Part II: Maryland to Rhode Island
and Home
This is the continuation of my trip back east in October 2014 that originally started as a 9 month wait for an initial consultation with Dr. Henderson. To see the first part of this trip and a blow by blow of the craziness and what went down first hand click here
Booking Flights to Rhode Island; It's a small world after all:
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Raised Legs/ Bulkhead Seat |
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Landing in Providence, RI |
I flew Us Airways cross-country from
Oregon to Maryland and they were very accommodating the whole way making sure I
had the bulkhead seats on every flight (to accommodate the need to keep my legs elevated and because I'm 6'4" and cannot fit in a regular seat) . I also had wheelchair assistance in my own
chair.(Medicaid transport covered the plane tickets too!) So when I needed to
change my return tickets and make them leaving from Providence, RI instead and then
ordering tickets from DC National Airport to Providence I called Delta to
explain the situation hoping of course to pull the right strings and get this
taken care of quickly, since it was in a matter of days. Well I finally spoke with a Manager and she was out of
Wisconsin or Colorado somewhere in the Midwest and we got to talking and I was explaining about the constant
movement of my joints and why I was in Maryland and why I was going to Rhode
island and I mentioned it was called Ehlers-Danlos Syndrome and it turns out her and all her
kids also have EDS (a much much less severe case, but painful none the less) It's really not all that rare!Why can't the medical system figure that out! Anyways she was
wonderful and did the impossible and was able to change my ticket and I don’t
even think I paid for my flight to RI... I never was charged! It was such a
blessing the whole experience from getting a return email from Dr. Chopra
himself and an appointment rushed the next week, to the phone call going so well after
fighting with other delta employees who said I couldn’t change the departing
location of my flight home. It worked out beautifully. Go Us Airways the only airline I'll ever use from now on if it's possible!
Dr.
Murdoch; Urodynamics Study: The
Monday after my appointment with Dr. Henderson I met with Sheila the nurse who
takes care of the urodynamic studies at Mid Atlantic Urology Associates in Maryland,
she performed the complete study unlike my previous one in Oregon which was
incomplete because I was unable to void both 27 ounces and/or 7 ounces (back home
they didn't want to push my bladder any further even though I know I can hold
up to at least 40 oz. Anyways this time (since they are familiar with EDS Bladders) they pushed me to 32-34ish ounces and I
was able to void, so instead of Nuerogenic seeming bladder that the
previous study indicated I guess I was actually diagnosed with a sphincter
dysfunction and prescribed .4 mg Tamsulosin or Flomax by Dr. Murdoch. I have only begun
recently taking this since the dysfunction has become more prominent and
painful. (stabbing pain, feeling the need to go but can't, feeling super full but only have drops left, etc) Financially this appointment was
a disaster at first they weren't going to except my approval from insurance
(out of state Medicaid) for the appointment so I gave them $700 out-of-pocket
as agreed upon (total eventual being $1,000 cash at the appointment) by the end of my appointment they said they had accepted
my insurance and gave me my money back! I was shocked! I mean I was on the phone with my insurance case manager but I still didn't expect that to resolve so quickly or so I thought, but when I returned home I received a
bill for over $4000 and I had been receiving phone calls since apparently
whomever is in charge of billing over there is not on it and its March and
insurance still hasn't been billed! They aren't calling anymore but it’s such a
mess, they didn't have my insurance info and they claimed then they did, and I gave it to them several time and then they didn't submit, and honestly they need to do that or they may run out of time! So that mess is not yet been tied up and I don't know what's going on with it now but
someone at my insurance company is handling it I think. I hope. Anyways back to
the treatment part of this. I have tried the tamsulosin on sporadic occasions
since I’m supposed to take it after a meal (30 min to be exact) and I’m not
really eating much till nighttime and then I don’t know if I should take it because
it says in the morning and I don't even eat for the first time till like late afternoon or nighttime recently. Plus since Dr. Murdoch isn't my treating urologist I have been
waiting to see my local guy and discuss options and how I should be handling
this, and if this pill is that important with food and timing. I see My local
guy in April, pissed I was supposed to go this week (March 6th) but I caught a
cold and after waiting 6 months for this follow up I had to cancel! Bummer! The only
reason it's taken so long to follow up is that Murdoch’s office kept not
sending my records over. it's only 1 page! That’s all it was and it took 5 months to get! So
ridiculous but now he has all the notes from all three appointments back east
and it should go smoothly from here on out, Just gotta make it to my April appointment.
