Past Writings from East Coast Medical Excursion Part 1

Dr. Henderson & The Upright MRI Fiasco

Before anything even began
Let’s go back shall we... I am going to walk you through the last couple of days. It is Wednesday morning, I have two appointments (or so I think) and I have set alarms to go off like crazy to make sure I am up, medicated, fed and prepared for a packed day, ready to leave in PLENTY of time to get to my Upright MRI at 12pm....but I have this irking feeling inside that Washington MRI (greenbelt) may not have received my referral and I realized that my insurance approval was NOT going to be enough!!!! I called them and sure enough they DID NOT have my Upright MRI Flex/Extension Referral, so I doubled check their fax number and then my appointment time... and for THREE months I've had the wrong time listed. I even asked if it was gonna be a enough time... 45 min sounded too short for so many images Flexion, Extention, Neutral and leaving time for inevitable error knowing my body. more on that later..Anyways the appointment was scheduled for 2PM not 12...at least I had some time it was 10:45AM EST. I hung up and called my primary immediately, no answer. I left a message, then I called Dr. H's office and verified everything...I was good there. Or again so I thought... so it’s now 11:20AM EST and no one from my Primary's office has returned my call... I call back and the person who answers Andrea the referral gal!!! yay! Except she said she faxed the referral twice! Anyways third times the charm (with me monitoring the situation) each end called me back to verify it was sent and received YES! MRI set! but I’m all braced up with HOURS to go! so I propped up my legs on the lovely luxury one seater sofa and ottoman piled with blankets to make a higher back and brought my bad o' pillow over and sat me down with Noah and had a nice kitty love sesh to calm me down.. he loved climbing my TLSO and the ring splints I gather are why they love me so much too the texture. Right as I’m getting myself up, My phone rings it's Dr. H's Office my appointment is being rescheduled for the third time back to its original day and time of 11AM, alright sure. Whatever the wiz wants the wiz shall get... I'm at the wizard disposal while I’m here really. So Donna our incredible Air BnB Home Hostess packs mom and I into her Van wheelchair, zebra briefcase, bag o' pillows galore and all and we head to Greenbelt for my cervical MRI which is about 15 min away.. The trip wasn't too bad except for my knees where pushing on the dashboard and I got the bruises to show for it, we get there early and this gal walks out she's in her 20's, hair in a braid wearing zebra Tom's she sits down and takes one look at my Aspen Vista Collar/zebra bag/Entourage and more and Asked if I had such and such and If I was seeing Dr. Henderson.. Of course I was... we got to talking she's a bit older than I and has a story to tell of her own, one not like many others but all to familiar too some, a tale of operations and procedures, Diagnoses’ too little too late it would seem and possibly failing fusions. Not that uncommon in this community at all unfortunately! She left me her name right as they were calling me in, for what I guess I thought was to be the image to end all images, the one that going to help to give me the answers too what is happening in my head/Neck.

The Upright MRI (Greenbelt, MD-Washington OPEN MRI)
It was a strange looking machine; I wish I could have taken a photograph. I walked up to it and there was cement and then a metal step that I think you’re not supposed to step on and underneath looked like just air like its floating I thought, I hesitantly turned around and sat on this tiny seat in-between two small white walls and immediately asked to prop up my left arm with something, She added a bar to my chest for my arm to rest on (wish I could have something like that traveling with me everywhere!) and gave me a foam tube thing to help keep my shoulder up. Then she added a bar to my forehead so I didn't move during the picture (while holding up my head)....well it wasn't tight enough, after two takes we adjusted the bar tighter and got a supposed clear shot, but still not really and I was rather pissed about it actually! Anyways there we went on to try Flexion and the bar was stopping me from going all the way and I guess I didn’t understand but I tried to touch my chin to my chest anyhow and was causing terrible pain and shaking another 2 takes.. Even though I tried to stay still on that bar but nothing was clear. I had this problem supine too actually it’s just hard to get a clear picture when your neck isn’t stable! Duh! I mean come on people! But it also hurts like a bitch and is fucking hard to do! so they said we were out of time and that I could wait and see if they could fit me in after the next patient if the other one is later or a no show, I noticed of course everything got worse while I was in there the meds wore off (way before six hours let alone four) but took the afternoon doses and then went outside for fresh air cause honestly I was a mess I medicated on the c02 vape pen to push down the nasty nausea that was rearing its ugly head the whole trip (my whole young adult life) and calm the fuck down and then I went and sat back down inside legs up and waited the next 2 hours.. they said they would squeeze me after the next patient but they didn’t know.. no no! and then when they where closing they said that the next morning they would schedule me for a 15 min slot at 7:30AM - (they open at 7) to get those flexion and extension MRI's for Dr. H so I said Alright done.

