I pose this question because I feel as a patient in general, not just a new patient to fertility hurdles, I think I have some experience to draw upon. I wrote briefly in another blog post about my experience as a spinal patient, which went on consistently for over 4 years. It was a very upsetting struggle because if I hadn't kept pressing my doctors for certain tests, I would most likely be in a wheelchair for life. For the first year of my spinal problems, I didn't realize I was a spinal patient. I was bounced between different neurologists, all different in their levels of expertise. I started out at just a family doctor, but when my medications were only able to treat the migraine, mildly and not prevent them, he sent me "up" the food chain. From there I had months of waiting and suffering between seeing the newest doctors, only to be sent for testing to come back inconclusive and be sent to another doctor from there only to start the process all over again. After the last neurosurgeon didn't "find" anything and referred me to a chiropractor for adjustments, I was dejected. I had done everything four doctors, neurologists had told me to do, I had even allowed them to inject me with botox, (botox was first used to treat neurological patients). On my own I was even a great patient. I gave up meat completely (still a pesco-vegetarian to this day), gave up caffeine during all this (giggling as I sip my ice coffee), and I was the picture of health in my workouts and lifestyle. At one point I went on a raw food, vegan diet, with fish supplements, which did make me feel...better in most aspects of my life but its almost impossible to execute.
I hadn't bucked the system, I had not done gobs of research, I wasn't overly informed, never did I challenge the doctor with new schools of thought, or ask for additional testing or medications. All my doctors seemed happy to "help" me, glad to see me, sorry to see I was still suffering, but none offered anything other than pain medication and injections after an onset.
I was trusting.
I trusted that my medical counsel would act as if I was their mother, daughter, friend, wife. There were never any uncomfortable challenges to our appointments, it was just...business. This went on like this for almost two years.
One day I woke up and I couldn't move my left arm, I could feel it, but moving it, it wouldn't cooperate with my brain, and it felt like I had rag arm, but I am right handed? I played softball and boxed religiously, still to that day. I am no stranger to the pains of workouts and sports injuries, I have even had a half dozen reconstructive knee surgeries at that point, I can deal with sports related pain. This pain was different. It was debilitating, like my migraines were...debilitating.
I stumbled through my bath and decided I could not wash my hair, it was excruciating enough lifting it up to turn the water on and off. Skipped shaving my legs, pantyhose it is! My car at the time was a little sports car, six speed. Luckily my left arm was the problem not my right, but even using it to steer, was difficult. I managed to get to the office, but had to ask a co-worker to help me get my briefcase out of the car. I looked a wreck, but I had gotten to work, on time, mostly dressed.
The rest of the week, got more difficult and more painful. My son was young at the time, so I had to also perform mommy duty and pretend I wasn't swearing under my breath during basketball practice, and had to wear my sunglasses inside to hide the wincing. It was awful.
About 5 days in I decided that the pain was only getting worse, I had tried to run my light workout at the track and couldn't bare the jostling of the jog. I decided that I needed to see my doctor, I never even imagined it was related to my headaches and neck pain, I was just assuming that at the ripe old age of 27, my body decided to quit me.
My family doctor didn't even ask to see me, he just sent me straight in for an MRI, which I had had so many on my head that I didn't even blink. Most people would be worried they were getting a scan of their body. He did something that saved me from more years of pain. He asked for an MRI of my shoulder AND my C-Spine.
Three days later, it was Monday. I had managed to stay on the couch most of the weekend, I never got out of my sweats except to take a bath and soak my body. I got a phone call at work around noon that my doctor wanted to see me that same day. I was a little worried, but I was more worried as to how I was going to shift my appointments around to come in. I was so glad I had limped into work the week before and my bosses were also curious to see what was wrong with me. One of them took my last appointment for me, the other asked if he could tag along, he was also suffering with some strange lower back pain, he had told me I needed to see about my spine way before all of this.
I was flattered he was interested in my mystery ailment, and agreed. The doctor saw me last in the day so traffic was horrible and my arm was throbbing. When I got to the doctor I asked for a heating pad immediately. He came in and sat down, very seriously as if I were getting a few months to live prognosis and told me he was referring me to another specialist, at which point I rolled my eyes. I was waiting for the words...inconclusive.
Instead he said, "You need surgery on your spine, in several places." My breath left me, he punched me right in the gut. "Its very serious, and I recommend you don't wait too long to see someone."
