New Doctors, More Testing, and Surgery

Back in April, I finally got an appointment with the neurologist here in my town after waiting over a year for my new patient appointment. Although I had a neurologist up in Denver in the interim, he was simply just an okay doctor in my opinion – while he supported my theory of a POTS diagnosis (which I ultimately received last summer), he kept referring everything to my cardiologist and didn’t really seem that interested in doing his own investigation of my symptoms. He was also an hour’s drive away when there was little to no traffic, so I was obviously excited to finally have a specialist here in town. Immediately after meeting with the new doctor, I could see why there was such a long wait to get into the practice – she was fabulous!

After reviewing my case in detail, she was horrified that no one had done an MRI of my head as of yet – Thank you! That’s what I’ve been saying – especially considering the number of head injuries I’ve had back when I was cheerleading. She also ordered another Electroencephalogram (EEG) since evidently my first EEG was only reviewed by the technician who performed it and was never signed off by my neurologist, which was a lovely finding I might add. Thankfully, my EEG came back as being normal again, confirming that I was NOT having temporal lobe or partial seizures as both neurologists had suspected based on my primary neurological symptoms of migraines, cognitive impairment, visual aura, and olfactory hallucinations. Basically, the negative EEG results confirmed that I was suffering from Status Migrainous or intractable chronic migraines as originally suspected. Although I had started taking gabapentin after my first appointment with the neurologist, which seemed to provide a little bit of relief of my symptoms, the doctor decided to also start Botox Injections since the migraines were confirmed to hopefully get them under control.

I had my first injections back on May 4th and so far they have really helped. Although my migraines have not completely disappeared as of yet, they have been less intense and a lot less frequent than they were prior to the injections. However, they do say it can take a few rounds before they will know if it will work effectively, so I’m hopeful that they will only continue to improve after my next appointment with neurology in August. Nevertheless, I was much more anxious about what the MRI would [or would not] show than the results of the EEG.

To my surprise, the MRI showed that my brain was fine. There were no brain lesions, tumors, growths, signs of stroke, etc.,  which was really good news. The rest of my head, though, not so much…

MRI of the Head/Brain W/O Contrast

FINDINGS:

The brain parenchyma is unremarkable. The diffusion weighted images demonstrate no evidence of recent infarct.No evidence of hydrocephalus. The pituitary gland, pineal gland, and corpus callosum regions are normal in appearance. There is no intracranial hemorrhage. No extra-axial fluid collections are present. The orbits, cavernous, and para cavernous regions are unremarkable.

The paranasal sinuses demonstrate complete opacification of the right
maxillary antrum, with maxillary sinus wall thickening, suggesting chronic sinusitis. There is a rim of T1 shortening and associated susceptibility within the mucosal thickening, which could represent inspissated mucus or possibly allergic fungal disease. There is no associated expansion or erosive change identified to suggest mucocele. There is a retention cyst within the right sphenoid and likely along the roof of the left sphenoid. Mild mucosal thickening within the left maxillary antrum.

The calvarium, skull base, and craniocervical junction are preserved. Normal vascular flow-voids are identified.

Impression: 

  1. Unremarkable MR appearance of the brain without contrast.
  2. Paranasal sinus disease as described, including complete opacification of the right maxillary antrum, with suggestion of chronic maxillary sinusitis. Ring of T1 shortening and susceptibility within the right maxillary antrum could represent inspissated mucus or possibly allergic fungal disease. 

So what does all this mean? According to the neurologist, it means that I needed a quick referral to an ENT for evaluation. Great – another new doctor.


At the same time all this was going on, I also had two other MRIs  (aside from the one on my brain)  to evaluate the acute pain I suddenly was having on my right side that further radiated down into my pelvic region. Although the first MRI was supposed to be on both my abdomen & pelvis, it only was approved as an abdominal MRI. Not surprisingly, since it didn’t show anything other than the vascular compressions seen on my earlier CT scans, they ended up having to order another MRI of my Pelvis a few weeks later. Thankfully, given the amount of time that had passed between tests, the concern about appendicitis had pretty much been ruled out.

MRI of the Pelvis W/ and W/O Contrast

Findings:

Pelvis Mesentery: Small quantity of free fluid within the posterior dependent pelvis, primarily within the rectouterine pouch of Douglas with trace fluid also adjacent to the lower aspect of the uterine fundus.