The Big Day 
Alarms where set on the iPod for 4AM, 5AM, 6AM on my phone for 4:30AM, 5:30AM, 6:30AM, 7AM
I was up I got ready I got mom up an hour before the hour before go time and then I got donna up at 6:30 and we were out the door and there just after they opened earlier then  I was scheduled just in case 15 in wasn't long enough and it was possible to get in early to get them images taken,, everyone I’m with was a fan of being early so it was cool except low and behold no one was there 7:20AM no one! I call and the Rockville location answers and after my schlep they said they will try to get a hold of someone and call me back... it's nearly 8am  when still I’ve gotten no calls, no one's showed up but the first appointment  is now waiting too and then this gal pulls in opens the door. When I get in she looks at me pretty blank and says she has no technician and of course for me with this was uber time sensitive with my appointment with Dr. H in just a few hours so she calls Rockville and they said they would try to squeeze me into 15 min. it's a 45 min drive there though!!!! and of course we hit traffic and of course I was sitting in the back seat, trying to prevent the knee pressure, but instead with the stop and go traffic got unbelievably nauseous to the point that I grabbed my hospital vomit bag, I've carried in our car since I was at the ER in February, out of my zebra bag and proceeded to hurl my Turkish figs I had eaten. ugh My eyes where crossing and vision was blurring, I was passing out and trying to keep a hold of my vomit bag without spilling it in Donnas car, but whilst passing out this is quite difficult, I had to keep jolting myself awake and I was hot and flushed and probably had to pee too but then again I always think I have to pee so what’s new with that doc? anyways stop and go and stop and go every ten feet for 20 min. until  I asked her to slow down the speed of traffic pretty much and I felt a bit better but I already had hurled too all I had in my tum tum tummy. I still couldn’t watch the road like I wanted, probably part of my PTSD from my 2006 accident, eyes always must be on the road, I need to prepare myself for what comes next a stop, a speed bump, a pot hole or a large crack or turn, it’s all painful everywhere! this loose joint crap has destroyed traveling in cars for me, surprisingly enough the airplane was not horrible at all but my legs where not happy, I did try to keep them up as best I could I can only leave the house once a day or my body becomes Defcon 1 on itself and I feel like I’m gonna implode. Okay sorry where was I...oh yes we arrived in Rockville Pulled In I grabbed my cane hobbled in throw away my barf bag and found my way to this lovely MRI place in a great Office building although the directions sucked on the paper they did not say shit about a u turn! But when i called they where a nice and directed us in. The office was better I thought and I was taken in pretty quickly Ryan did my Flex. & Extension MRI and when I said the Bar was a problem he mentioned Henderson didn't like the bar used so I just said then let’s not and he was like alright! And I was like ALRIGHT! We where outta there in like 20Min! If only it where that easy the first time!