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Compassionate Care Award
Dr. Pradeep Chopra,
Pawtucket, RI |
Dr. Chopra; Suburb EDS Pain Specialist: Let me start by saying
that this was the best appointment I have ever had with a medical professional
ever!! There really is a reason why he's won the compassionate care award twice
in Rhode Island and I wouldn't be surprised if he won again and again! Dr. Pradeep
Chopra is the kindest smartest most knowledgeable doctor/pain specialist. Period. And when
it comes to Ehlers-Danlos and complex regional pain syndrome he has seen, treated and given
countless talks and hours worth of advice to patients. Both online and in person. He is very aware of CRPS/ EDS their commodities and therapies that may help. He is one of the foremost physicians in the country using Low Dose Naltrexone for treating serious chronic conditions. For me in particular my mom and I went in
and he spent six hours with us thoroughly going through and explaining in
detail to my mom and I in layman's terms what's really going on with me. He diagnosed me with Marfans, EDS Classic Type, Mast Cell Activation Disorder,
Gastroparesis/ Slow motility, he validated POTS/ dysautonomia (and said DON'T
get a Tilt Table Test, its miserable and not needed) as well as he gave me a
different term for what was going on with the knife stabbing in the back of my
head which Dr. Henderson diagnoied as Occipital neuralgia on the left and prescribed
a nerve block, but with my steroid experience in the past I was very against a
needle in my skull, and Dr. Chopra agreed, he said it likely would just make it
worse as I had suspected. (love this guy he really listens!) Dr. Chopra did test for Occipital Neuralgia on the right as well and it
was painful and a positive too (the test is just putting pressure with your thumb
on the Occipital region and pain especially that runs up behind the eye is
positive for Greater ON, if not behind the eye it's Lesser ON (not that the pain is actually any lesser, bad joke) However Chopra he does not believe that the stabbing that was
consistent on the left was ON but rather simply neurologic pain and muscle spasms
pulling my shoulder out that caused centralized nervous pain to run down
into the shoulder and whole left arm (I mean come on guys I haven’t been able
to wear a bra or clothing on this arm/shoulder in over 18 months! Something’s
gotta give) He doesn't believe that it's really true CRPS either though there are
several indicators for it that other doctors have mentioned (slowed hair
growth, color and heat variations, extreme pain, unable to use, inflammation) I mean I know it’s the constant
trauma from never ending subluxatons that’s caused it, I just want it to stop so bad! Dr. Chopra used an infrared surface thermometer on my arms and it showed
1 degree of temperature variation which apparently is also an indicator but he prefers it
be more than 1 degree to make the DX which is all good by me, although he still
write it down in my notes.