GI:  Small tubular structure originating from the base of the cecum, just below the terminal ileum, with location and appearance most consistent with the appendix, normal in appearance and size (for instance image 41 series 6). No abnormal
surrounding T2 signal and no abnormal contrast enhancement about the terminal ileum or appendix region. Normal appearance of the terminal ileum (for instance image 37 through 39 series 6).

Uterus: Uterus is normal in size and appearance, with normal anteflexed uterine
fundus. Cervix is normal in appearance by MRI evaluation.

Adnexa: There is a 1.8 cm peripherally enhancing cyst in the right ovary, with mild heterogeneous internal T2 appearance, with normal internal T1-weighted isoechoic appearance. Several small follicles in bilateral adnexal regions.

Impression:

  1. Small 1.8 cm peripherally enhancing cyst in the right ovary. Small quantity of free intrapelvic free fluid. Right ovarian cyst may represent a previously ruptured right follicular cyst. Per current radiology criteria no further specific follow-up for this right ovarian cyst is required.
  2. No MRI findings to indicate appendiceal pathology, including no abnormal edema or enhancement surrounding the cecum or appendix.

Although it states in the report that no further up was needed for the ovarian cyst according to radiological criteria, my gastroenterologist disagreed and, therefore, referred me to my gynecologist for further evaluation.


At first, my gynecologists wasn’t extremely concerned about the findings of the report. However, there was some concern was that the cyst did have a heterogeneous appearance, although this could mean anything from being benign growth all the way to cancer. He sent me for a follow-up transvaginal ultrasound, which he said was the preferred method for evaluating ovarian cysts, just to be safe.

US Pelvic Transvaginal

Findings: 

The myometrium is heterogeneous but no distinct mass. The endometrial stripe is within a normal range for age. There is a small amount of free fluid. Both ovaries are well-visualized. In the right ovary, there is a partially collapsed but otherwise simple appearing cyst in the right ovary, which on my repeat measurement is 17 x 9 x 15 mm in size. The larger area measured by the technologist is not well-defined and likely includes normal variant parenchyma. Otherwise, there are simple follicles

Both ovaries are well-visualized. In the right ovary, there is a partially collapsed but otherwise simple appearing cyst in the right ovary, which on my repeat measurement is 17 x 9 x 15 mm in size. The larger area measured by the technologist is not well-defined and likely includes normal variant parenchyma. Otherwise, there are simple follicles under 1 cm in size in both ovaries.

Impression:

  1.  17-mm partially collapsed but otherwise benign-appearing right ovarian follicle.

The good news was that the cyst itself was benign. The bad news, however, was that the cyst had virtually stayed the same size during the month and a half between testing, despite being collapsed in both scans. Basically, the cyst seemed to be refilling itself over and over with fluid (likely blood), thus explaining the free fluid throughout my pelvis that should not have been there.

The doctor gave me a shot of Depo-Provera, which contains the hormone progestin, in hopes of getting rid of the cyst since it likely wasn’t going to go away naturally on its own. If the shot didn’t help to get rid of the cyst in 6 weeks, the doctor informed me that it would have to be surgically removed. Great

Lucky for me, however, the Depo did its job and the cyst was virtually gone during the next transvaginal ultrasound.


Just as one surgery was crossed off my list, another one was added. After I met with my new ENT about the results of my head MRI, he ordered a CT of the head to confirm the extent of the damage marked in my first scan. As expected, it only accentuated the fact that I would need surgical intervention on my sinus cavity.

CT Sinus Complete

Findings:

The sinuses are normally developed bilaterally.

The frontal sinuses are normally aerated. Minimal thickening cannot be excluded in the left ethmoid sinus. Right ethmoid sinus is normally aerated.

There is marked diffuse opacification of the right maxillary sinus, consistent with marked chronic inflammatory disease, and associated thickening of the inferior and lateral maxillary sinus bony wall. Small areas of probable calcification representing debris are noted within the chronic inflammatory tissue.

Minimal thickening is noted involving the left maxillary sinus.

The right ostiorneata complex is obstructed. The left ostiomeatal complex is patent.

Mild thickening is noted in the right component of the septated sphenoid sinus .

There is very minimal undulation of the nasal septum, but no significant deviation.

I just had endoscopic sinus surgery this past Friday, which including a septoplasty, turbinate reduction, antrostomy, and sinusplasty. So far, everything has been going good, except that the recovery has been much harder than I had originally expected. I’ll go over all the fun details, with pictures, hopefully in my next update.