Off to see the Wizard.... 
Chevy Chase is approximately another 15min from Rockville but like 25min with traffic and what not. My appointment was scheduled for 11AM I arrived at 10:40ish with mom and bags in toe. His nurse and the trainee (her first day as it seems Rebecca was leaving the next week) moved me and mom into a room rather quickly and began to take a history asking certain questions, the only one I can recall is what are your three highest concerns? 1) Chef’s Knife in skull 2) Back Pain + Symptoms = OTC? 3) Neck cracking (stability).  I was all set up organized with my lists of symptoms, forms, records, and spine imaging up the wahoo, I’m not sure it was looked at.  I can understand that walking in on with really no back story for the most part other than the briefest of would miss a few things or only address a few things or even just be overwhelmed and not understand everything. He seemed to Rush himself jumping right in not really asking me questions or giving me a chance to ask questions or feel open to speaking at all, not sure what was soaking in or just bouncing off that brilliant mind packed with 100's of cases and information and looking at and FOR certain things. So good news was I got some straightforward answers from him and we ruled out some things and ruled in other things.

His impression

He said he was at this time comfortable scheduling me for surgery for C3-4 Fusion (I hadn't even known that disc was the bad one, I was told it was C5-6, which he really never said anything about) and while I don't have Chiari (yay!) I do have Clinical Occult Tethered Cord Findings that he recommends a OTC Release Second Opinion (before he would operate is what I gathered)  Also although he found I have a Neurogenic Bladder from my Urodynamics done back home it was incomplete and he wrote a referral to have it done by Murdock Associates who have a better understanding of how an EDS bladder works and the significance of Urdynamic findings with Occult Tethered Cord- I had preemptively scheduled an appointment for the following Monday going on the assumption this would happen and then  assuming they would take the approval from my Oregon Medicaid insurance, which they very well may not have in which case I will likely forgo that testing as I don’t think spending $1,000 out of pocket for this test was wise.

Dr. H wants these results and the seconds’ opinion as well as Micronutrient Panel Blood Test (Spectra Cell) and a couple other tests (Genelex) to review at my follow up scheduled for February 9^th Which is Rescheduled to April 27th now cause I could not bare going out east in winter with bare shoulders and or of course if I can get insurance to cover this otherwise I’m not sure pursuing this course of treatment will be feasible at all. 

Lastly (you may know from my previous post that I made during my trip in Oct) but Dr. H gave me the name for the Knife in my skull which he called Occipital Neuralgia and wanted me to go home and have a Root Block in my Occipital Nerves…. shocked no one had done or suggested this yet… but I gather it’s cause 1) they knew I was gonna be going to Dr. H so they just differed everything to him first 2) they aren’t willing to touch an EDSer and since they didn’t know what the stabbing was maybe they just didn’t think to try the block since no one ever brought it up. As for the rest of Dr. Henderson’s Recommendations and Findings he recommended c3-4 Fusion, OTC Release, then reevaluate if other issues persist, to remove my herniated discs at T9-10 and Fuse C1-2 as well as whatever the results are to the Root Block and possible surgical maneuvers there too…

Henderson Grips

Here's the problem. I told him looking to the left is extremely painful and triggering for me and yet he stayed on my left the entire appointment and also one of the images the rotational CT which would seem pretty darn important with my rotation issues I'm having he didn't even review the disc at my appointment. He showed up 2 hours late and it felt like he only maybe spent half and hour with us and most of the time talking to the phone.. on my left. and worst of all I wasn't even told that the disc he had didn't have the right image on it till I was already leaving the state! 

 Honestly guys I’m not interested in fusion surgery and If you have been following along these past several months on tumblr or instagram you will know I desperately needed to know what this Knife was and I did and have since actually dealt with that to decrease it the most ever with the use of LDN (more on that in the next post0 however my OTC is more prevalent in my life now and needing to be taken care of more urgently then I had anticipated or Dr. H had anticipated and that is what the main focus of my Follow up will be when I go back end of April OTC and further review f my rotational issues cause an addendum in my CT was added that Dr. H didn't see which involved a seemingly high rotation at C7

Here's what happened next:

