Just a little Tap

Post-Spinal Tap (lumbar puncture) Report:

It wasn’t as bad as I was expecting.

I arrived at the hospital at 8:00AM for my check in. After double checking with my insurance and of that registration routine, a lovely volunteer brought A and I back to the out patient surgery waiting room. (Is “A” getting annoying, or difficult to read? Maybe I’ll call him “Mr. Liar” from now on… although, taken out of context, that doesn’t sound too good, does it? haha) Within a few minutes they called me back, and I left Mr. Liar waiting in the waiting room with all my stuff.

The nurse had me change into a gown (everything but socks and panties), then came back in and did all of the usual check in stuff- height, weight, blood pressure, pulse, temperature, allergies, start date of last menstrual cycle (which, unfortunately was yesterday, talk about timing), so on and so forth. Then she left again. And I just sort of hung out for a while. About fifteen minutes later she came back and started asking me about what orders they were doing that day (remember how I said Dr. C ordered A TON of stuff?), so I sent her to gather Mr. Liar and my trusty bag of medical records.

Thanks to my up-to-date records binders, I was able to tell her which blood work I had already had completed, and she was able to determine exactly what tests to order for today. So, my tip for the day is get a copy of all your records and be sure to bring it with you to all of your medical appointments – you never know when you’ll need it, and it’s always better to have that information than not!

Anyway, back to the story. After verifying the orders, the nurse left for a few more minutes before returning with a blood tube and and IV kit. Apparently they needed blood for the MS panel, that would be run along with the spinal fluid. Getting the blood and putting in the IV was honestly the most difficult part of the day. My veins did not want to cooperate. The poor nurse tried my “beat up” good arm – still sporting it’s bruise from the last two weeks of blood draws- but it barely gave any blood, and when she tried to flush the IV it wasn’t positioned correctly and HURT. So she pulled it out and switched to my other arm. I warned her that the vein in my left are wasn’t as good as my right, and most doctors end up putting it in my hand. She felt my arm for a second and then decided to go for the hand. The needle when in, but wouldn’t give up any blood, apparently it was “a beautiful vein, but valvey.” Instead of poking me for a third time, she went and got another nurse who wanted to give it a go. He had the blood draw magic and after about a minute of feeling around my left arm, got the needle in the exact right spot to get the tube of blood, and attach and flush the IV.

After a bit of a wait, the radiology technician came and wheeled me away, leaving Mr. Liar waiting in the pre-op/post-op room. She wheeled to a room with a big x-ray table, leaving the bed outside the room and letting me sit in a chair and sign the necessary paper work saying I understood the risks of the procedure. The radiology technician was a lovely lady, and made sure I knew exactly what was going to happen, and I didn’t have any questions.
After getting everything set up, and explaining what would happen, she had me climb up on the table and lay on my stomach. Then moved a little monitor next to the table and positioned the x-ray machine over me. She covered my legs and back with a blanket, and tucked it into my underwear to protect them from the iodine she’d use to clean my back later. Then she took an image of my spine. The way I was positioned, I could see the monitor which was pretty cool.

After moving a tray closer to the x-ray table, she used iodine wipes clean my back and then draped surgical cloths around my back. She also took a pair of forceps and placed them against my back, then took another x-ray; it was pretty cool to see the forceps pointing to my spine on the monitor.

The radiologist came in shortly after that. He re-positioned the forceps, and used a pen to make a mark on my back where he was going to put the needle. Then, he used lidocaine to numb my back. I warned him that I metabolize lidocaine quickly, and he joked that I was putting him under pressure. Next think I knew, he picked up the needle, and had it in my back. It’s a long needle, but very thin; I was surprised it was so thin. Watching the x-ray, he re-positioned the needle twice (without removing it from my back). Then he took a pressure measurement of my spinal fluid. Since we needed spinal fluid for the test,  he used a syringe to draw up samples. He took four samples, and filled four test tubes. As he was drawing up the samples I got an intense headache, which throbbed each time he took out fluid. Once he had enough fluid he pulled the needle out and put pressure on the spot for a minute. And it was done. The nurse labeled the tubes, then washed some of the iodine off my back with alcohol wipes. Then she put a bandaid on the spot where the needle was. I think it’s kind of funny, I had the standard bulky folded cotton dressing taped to all the areas where they tried to draw blood, and a bandaid where the stuck a needle into my spine.

