me and I was waiting and waiting and waiting so I went up and asked the secretary if something was going on - long story short one of the MRIs was down -apparently UW only has 2 and I happened to be scheduled on this 2nd MRI so they wanted me to reschedule - when I told them I did not live in town and 2. more importantly that my neurosurgeon wanted these images very soon they then asked me to wait a few hours (why not ask the patients scheduled after me to wait instead of me having to wait while patients after me but on the different machine got in???)  - well needless not only do I live outside of UW area but I needed to get down to CHW another 1 1/2 hrs away for my monday weekly infusion (and mons are the only day we can do the infusion) - I was a whee bit frustrated by this point but 2 1/2 hrs later they came up with some solution and I got the images (cspine and brain) done and talked to CHW genetics and they said it ws fine to come late if I could get there by 11. On my way to Milw I hit a traffic jam and mde 1 mild wrong turn but pulled in with minutes to spare. By the time I got home mon night I was exhausted and was in bed by 6:30-7. Crazy day!

Today I was at UW again although one of their clinics on the west side of madison and seen the GI docs about the bowel issues post-may's surgery (neurologic related likely similar to the bladder) and will upate on that a little later tonight or tomorrow here but in the mean time am running off to my sisters for supper. I also have to write something about neurologist as very confused about this whole management.

----
So I am back and had a lovely time catching bugs with my nephew and talking with my siste while also watching Z interact with Bella my little neice - the changing dynamic there now that she crawls (7mo) is so cute and Zander you can tell likes to try and be helpful.

So about the neurology thing I am really confused normally I would see my neurologist every 6 mo and tomorrow was to be one of those appts. Her office called today to cancel saying my neurol. didnt feel I needed to come in (all for consolidating but there are alot of things this dr helps with separate from the headaches) bc my neurosurgeon was managing the shunt issues. I am very confused on who is supposed to be managing the autonomic side effects of this headaches as well as who is managing/watching the spine issues that occur commonly in MPS (for instance the spine issues at lower back probably it would seem should have been caught before my neurosurgeon got the surprise and had to unexpectedly deal with this problem on top of the shunt repair in may but bc no doctor of my orders MRIs or is managing these issues the problem was never caught. Genzyme the maker of aldurazyme recommends MRI films every 1-2 yrs and yet ihave all these drs and no one person managing them...I guess I am just confused on why neurology wouldnt workwith my neurosurgeon and as the patient with issues I know need to be managed what do I do?  I am wondering what other MPS families do...

I will update when I know more - in the mean time I did start a different pain med last night nad weaning off of the avinza (long acting morphine) and MSIR though I can tell there does need to be some kind of short acting break through med with this patch. So far otherwise it seems to work ok - big problems that will be the bane of this use will be if I break out from the adhesive - the patch is worn for 7 days so I am hoping by some small miracle this will be one patch I dont react to as I do to almost all IV tapes, lidoderm, flector, tegaderm, and other adhesives. We'll see!

Please say a prayer I hear from my neurosurgeon tomorrow I am hoping so and that she has some other tricks up her sleeve to help.
Take care,

Erica

~ The greatest loss of time is delay and expectation, which depend upon the future. We let go the present, which we have in our power, and look forward to that which depends upon chance, and so relinquish a certainty for an uncertainty. ~

Life is short, art is long, opportunity is fleeting, experience is treacherous and judgement is difficult. Hippocrates

Post-op Neurosurgery Appt - unclear

It's been a few days since I got out of UW and since the ICP was removed - sorry for the lack of an update or any news what-so-ever. To say this has been a long week might be putting it mildly - ive had really unusual symptoms from this diverse feeling like I had a really tight hat on but from chin up to surrounding entire head (or as if wearing many, MANY headbands) as well as pain or numbness or tingling (some combination??) in my hands which is very unusual might I add! These symptoms have been going on all week but have seemed to lessen with each day which made me just think it had something to do with friday's surgery but then at the same time I have still had these headaches that are worse with laying down and improve somewhat with standing up so I didnt think it was low pressure. ...

I saw my neurosurgeon today for normal fup and was talking to her and her NP about all of this to which they are pretty concerned and also fairly mystified. With my type of shunt it can cause brain herniation (the brain actually is pulled down into the tonsils or brain stem or something to this affect). but the symptoms would normally be improved with laying down and worse with standing up not vice versa as I am experiencing. My neurosurgeon has ordered MRIs which will be done early mornday morning (may turn in to one of those days from hell as i'll have essentially 2 hours of MRIs at UW, then drive a little over an hour to CHW in milw for my 4 hour ERT infusion and a 6 month genetics appt after this infusioin and then the hour drive home from milw - and the drive to UW in itself is also about a hour. May I pull my hair out already? I often wonder why I do these things to myself but in reality the rest of the week is pretty limited on what days I could otherwise do the MRIs and I dont want to reschedule the other appts and meetings I have the rest of the week if possible. My neurosurgeon is cont'ing to talk to some of her colleagues and wanted to run these symptoms past them while also gathering some other info and said she would call me within a few days of the MRIs. Another reason to get them as soon as possible is the sooner we know if it shows something or not and hash out whatever plan happens to be next. I made the joke to my nrsgn that just sticking a straw in my head sounded awefully appealing and she kind of laughed and got this look as if we'd just come up with a really great idea. (could you imagine - ooh Lord though my twin brother and I frequently joke about this and how his tools arent that to different than a neurosurgeons we're obviously joking and I was just joking much the same w my dr which is something I really like about her - humor is a good thing! (sometimes without humor to look at a situation what else do we have when you feel terrible!?)  So anyways she then brought up about how even though she had promised no more monitoring devices she wondered if doing a EVD (external ventricular drain or what is often used in head trauma cases while the brain swells and till it returns to normal to drain fluid). This EVD she said while usually placed in people awake she would likely do in the OR under general given my ventricles are pretty small and she wouldnt be able to judge ahead of time what equipment she might need to place it and not all of this could be brought to a patients room as is anyways. This EVD would be able to give us an idea of what I felt like with CSF (cerebrospinal fluid) draining directly from the problem and might give us an idea how my body would handle a VP shunt. There's no certainty that we will end up doing this it's just one possibility.  She talked about how I might be having these symptoms now of numnbness/pain and other symptoms as the dynamics of my headaches and situation have changed since the shunt was first placed 4-5 years ago and so what was right then might not be the same "right' now. - I dont quite know how to paraphrase her words so those are strictly my interpretation of what she told me. She also said that in the end we may need to go to a VP shunt but her goal would be to get rid of 1 and only have 1 shunt overall vs having 2 in place. Im not sure if she ment she would just tie off one shunt or not, She also talked about our goal is to get these things figured out so that we dont go in to 2012 still trying to find answers and so that only the summer hopefully ended up being fulll of these surgeries. She asked what she or her team could do to help while we try to find answers and I honestly didnt have an answer - if it where pain we could treat that but it isnt really so much that as it is the sensation of pressure and that is not an easily defined/helped issue. I do appreciate though that she recognizes while I still can smile and joke I am feeling pretty terrible alot of the time and just her offer to try and help in some way speaks miles about the type of provider she is.