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Close up "We-Fi" With Dr. Chopra |
I went to Dr. Chopra planning to talk about LDN and he was excited I was already aware and interested (I had been trying all last year to get a local pain specialist to rx it with no results) He prescribed LDN for me at 4.5mg and sent the script off to belmar pharmacy in Colorado where they know how to formulate it the right way with no bad fillers or anything. It arrived the week after I got home and has helped decrease the stabbing in skull (neurologic
pain) within about 10-12 weeks of starting it but not with the tethered cord
back problems or shoulder issues He recommended I start Sublingual Vitamin
B Complex 2,000 mg, Vitamin C 500 mg, Chealated Magnesium 500 mg and Alpha Lipotic Acid 200-400 mg (solgar brand) to use only liquid or powdered supplements/ meds and to crush or open all
tablets/capsules as long as they aren't time release, and he also RX'd Zyrtec
and Zantac 2x daily (morning and bedtime) for MCAD. He recommended Knee Braces for Patella stabilizing
and to prevent hyperextension, and Fibula rotation. Other suggestions where compression gear, aqua therapy,
propreception exercises, sitting on a yoga ball and to keep moving when I can
but to never push myself, and to only do 1/3 of PT or any exercise I’m given to try. I also need to see an ophthalmologist to look specifically at the shape of the
conus and something else it is all in his notes.. his 13 pages of notes
THIRTEEN PAGES! He also had wrote some notes for me by hand to take home and directed me on what parts of the conversation to records. I got myself a detailed plan by one of the best!! I knew this
was the best thing I could have done! I now have a serious professionals opinion and a plan laid out for my drs back home and they can also have someone to reach out
to familiar with my case who could help guide them if we get into sticky
situations we can’t handle on our own out here. Just knowing he is an email or
a call away is such a relief! If you can get to see him you should he is worth it! Oh and of course he feels strongly I need to
follow up on Occult Tetherd Cord Release and Cervicle Fusions later with Dr. H. (which is the opposite
order Dr. H had mentioned but I’m fairly certain OTCR should be first and so does the three other specialists I've consulted!,
Although I've been on LDN for 5 months now and I think I may have just really recently (within the last couple days) noticed
a notch degree of pain lesson in my low back sacral dimple region, but it’s still
utterly disabling and with an uptake in the neck instability meaning I
need to wear the collar more and more now, which in turn pulls and kills my
back, what can ya do? I just want all the information possible to make a education right descion for me. I've kept in touch via email with Dr. Chopra he is
wonderful at staying connected with his patients. I feel this appointment was so
important and worth it. Truly a life saving excursion all around, mom completely agreed. She felt so much more aware of everything after this! And it was worth it just for that too!
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After Amazing Consultation, Full photo with Dr. Chopra
(Bare shouldered in October) |
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View from our Window of the Biltmore |
Medically Reciprocal State: Going to
RI was a very sudden thing, we managed to get a nice room at the Courtyard
Marriott and settled in, they even had a hot tub and since I never get to have a soak mom wheeled me down and we took a nice soak,
although it took me 15 min to get off the ground and back into the chair
because the dysautonomia had been triggered with a vengeance. Back up in our room
I medicated with my handy dandy Co2 Vape Pen and in a reciprocal state too which was so cool to still have all
my medical protections all the way across the country if only it was like that everywhere. I even had an acquaintance I reached out to to see if we
could connect, the timing wasn't right but knowing people is everything in this
world and we had a nice little phone chat which helped prep me for Chopra (she is also a Chopra, EDS, LDN, Cannabis Patient) and I
was told that President Obama was in town and staying at my Hotel! ..Turns out we were
on the same block and that was why there were dozens of cops in front of the
hotel and the whole street was closed for like an hour... our food delivery was
late! =) It was kind of neat thought we had just come from DC and Obama had followed us
up North =) He was giving a speech at the university and apparently he is only
the second sitting president to ever visit Rhode Island while in office. Kind of neat. Anyways I prepared
my bag and binder for what was to become my amazing 6 hour appointment with Dr.
Chopra, boy did I not have a clue! But after those 6 hours in my chair my
hips where on fire, my shoulder was spasiming like crazy and I needed to
medicate, BAD! Thank goodness for my vape pens! Well we were waiting on a cab to
arrive which was a whole nother fiasco trying to get someone to come out to Pawtucket after 6pm it was taking awhile and had gotten dark and was freezing outside but I
needed to medicate asap so just as we go outside (bare shouldered) I have my pens at the ready in my lap and the Taxi pulls up, I guess I forgot about my pens in my lap (I was
bloody freezing, don't forget it's the end of October, sun's gone down and I
cannot wear clothing on my shoulders nearly at all) and I was dealing with this crazy taxi
driver who was really loco and didn't have room for my wheelchair (even though
he knew I was in a chair) cause he didn't want to move the car seat from the
trunk, that when I transferred to the car I guess my pens fell out on the
ground and probably got smashed by the car. Anyways I became frantic back at the hotel when I couldn’t find my pens and since I didn't travel with green just the oil pens and now they were gone and I was dyeing! I needed relief ASAP. But
I managed to reach out to Patient Advocacy Group and told them my tale and my
connections in the area to the EDS Cannabis Patient I knew =) and they were incredible,
went above and beyond and someone was so kind enough to bring to our hotel some
medicine to make it through till we left. I was the luckiest girl in the world
but we didn't have a piece, or papers or a lighter... so mom walked over to a
CVS picked up some papers and a big ass lighter and we were ready. but the Jay
didn't come out so good since we had no grinder so guess what? In the Lobby the hotel had a
little pantry and they had Apples! Mom ran down to grab one and a plastic
knife and I made my first and only ever Apple Pipe!
