Wednesday, November 26, 2014

VP Shunt surgery (revision, #32 or 3)..Discharged

Surgery which was delayed from Thurs to Fri due to to high of an INR was post-poned to Fri morning but finally occured! Because of the to high INR Dr.Bragg opted to admit to the floor (Neurosurgery) and 2 bags of the fresh frozen plasma + a small dose of Vit K. brought INR, which is the blood thinner level to 1.3 by Fri. morning. I needless was relieved and soooo glad to just be getting this over with!
(ordered by the floor Pharmacists and given while in-pt.)

Surgery itself was really short (apparently about 20-30mins) as Dr.Bragg ended up finding the problem right away at the proximal (top) part of the VP shunt (the part that goes in to the ventricle in the brain). I'm not entirely clear but I think she just replaced the valve as she said when she initially tapped the shunt pre-incision there was some flow, albeit sluggish.
Once they had the site open she said there was very little spontaneous flow and clearly a occlusion albeit she felt a partial occlusion. She also commentd to me when we talked that after they changed the valve the CSF flow was much more normal. She cont's to feel it is our "Drain, collapse, pressure builds, ventricles are forced open, drain, repeat" that causes these shunt occlusions. Given symptoms I can't really disagree.
Non-the-less I am just extremely grateful she was able to do whatever she did to be able to get me admitted over-night and do surgery Fri (vs having to wait till this wk or longer). I hope she really knows I appreciate her effort on my part AND not giving up when I know she wasn't entirely certain my symptoms where due to this shunt/shunt in general.
Talking earlier Tues night before I was discharged Dr.Bragg did make the comment along the lines of "In the future we know now the symptoms you had are likely a partial occlusion and not to let it escalate so much". I think she meant perhaps that while I often looked fairly normal as if feeling fine the appearance can be deceiving. I do get comments albeit well meaning from time to time on "are you still having headaches" I think b/c very few people see me at the worst points of the day.
I know people rarely see me when I feel badly as I try to schedule most appts in the afternoon or at the very least late morning and I rarely am around people at the times of day that are my worst.
I didnt really expect going in to get complete symptom/headache relief which I did not BUT I am grateful to be feeling somewhat better and while I do hope someday we can figure out something that would give full headache/symptom relief I also really know to appreciate the improvements I did get with this (revision) surgery.
I think really, atleast Dr.Bragg seems to believe me, to want to keep trying to help which snyone who has followed this over time knows is a fear of mine (Dr.Bragg at some point not helping. I am my own worst enemy when it comes to believing people and that they really arent going to give up!

Apparently there may be some Anesthesia-airway changes as Dr.Bragg had mentioned something about Anesthesia and the Anesthesiologist (who'd had me atleast once before though admittedly I didn't remember her) mentioning that she felt my airway had narrowed further since the last time she intubated me.
As far as what Anesthesia uses each surgery they tend to follow similar approaches used in the past whether they use a Glidescope to better visualize and get the endotracheal tube in or fiberoptic intubation, etc. I am not entirely sure what the differences are.
I guess as far as this surgery they had a difficult time getting a secure airway though thanks to the glidescope instrument used other than being dry I didn't have a sore throat though which is always nice! I know my airway has already been a problem so hopefully this won't mean we can't still do the light sedation and airway bagging while they work to get the endo tube in. There are some instances where a Patients airway is so narrow that they have to literally be intubate while awake - could you imagine? I do think from what Dr.Bragg said it may not be to bad if any change but something that may vary surgery to surgery?
I do know from what the Nurses and Dad said Anesthesia/intubation took alot longer than the actual shunt revision due to issues apparently. Per Dr.Bragg she wasnt sure if airway was in fact changed or was the Anesthesiologist remembering my past surgery with her different than it had been.
The concern was apparently a tighter/stiffer jaw and reduced mouth opening as they tried to sedate/intubate.
Although they still did not shave alot of hair with this surgery and it is growing in already I must say this was by far one of the most noticeable 'cuts' i've gotten with a revision. I am not sure if that is b/c my hair is so much shorter in general but I am hopeful it will keep growing back at the pace it is over the past almost week!