I will update when I know more - in the mean time I have been reading a few good books, working on APF - Sept Pain Awareness Month activities - I pray nothing we do gets in the way (although honestly I guess I also hope for answers as soon as possible) but the 2nd week of sept I will be at UW doing our educt'l table for 3 days and the following week I was asked to have a table at the Walk/Run for the APM-APF event in milw area and we are also cont'ing to work on our Peds Pain Awareness meeting for UW though that is a ways out. Earlier this week I also after infusion monday went to my nephews and filled up on lots of Zander time as well as seeing my sweet little neice (7mo) Bella. - Totally worth how tired I was to see those 2 and Zander always says the cutest  and funniest things to make me laugh and remind me why my life isnt so bad. Sure the physical stuff stinks but the emotional part of my life is filled with lots and lots of little tykes to remind me that one day at a time isnt such a bad thing after all! This weekend i'll see Zan and Bella again as well as my older nephew Quinn on sun to at the car show here in town.

Will update when there is something new,

Erica

In-patient 5, Post-op 3 Discharge

Day 5 in-patient, day 3 post-op - ICP monitor removed earlier this morning - I do NOT recommend having staples placed while awake - holy sh*t did it hurt and already in a frustrated mood makes it worse. Neurosurgeon wants to see me later this week and in mean time she is talking to several more people including her Nrsgry chiefs from Primary Children's-Utah where she trained... Wants to see what their thoughts are on the next best step if H/A's not improved by fup this week. She is concerned the reservoir and lumbar catheter are not working as reservoir cont's to not be useable to tap CSF fluid off. Head feels like I have a giant helmet sitting on it top to bottom. We'll talk at fup later this week and beat out a next plan. She'd like to try atleast a different lower resistance valve before scrapping LP and moving to a VP shunt. Not frustrated at nrsgn or anyone in particular just frustrated at situation and wanting to feel better - to get to the place we where in May/June.

I'll finish this post later today or tomorrow but please say a prayer we find a answer soon - that I can find peace in all this and that my Neurosurgeon is able to get some great ideas from those neurosurgeons she trained under and whom she works with. I trust her and feel she is trying her best and not giving up I think it's more that I feel so crappy and am trying to find a way to come to peace with what this all is. I know God is a good God and i'd never question his intestions but some days admittedly it is hard to see what possibly I could learn from these up and down trials.

Will finish later,

Erica

Neurosurgery and shunt news.. post-op 1 day 4 - NICU

So I frst have to apologize to those who read this because again I dont know who all reads this. My neurosurgeon stopped by this morning and she first asked if my parents where with me yesterday during the surgery (waiting) and then she was so apologetic for not having gone to talk to them saying that even if the general surgeon talked to my parents it is still her feeling she likes to talk to her patients family. I love how honest and down to earth she is! Then this is where I feel a little guilty she also apologized saying she had come up to NICU last night to talk to me but I was asleep, she thought this was around 6-6:30 and she said she hadnt wanted to wake me feeling that she shouldnt take her patients sleep when they can get it. I as a patient sometimes just need to learn patience - I know what a fantastic dr she is so I should not get to frustrated - although I dont think my frustration was with her it was more with just not knowing  what lays ahead in general which is always one of my hardest things. I am totally not a perfect patient!

So this morning when here, her and her resident wanted to tap the reservoir in my shunt to pull of cerebrospinal fluid (CSF or the fluid that bathes the brain and spinal cord) to see if this again releived my headaches like in the past and if so where my ICP readings where at after this so she had an idea of what valve she should best look at. She mentioned she is again talking to the 2 companies who make these valves and going to get their opinion on which one they feel is the best for my situation and which one will provide the best but least reistance low pressure wise. I commented how several people have looked at my ICP numbers in surprise (they are very low) and been surprised that I dont have  a low pressure headache and she said as we've talked about in the past that she has other patients with the same situation and just requires finding the right setting for getting fluid off to maintain those levels. In the mean time when she tried to tap the shunt reservoir and get fluid pulled off she said the reservoir appeated flattened instead of the normal dome shape and she worries that the catheter from the lumbar spine to the reservoir is now not working for some reason. She said I dont have the fluid build up on my back as they where able to visualize that going down when they fixed the peritoneal catheter portion of the shunt in surgery yesterday and tapped the reservoir to assess flow. She's not sure why it would not work now. She has ordered a shunt series (xrays) for today of the shunt and wants to try again tomorrow to pull off fluid and get a baseline of what my pressures like to be at H/A free and watch the ICP numbers as the pressure comes back. This would help her with her choice of valves for the shunt. I currently have a Horizontal/Vertical (H/V) medium pressure valve and her thought is this provides to much resistance to impede enough CSF getting through and we need the lower pressure setting on a different valve. Im not sure how long this all means being in the NICU and hooked up to this ICP monitor at the moment  and any of this could change.

They also pulled of the last steri-strips from the 8/9 surgery on my side incision and took out the stitches on my lumbar spine and the glue she also placed she said would come off on it's own.  The incisions from yesterdays surgery are really only sore with some positions and when going to the bathroom. Going to the bathroom is also an interesting feat given the bladder retention but has been slowly improving since yesterday a little and I also am on a new bladder urgency med to help that we are hoping has less side effects. With the general ansesthesia yesterday even despite anesthesia using the device(s) they did that allow them direct visualization of intubating I do get a sore throat/irritation and dry irritated lips - this combined with the vesicare (anti-cholinergic) medication side effects of dry mouth makes for one interesting feeling as far as throat irritation and the combined feeling of acid type and dry is very strange!

I will update again when I know something - perhaps not till tomorrow sometime.

Communication, patience, Communication and providers

So let me preface this by apologzing to any one who reads this and who may be in the medical profession  - I know there are quuite a few people who get email notifications of this so again please dont take offense this is just my feelings and what I think now written in a way that I may be able to look back and learn what I as a patient could do differently.

This hospital stay has seemed to be full of people not quite sure of what is where - ive had super nice nurses and have no complaints what-so-ever about them I think instead it is about residents and about people coming in to a patients room and doing their thing without ever taking 5 seconds to introduce themselves. This is my venting about the pharmacy backwardness and what seems to be a really big lack of communication. And last it is about providrs being in one location and surgeries being at another facility in another city so communication break down happens.