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1st ever Apple Pipe and RI Meds |
It was weird but did the
trick, I’m sure we stank up the whole hotel room, our food delivery guy was
cool and gave me a heads up you could smell from the hallway.... oh well, It’s
the only thing that does the trick and I had fabreeze and the window open, I
mean I was in really bad shape...stomach, spasms, nausea, subluxatons and if
you've followed me on tumblr or instagram at all you'd know that I’m really
only now recovering from the trip, I spent a good 2 1/2 months where I couldn't leave at all cause my hips where so misaligned and loose. But I digress. I’m
just eternally grateful to the women who helped me out when I as in dire need. It’s
nice to have Reciprocal States, Thank You Rhode Island! Thank you Patient Advocacy!
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Goofy Mother Daughter Duo |
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Transferring Flights, Legs Up,
Bags and Pillows at the Ready |
Heading Home: In my chair and on
the Providence RI Airport Runway, I’m wheeled up a massive ramp, loaded and
hobbled onto the flight into the bulkhead seat, cause remember I’m 6'4"
and I NEED the knee room, plus I can't walk any further then just past first
class to the first economy class seats on our first flight of what was to
become the longest day of my life! Three Stops, 13 hours, 4 pillows, 5 bags and
priority boarding thanks to my chair, Thank Goodness! The flight began
with an announcement like no other I will ever hear again it went something like
this. While the rest of the public were entering the aircraft our pilot
came over the loud speaker and rushed everyone who had only just begun being
boarding saying "If everyone can find there seats and store there bags quickly, we have less than five minutes to board everyone, in order to beat Air Force One off the ground!" We were literally racing the clock to beat the
president into airspace! If we didn't we could be grounded for an hour and who knows how many connections that could mess up! But i got such a kick outta this, I just couldn't get away from out Commander and Chief he was
everywhere! =)
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Bulkhead Selfie
(TLSO & Aspen Vista) |
Our First stop was a 2 1/2 hour layover in Atlanta. Which was a
nifty airport we were transported through the terminals on a train/tram like vehicle, that was very crowded and the side to side jolts really knocked my neck
and shoulders around! Then once I was at the terminal we didn't have long to
wait until I was wheeled onto the tarmac and waited for a special shuttle bus that’s
wheelchair capable to take us too our aircraft. Once on the flight all went
smoothly. Here’s when it goes downhill, last stop, Portland, 300 miles from
home another couple hour layover, I was a mess by this time, Mom was starving, it was late like 8pmish so we sat
down at a Restaurant near our terminal, I got a chicken salad with oil and vinegar minus crouton and cheese and mom got a burger, But
see I made a big mistake my body was being very uncooperative already
with most foods since the trip had began ( I was cheating and had ketchup and chicken on the trip), I have reactions to nightshades
sometimes more than others, but that night i learned raw is a no no and the roughage of the lettuce plus the chicken
it just didn't go over well and I was keeled over, sweating, spaisming and
subluxing, dying from the stabbing gut pain and nausea, not a way to start a flight, , I was trying not to sob or swear or speak in toungues cause communicating
when you’re like that doesn’t usualy go over so well. at least not for me. Finally it was time to
board and I find out I could not be in the bulkhead seat because this is a small
aircraft and the bulkhead is also the emergency exit for Alaskan Airlines (small aircrafts), and I am not able to do the whole helping people off the plane in an emergancy, i used to no problem but not now! UGH so instead no one sat in the bulkhead and I had to shove myself into
the tiny seat behind it and low and behold the tray on the seat in front of me jabs
me right in the knee cap during some turbulence right after take off and knocked my fucking knee cap
outta place, it was horrible and this time I did cry a bit, a bit more then a bit, mind you emotions
where really high at this point too, everything had come to a head and mom was frustrated and it was late and we just wanted to be home. So the rest of the 40 min on that flight
was utter hell, I've learned my lesson I will NEVER take a pit stop in Portland
again. Not Ever! The knee cap was only the beginning to what was to became the battle
of the leg for the next four months. And it’s still bad just, not as bad. My
hip, knee and ankle did a land slide imitation on me that has yet to completely
resolve. Part of why I’m so nervous for my follow up in April. I just don't know
how much the travel is going to destroy me again. Although this trip will only
be a couple days not two weeks.