The radiology technician went and got the bed from the hallway, and had me roll onto it. At this point I still had a headache, but it was much better. To help, the radiology tech changed the level of the bed, so that my head was lower than the rest of my body. And then we went back to the pre-op/post-op room.

A post-op nurse. who was also lovely, leveled me back to a flat bed and attached me a blood pressure cuff and O2 monitor. I had to lay flat for over an hour after the procedure, and the machine took my blood pressure every 15 minutes. I was allowed to have some soda – so Mr. Liar helped me drink it without spilling all over myself. Slowly my headache went away, so that it was gone by the time the discharged me (though I don’t think they would have discharged me when they did, if I still had it.) We watched a few shows on Food Network while we waited.

After an hour and a half, or so, the nurse came in and raised the head of the bed so I could sit up some. She also informed me that she needed another tube of blood… Thankfully, the IV in my left arm flushed and gave us another tube worth of blood, so we didn’t have to poke me again. After drawing the new sample, she removed the IV, which was a relief. I find them to be so uncomfortable; although the pulling off of the tape is always awful!

A bit later I was allowed to get dressed and go to the bathroom, then sign my discharge papers. I’m to return to work on Monday (good thing I took the rest of the week off, and can do that so easily at my job!), rest for the next few days – but especially the next 24 hours, and leave the bandaid on for 24 hours. After 24 hours, I could also take a shower. And, at anytime I notice redness, swelling, pain, fever, or start getting a bad headache again I’m to call the hospital and ask for the radiologist on-call.

Then I got to go home! With orders to recline the seat in the car for the ride home.

I’ve spent the day watching Netflix in bed. I’ve walked around and sat up for a little, but too much of either makes my back hurt at the needle side. And if I’m up too long, the headache starts to creep back (though not too bad).

All and all, I’m certainly proud of myself for not freaking out the entire day. As scary as a spinal tap sounds, it wasn’t too bad. But I don’t want to do it again any time soon! (Or ever if possible!)

Worse Appointment Ever.

I met with the reproductive endocrinologist, Dr. E-H, today. I almost jumped across the desk to punch her. I’m still too angry to write the whole thing out, but I WILL NOT go back to see her again!

The gist of the appointment went like this: I get taken back to her office. She starts talking about my referral notes saying I was being sent to her for osteopenia following chemical menopause to treat endometriosis, and she has my bone density scan results. And that’s were things stop going well.
ALL she wanted to talk about was my endometriosis. Which was NOT why I was there; I was there to address bone density loss- which I actually had before starting the aromatase-inhibitor – the letrozole didn’t make it go down that drastically. So she starts asking why I got of the letrozole, which I tell her is because I ran out of pills and my new insurance doesn’t cover it. Then she starts pushing lurpon. –insert collective groan–

I tell her I WILL NOT, under any circumstances, go on lupron. I don’t believe it is a sound choice for managing endometriosis, and the only reason I agreed to go on the letrozole was because it makes more sense than just shutting down the ovaries, since the endometriosis lesions can produce its own estrogens whereas lupron is a GnRH-atagonist and only shuts down the ovaries. So she tells me, “endometriosis can be activated by the ovaries so shutting them down works, and letrozole doesn’t get rid of all the estrogens either.”  Which, may be technically true, but it just because both don’t suppress all the estrogens you produce, that doesn’t mean lupron an attractive option.