I actually generally dont mind residents the ones that are aweful (thankfully all a good bunch on my neurosurgeons team) I tend to think they can learn a lesson or two but thankfully I can ask them to try to do little things such as just introducing themselves. I get frustrated when after surgeries the drs communicate with your parents but then dont come and talk to you - as the patient I tend to think we have differet questions than our family and that we deserve to know from their hands/mouths whatt they found and feel will happen next. Communication third hand or second hand is never the same as it is first hand from the involved providers. As pateints giving our bodies and our trust to these providers the simple little things do matter. And I absolutely get tthat providers have many other cases in which they likely have surgeries so maybe they cant come right after surgery but then even a phone call later in the day for 3 mins would make a patient (or atleast myself) feel better bc I would have an idea of what my drs are thinking as far as the machines and future such as discharge. Even if the plans change  in my opinion a patient informed is going to be a better patient than a patient un-informed nad stressed about what or when something may happen or discharge may occur. As patients we also often have to let other people know who may want to visit the following day or let our family know if discharge may occur soon. Again these things can all change and as a patient I believe most of us or atleast myself get that it's just the simpler idea of having some idea when things might improve, when things might feel better or when they feel you might get to go home.

I just feel like this - procedure and in-patient stay has been rather low on communication - the pharmacists seem to want to re-write the scripts to when they want to give it - for instance today I had surgery this morning so usually the norm would be to swap the short acting medication a chronic pain patient is on and switch in a new med so that the nerve receptiors respond better to covering the new acute (short term) pain - generally long acting meds are left alone and cont'd. For whatever reason with this surgery no one wrote orders for any different pain med and when I asked my nurse if I could have something of my own at home short acting med for the joint pain to try nnd help sleep or just be more comfortable she went to get this (I bring in 3 of my meds that the pharmacy doesnt have in stock and then these are kept locked in a separate drawer). So anyways she went to ask the pharmacist and whoever is here told her I could have the long acting med (not ment for acute pain is used for chronic pain to bridge the gap and prevent ebbs and flows in pain ups and downs). but not one of the short acting immediate release medications. I asked why especially since these are my home meds, my Pain dr has talked to my neurosurgeons team, i'd only taken 1 so far today and had just had surgery this morning to (!!!) so she went back out (this nurse is so sweet) and talked to the Pharm who finally gave it up - I have to say a perfect reason why if drs arent going to switch a patients meds post-op for a few days for better pain control then as a patient keep some of your own med in your purse! (I didnt do this). I just feel like soooooo, soooooooooooooooooooooooo many doctors and pharmacists totally dont understand chronic vs acute pain and that acute pain still should be treated differently in chronic pain pts. I had the very same conversation with the anesthesiologist about chronic vs acute pain this morning when I went down to the holding area for about 20mins from here on the NICU floor and I just was amazed yet again tha an anesthesiologist of all people wouldnt get the difference in these types of pain issues/control. Dont get me wrong this guy was also nice but I dont quite think he got it - sometimes I think when it comes to this stuff w/knowedgeable patients even if we are giving accurate information are still tuned out.

Im sure i'll have more to write about tomorrow but for now am having a bit of a hard time making ut what im writin so am going to try and get some sleep.
Night all,

Erica

Revision 6 - plan to be un-planned

I dont know much what to say about the surgery other than what my parents told me as my neurosurgeon hasnt been up to fill me in/talk to me (very unusual but guessing since I was a bit of a last minute add on she had a lot of other cases) and I also didnt talk to the general surgeon. Anesthesia was ok minus the really sore throar - they used fiberoptic which worked although I dont know how long it took. There are 2 new small incisions on my belly button (I do already have another longer incision here from the 2 umbilical hernia repairs so not sure if this new incision is above, below or around this old one).  The other incision is to the L of this and also covered at this point. Apparently this General Surgeon works with my Neurosurgen frequently when it comes to peritoneal (in the stomach area) apects of shunt problems. From what my parents told me they went in and with the scope found the peritoneal catheter was behind the stomach and stuck up against the intestine. It would have been to risky for them to explore the area and see the source of this problems so instead they moved the catheter out and re-ankered it in the peritoneal cavity. I asked tbe neuro-resident that has been working with my neurosurgeon these past 2 revisions about what lays ahead and she said that the monitor may come out tomorrow or sun and my neurosurgeon would make a plan with me. I admit I do really wish she would have come up tonight as I talked about ysterday the hardest part of medical care to me is th unknowns - the not knowing what is next or whne things will happen.

My parents have been visiting every day and one of my pastors from church also came today which was nice. If im still here all day tomorrow my brother and sis-in-law + niece and my sister and her family are coming down as are my parents.

Will update when I know something,

Erica

Understanding the unknown..

The hardest part of MPS has definitely always been those points when your in the middle of medical care and yet you don't know what the next step in treatment is or what the future holds as far as decisions go with your drs. Right now I am really struggling with this - struggling to put my hands at God's feet and let him take this where he may. Struggling ro understand this whole headache situation and struggling just especailly in not knowing what may or may not be ahead. I really struggle with not knowing what my drs are thinking and if they really believe me and am I being an ok patient; assertive and questioning but not overly annoying and burdensome on their time. Ive always been the type of patient if I have information and an inkling of what may be then I feek at ease - atleast a plan although it may change is a plan - it is this change and change again planning that I struggle as a patient to deal with because I like atleast some control and like knowing I suppose....

I am coming back to this post after having talked to my neurosurgeon and her NP (another of her team I have not met often but really like) and feel somewhat better about this all. I talked to her about my nerves with this on-going issues with the headaches and my basic fear that I would lose her to given my issues in the past w/keeping and finding good neurosugeons who really wanted to be a part of my team. She immediately responded saying that we where a team and she had no plans to leave me or abandon my care and that she would be with me every step of this way and she and I would start with the least invasive measures to try and get answers.  I adore her for this - I told her about how those of my providers who have spoken with her and/or her nurse Lisa also have all commented how well they like her team and that they thought she seemed like a really great dr to have on our overall care. She and her NP Sue both seemed really happy about this and to me it only seems fair to return a small ounce of how well they are liked considering how much she and her team have done w/sticking by me in this all. I wish all patients could have a dr and team like this!