Although all of this may seem like a lot, I still haven’t gotten to the best part – A new vascular surgeon and substantially larger surgery here in the near future – but that is definitely a story I’ll have to share another day.

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A Review of my Medical Journey From the Last Year

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Since restarting my search for a diagnosis in February of last year when I started at the research hospital, I’ve been through a lot of doctors and a lot of medical testing.

Well, it got me thinking –  Just how many tests have I done?

 Being as OCD as I am, I decided to look through my list of notes and test results so that I could write it all down (in list form of course). Eventually, I’m hoping to upload some of my test results – along with an UPDATED diagnoses list – for comparison.


Doctors I’ve Visited

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Primary Care Doctors:

  1. PCP-A
    • Scarred and butchered my scalp biopsy (with no anesthetic, by the way), forgot to order tests, couldn’t fill out paperwork, the office staff was horrible, the list goes on and on…
  2. PCP-B
    • Told me she’d review my record and call me with a plan- never called after multiple attempts over 2 months. I went as far as to file a complaint with the office manager, who promised me at least a call, which never happened.
  3. PCP-C
    • Told me I was simply dehydrated and depressed, despite having initial diagnoses at the time.
  4. PCP-D
    • FINALLY – a good PCP and my current doctor.

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Medical Specialties:

  1. Vascular Surgeon #1
  2. Vascular Surgeon #2
  3. Vascular Surgeon #3
  4. Neurology #1
  5. Neurology #2
  6. Dermatology #1
  7. Dermatology #2
  8. Cardiologist
  9. Electro-cardiologist
  10. Immunologist
  11. Rheumatologist
  12. ENT/Allergy
  13. Gastroenterologist
  14. GI surgeon
  15. Urologist
  16. Gynecologist #1
  17. OGynecologists #2
  18. Physical Therapist
  19. Optometrist
  20. Psychologist
  21. Neuropsychologist
  22. Chiropractor
  23. LCSW
  24. Nutritionist

Procedures (Under Sedation)

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  • April 2015 – Esophageal Dilation and Internal Biopsies
  • May 2015 – Endometrial Ablation
  • December 2015 – Venography

Medical Testing and Imaging

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2015:

March

  • CT Abdomen & Pelvis
  • Pulmonary Function Tests – Pre & Post
  • Spirometry
  • Allergy Test – Skin Scraping

April 

  • Abdominal X-Ray
  • Tailored Barium Swallow
  • Colonoscopy & Endoscopy
  • X-Rays of both Ankles

May

  • Abdominal Ultrasound RUQ
  • Gastric Emptying Study

June

  • CT Angiogram Abdomen & Pelvis
  • Electroencephalogram (EEG)
  • Spirometry
  • Fecal Cultures

July

  • Electrocardiogram (ECG)
  • Echocardiogram with Agitated Saline

August

  • Skin Biopsy
  • Cardiac MRI
  • Exercise Stress Test
  • Holter Monitor
  • Spirometry

September

  • X-Ray of Spine

October

  • Sitz Marker Study
  • Upper GI Series
  • Small Bowel Follow Through
  • Hydrogen-Methane Breath Test
  • Spirometry
  • Abdominal X-Ray Supine

November

  • Hepatobiliary (HIDA) Scan
  • Electrocardiogram (ECG)
  • Holter Monitor
  • Echocardiogram

December

  • Venography

2016:

January

  • Renal Ultrasound

February

  • Anorectal Manometry
  • MRI Abdomen

March

  • Tilt-Table Test
  • Electrocardiogram (ECG)

April

  • MRI Pelvis
  • MRI Head/Brain

May 

  • Transvaginal Ultrasound
  • Renal Ultrasound
  • Electroencephalogram (EEG)

