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.

ihc-20quotes-never-give-up

14 thoughts on “New Doctors, More Testing, and Surgery

  1. Elizabeth B. says:

    I’ll tired just reading that. You’ve sure been busy! BUT it’s been a “good” (for ‘us’) busy, at least. I’m glad you’ve been making some progress with treatments and doctors. I’m sorry things have been so rough, but even small progress is good!

    I forgot when they did the MRI of the brain they saw the sinuses… I’ll need to ask the neurologist for a copy of that report. My ENT is trying to figure why my allergy symptoms are so weird and I forgot that my sinuses have been imaged! Thanks for the unintentional reminder, lol!

    Healing thoughts your way for the rest of your recovery! ❤

    Liked by 1 person

      • Elizabeth B. says:

        My ovarian cyst was massive when I had to have mine removed in 2009, so it was actually more obvious than my uterus LOL! Well, on the ultrasound. I didn’t get an MRI for it.

        I can’t remember if we spent much time looking at my sinuses, but I don’t remember anything remarkable about my head MRI at all… But either way I think it’s probably a good idea to at least send report over. I really need to go back to the neurologist. It was weird because he prescribed a medication and physical therapy and never told me to followup. I’ve never had that happen.

        Liked by 1 person

      • Elizabeth B. says:

        You’d think. I did take it upon myself to call in and get it adjusted when it wasn’t working (well, I asked the nurses what to do and they got it adjusted). If I wasn’t an experienced patient though I would have been frustrated and confused though.

        Liked by 1 person

      • The Undiagnosed Warrior says:

        Right? You have to wonder what kind of mess it would be if a patient was unfamiliar with the process of managing their own care. Guess that’s why it’s so difficult in the being when one is first looking for a diagnosis – it’s easy to assume that the doctor has everything covered when that’s actually not the case.

        By the way, have you had a chance to call University as of yet?

        Like

      • Elizabeth B. says:

        Not yet. I’ve been on a bit of a burn out as of late, and decided I just needed to take a small break. But I’m going to soon, probably. Also working on chasing down a few other Dx’s.

        Liked by 1 person

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