On a side note although the TPL Shunt has been annoying no doubt due to the on-going cough (a month or so now) but I am VERY grateful at the same time it is draining so well as that shunt meant the different between feeling pretty bad over the last month but still able to function (modify when or how I did things) whereas I am very positive without this TPL Shunt I'd have not made it and would have ended up in the ER. It seems also surgery may have helped for whatever reason a small bit with the actual cough. I still have it, worse as the day goes on but no where near as bad as it had been. Odd!?
I do see the Pulmonary dr comng up and while symptoms arent perfect they do seem to have improved some with this revision, not sure why that would be but I won't complain!
The night before and after surgery they wanted 02 (oxygen/heart rate) monitoring which I must say is nothing short of annoying but curiously the O2 (oxygen) level would frequently dip in to the 80's no matter when we adjusted or changed the finger probe. The beeping eveytime heart rate or 02 went to high or low was nothing sort of annoying!
One of the nurses i've had before was asking about the cough pre-surgery (the night before) and made the comment factoring in the cardiac components along w the TPL Shunt that the symptoms I was having made sense "with those issues the fluid has no where to go". I guess I hadnt really thought of it like that but perhaps true.
Otherwise fairly uneventual surgery/stay, happy to be home and know of 1 or 2 things to square away (better plan) for future surgeries.
Thanks for stopping by,
Erica P.S. the # of shunt revisions all minus 3 has been in the past 3.5yrs, the prior 3 where since 2006 when I was first shunted - kind of crazy isn't it? And yet for anyone who wonders perhaps you can see why I am so grateful for Dr.Bragg for her persistence especially in times I know it wasn't all that clear it was the shunt
The best visitors to have - my Sister, Mom and Niece and nephew came Sat.

Thursday, November 20, 2014

VP Shunt surgery delay, admitted for INR pre-surgery.

Today's surgery was cancelled due to to high of INR (how thin the blood is) which really sucked both since surgery had been rescheduled once before and bc I was already in pre-op. I knew whatever an INR draw showed yesterday though wouldn't represent today since my last dose of Coumadin was Monday so had figured it would be within a 'surgery safe' range atleast by this morning, 3 days off the med. Not so much, the level was 2.2 and "safe" is 1.5 or under it seems.
Thankfully once my Neurosurgeon came up to Pre-op she was able to sort out a alternate not quite bad plan - she was able to admit me to D6-4 (Neurosurgery floor) with the plan to give Plasma (FFP) and Vit K this afternoon in order to bring down the INR with surgery as an add-on case tomorrow (meaning we won't know a time and could be anytime during the day).
It definitely sucks to be here another day and for surgery to have been cancelled but grateful Dr.Bragg was able to be flexible and work out a plan to go ahead with surgery.. I just want it done!?!
Admittedly and this is quite stupid but this is the shortest I've ever had my hair during a shunt surgery so that part makes me a bitt nervous ie how noticeable is it going to be (the incision, small shaved area, like I said stupid) but non-the-less feeling better would still be better..