So then I tell her that I don’t know how my periods will be, since I’ve been on it since I had the surgery, and the excision of my disease should have removed it. She decides to tell me the disease can’t be removed completely, and I answer that that is controversial. Her reply, get this, “No it isn’t. I research endometriosis”

.. Okay BITCH. I’m no stranger to research, and while I may not conduct endometriosis research 1) I DO have a Master’s of Science in Reproductive Physiology, so I’m not clueless, and 2) stay as up-to-date as I can on contemporary endometriosis research. And I haven’t seen your name anywhere. And I’ve seen data from surgeons that shows 0 recurrance of the disease that has been properly excised (thank you to all the talented surgeons and researchers who share their data and opinions on EndoMetropolis) AND 3) JUST BECAUSE YOU MAY CONDUCT RESEARCH IN SOMETHING DOESN’T MEAN YOU KNOW EVERYTHING ABOUT IT. I’m a PhD student – I clearly know a thing or two about research. You can’t tell me any researcher knows everything about a particular topic. And anyone who does, I know is full of bullshit.

So I’m FUMING by now. And she looks at me and goes “Well I don’t know what you want me to do, why are you here?”
UM. Because a doctor I trust thinks I have loss too much bone mass for my age, and thinks why should be investigated. Because of the OSTEOPENIA that the referral said.

So she starts talking about how if I go back on letrozole, she’ll have to add back some estrogen. And I tell her, again, that I won’t be going back on the letrozole because my insurance doesn’t cover it (I think I told her that at least 4 times).

She repeats “Well I don’t know what you want me to do.”

ARE YOU FUCKING KIDDING ME?!?!

So she finally agrees to check my parathyroid hormone (PTH) levels, since my thyroid panel was just checked and came back normal. And “your thyroid or parathyroid hormone usually are the cause of bone density loss, I’ll run the PTH but I think it will come back normal. So if you go back on letrozole to control your endometriosis I’ll have to put you on some estrogen and progestrone too.”

o.O

What great listening skills she has.

THEN, to top it all off, she asks me and A (he drove me, because he’s the best and the appointment was an hour away) if we’re planning on having kids anytime soon. No, not until we’re out of grad school. So she’s like “well, you’ll need some birth control pills.”  … So I laugh. I literally laugh. And tell her that won’t be a problem. We don’t have intercourse. And I look to A for back up, and he collaborates that we’ve had sex once in the past year. And Dr. E-H goes “well it only takes once.”

Yes, I know. I have a Master’s of Reproductive Physiology. I literally MADE BABIES during my master’s (cow embryos anyway). AND, OH YEAH. THERE ARE THESE THINGS CALLED CONDOMS. I don’t need to be on pills to have safe sex.

I mean, talk about pushing hormones. Damn.

I left so mad. When I seem my PCP again I will tell her I will NEVER go back to Dr. E-H. And if she is really concerned about why my bone density 80% of age matched peers, then she’ll need to send me to see someone else – maybe a regular endocrinologist would be a better approach.

Oh, and I looked up Dr. E-H’s publications. She has 8 publications total, and only 1 of those is related to endometriosis. The entire publication is 1 page long, and the study is incredibly poorly designed. Like the kind of publication I’d tear into during a journal club meeting, and throw out completely if doing a literature review. … And she says she researches endometriosis. Apparently not well …

Spinal Tappppppp

I finally got the orders from Dr. C, for all that testing she wants done. I picked them up on Friday, promptly went over to the student Health Center for my administrative referrals, and then called where I could to schedule the appointments.

The neuropsychologist office is the only appointment I couldn’t make, as Dr. C’s office has to contact his office (Dr. H),  then send him all my file, and wait for his office to contact me to schedule. I expect that one to take some time.But I’ve gotten all the others set up. I’ll see the ophthalmologist, Dr. F, late in October (the 23rd). The MRIs (brain and cervical spine – both with and without contrast) will be on the 13th; I expect to be in the imaging center for a long time that day. And the spinal tap will be on Wednesday. That’s right, September 30th. I really didn’t expect it to be so quick.

On Tuesday, 29th, I have to do a radiology consult, before the actual procedure, and then at have to be at the hospital at 8:00am the next morning.
I’d be freaking out if I had anytime to. But as of right now I have a ton of homework due Monday, an appointment with the reproductive endocrinologist Monday (Dr. E-H; but this appointment may or may not be canceled, as she had a family emergency out of state come up on Friday and her office was unsure if she’d be back in time – if she isn’t then my appointment will be on Friday of the same week.) Class from 1-4pm on Monday, which I may or may not make it to depending on the doctors appointment. The radiology consult on Tuesday. The spinal tap on Wednesday. Maybe a doctors appointment on Friday… and I’m sure a ton of homework I’ll have again for the next week.