Insurance:
AllCare Medicaid through Oregon
has been amazing through the course of these events I have my own coordinated
Care Case Manager and she was fantastic through this whole thing making sure
approvals were going through and everything was set. We are still waiting on
reimbursements from certain things. They didn't end up approving the Chopra
visit (cause they said it wasn't necessary and there was no time to get it approved
anyhow from the Henderson Referral to a Pain Specialist for the Root Block,
which I felt if Chopra said I should I would but he agreed it wasn't the best
course of treatment for me, gosh that man is such a good listener and so knowledgeable and a wonderful communicator. Totally worth every penny it cost from my
collage fund money I cashed out to afford this whole Maryland initial trip.
Anyways we're still not sure what's going on with the payment of Murdoch but as
far as I know Medicaid is planning to cover my follow up to Dr. H in April so
we'll have to see what happens from there. Although if I don't have the right
mobility transport this time, I will have to postpone the trip once more. My
local doctors and I have been on it these last several months! Those notes made
such an impact. I have orders in, waiting on approval for a 40" high
raised shower seat with arms, Breg Shoulder Abduction Pillow, Knee Braces KFO
like, Ankle Supports UCBL, and an Electric Wheelchair... it’s really needed! My
legs are so bad, hips too, but pain running down behind legs just giving way after a
few steps, I can't make it around very well at all most days. But here’s to hoping
thing got better come spring like they have in the past although I’ve never
been this affected before in my life. So I know there are more adjustments that
will need to be made. I am also heavily pushing to see this sports medicine guy
who does prolotherapy I've gotta try it for my arm as soon as possible!
The Plan:
Dudes so how things went with Dr.
Henderson and after talking with the second opinion phone appointment Dr.
Donlin Long (who doesn't operate anymore just gives opinions) I feel pretty
strongly about pursuing occult tethered cord release, I understand it's very
new and there is no follow up date on the operations out there. And I'd like to
maybe get a second opinion from someone who actually does surgeries. I am sent
off my paperwork to the doctor in New York that I was told about and I heard back
from him last week, he is out of network, but the cost for the initial consult
is only $250 and he was willing to meet me and take an in-depth look at my
case. Occult Tethered Cord is pretty controversial and it’s still the new kid
on the block, when it comes to taking care of something you can't make out before
you go in. Now I don't think I could afford to have him do the operation
although he seems like the one to do it, because he flat out won’t accept Medicaid
or Medicare, but I like how he does the surgery compared to what I've heard second hand about how Henderson does it, something about putting in metal.. which Im not cool with. But we'll see what happens there after my follow up with him. I also scheduled an initial meeting
(In New Jersey) For a couple days after my Henderson Follow up April 27th,
and depending on how that appointment goes and what I learn from him on how he
does the operation I will be able to make a more informed decision on who will
do the procedure. I am even considering reaching out to Dr. Bolognese to
address my OTC if the new jersey guy and i can't figure out a payment stragey. Also I of course desperately need to know what is happening in
rotation with my neck since we were unable to get a read from the original disk I had with for Dr. H,
since apparently the atlas view was not even burned onto the disc! So I plan to
get some answers about that image from Dr. H (newly burnded disc with hopefully the right images intact) and then learn the nitty gritty
details of the surgeries so I can make the most informed decision possible and discuss with him my feelings on dealing with OTC
first and hopefully scheduling that for the end of August after what should be
my best friend's wedding. I do not believe that if I decided to go to New
York/New Jersey and have a second opinion with the doctors up there after my
second appointment with Henderson that insurance would cover the flights I have to get in touch with Mercy Flights soon to find out if they can help with that. cause I really have no idea and I don't know how I would cover it either but it's just
what's it going to have to be. Figuring it all out as we go and know if I
will have the electric wheelchair or not and I need to know soon, because I
only have about 2ish weeks left to cancel without a penalty!