"I have a hard time sometimes explaining my Providers (and frankly how annoying it is sometimes) to family and sometimes friends and yet how in many aspects these same Providers have been great for my care and are very good on my Team. I know my Mom doesn't hold it against me but dang I seriously was not the nicest (lost my cool, said I wasn't talking about it anymore in trying to explain something when I could have just said something differently in a better tone) and admittedly we both where probably over tired and frustrated about surgery being cancelled again but still on my part not one of my awesome moments! There's reasons I am not a morning person I guess.
The reason I share this really is one of my Pastors from Church had emailed this morning regarding surgery and postponement and said something along the lines of "God most certainly given you a lot of patience. You may not agree with that, but trust me...coming from an outsider's perspective, you have been blessed with a LOT of patience. What an example for the rest of us to learn from!"
I thought that was ironic to read after feeling so frustrated this morning but at the same time I sent back a message saying I appreciated the kind words and vote of confidence! It's nice to know people believe in you I guess or think that you deal with things well?!?
The Plasma is being run now to bring INR down with the Vitamin K will be given in oral form, low dose (hopefully that in turn won't affect to much our ability to get the INR back in range once released from surgery/in-pt!) - Vit K is notorious per my Cardiology Team for having longer term affect on INR manageability.
It's ironic really that after 3 days off the Coumadin (blood thinner) my level would still have been so high (normal for a mechanical heart valve pt. but to high for surgery) given we (my Cardiology Team) and I typically seem to have a somewhat difficult time keeping the level within the acceptable range - more often than not in the past 6mo. it has been to low vs. to high.
In the future for surgeries I think I am going to question my Cardiology Team about testing INR the week before any planned surgery so we'll have a better idea where my level is (to low, just right or high.) Doing an INR would mean we could perhaps better tailor when I stop the Coumadin according to that Lab result vs. this time we hadn't done an INR since the 1st wk of Nov. and so had no real idea if my level would be 'good' and just planned the stopping according to AHA/ACA guidelines - my Cardiologist and PMD suggestion as in the past.
The last surgery I guess I had kind of forgot about it but I think we may have stopped the med 5 days prior to surgery (Neurosurgery suggestion) and the surgeries before that I was pre-admitted the day before (for other reasons I think scans or something) and so we had an idea if INR would be ok enough the next morning. Those surgeries we had to give Plasma the morning of surgery.
I will close on a somewhat positive note that although my cough (from pleural effusion) is cont'ing to hang on tight, worsening as the day goes on my INR when re-drawn some hours after this mornings had already dropped from 2.2 to 1.9. The Plasma should bring it safely down the rest for tmrw!?
I close this praying for a safe surgery tomorrow, thankful for my Neurosurgeon and thankful for my family and those friends who continually check in on these surgery days!
Thanks for stopping by, God Bless,

Thursday, November 13, 2014

PFTs/breathing, Shunt surgery, PMR/botox

I'm not sure what made me realize or think of it but the Pleural Effusion symptoms that have been occurring for some weeks (with the cough that has been occurring for the past 2-ish wks) is the same symptoms that occurred for weeks after the 2nd OHS (open heart surgery). - I'm not sure what the deal is but the symptoms ebb and flow throughout the day, seemingly the worst at night. Definitely annoying and really wishing would improve or go away... Surgery is next Thurs and makes me a little nervous.
Apparently the consensus atleast between my PMD and Peds Neurosurgeon is this Pleural Effusion is caused both due to the TPL Shunt and partially heart related. Last year with these symptoms the TPL Shunt was temporarily re-routed to drain (along w the VP Shunt) to the peritoneal cavity so it would seem it was different causes each time?..
Overall I've not heard anything regarding the PFT results from Cardiology nor if they have a problem w the surgery going on, though they are aware it is next wk. (my PMD wants their blessing on the shunt surgery going ahead). I guess or would imagine they'll likely give myself/my PMD the ok before next Thurs or give us the PFT results but would indeed be a relief to know sooner than later. I don't imagine they have a problem w the surgery given the NP didn't seem to think there would be the other wk but there's also been somewhat mixed communication regarding the PFts and f/up. Non-the-less i'll just be happy when the surgery is over (hopefully next wk) and dealt with.
As far as the blood thinner (Coumadin) i'll take the last dose of that on Monday which gives 3 days prior to surgery though haven't heard if they'll require testing the day before of just test the morning of surgery (during the 2 hr pre-surgery time). Generally INR should be low enough within that 3 days range though last time (unsure if it was related to General Surgery working w my Nrsgn) they required the level to be within the "normal" range whereas other surgeries Dr.Bragg/Anesthesia has just done Plasma ahead of surgery if the level wasn't low enough.. Unsure this time.