First thing first, I got online after my appointment with Henderson. Facebook has amazing support groups for EDS and related conditions and I posted out to the Beyond the Measurement Group that I needed a Second opinion on OTCR and who did they go to? I got a response from a mother of a young male with severe OTC, POTS & EDS, she reached out to me and gave me a name of a surgeon in NY that operated on her son and it has gone incredibly well. (and he was the first OTC/EDSer he had operated on!) Anyways I spoke with this women and she also reffed me to Dr. Pradeep Chopra of Pawtucket, RI and helped nudge me to email him about my situation and see if he could squeeze me in. And so with nothing to lose that is precisely what i did. I emailed Dr. Chopra and told him about my OI and neck and back problems that I would extremely value his opinion on if i should and would he do a root block on me... cause my fear is that from my limited research on root blocks they are just a combo of a steroids (which doesn't work) and a anesthetic and the immediate relief from the injection would be from the anesthetic and if it helped then they maybe cauterize the Occipitol nerves or something and this all sounded like it was gonna be a non starter for me cause i believe steroids only weaken and loosen me further and i don't want that in my skull thank you very much but i wanted to consult with someone very familiar with EDS and Pain management and guess what this. incredible doctor, Dr. Chopra emailed me back himself on a Saturday night and said call Monday morning and that his office would fit me in that next week! I was floored shocked and so grateful. Next I had to figure out 1) how was i getting to RI from Maryland and how would I re book my tickets. 2)Would insurance approve it 3)where were we gonna stay 4)Was the Urodynamics gonna be covered and much more. 

Extras: Now if you can't tell already I never went anywhere or did anything but the above things in Maryland. Our host was amazing and took me to nearly all my appointments and anywhere we wanted or needed to go. She wanted to take me to the famous buildings and show be DC but my stomach was acting up something fierce and mom and I binge watched Gilmore Girls on the Laptop the whole time while I kept my tummy under heat. The weather was really beautiful but the pain was spiking high. I did have a lovely visit with a wonderful fellow tumblr spoonie friend which was such a treat and I am thrilled that happened. I've waited a long time to post this extremely detailed encounter of my trip (most written on the trip) it is very personal and I wanted it to be just right, however I've been sicker and less able to concentrate since the trip and i feel in order to understand my decisions currently and in the future some of this back story is necessary and I promised to post this so long ago, it may have taken time but i keep my promises. Sorry I if some parts are less coherent or have many errors. It felt like it needed to go out cause i was never gonna make it perfect. 

....Part II coming soon..Dr. Murdoch, Dr. Chopra, Insurance, The Call,  The Plan. 

I've been away waay too long

It's been over a year since I've posted here cause mainly I feel the EDS/ Spoonie community is still on Tumblr and Instagram (and of course facebook) but also I've been truly too sick too move let alone write, read, edit and post, plus sometimes im a bit of a perfectionist and overthink my writing way to much. But I want a place that is strickly for my thoughts and experiences about my medical life. Here is the perfect place to do it and what do you know I've tried this before so might as well pick up where I left off on the same blog. I'll fill in the gaps between jan and october some time later down the line if need be but Im gonna pick up from the most pivotal part of my life to now and hopefully keep on writing /videoing when I can as time goes on with shorter updates

I promised  myself and my tumblr followers to give details on my East Coast Excursion from October 2014 and those posting are coming very soon and much more too. I'm Getting all my ducks in a row and will be more active again soon hopefully, ill be able to keep it up. At least getting you all up to date on current medical events. I am working on editing  the writings I've made over the last  three-ish month (mostly from the time of the trip) to make them as coherrant and complete as possible, but they are long and theres just no way around it for me it was two weeks of continues medical appointments and information plus I want to share it all, I like my details and rants so that is what you can expect coming in the next few days likely in two parts cause it is a lot of info and a lot of frustration too. the trip was extremely wild in retrospect.

Thanks for the support and patience. I am doing this mainly for myself but also if I can help anyone else out there in a position like me or like I was in, I want to spread whatever help or knowledge I  can. Also want to spread as much awarness about these conditions as possible.

Spread the word and Spread the Love.

Peace and Healing to Everyone.

TEC