June

  • Transvaginal Ultrasound
  • CT Maxillofacial

Blood and Urine Screening

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  • Urinalysis and Urine Cultures
  • Routine Blood Screens:
    • Comprehensive Metabolic Panel (CMP)w/ and w/o eGFFR
    • Complete Blood Count (CBC) w/ and w/o Differentials
    • Electrolyte Panel
    • Liver Panel
    • Kidney Function Tests
    • Celiac Disease Panel
    • Thyroid Screens
      • TSH
      • TSH 3rd generation
      • T4
    • Electrolyte Panel
    • Lipid Profile
    • Cholesterol Levels
    • Serum Vitamin Assays
      • Vitamin D
        • Total
        • D3
        • D 25-Hydroxy
      • Vitamin B12
      • Folate/Folic Acid
      • Calcium
    • C-Reactive Protein
    • Antinuclear Antibody Panel (ANA)
    • Serum Iron Testing
      • Iron and Iron Binding Capacity
    • Rheumatoid Factor
    • Creatinine with eGFR
    • Erythrocyte Sedimentation Rate (ESR)
    • Amylase
    • L-Creatinine
  • More Specialized Blood Screening:
    • Antibody Screening
      • IGA
      • IGE
      • IGM
      • IGG
      • CK
      • CS
      • Tissue Transglutam AB IGA
      • IGE-RAB, Chronic Uticaria
      • IGE Receptor Ab
      • DNA AB (DS)
      • anti-RO/SSA, and Anti-LaSSB
      • CCP Antibodies
      • Beta-2 glycoprotein IgGG and IgM
      • Cardiolipin
    • Sjorgen’s SSA
    • B. burgdorferi Screen Rflx
      •  B. burgdorferi Ab, IgG,IgM
      • B. burgdorferi Ab, IgG (WB)
      • B. burgdorferi Ab, IGM (WB)
    • Growth Hormone Somatotropin Test
    • Cortisol (AM)
    • Blood Clotting Tests
      • Prothrombin Time (PT)
      • International Normalised Ratio (INR)
      • Dilute Russell’s Viper Venom Time (dRVVT)
    • L-Protein Electrophoresis
    • Nutritional Panel w/ Prealbumin
    • Blood Typing

There’s Hope In Front Of Me

Does everyone with a chronic illness feel like they’re drowning in medical appointments or is it just me?

Lately, it feels as if they’re never-ending…

Take this last week, for example – I had 6 medical appointments. The week before, I had 6 appointments as well. This upcoming week, I have 5 scheduled. I originally had 7 but I was released from physical therapy on Friday (long story, which I’ll update at another time). All  of April was pretty much the same thing and the rest of May isn’t looking that much better. Honestly, I’m so exhausted from trying to manage all of these appointments and there is barely  time to think, let alone do, much of anything else (e.g. school work). It feels like I’m never going to get a break at this point – and it’s really not helping my symptoms either. The only good part is that we’re finally starting to make some progress.

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I have a few new diagnoses and some possible new treatment options to look forward to, including the possibility of a few surgeries. Although I was skeptical at first, 2016 does seem to be my year after all – it just got off to a slow start I guess. If nothing else, all of this forward motion has given me hope once again.

Hope In Front Of Me

By Danny Gokey

I’ve been running through rain
That I thought would never end
Trying to make it on faith
In a struggle against the wind
I’ve seen the dark and the broken places
But I know in my soul
No matter how bad it gets
I’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a place at the end of the storm
You finally find
Where the hurt and the tears and the pain
All fall behind
You open up your eyes and up ahead
There’s a big sun shining
Right then and there you realize
You’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a hope still burning
I can feel it rising through the night
And my world’s still turning
I can feel your love here by my side
You’re my hope
You’re the light, I still see it
Your hands are holding me
Even when I don’t believe it
I’ve got to believe
I still have hope
You are my hope

I can’t take this anymore and I’m almost pretty sure I’ve been here before…

I’m tired of having to prove

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HOW SICK I AM…

It seems like a never-ending battle at this point. Although I have multiple diagnoses currently, I am continually asked to provide the evidence that I am, in fact, actually sick. It’s becoming exhausting.

First it was with the doctor’s, claiming my symptoms to be all in my head.

Then it was with Short Term Disability, where I was denied initially and told that “I am not actually sick”. They then approved me, of course, with more “evidence” – AKA spending my free time in hospitals, going from doctor to doctor, to find even a clue to the cause of my mysterious symptoms.

Next, SSDI wanted me to not only prove that I was sick, but sick enough – according to their standards – to be disabled. Months and hundreds upon hundreds of pages of medical records, I am told I am NOT disabled because “despite my substantial limitations and exceptionally large medical record,  somewhere out there is a flexible job in which I can lift a single piece of paper for an hour or so a day” (Their words, not mine).