The PFTs (breathing tests) where yesterday (Tues) with 6minute walk test and seemed to go relatively ok. I didn't ask the Tech what her opinion was but asked my Cardiology Team to to send the report to my PMD (outside medical center) and to let me know if they'll clear for the shunt surgery.. Per my PMD and her having apparently talked with Dr.Bragg last wk Dr.Bragg wants to go ahead with surgery if possible. I am sure hoping we can just get it done.

PMR F/up - Botox
Today (Thurs) was 3mo f/up for Botox (spine spasticity; botox injections calm the c-spine, thoracic and shoulder muscle signals from becoming overly reactive). Overall Dr.C did 15 injections at the various points trying a different strength to see if it would have the same benefit. Follow up once again in 3months. She commented that some of the muscles seemed more tense/tighter than normal, asking if I'd still been doing massage (Physical Therapy) which was a little surprising she could tell but I have not been to PT for a little over a month. It always surprises me how many of my Providers can really tell a significant difference between when I am and when I am not actively doing PT.

I'll update when/if I hear anything from Cardiology or my PMD or otherwise if anything new comes up regarding the VP Shunt surgery.
Thanks for stopping by,

Friday, November 7, 2014

PMD, Neurosurgery, Cardiology-Pleural Effusion

Yesterday I had the CT Scan with contrast which was fine, quick and not to much trouble other than the Tech having a bit of trouble getting the IV. Note to myself, apparently they know how to use Ports, so ask in the future ahead of time!
My PMD, Dr.Simpson messaged today with the results and to say she had spoken with my Neurosurgeon, Dr.Bragg regarding the results (see CT Scan results below and Dr.Simpson's comment right below this) - Below the CT Scan results are another message received later this afternoon from Dr.S regarding the Shunt surgery and her conversation with Dr.Bragg.
11/7/2014 12:33 PM CST
The ct scan report is below. Upon review of the prior ct scan and this one and discussion with Dr. Bragg. --the consensus is that the pleural effusion is likely multifactorial--partially possibly from the heart and partially from the shunt. Due to the area of " mixed Density area" you may benefit from having some of the fluid removed to ensure no infection contributing to the symptoms. When is the pulmonary appointment as they would be the ones to set that up? It should be done prior to the upcoming shunt surgery if possible since it could affect how the surgery was done/antibiotics, etc. PJS, MD
Ct scan showed: 1. Small to moderate sized right pleural effusion with associated consolidation at the right lung base. The effusion appears to demonstrate subtle mixed density posteriorly of questionable significance. This also may represent imaging artifact.
2. Catheter again seen extending from the spinal canal into the right pleural space. The tip of the catheter within the pleural space has changed since the previous study and now lies near the lateral interlobar fissure.
Regarding the Pulmonary consult I spoke w this clinic and then Dr.Simpson spoke directly with the Pulmonary On-call dr. and the soonest Appt is what I have in Dec. unless symptoms would worsen.
11/7/2014 Lets see what cardiology says and how your symptoms go. I know that Dr. Bragg really wants to keep the surgery at the same time for now. If cardiology is okay and you don't have any worsening symptoms I am probably going to be okay with proceeding with surgery. However, if symptoms get worse, you get a fever or feel more ill then we should probably wait until you can see pulmonary. PJS, MD

I emailed this information to my Cardiologist, his NP and Nurse and will f/up (likely call) them on Monday to see what their opinion is regarding surgery. It may be my Cardiologist wants to see what the PFT results are (those are Tues) so we'll see and i'll keep praying!
I don't particularly want to have surgery but I do want to feel better so I hope these symptoms either improve or at the very least stay stable.
Thanks for stopping by,

Wednesday, November 5, 2014

Pleurisy (Pleural Effusion), Hand Surgeon Appt.