Her plan is to cont to the ICP monitor and she commented how she could definitely see a difference in the ICP readings when I was sleeping/lying down as they rose vs when I am up-right and correlated to my headaches. When I am upright my readings are actually often in the negative numbers from 0 to -9 is highest we've seen but while most people would have a low pressure headache from this I get relief from the increased ICP readings laying down. I guess I always have to be the abnormal---- she did talk about this though the other day (the 1st of any neurosurgeon ive met!) that some kids and adults do better with very low ICP levels that would make other people have a terribl low pressure headache. She talked about draining off fluid this afternoon to see if my H/A's go away completely and when I talked to her about how the H/A's have been different since this monitor was put in she said some people get a little bit of relief after these are placed.  Tomorrow morning we head back in to surgery this time with the general surgeons at 7:30 and she and the GS will laparoscopically look at the peritoneal catheter and see if it is scarred or clogged in some fashion preventing adequate CSF (cerebrospinal fluid - or the fluid that bathes the brain and spinal cord) from draining as well as it should be. If it is malfunctioning im not sure what the plan is - im also not sure what the plan is if she/they dont find anything. Im less nervours but still nervous - cant help it - usually this stuff doesnt get to me but it's not the medical part that is getting to me it's the uncertainties!! I do still fel atleast better after talking to nrsgn about overall her involvement bc she has been such an integral piece even in such a short amount of time. (few months!)

I will post again when I know more  - thanks for joining or reading this blog and any prayers are always welcome!!

Erica

ICP monitor Neuro-ICU

Just a relatively quick note - the ICP monitor was put in this afternoon after checking in to admissions here at UW I calkled my neurosurgeons Nurse Practicioner on her cell who then had the resident and my nrsgn meet us up on the Neuro-ICU floor. The ICP itself from start to finish probably took 30mins and I was awake and able to talk to my drs during this time. The nrsgn placed the monitor and my neurosurgeon was at my side as comfort I suppose (which was nice of her, she really is very nice) while she was also able to see what the neuro-resident was doing. Ive met this resident before and really liked her and she to seems very down  to earth, honest and funny and just their letting me ask questions all through out was much appreciated on my part! I now am in the NICU and bored out of my skull - the ICP readings im not entirely sure what to make of and quite honestly just need to ask my neurosurgeon some questions. I just have no clue what happens from here and honestly am feeling a huge set of nerves simply from not knowing awhat the plan head of. Needless this has been a really long 2 days - it's like on 1 hand I know that when we take fluid off it helps beyond immensely and I know my neurosurgeon has seen this  and yet on the other hand I look at these readings and so I dont know what to think. Seriously just want to have answers and guess like I said just need to talk to my neurosurgeon hopefully tomorrow when she stops by (each monring and often later in the day as well)

Stay tuned - for immediate notification sign up for either email notices or as a follower to the right of this blog entry.
Please say a prayer,

Erica

Plans Change...Change Plans..

I cant help but feel a little discouraged writing this - I am one of those people who tries to be an eternal optimist ie finding the positive in every experience (that int to say im perfect and that I dont have temper tantrums bc admittedly when I get to tired or push my buttons to much and i'll tell you what I think it just may take a while!)  whether that experience is good or bad. I do think i'll come around and find some positive in this in some way but for right now I cant help but feel a little discouraged. That being said here is how todays appt went and I must say I this neurosurgeons team is quite exceptional - her nurse especially!

I saw my neurosurgeon earlier this afternoon and she came in the room and pulled up a chair and laid out a couple options she has been thinking over.She talked about having talked to just about anyone and everyone she can think of neurosurgeon wise for input on my situation and some of the feedback she received from these other drs elsewhere. The consensus seems to be that (and I cant disagree) we should try to look at the peritoneal portion of the LP shunt with a general surgeon through a fluroscope type device which this would mean several very (TINY!) small incisions but not actually having (if I understood it right, there is always so much to process that I never tend to think of all the quesitons to later) to open up the peritoneum unless they found something. While my neurosurgeon said she has tested the peritoneal catheter with each of these surgeries bc they use a long manometer to test how well fluid flows she said this may not actually represent the true patency of this portion of the shunt as fuid essentially is running in I think she said at a different speed and consistency than is normal with CSF flow through the shunt itself. The did the CT scan a few weeks back but she said others she has talked to feel this may not really show if the tubing is kinked or blocked by scar or other tissue.  

In the mean time she apparently is leaving surgery scheduled for fri but im not really certain of this bc she is admitting me tomorrow afternoon for 24-48 hours of ICP monitoring so she can try and get a sense of what my pressure reading is and then she said she would potentially drain off fluid after a day or so and wait and see how long before the headaches came back while cont'ing to monitor pressure. She thought by doing this pressure readings she could get a better sense of what type of valve would be a better fit ie she said some people are more sensitive and what would seem like a normal reading in other people is to high in them and she wonders if this is my case and would a lower pressure valve work better. (Again looking back I think I am remembering this right!) She also talked about the VP shunt initially asking if I was set on this given all the problems ive had with the LP shunt (I dont know what to feel about either type of shunt I guess I just sincerely hope we get answers and admittedly I worry a little about becoming to complicated where i'd scare this neurosurgeon off to - maybe it's a dumb thing to be nervous about but ive not exactly had the best of luck with neurosurgeons in general so even though I like her and love her team I cant help but feel this way deep down.) She felt that she would lke to try the least invasive and most apt to give us answers approach before we abandon this shunt and go to implanting a totally new system that in itself although less likely can open up it's own can of worms.  I just keep praying that we find something that works as seems to be my repeat mantra in this post - I know how bad it is when the shunt isnt working right/when the pressure is up but given no other person can be in my body I cant truly convey that to my neurosurgeon and so can only hope she does know. She seems to get it and comments frequently about the period where my headaches where gone after may's surgery so that is my cont'd ray of hope - I guess it's hard when you as the patient dont really know what goes on in your providers minds other than what they say to you.

I'll update either tomorrow night or thurs but please say a prayer we get anwers and can find a solution soon,
Thanks,

Erica

Revision # 6

Wow, am I exhausted or what? Icant even quite describe the feeling other than a mix of a bunch of rocks sitting in my head and/or a vice grips ever so tightening mixed with a balloon being filled from the inside out. This on top of just plain tired and a little sore (though back to just the long acting pain med and 1 short acting immediate release opioid generally 1x a day for the lumbar surgery and side incisions).  Ive been meaning to post the latest news since yesterday afternoon but wasnt feeling well at all most of yesterday and had other things to try and get done in those moments I was feeling mildly better. I never try to let MPS in general keep me from doing most of the things I feel keep my life semi-normal and I have been trying not to let the headaches for a long time do the very same to what extent is possible. The past month have been a little harder especially to the point I go to the store as little as possible (I LOVE grocery shopping especially) and have not worked as much on a  project I am doing for the MPS Society and have taken a few more naps due to getting up so much at night from the spine-bladder issues but I guess on the flip side I have been busy with a slew of the upcoming and current projects for APF that I just do in those moments when I do have a little extra energy nv it's these little things I love and that keep me going! With my neices and nephews having been here that also took up quite a bit of time so needless I have a pile of projects to catch up on. (I like it though and look fwd to these things).