After this, I finally got to meet with a surgeon who could supposedly help me. He said that while he does see the vascular compressions and they COULD POSSIBLY be the cause of all my symptoms, a CT scan and CT Angiography are not enough proof that I am actually sick – because it could be coincidence, after all. He told me to either come back with more proof or keep searching for another answer.

The vascular surgeon I saw before him also told me the same thing. Meanwhile, my current vascular surgeon is “worried treating me will make everything worse” – like it could potentially get better on its own? I’ve been having symptoms over 20 years, so that’s highly doubtful.

I’m in the process of converting my Short Term Disability into Long Term Disability – another way in which I get prove how sick I am once again.

I told my therapist that it’s like literally living through the definition of insanity – repeating the same things over and over again, expecting a different result.

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  • We’re repeating tests at this point, getting no new answers.
  • No treatment either, just nonstop appointments and medical tests.
  • Where do I “keep searching”?

So far, I’ve seen: 

Multiple Primary Care doctors

Multiple Gastroenterologists

Multiple Cardiologists

Multiple Vascular Surgeons

Multiple Psychiatrist/Psychologists/Social Workers

Multiple Urgent Care Clinics/Hospitals

Multiple Gynecologists

Multiple Dermatologists

Multiple Chiropractors

Neurologist

Immunologist

Rheumatologist

Urologist

GI Surgeon

A Psychic Medium

When does this madness end?

Does it ever end? Will I ever get a break? 

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When is it finally time to give up?

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In the meantime, I am getting worse – and more systems are becoming affected. Not to mention that two young girls that belonged to one of my online support groups passed away last weekend (both of which were diagnosed as having one of the “controversial” vascular compression syndromes that may or may not be causing my symptoms). One of their stories, sadly, hit a little too close to home.

Her name was Alyssa Landrith and she was only 18 years old. She fought the medical system for many years, told it was all in her head and that she suffered from anorexia. Even after her SMA Syndrome diagnosis, she still had to fight for treatment. As a result, she left this world far too soon – unnecessarily. Not surprisingly, her mother’s announcement was heartbreaking to all of us in the SMA support group. However, the blow is even harder because Alyssa represents a small part of each one of us that are fighting this illness.

Her story is my story – and other people’s stories. 


Pictures from the SMAS support group and Alyssa’s Go Fund Me Page:

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“This beautiful girl lost her life to starvation Friday evening November 6, 2015.  She was eighteen years old.  She had Superior Mesenteric Artery Syndrome and Gastroparesis, both rare digestive conditions that my daughter also is battling. Her name is Alyssa Landrith.  Her mom is Lori Landrith.

This picture was taken before the illness set in. She has slowly starved to death. She continued to get sicker, while medical institutions diagnosed her with psychological conditions (which were secondary to the digestive conditions).”

Retrieved from  Alyssa’s Go Fund Me Page


Many years ago, when I got down to 87lbs, this could have been me!

Somehow, I learned to compensate – perhaps not in the healthiest way, but it has kept me alive.

Still, the reality of living like this my whole life,

with no treatment or intervention,

is both terrifying and heartbreaking.

How do I make the doctors understand?

How do I PROVE to them that this is real?

That all the vascular compression syndromes are real?

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There’s got to be a better way. 

There’s has to be a reason to keep searching.

Maybe someday I’ll find hope once again.


“I can’t take this anymore
And I’m almost pretty sure
I’ve been here before
I can’t take this any longer
I won’t heal until I’m stronger
Strong enough to not be afraid
Of what anybody thinks
Of what anybody says
About the way
About the way I am
So I’ll wait until the day
When those feelings fade away
Then I’ll make my break

Everybody and everything I’ve known
Never taught me how to stand up on my own
Had to learn it from the one who let me go
Now I walk alone
Yeah I walk alone, yeah
I walk alone
I walk alone
I walk alone
I walk alone
I walk, oh yeah”

(Oleander – I Walk Alone)

Cause I went to hell and back just to be where I am today

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I kept hoping and praying, haunted by dreams about my upcoming vascular surgery appointment. After the last visit with a highly recommended vascular surgeon (posted here) I just knew I couldn’t handle yet another doctor making me feel completely invalidated by saying “while it appears that you do, in fact, have these vascular compressions visible in multiple scans, the syndromes don’t exist and you can’t have that many rare conditions anyway.” 326f193abca524f9e98fbd8d7140e0c1After all of this… the nonstop tests, countless doctors appointments, misdiagnosis, and judgments against my mental health status… I just knew I wouldn’t be able to handle another major disappointment. But I also can’t keep living this way either.