The CT Scan for the pleural effusion/R lung opacity is Thurs., which this is to to get a better view of the fluid area (Pleurisy, pleural effusion) w/PMDs concern if it is worsening cardiac heart failure or in fact just fluid from the TPL Shunt causing irriation causing the cough/other symptoms. After the Scan and PFTs, PMD asked that I make an Appt with the Lung dr. (Pulmonary) which i've been talking on MyChart w my former Pulmonary dr. at FMLH and will schedule w/her for further out and in the mean time see a Pulmonary dr. recommended at Dean (if that works out ok i'll cancel the one for Febr. with my former Lung dr.).
PFTs are scheduled for next Tues (ordered by Cardiology) and those + the CT scan will determine if my PMD will release me for the Shunt surgery on the 20th. She also wants Cardiology's blessing for this upcoming surgery based off whatever these test results are. I am dreading the shunt surgery for a few reasons but at the same time just want it to be over with already and so am praying fervently we can go ahead and my symptoms improve or do not impede surgery.
Overall the breathing/cough issue though it could be from the TPL Shunt (causing irritation) and could be Pulmonary related my Primary doc seems to think it's likely a cardiac issue possibly worsening heart failure secondary to the mitral valve which has been worsening.
If you can please say a prayer the CT Scan gives clearer answers to my Primary dr. and she in turn with my Cardiologist can release me for the Shunt surgery in 2 wks. I sure am praying, for as much as I don't want surgery I do want to feel better on the headache end.

To start off and then cap off a long Appt Tues. my car was overheating again which I must say given I was an hour and a 1/2 from home, on the far W side of Madison I was mildly freaking out!
Thankfully my brother who is VERY mechanically inclined was home and answered his phone + I happened to have car coolant in my trunk - I am not all that car savvy but do know how to check the oil, put in washer fluid, put in coolant (the basics) so with that emptied in I made it back to BD where my brother lives and he was able to do a couple things to hopefully fix the problem for now.
Definitely never dull, though I'd take dull for sure!?

Hand Surgeon Appt
I Saw the Hand Surgeon in Madison today (Tues) which it had been a little over a yr since i've had the R hand Carpal tunnel released again and Fat pad graft. The fat pad graft done by this Surgeon is due to 2 prior indepth CT releases and the prior Thenar Tendon transfer to protect nerves/hand use. All prior hand surgeries minus last yrs. R Hand where done elsewhere.
Given i've had the same symptoms in my L hand and the EMG/NCV nerve test done before the R hand surgery showed similar nerve entrapment issues w both hands we're opting to do this hand again now to.
This Surgeon plans to do the same in L hand as last yrs surgery for the R hand. Due to it being a more indepth surgery they splint/immobilize for 2wks, remove stitches and then last time they re-casted for I believe it was another 2wks w therapy I mostly did at home after. We've scheduled the Hand surgery for early Jan. which works best due to the Shunt surgery Nov 20th and we can figure out the Pulmonary/Cardiac issues in the mean time + the Holidays and an MPS Conf. at Disney right before Christmas.
Hpothenar Fat Pad Graft
The hypothenar fat pad flap is a technically simple procedure that allows the fat pad to be mobilized easily and placed across the palm as a barrier between the nerve and the radial leaf of the transverse carpal ligament, effectively preventing median nerve readherence ..

In God's hands, right?

Monday, November 3, 2014

Chest Xray results

Nothing to special to share, just posting what my PMD mycharted me earlier on Monday regarding the Chest Xray (CXR) results from Fri.
To: Erica Thiel
From: PJS, MD
11/3/2014 12:41 PM CST
11/3/2014 12:41 PM CST
So as we discussed the cxr final report is back and showed: New opacity in the right lung base compatible with infiltrate and effusion. Thus you have some fluid around the lung causing irritation. This can be due to heart failure symptoms getting worse versus infection. Albeit I think infection is less likely since you don't "feel sick with normal upper respiratory illness symptoms". No fevers or chills over the weekend? Please update the heart doc about the new effusion. I would also like you to see the lung specialist. Keep the Ct scan appointment though as that will help us evaluate the fluid area more.
I have placed the referral for the lung doc. The number to see the pulmonary specialist is 252-8000 to set up the appointment.
How are you doing? Any worse then Friday?