Someone? He doesn't have a someone? He doesn't know a someone?
He always had a someone before...
"I have some names, but I am not sure who you will want to see first, an orthopedist or a neurosurgeon, and honestly you should see both, I don't have anyone here in the immediate area that I would recommend for long term treatment or surgery. These names are doctors that can order more testing and manage you with medicine until you find a surgeon you are comfortable with."
My boss started asking questions when I made no noises and my eyes started welling up. I really only remember hearing the rush of tears come over me and trying to keep them in my eyes.
The answers were simple because he wasn't the expert in these fields.
He didn't know, he wasn't sure, in his opinion, if it were him, things like that.
The very next day, I hear a commercial while I was in the car, for a neurosurgeon who did microsurgeries on the spine. I had heard this commercial several times, but the buzz words didn't mean anything at that point. I had headaches, I didn't have spine problems. This morning was different, I was hearing several of the same buzz words, and I dialed the number. The asked me to verify my insurance, if I had recent scans, which I did! And because it was the holiday weekend coming up, they had an appointment soon, in two days!
I took my scans in, optimistically. This micro-neurosurgeon was a pioneer in his field, had performed the first surgery of its kind and he had been in medical journals, on Good Morning America, on television! He was going to save me!!
He was unlike any doctor or surgeon I had ever met with, he was kind, he asked open ended questions, it was the day before Thanksgiving and he was at the office! He was heaven sent. My mother in law went to the appointment with me, and she's been a cardiac nurse for thirty years. She asked questions, took notes, made the doctor explain things in depth. We were there for almost two hours. He explained that my age was keeping me out of major surgery for now, but he needed to buy me some time. That I had several degenerating discs and that my headaches could absolutely be and he thought were related to my arm pain...
"What?! This guy is reaching, but its the only theory of my headaches
I haven't heard, I'll bite, tell me smart guy, how are they related..."
He explained he wanted to do an exploratory surgery to look at my C-Spine and try to burn a nerve root to deaden the pain, and if it worked we could look at doing more, if it didn't I would wake up and he would recommend the big surgery and send me to another surgeon who would put plates and screws and remove bones.
We scheduled the surgery exploratory-micro-neuro-surgery for a few weeks later and he prescribed physical therapy and tons of blood work and testing to be done in the mean time. I decided to take a few weeks of leave from work, otherwise I would never have been able to get all the testing done.
On the day of the surgery, I was excited, the possibility of my headaches and my neck pain being explained was such a far off possibility a few weeks ago that I felt like Santa was bringing me presents. I arrived early and the anesthesiologist arrived to calm my nerves and before I knew it, I was awake again, and my arm pain was still there. But my headache, even though I didn't realize I had had one, for several years straight, was gone. My migraines had been all one giant spinal headache and it would never really subside completely, I was experiencing more intense symptoms but they were always there. I woke, groggy, but free of my spinal head ache.
My family came out and told me how excited they were that my headaches were going to get better and were excited to see me. I was confused. I hadn't said a word to anyone, how can anyone possibly know my headache was gone?
The doctor came in before I could speak a first word and explained that I had been leaking spinal fluid for some time and he had done a simple blood patch to correct it. He said he was sorry that my arm pain couldn't be corrected and that he had an excellent neurosurgeon come look at my scans while he was doing the blood patch and he recommended surgery as soon as I was healed from the blood patch. My discs were too far gone already. Even artificial discs would have been an option maybe a year ago, but at this point a multi-level fusion was my best option. For now, my headaches would be controlled, but it my discs kept rubbing on one another, they would come back and leaking spinal fluid was no simple matter, it was serious and I needed to keep an eye on it.
Im elated. Yah, maybe my arms still throbbing, but I had answers!
I trusted they were right.
The very next day the new neurosurgeon saw me, and scheduled the fusion for two weeks away. I was going to be free of neck and arm pain, I was going to be able to run again, I was ecstatic. This surgeon wasn't overly friendly, he took one look at an ex-ray...an Ex-Ray! The cheapest test of them all! And he said, this is what we will do, you will be in the hospital for five days, and you will be running half marathons again by the summer.
Awesome! Sign me up!
The surgery was painful, but tolerable, and I spent every last minute of those five days in the hospital. It was no picnic. I got home a week later, tried to do the physical therapy, too painful. Even with meds, way to painful. I could drive a few weeks later, and I felt semi normal, but I never felt like my head was attached to my spine. I felt, loose.