Figuring there’s nothing to lose at this point, I asked my cardiologist for a referral for a second opinion at our last appointment together and he gladly obliged. To my surprise, he put it in as an urgent request. Just two days later I received the call from the vascular surgeon’s scheduler with an opening for the following week. It took me almost four months to see the last surgeon so I was pretty impressed. My records, however, didn’t make it on time for how quickly they scheduled me and the doctor was going need the actual imaging, not just the reports, to do my consult so I had to reschedule. In fact, my husband had to drive me over an hour into the city on two separate occasions to physically pick up my records because the scans were done at separate hospitals. Both kept ignoring requests from both the new hospital and myself as well, despite writing “urgent” all over them. So frustrating!

Although I was nervous about starting over at a completely different hospital because I was completely comfortable and used to my current site (I really am a creature of habit), the cardiologist planned to send me to this location for the dysautonomia clinic anyway. It’s easier when my doctors are located within one location or network because of the number of specialists I have on my medical team now and it’s next to impossible to get them all to communicate with one another unless they physically working together it seems. However, this still didn’t stop my nerves about the appointment. As far as the vascular compression syndromes are concerned, this was really my last shot to find a doctor in the state who could treat these conditions. No pressure or anything.

As we pulled up, I instantly felt like the new kid in school. The campus was huge and it took us a moment to not only find the building that my appointment was in but where to park as well. We thankfully left early and gave ourselves plenty of time.

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It was a good size walk from the parking garage to the building, so I was extremely dizziness and nauseated by the time we got into the lobby on the third floor. I checked in and went to have a seat. I was amazed at the size of the lobby, it looked like there were  at least 50 people in there waiting. I had a sinking feeling come over me, stunned at the number of people who were waiting ahead of us. ‘Oh please, let them have a ton of doctors working today because I really don’t feel that good and I don’t think I can wait that long…” I also knew we had at least another hour or so drive back home to get through as well and all I wanted to do was go home and go to sleep.

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Luckily, the wait wasn’t too bad – only about 15 minutes after my scheduled appointment time when they brought me back to the exam room. The nurse took my vitals and history before she left to bring the doctor my hand-delivered scans. I assumed it would be a while so I squirmed into the most comfortable position in my chair I could find (which was not really comfortable at all) and attempted to sleep. It didn’t last long.

About five minutes later, there was a knock and the exam room door opened. That was quick… I start to get up but I’m taken aback a bit. A young gentleman (younger than me anyways) walks into the room. This doesn’t look like my doctor… I googled him. He introduces himself as being a medical student studying under my doctor. Ohhh. Right. This is a medical school after all. He seems nice enough but still…while I can appreciate the intelligence, endurance, and drive it takes to become a medical student,  I can’t help but feel slightly disappointed. Is he going to be the only one doing my consult? I have a complicated case. I’m instantly worried once again. Maybe they think it’s in my head as well and that’s why I’m only seeing a student. I’m paranoid at this point.

He takes a very short history of my symptoms, only asking a couple questions really, and then says he’ll let the doctor know. Phew. Ok. He’s just getting some information. I will be seeing the doctor then. I feel a sense of relief. Remember, I’m at the end of the road here – I need everything to be perfect. (You can’t blame me, though, for worrying after all the mess I’ve been through just getting to this point.) A few more minutes after the student left the room was there a knock on the door once again. This time, I do see my doctor (which I recognize from the internet), but nothing could have prepared me for what followed in behind him. I felt like I was going to faint…

621-00787693tFirst it was one. Then another. And another.
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One-by-one, medical students slowly filled every corner of my exam room.

And they’re all staring at me, intently.

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 Nope, not intimidating at all…

It caught me a little off-guard, honestly. Plus, I hate feeling like the center of attention. It makes me so self-conscious. I do everything in my power to have people NOT to pay attention to me. I wondered if this was normal protocol, as I had never been to a teaching hospital before. Don’t embarrass yourself, Nikki. I send a sharp look to my husband, my eyes told him the same thing I told myself. He got the point.

I tried to stay focus on what the doctor was saying, but it was really hard not being distracted. Or a little claustrophobic. With every question I answered, I saw the students take notes. I wondered what they were writing… I wondered what they thought of me. Do they think my case is interesting? Or do they think I’m crazy and making this all up? I couldn’t read their faces.