I've forwarded the results to my Cardiologist Team whom I spoke with today anyways for INR result (in-range at 2.08). I am not sure if they have any thought once they see this but the PFTs (breathing test) are next Tues and the Nurse will send the results for me to pass on to Dr.Simpson and to Dr.Bragg if needed.
As far as a Pulmonologist my Insur. Nurse Case Manager was given a name suggestion by a couple of her colleagues but I may also see my former Lung dr. at FMLH since she would still be somewhat familiar with my history. As far as the cause of the irritation/Pleurisy I'm not sure if it's from the TPL Shunt draining the CSF to this space and that CSF perhaps not being absorbed fast enough or if it is some other cause such as worsening CHF. I'm not sure anyone knows at this point.
The CT scan is on Thurs.
The only part worsened of symptoms is the cough is more persistent and frequent though still (thankfully) somewhat intermittent.
It's sort of crazy how it is always something!?

Saturday, November 1, 2014

Halloween, eventful week

Trick or Treating was great; so thankful it is in the afternoon! That afternoon was so warm, sunny and NICE for once! No coats (hallelujah!)
I think it was awesome my Sis' let Zan goes as what he really loves!
Zander as a 'Monarch' - his true love and choice (so adorable)!

'Bells the Princess'

Earlier in the day, after Sunday School which was as usual well and lovely, (I love the kids I teach) sitting in Church I was seriously dealing with massive nausea - I always keep Zofran on me which I took more than one is supposed to but thankfully I was able to keep from throwing up! Otherwise the week was eventful with a family funeral (beautiful but sad as most funerals are - both a end and a beginning ie the end of a great man and the beginning of a great 'life' in Heaven.
Otherwise for the past few weeks I'd been dealing with SOB (shortness of breath-air hunger) episodes, R sided pain which eventually began to also occur under my R breast and in to my chest. This seemed to get a little worse vs better over a 2 week period and occurring quite frequently. Earlier this past week (Halloween week) after going back and forth with my Primary drs. office they (on-call dr., my PMD was out sick herself) advised I go to the ER due to the chest portion of the symptoms. Knowing on my end it wasn't likely cardiac as they suspected I instead asked the Nurse if I first could call and talk with my Cardiology Team which was fine.
Shortly after I called the ACHD Cardiology Nurses line the NP called me back and as I guessed my Cardiologist felt it was likely more Pulmonary related than Cardiac and did not think the ER was the best course to take. They want the PFT (breathing test) results though those aren't until the 11th due to my ERT Infusion being on the other day(s) they could have done.
Once the PFT's are done Cardiology is (I guess, per the NP) moving the Cardiology Appt. up another month (originally scheduled 3mo after last Echo, 2mo after I last saw them) to review test results and clear me before the VP Shunt surgery. I don't think it's that they think the surgery will be a problem, more they just want to cover bases given symptoms.
That all said in the mean time these symptoms are still occurring so I 'mycharted' with my PMD once she was back in the office and went in and saw her Fri. Her likely diagnosis is Pleurisy (inflammation of the lining of the chest wall) which is the same side as the TPL Shunt drains in to though we have no way to know is that the cause (if fluid sits in this space to long it can cause irritation) or is it a virus or who knows. In any case she (PMD) is ordering a CT Scan with constrast for this coming week as she to wants to cover all basis before the VP Shunt surgery and if symptoms don't improve i'll take a steroid pack (which I could have started yesterday but opted not to).
Otherwise below are some pics - thanks for stopping by,