So anyways  on friday my neurosurgeons secretary called and said she had been asked to schedule surgery and that she was working this out and would call me back in a little bit.  They have scheduled this next surgery for next fri most likely in the very early morning again (my neurosurgeon said she does this due to having to be next door for kids surgeries and so she doesnt end up having to push me till late in the day as she doesnt want us to have to sit around and wait for her. - I thought that was really nice of her to think of us like this!) -  Regarding scheduling this surgery by this point I dont think any of us expect that the swelling in and of itself is going to affect the shunt enough to cause it to work well enough (ie we hoped once swelling went down from tues's surgery that the shunt may flow better and more fluid get through thus relieving headaches) in letting Cerebrospinal fluid out and pressure down. This could always change but im not getting my hopes up and am being realistic at this point. I see her for fup appt on tues regardless for fup from last tuesdays surgery and to map out our plan and go over any questions I have. She had scheduled this appt for tues bc of my having ERT mon (now it will be especially good I didnt skip ERT to see her mon since I may end up missing the following week depending how long I am in the hospital) and the appt is at the end of her scheduled appts so she would have time to talk. I am unsure if she will still do a shunt tap to draw off CSF and relieve pressure for a few days since surgery will be fri - I will ask her though as it would be so lovely to feel good for those few days leading up to fri so I could get more done! I know I have probably not taken it as easy as I should have after this past tues's surgery but I just want to get things done in the time I do feel atleast a little better and even when ive felt bad at times have just wanted to get out and do something! I cant take being at my apt for more than a day and even that I go near stir crazy! Since the shunt tap would oly take about 15mins  I am  uncertain if she will do it - one reason I could see her not wanting to is due to the incision healing and if tender and she is very up on not causing addt'l unneccessary pain when possible.

While im disappointed to be doing yet another surgery I am very thankful this dr believes me, is well versed in hydrocephalus/it is one of her main interests and that she wants to help.I havent quite decided how I feel about the whole situation ie not about my dr or anything but more about these headaches in general and hydro in general.  I think it does frustrate me how much of summer has been captured by these surgeries but I dont feel any animosity what so ever towards my dr - if anything I am grateful to her for sticking with me when no other dr would with this and I think it's more a little sad in a way about the little things im missing out on with family like the fairs and plans we had but at the same time I do also very much know that there is always another fair, another family plan (our vacation in Oct for instance and many other things we will do before then after this surgery) and another summer that will be less filled with surgeries and recoveries god-willing so I chose for now not to let it get me down other than a fleeting sadness here and there.

Like I said above ive always tried to find a sense of  'my normalcy' despite MPS and though it may seem abnormal to other people not living with something like a disorder as MPS I actually enjoy my life, enjoy the family and friends I have, enjoy the things I am a part of. I enjoy the time I get to spend with my neieces and nephews epecially - they are such beacons of sunshine, funniness, silliness and when im not around them but need a reminder of the little but great things i'll often do something as simple as watch one of the videos on my phone of any one of them. Their phone calls when im not with them also make me laugh, smile and giggle alittle bc im not sure how I got so lucky to have such cute, cute nephews and neices whom adore me and whom I adore very much!?!?!?!?! MPS may be a sucky disorder but it doesnt have to mean a aweful life. Balance and finding something you ttuly enjoy are key. Working with people (providers especially) you dont mind or whom you get along with well is also so important in a disorder like MPS!
 Today I spent the morning and part of the afternoon with my mom and sister out and about in and out of the car all day on our feet and then went to my sisters where I spent the rest of the afternoon with my nephew and tonigh this same nephew is spending the night here so needless I am exhausted on top of these headaches which truly do feel like they kick my butt at times. Tomorrow will be a car show all day so while not as much on my feet it also is outddoors all day and alot of in-between on the go so once Zander is in bed tongiht I am going to try and go to bed myself early. Ive been getting up again 5-6 times a night so every bit of sleep in between is welcome. The rest of the week is equally busy with doing  as much as I can get done while trying to balance these lovely (sarcasm) headaches. Monday is basically all day at ERT, tues i'll have to try and get some things done for other committments I have with APF before heading to Madison for the appt with my neurosurgeon at 3 to decide on what our plan wll be with this plan ie one of the other LP valves or move to a VP shunt. Weds is an separate non-surgery appt in Milw., thurs is free so far and friday is surgery again.

On a slightly funny note since I am at my apt and live alone ive had to improvise and figure out a way to cover and then re-cover the 2 incisions on side and lower back before and after showers each day - anyone who knows someone with MPS knows we dont have the most flexible bodies.. So after surgery both sites where covered in gauze and tegaderm (I get very itchy to long term tape) and so ive cont'd to do this same thing for showers. Tegaderm in and of itself when you can see where you putting it well is not always the easiest thing to apply - needless i'll admit I had a slight temper tantrum this morning bc I was so tired and in a hurry to get in and out of the shower and so irritated at the tegaderm which just wouldnt co-operate. I got the  side incision covered for the shower and afterwards as well (why I didnt just leave it with only the original 1 top of tegaderm each day for the shower is beyond me instead of applying essentially 2 barriers to prevent water getting to the stitches and glue and thus much harder I dont know!) So I get to trying to cover the lumbar incision and messed up the first dressing before even getting close to my skin this again essentially while doing this blind/feeling only the top/bottom of the incisions since I cant hardly bend to the side to see well enough as im trying). 3 tries later I got the gauze on after applying it directly to the tegaderm thus freeing one hand and got the tegaderm on to albeit pretty crooked. All to start over again tomorrow.. Eeek I dont think id ever be hired as worlds most flexible or coordinated!

I will try to update after tuesdays appt with our plan.
Take care.

Erica

Post-op 2 - Headaches cont but how sweet that sleep was!

Post-op day 2

So Home sweet home as I wrote last night - im at my apt which is nice. Sort of a low key day today. -  I slept through night last night literally for the first time in I think atleast since may! -  I did accidentally take an extra dose of  the Detrol LA and  the flomax so I wonder  is that what did it  since that helps control spine nerve damaged bladder issues or was it that I had only slept 4 hours tops the past 2 days and very little sleep any day before that? I am thinking a combination but more the meds bc ive had very little sleep for so long and there was the incisional discomfort (not really pain just discomfort with laying on my back or on the R side that I could only sleep on my L side and I literally woke up in the same position I fell asleep in???? I nomrally make such a mess of my bed bc I toss and turn so much for various reasons... I am still super tired today but was awesome not getting up 8-9-10 times last night for sure especially with the discofort of trying to fall back asleep! I am going to go back to my regular dose tonight and for a few days but if getting up constantly again like I emailed my 2 primary providers (MD and NP) in the core-group provider email if it goes back to getting up multiple times a night maybe i'll call my Urology drs nurse and talk to her about trying a higher dose. We'll see!