What I've
been doing, trying and how it's been going:
Well I've been on the LDN like I
said which has been helping with the neurologic pain in my skull, THANK
GOODNESS GRACIOUS!! I thought that was gonna be the death of me I've been taking the H1
and H2 antagonists (Liquid Childrens Aller-Tec (Zyrtec) and Crushed RX Ranitidine (Zantac) which seems to be helping with some of the MCAD symptoms by
not completely, and it must be taken together or no results.. it took a couple months I think to really notice. I have stopped gabapentin, started lyrica, stopped lyrica, tried
a few muscle relaxants Zanaflex (put me to sleep for 2 hours with more spasms
on waking) and Baclofen which I’m not sure does anything, but if it does it's just
ever so slight, I really think the cannabis helps to boost it a bit though
cause alone it did nothing but with vape and oil it seemed to calm the arm down
just a smidge. I've been on several new supplements and vitamins which I will
be addressing in another post more thoroughly soon but I have included Ibergast and
a Liquid Ginger Extract, liquid vitamin D3, Sub-lingual vitamin B12, Cod Liver
Oil and tried multiple vitamin C's and magnesium’s but finding ones that I
wouldn't react has been difficult, but I’m tolerating the Solgar brand much
better now than I was others, But I still have a really hard time getting the
magnesium down. My GP like symptoms were awful when I got home and it's only begun becoming
more manageable the last couple weeks, I'm mostly on liquid/soft foods diet partially for
my dysphagia. I’m staying away from high FODMAPs which is a big trigger, I try to stay low Histamine and Mostly off all grains... I
cheated and had corn puff cereal and had some aspiration issues and had that checked out with a Nose scope and a Endoscopy and all that was found was I have an odd turn to the left with my esophagus. Recently I've tried
some rice, amaranth and some other mixed grain gluten free pasta instead of corn stuff but it
gave me some intensely painful bloating so I was right to stay away from grains these last couple years. I’m seeing a Dietitian now whose helped me get back to
eating a little more, instead of living off ginger hard candies all the time which I was when I first went to see her,
the gastroparesis was worsened after my trip cause of the nightshades, chicken and
then of course the new med I started on Chopra's recommendations, the liquid children’s
aller-tec (Zyrtec) I originally found at Walmart that was dye free I didn't realize also had
sucralose in it and I was poising myself 2x a day with the medicine that was
supposed to help treat my tummy, but really was making it a million times worse. Thanks to COSTCO I
get two bottles for the price of one and no SUCRALOSE! Yay! And now I can tell
the the h1/h2 combo dose work even just a little. Lastly I am in the process
of getting my abduction pillow and the braces which should be arriving in the next
week or so. Some very exciting things are coming together I've been
prescribed an electric wheelchair which will see if insurance may cover that
would make this follow-up back east more likely to happen because I don't know if I could
make it out there in April in my current condition and the manual chair is not the
right size for me at all (it was inherited) it its better than nothing but it’s a
killer too. Just leaving the house has been a killer. There is still much
to do and a lot more to consider in the next couple weeks. But this is whats been going on and whats happened. I actually have started to use my stationary bike more and more the last week. Hope to keep that up!
I hope that by posting these descriptive blow by blows I can help others find ways to help themselves and not have to fly all over the place to find help, but if they do they can kinda know what there in for. Also I feel having this typed up for myself is a healthy way to teach myself and work out whats going on in my life. Live an online journal situation.
Peace and Love and All kinds of good energies to my whole Spoonie Family.
May you all find some relief in your life.
Tall EDS Chick
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