The doctor confirmed he saw everything in the scan that he saw in the radiology report. The Nutcracker Syndrome. The Superior Mesenteric Artery Syndrome. The May-Thurner Syndrome. We even all watched the scan together, where he pointed out exactly what my body was doing, where it was compressed, and how he could tell – rewinding to those parts so I could watch it more closely. He explained everything as we watched the iodine flow down toward my left kidney, only to move itself back out of the renal vein (instead of through it) and into the lumbar spine/ plexus. He said that my body learned to adapt to the compression by creating collateral pathways to compensate for the lack of blood flow, almost like a survival mechanism. Wow. The human body truly is a magical thing.

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He also asked a ton of questions – specific questions – and wanted detailed answers, such as how it feels when this happens or what happens after that? I provided him with situations and stories. I pointed to where it happens. I told him how it hurts. I gave him everything I could think of at the time.

As I explained each and ever pain, he listened. 

With every detail, the students kept writing.

I could hear their pages turning in the background. When it was quiet and I had given every account that I could, the doctor turned to his students, “So, do we all agree with  pelvic congestion syndrome?” They all nod their heads in agreement. He asked me if I’ve heard of it, I had but hadn’t studied into too much but it honestly wasn’t a shock because it’s a very common cause of pelvic pain and many patients with either Nutcracker Syndrome or May-Thurner Syndrome have also been diagnosed with it as well. He told me to go home and google it to make sure it fit. Um, ok. No doctor has told me THAT before but sure. So I did.


The doctor says they are going to schedule venogram to confirm the diagnosis. If they can, they’ll just fix it while they are in there. They’re also going to test the pressures of the other the compressions and see if there are any further abnormalities during the procedure as well. Perfect, we’re getting somewhere.

I still had one more question, though, but I was almost afraid to ask. But I knew I needed to. I took a deep breath…

So, do I definitely have all of these syndromes?

The SMAS, NCS, MTS, and now possibly PVCS?

They actually exist and I have them?

The doctor then gave me the most profound answer I’ve heard to date.

He said:

“It doesn’t matter what you want to name them.

It’s clearly happening in your scans, you saw it.

Call it whatever you want.

 Your symptoms, as you described them,

are EXACTLY what one would EXPECT you to feel.

The tests prove it.”

Finally!

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He finishes by saying that they are going to conference on Monday morning. Other doctors and students will watch my scans again and make sure nothing else is missed. If they do find something, they’ll call and let me know what it was or if the treatment plan is going to change, but to otherwise go ahead with scheduling the venogram. They’ll also discuss how they want to handle the three other compression syndromes in their meeting as well. I thank him.

As I’m about to leave, one of the student’s asks if he could do an in-depth interview with me for Monday’s conference. He doesn’t want to miss anything or hear it second-hand. I obviously agree and we go through it all – again. He asks more questions and then even more based on my answers. He also offers advice about things that I could do to possibly help myself from now until [surgery]. By this point the hospital was closing down around us, almost everyone has gone home for the day. But he never rushed me once. He just continued asking his questions and listening, eager to know more and ensure that he gets my story right. He’ll never know how much that means to me, the patient.  

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When I got home I chatted with an online friend, who also happens to go to the same hospital for two of the same compression syndromes as well. I just had to know, was this how the hospital normally treat all their patients? She said no, not usually. Maybe only one or two. “But being rare gets you extra people”.  She had a large number of students during her surgery prep and throughout her recovery. They visited her every day.

It’s almost funny. When you’re undiagnosed, you hate the idea that you may not have a diagnosis because of some rare, unknown condition. You worry that nobody will ever find whatever it is and, therefore, you’ll never receive treatment to feel better. Half the time, nobody believes you anyway.

But  I guess when you do finally get that rare diagnosis, suddenly you become the ZEBRA at the aquarium. Now, you’re medically interesting. Now, you can breathe.

I may not have the easiest road ahead of me, potentially filled with major surgeries and/or lots of pain. But once again, I can say I feel hope. I can go to bed knowing that I honestly tried everything that I could to take my life back, without worrying if the doctors would ever find out what was wrong with me outside of autopsy. I finally have options. A plan of attack. My diagnosis is on paper -and- it’s not a misdiagnosis this time. It is real – I saw it with my own eyes – and so did my doctors. And they believe me.

Now, I can finally say that it was all worth it.

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