Ive been neglecting other areas of my care since may (didnt get the last 3 month series of botox in my thoracic, cervical and shoulders (about 33 injections), last year I had decided id wait about a year for healing on my right hand thenar tendon transfer surgery recovery because it takes so long - while that isnt noticeable to anyone else I can definitely notice a difference between the days after surgery, when the cast was removed at 8 weeks, to when the splint was removed 3 months later to now in both the finger where the tendon was taken from (better flexibility again and less stiffness) and the thumb I think is stronger. Anyways I think the L hand needs to be done and also have numbness there but just have been putting it off. I'll probably at the very least schedule an appt with my hand surgeon for the next month or two but not sure when i'd do the tendon transfer if he still thinks it's needed. I also have been putting off the visit to the Ortho-hip dr in Mn which my Ortho drs here in WI (FMLH) thought would be a good idea to get his opinion on the femoral head and neck thinning/cyst changes and the bony issues. I did today schedule a 2 -  2 1/2 month appt with my P-MD (the NP) which we are going to do every 2-3 months now so my care can be better managed and they are in the loop (every 3 months I will see the NP and the other 2-3 months I will see my actual internal med dr since both are very involved in my care - I really think thats will be a nice set-up.) They will be able to help me manage getting tests like the MRIs that genzyme recommends every 1=2 years and other things in order.

The beginning of Oct my family is taking a vacation to the Mississipi with my parents, sister and her husband + niece and nephew and my 2nd oldest brother, sister in law and niece for 4 days. I think we are all really excited to do this together and will be nice to get away given all the craziness this summer really has been!

I also have a slew of APF activities coming up including interviewing a potential new APFAN leader to join what we do in advocacy and to work together with. Up to this point the other WI leader and I have done nothing together essentially and she isnt real involved so it would be great to have new blood to our team! Some of the activities and events coming up here in WI mostly for Sept Pain Awareness month include: cont'd planning for the joint APF/UW-AFCH Pediatric meeting at UW Hospital, an APF PAM display outside of the cafeteria at UW Hospital the 1st full week of Oct tues-fri, (we also did this display last year although I did the behind the scenes work and then ended up having the tendon transfer surgery moved up so others took over for me). This display includes materials on what w do at APF, becming a member or wht our leaders do. Materials for providers and patients alike on various pain topics (we have quite a large variety of well put together journals, hand-outs, materials, etc. along with our business cards.
-Towards the end of Sept there is a Walk/Run being held in Greenfield with Advanced Pain Management 0 a WI wide pain group  I have worked with for about a year now and all proceeds from this will be benefitting APF. We also will be having a disply table with our materials.
-We have our Sept Pain Proclammation for WI signed by Gov Walker back in June designating Sept as PAM.
-The 3rd week of Oct those of us leaders in the central and eastern regions will be having a training conference in Albany, NY jointly with the medcal center there of which I blanking of hand (a very well respected university).

The Incision pain really hasnt been very bad - I do have to cover the lumbar and flank incision for the next 5 days till I see Dr.Bragg on tues. The side incision where valve and reservoir sit are closed with glue and the back incision has stitches which I think will dissolve on there own. If anything pain wise the most of it isnt at either inision site but in between the incisions more on my back/side in between the two points as this is like a sort of stabbing feeling which is quite unusual to say the least! The headaches are the same no change - there is swelling yet so I dont know maybe the headaches could still go away it's hard to say really. I talked to my neurosurgeons nurse this morning and I must just be a dead give away voice wise because she just said something along the lines of your not feeling good are huh?  I will probably check with my nrsgns secretary tomorrow to see if she has put in a tentative surgery date then which day would it be so  I could let my parents know. Thankfully their work is so accomodating to my medical issues and would let them off at the drop of a dime if need be. One of the other symptoms ive noticed lately with the headaches is my vision I have a hard time reading things like the screen without my glasses on but the small weight of the glasses just adds to the feeling of the pressure. Nuts! I do also think the vision issue ties into how tired I am but since I rarely sleep good I can quite fix that part and refuse to take some kind of sleep aid other than drinking things like tea w/out caffeine.

Side incision - reservoir and H/V valve

Lumbar incision (fixed the loose catheter w/butterfly stitch and closed the pseudomeningocele (fluid build up) leak. Just a small portion of the incision from May had to be opened and closed w/stitches.

I'll cont to keep everyone updated - take care,

God Bless,

Erica

Post-op 1; Day 2 Revise that Revision / Discharged Home sweet Home!

So my neurosurgeon came by tonight and wrote the discharge papers - 3 hours later and I was released from hte hospital - rhat was about 9-9:30 we got out of UW! She had come by around 6! She asked me what would be a good date next week early in the week to see her and bc I cant do mondays (infusion) we agreed on tues and she wrote me in to her phone calendar after some other patients she made special appts for. She said this time slot woul give us more time to talk and go over our thoughts, decisions and questions for each other. She also said I should call her nurse Lisa tomorrow (thurs) and she would tentativelly probably pencil me in for surgery either on weds morning (a normal clinic day for her but she is free that day or thurs morning) and the swelling has decreased by then and my headaches go away we would just cancel the surgery date. I am so increduby thankful to her for how out of her way she has gone to try and help me and for taking her time to talk to me and to set yp surgery if we do need it on a day she doesnt have hee normal schedule!

Her plan would be either 1 of the 2 LP shunt valves or tie of the LP shunt valve at the lumbar incisio and we go straight to the VP shunt and she could try she said to take the VP shunt catheter and when tunneled down to my peritoneal cavity unattach the LP shunt flank catheter and reattach this peritoneal cathether from the old shunt to my the new VP shunt. She couldnt guarantee this would work but thoughgt it might! She said she would have to tie off the LP shunt bc two virtually competing shunts would cause very many problems with headaches and I imagine to with spine issues.  I have the 2 dressings covered yet and the lumbar incision has actual stitches so those will dissolve on their own and the R flank incision  will heal and the glue dissolve on it's own.
U;ll update again when I know more or with more news,
Take care,

Erica
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So my Neurosurgeon stopped by this morning before her clinic and we talked for about 10mins. She is also coming back this afternoon so she has more time and we will lay out a timeline or plan. I am so tired right now (1 hour of sleep monday night and about 3 hours tops last night) so I apologize for sp errors and grammar. The more tired  I am and the headache combined also makes for worse vision making it harder to see clearly what I am writing at times.