Hopefully I won’t get the horrible headache that affects 25% of people after a spinal tap, where you have to lay FLAT on your back for a few days to clear up. It’ll be just my luck that I will though, so I’ve taken off for the week, just in case.

Any last minute tips for preparing for, and recovering from, a spinal tap? This is the one test that has me incredibly nervous and anxious; the thought of a giant needle in my spine is terrifying…

My new record.

They took 7 vials of blood this morning.

That makes 7 my new records for number of vials taken for blood work in one draw.
And the phlebotomist who did is the best. I don’t have great veins in my arms; she’s the only one who can get me on first stick AND not cause a huge bruise. I just get a tiny little red prick mark when she does it.

Plus her name is Brittni, so she’s as cool as me, plus a t. 😉

I also remembered that I’ve done acupuncture before, and had tiny needles all over my body, including in my eyelid. So the EMG probably won’t be that bad. I imagine the needles are probably about the same size. I’ll just close my eyes, and should be fine. I can’t stand watching the needle go in, because of the anticipation, but once its in I’m fine.
It’ll just be the spinal tap that I’ll remain very nervous about.

Dr. C

I’m incredibly exhausted after this long day, but wanted to give y’all some brief updates.

I met Dr. C, the neurologist, this morning. Her office is slow, but she is wonderful. She listened to my health saga, then did a neurology test – testing reflexes, my eyes following her finger, if I could hear her rustling her fingers at different distances from my ears, having me squeeze her hands and push against resistance, asking me some basic recall questions, and walking across the room in various ways- normally, on tip-toe, one heels with toes up, and heel-to-toe like on a tight rope. She also took a peak at my optic nerve.
She wants me to see an opthomologist again, and gave me a few names of doctors she’d prefer I see, so I went by the student health center after my appointment to get a referral. I’ll give Dr. F’s office a call tomorrow.

She also gave me an order for lab work – quite a lot of it, including ANA, metabolic panel, thyroid panel, various vitamin Bs, vitamin D, a lyme test, and a few other tests I had never heard of. The student health center will be doing the blood work tomorrow, since I need to be fasted.

Dr. C is also working on an order for an MRI of my brain and neck, with contrast. A spinal tap. An a consult with a neuropsychologist for cognitive function testing. I’ll have to pick up the orders and take them to the student health center for referrals from them, so that the insurance will cover the highest rate on those tests.

And, I have two appointments for EMG, nerve conduction tests, at Dr. C’s office already scheduled. One day to do my arms, and another day to do my legs.
Plus, she’s having me wean off the amitriptyline, and start the prozac.

I’m both excited and terrified about the tests. Excited, of course because I have a Dr. giving me her full attention and actually ordering tests to try to figure out what is going on; all of you spoonies know how relieving that is. But the spinal tap and EMG have me a bit nervous.

Any one have tips for getting through these pokey-needle tests? Or just dealing with medical anxiety? I’d love to hear them.

Holding off on the Prozac… and getting an Endocrinologist

I talked to Dr. B2 today over the university’s health care messaging system. She thought it would be best if I didn’t start the Prozac, and that the neurologist (Dr. C) would be the best person to recommend an anti-depressant given all of my other conditions/symptoms. She also said that because I was on such a low dose of Zoloft, that she doesn’t think I’ll go through withdrawal.

I trust Dr. B2, so I’m going to follow her advice and hold off. The September 14th neuro appointment can’t get here soon enough!

In other news, I had a follow up DEXA scan on Tuesday, and it showed a 0.5% decrease in lumbar spine density since last year and a 1.8% decrease right hip, 1.4 % decrease left hip.  All are still in osteopenia range; lumbar spine is 89% age matched group and hips are 80%. Since I have osteopenia so young, Dr. B2 thinks I need to see an endocrinologist. So I’m adding more doctors to my already expansive collection.