She talked about giving this surgery revision a few days to see if the swelling along the lumbar incision to the flank incision decreases and see if this then causes the CSF (cerebral spinal fluid) to better drain through the shunt.  Swelling could be preventing any CSF from getting .through the valve right now. Though ive not had that problem in the past - with all the past revisions I either had low pressure headaches initially for a week or I had immediate relief of the headaches. She thinks though like I said yesterday that May's revision and initial 4-5 week H/A reprieve has more to do with that fluid sack in the lumbar incision inintially acting as a drain.   She also said she had 2 emails from 2 companies this moning that also make LP shunt valves - 1 is the company that makes my H/V valve and the other I believe may have been strata but cant remember off hand. One of those 2 valves I was wrong about when I said programmable valves do not work in LP shunts as she said the one company now offers this type of LP shunt valve. She did say if the H/A's dont go away we will weight the potential pro's and cons of another LP shunt revision (further scarring, also has the increased risk of failure still bc of catheter size and shunt locxation outside of/and below the venticles which is where VP shunts are placed.,) It is something im sure we will come to a consensus together about as she is incredibly awesome about making decisions with her patients not for her patients.

The other things where she talked about tapping the shunt today but was concerned with the pain this would cause due to the incredible swelling at the incisions and sio while it would be beneficial to get CSF off if even for a few days we probably are going to wait till next week to give this all time to heal. 

We will begin to outline a plan of action today and if no headache decrease/relief begin to put it into action at next weeks follow up appt. in her office. One additional thing she mentioned was tentatively penciling in a surgery date so she could get me as first case of the morning (5:30/7:30) and so that we wouldnt have to wait weeks to begin whichever approach we would decide on. Ths would allow her to be able to get a surgery date sooner and us not have to wait so long as if we didnt schedule surgery until after I saw her next week. She really seems to want to keep things moving toward finding answers. She talked to my parents yesterday about another of her patients who she has been revising the shunt valve on (not sure if a VP or LP) for many times now and just compared it to my case - how this little girl just had surgery last week w/my Nrsgn and also woke up with the H/A still thee and how she (nrsgn) was cont'ing to look foranswers for this patient of hers to.). If by chance the headaches would decrease and the valve seems to be working next week would then just cancel the surgery date,

I will update after she and I talk this afternoon.
Thanks,

Erica
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Post-Op 8/9 Shunt revision

So I copied this from my fb post and will add additional bits of info. My parents and I had to be at the hospital at 5:30 this morning (my neurosurgeon being as sweet as she is apologized and just said she had wanted me as her first case of the day and was being pressured to move me to later in the day due to other Peds cases she had). I fell asleep at 2:00 and woke up at 3:00, to my parents at 4 and we left my parents at 20 after 4.  The LP shunt revision this morning was fine though not results nrsgn and I hoped for. She took a 'one part at a time' trial approach having fairly well ruled out lumbar and peritoneal catheter obstruction thus she changed to a new valve and reservoir. She also partially opened the lumbar incision to re-secure the cathether which was loose and tie off the fluid (pseudomeningocele) leak and clean out that CSF bubble. Anesthesia went "ok" w/minor issues using lighted scope and small tube - they accessed my port a cath and for whatever reason also started a peripheral IV in surgery which immediately blew in recovery. (some day anesthesia drs will listen when pts who get weekly infusions tell them where IVs do NOT work in their hands or arms!

Talking to nrsng just before I asked why she thought I would have had H/A relief even if temporary with the last surgery the end of may and she thought this was not because of the valve working particularly well (to much resistance and gravity so not enough fluid can be drained off. Instead she thought the H/As had improved (really improved!) because of the fluid(pseudomeningocele) which acted essentially as a pocket for CSF fluid to drain and provided temporary relief from the H/A's for the 4 or so weeks I felt really well until pressure in the pocket essentially equaled pressure in the spine/brain. (I am not quite sure how to explain this it made sene when nrsgn explained it though and had s/t to do with the distance between LP shunt placements and where the problem actually is occuring (brain/ventricles) and gravity +smaller tubing size and inability to use programmable valves in LP shunts again due to resistance). Because there is no place for that pocket of  fluid to  have gone which in and off itself could have caused problems - unlike in a efficient shunt CSF (cerebral spinal fluid) would build-up, drain, reaccumulate, drain, etc. in this pocket the fluid met resistance in time and thus fluid could not be reabsorbed and more couldnt drain into it. This also lead to swelling along the actual shunt tract to the valve again pointing to to much resistance and not enough 'let out'.

Neurosurgeon spoke about the possibility of switching to a VP shunt and her concern if I would be scared or essentially freaked out by this and she mentioned that while my ventricles are small for communicating hydro she still felt this would probably be a better overall possibility for headachr control and lesser chance of problems. (but there is still always  a chance of problems and instead of being in the lumbar spine the shunt would sit in the ventricle in the brain and be threaded down to the peritoneal cavity.). 
First we are going to wait a couple days while in the hospital and re-assess and make a decision about her re-operating and  placing  one of a couple different types of LP valve she has researched w/several companies. She spoke about the possibility of the couple different types of LP valves she had researched after contacting the LP shunt companies one of these being a strata I believe.  In the morning she planned to srop by and we will talk further.  Sge laid out several options this  morning if this valve didnt work and including that she had called 2 different LP shunt companies to inquire about their valves for this type of shunt and get opinions on what might work better w/in underlying MPS. When she came in tonight we talked for about 15mins and she brought up again these other valves, that she would monitor me for a couple more days and re-assess. She may try a new valve in an surgery if we go that route while still in this in-patient visit. If that vlave wouldnt work she mentioned we could do every few day shunt taps to draw off fluid in her office while we decided on what we where going to do to get a good result. She talked about this being imperfect and not wanting to have me come in to see her so often but it would give us a little time and in the mean time provide some relief for me. (not only the headaches but also the nausea and autonomic issues like blood sugar issues, BP, breathing affects, etc.

I will post after I talk to my neurosurgeon again tomorrow - she thought about noon. Her resident/fellow is also very nice so has been fine.
Prayers for peace and comfort to those friends of mine also dealing with MPS challenges and to those suffering in silence I pray you to find a dr who acts as your champion!

Erica
 The idea of a VP shunt placement and just overall these further surgeries is not high on my like list but while the idea is not appealing in the least I am eternally grateful to this dr for believing me and  for seeing the little signs in me that so many providers missed and cont'ing to believe me and for wanting to help me and do all she can. Every patient should have providers like this one!!!

Testing results

Just a quick note to add to yesterdays blog - so I had the urodynamic testing at UW Hospital on thurs which went fine albeit interesting and gave us clear results on what is going wrong. I'll spare the details of the various tests but afterward the urologist who at UW has experience working with spinal nerve bladder injuries came down and went over the results with me and laid out a plan. I was able to ask many questions and really liked this dr - I thought he seemed much more knowledgeable than the PA I originally saw back in June (and as ive said before I have nothing against mid-level providers I actually genuinely like alot of these providers). He explained that in normal people you would feel as your bladder is filling with urine and have control over this till it got to a point when you where near a bathroom. One of my problems is that I have no sensation what-so-ever of the bladder filling until it reaches the extended point where it is very full and then the only sensation (which I have known) is cramping which is essentially my alert that I have to void and it tends to be a urgent feeling for me. The other problem is that when I do go to the bathroom most people have no trouble they empty their bladder and are on their way and the cycle begins anew - in my nerve injured system I cannot void normally on my own and end up essentially exerting pressure to try and get the urine out which creates it's own problems and even with this I do not empty fully thus urinary retention. He recommended going back to self-cathing 3x's a day at minimum vs I had been doing 2 to make sure all urine is not sitting around and potentially causing problems. He advised against drinking any extra water/fluids other than what i'd normally drink and told me to stop the oxybutyinin which his PA started. Instead he started 2 meds - Detrol LA and Flomax both 1x a day to relax the bladder and make things easier. I will fup with him in 3 months have urodynamic testing again down the road and the expectancy is still that these nerves will heal just no one can say when. As I said yesterday I asked about the CSF fluid building up around my lumbar incision and he thought I should definitely ask my Neurosurgeon which I will do when she stops by before surgery tues morning,

I will ypdate on all the other things that have been going on including my niece having been here the past week and our family trip for the day to bay beach weds.
Enjoy this weather - God Bless,

Erica

Neurogenic bladder and article

I'll update this tomorrow or sometime this weekend with the urodynamic testing results (yes, thankfully the neurogenic urologist did come down after the tests where completed and talk to me and along with the nurse who did the tests explained what the results ment and what they thought we should try.) It has been a really busy week so I apologize for the lack of updates. Below is just portions of an interesting article I found on neurogenic bladder issues:

The spinal cord extends from the brainstem down to the lumbosacral spine. It is located in the spinal canal and is protected by the cerebrospinal fluid, meninges, and a vertebral column. It is approximately 14 inches long in an adult. Along its course, the spinal cord sprouts off many nerve branches to different parts of the body.
The spinal cord functions as a long communication pathway between the brainstem and the sacral spinal cord. When the sacral cord receives the sensory information from the bladder, this signal travels up the spinal cord to the pons and then ultimately to the brain. The brain interprets this signal and sends a reply via the pons that travels down the spinal cord to the sacral cord and, subsequently, to the bladder. If spinal cord injury has occurred, the patient will demonstrate symptoms of urinary frequency, urgency, and urge incontinence but will be unable to empty his or her bladder completely.
 
The sacral spinal cord is the terminal portion of the spinal cord situated at the lower back in the lumbar area. This is a specialized area of the spinal cord known as the sacral reflex center. It is responsible for bladder contractions. The sacral reflex center is the primitive voiding center.
Peripheral nerves form an intricate network of pathways for sending and receiving information throughout the body. The nerves originate from the main trunk of the spinal cord and branch out in different directions to cover the entire body. Nerves convert the internal and external environmental stimuli to electrical signals so that the human body can understand stimuli as one of the ordinary senses (ie, hearing, sight, smell, touch, taste, equilibrium). The bladder and the urethral sphincters are under the influence of their corresponding nerves.
The ANS lies outside of the central nervous system. It regulates the actions of the internal organs (eg, intestines, heart, bladder) under involuntary control. The ANS is divided into the sympathetic and the parasympathetic nervous system.
Under normal conditions, the bladder and the internal urethral sphincter primarily are under sympathetic nervous system control. When the sympathetic nervous system is active, it causes the bladder to increase its capacity without increasing detrusor resting pressure (accommodation) and stimulates the internal urinary sphincter to remain tightly closed. The sympathetic activity also inhibits parasympathetic stimulation. When the sympathetic nervous system is active, urinary accommodation occurs and the micturition reflex is inhibited.
The parasympathetic nervous system functions in a manner opposite to that of the sympathetic nervous system. In terms of urinary function, the parasympathetic nerves stimulate the detrusor to contract. Immediately preceding parasympathetic stimulation, the sympathetic influence on the internal urethral sphincter becomes suppressed so that the internal sphincter relaxes and opens. In addition, the activity of the pudendal nerve is inhibited to cause the external sphincter to open. The result is facilitation of voluntary urination.
If a problem occurs within the nervous system, the entire voiding cycle is affected. Any part of the nervous system may be affected, including the brain, pons, spinal cord, sacral cord, and peripheral nerves. A dysfunctional voiding condition results in different symptoms, ranging from acute urinary retention to an overactive bladder or to a combination of both.

This is the really interesting part and what I need to try and remember to ask my neurosurgeon - ie is my neurogenic bladder issues worsened bc the nerves 'reset' themselves since whatever nerve signal injury occured and now these symptoms appear to be so much worse and testing verified these symptoms???? It also talks about children with myelomeningocele and one of my questions for tues for my neurosurgeon before tues and of which I asked the neurogenic bladder urologist was if my pseudomeningocele on my lumbar shunt/spine surgery incision could be affecting my bladder issues... ???Interesting???
Diseases or injuries of the spinal cord between the pons and the sacral spinal cord also result in spastic bladder or overactive bladder. People who are paraplegic or quadriplegic have lower extremity spasticity. Initially, after spinal cord trauma, the individual enters a spinal shock phase where the nervous system shuts down. After 6-12 weeks, the nervous system reactivates. When the nervous system becomes reactivated, it causes hyperstimulation of the affected organs. For example, the legs become spastic.
These people experience urge incontinence. The bladder empties too quickly and too frequently. The voiding disorder is similar to that of the brain lesion except that the external sphincter may have paradoxical contractions as well. If both the bladder and external sphincter become spastic at the same time, the affected individual will sense an overwhelming desire to urinate but only a small amount of urine may dribble out. The medical term for this is detrusor-sphincter dyssynergia because the bladder and the external sphincter are not in synergy. Even though the bladder is trying to force out urine, the external sphincter is tightening to prevent urine from leaving.
The causes of spinal cord injuries include motor vehicle and diving accidents. Multiple sclerosis (MS) is a common cause of spinal cord disease in young women. Those with MS also may exhibit visual disturbances, known as optic neuritis. Children born with myelomeningocele may have spastic bladders and/or an open urethra. Conversely, some children with myelomeningocele may have a hypocontractile bladder instead of a spastic bladder.

Sacral cord injury

Selected injuries of the sacral cord and the corresponding nerve roots arising from the sacral cord may prevent the bladder from emptying. If a sensory neurogenic bladder is present, the affected individual may not be able to sense when the bladder is full. In the case of a motor neurogenic bladder, the individual will sense the bladder is full and the detrusor may not contract, a condition known as detrusor areflexia. These individuals have difficulty eliminating urine and experience overflow incontinence; the bladder gradually overdistends until the urine spills out. Typical causes are a sacral cord tumor, herniated disc, and injuries that crush the pelvis. This condition also may occur after a lumbar laminectomy, radical hysterectomy, or abdominoperineal resection.