I kept my appointments, and did my physical therapy and went to all my monthly follow ups. Every time he saw me, an ex-ray was done, he looked, said the same things, "You aren't fused yet, that's why you still hurt...give it more time, it can take a year."
Six months came, and at night, my hands started burning, to the point of sleeping with ice packs in my socks on my hands. I would wake up screaming and my poor husband would have to tell me I wasn't on fire, and go get me more ice.
The doctor looked at me strangely when I told him that, and said, "Sounds like carpal tunnel, you've gained weight, here is a test to go get a nerve conduction study," hmmmm.
The test came back that yes I had carpal tunnel, and that I needed surgery to correct that, but first I needed to lose weight.
"What?"
If it was possible my pain in my shoulder and arm and neck was at an all time worse. I was miserable. I couldn't sleep, I was on every medication in the book, I hadn't returned to work, it was a depressing time in my life. Here I was almost ten months out of surgery and I was worse than before. I started losing feeling in my toes, and I told my surgeon again about more symptoms.
His snide remarks of lose weight crushed me, and I lost it. I finally broke down into tears.
"How am I supposed to lose weight on steroids, pain meds, unable to walk more than 20 feet at a time? I cant lift anything because my hands are almost always on fire, and now my toes are starting to feel the same way! I am worse now that before the surgery!"
"Didn't you get the referral for the surgery on your hands? I cant help you if you don't pursue treatment, medicine isn't magic."
A flood of tears happened and he said, "Have a nice day."
The next day, I sat on the toilet getting ready for my bath and my legs went numb. Not fell asleep, but went numb, no feeling, no movement. I threw up from the fear. I called my husband into the bathroom and he brought me my cell phone. I called the only doctor who had ever listened to me, the micro surgeon.
Ironically, it was the day before Thanksgiving again. He called back within five minutes and the only reason it took him that long was that he had already called in an order for a myleogram at the local hospital and made sure they would stay long enough to see me that day. He would be standing by waiting for the results to be rushed to him.
A myleogram? Never heard of it. Why this test? Why never before?
I got to the imaging center, attached to a hospital, and they knew who I was. The nurse immediately put me on a stretcher and called the anesthesiologist, my legs were still numb so my mother and husband had dressed me and practically carried me into the hospital. Within a few minutes they had my feet strapped to a metal bed, an IV of dye into my spine and tilted my head towards the floor. The whole test lasted 4 minutes and afterwards they had me getting IV pain medicine and antibiotics for precaution. After the procedure your head feels like it will explode, all the dye they inject to get an accurate picture has to dissolve slowly, but in the interim, it is excruciating
A little more than an hour went by and the radiologist came in to deliver my results, my hardware had come apart in my spine, several months earlier.
My metal parts keeping my spine in place...just...came apart? Months ago? I saw my surgeon, yesterday!? How is that possible?
Again, the breath came out of my body.
"Your surgeon was very smart to send you here and have these tests rushed," he said. "If you feel that you cannot lie flat until you see him Monday, then you would need to be admitted until then. Yon can go home, lie flat, or you can go to the hospital across town and he will admit you tonight. Whatever your decision, you need to be honest with yourself."
With it being Thanksgiving, I elected to lay flat and see him Monday, but I was nervous. The appointment couldn't get here fast enough. I had a feeling that I wouldn't go home come Monday and I was right. That day a new neurosurgeon came in to my appointment and explained all the details of why I needed surgery that same day, and how urgent my condition was. And how he had already pushed back his non emergent surgeries to do mine, today. He had already ordered the new hardware and it should arrive by late afternoon and he wanted to get started and admit me right away to get all my blood work done and start me on more antibiotics. I agreed. I was afraid to move my head, I hadn't showered in almost five days, I was a beaten woman.
Three years, three more surgeries, a few set backs, and sixty pounds later, I have no headaches, no arm pain, and minimal neck pain. Praise Jesus.
I could get mad at my surgeons, or the more than half dozen doctors who were complacent, who hadn't ordered THE test I needed, they would have been able to diagnose me so much sooner. But I didn't done my research. I had had no educated questions to ask, no educated speculations to give, no idea that my doctors didn't really care about ME personally.
Thankfully, two of my surgeons really did know what they were doing. And now, I'm a better, more annoying patient.
Which brings me to my fertility. Over the last year I have seen my OB/GYN about 10 times, twice to remove my IUD SURGICALLY, the other for pre-conception, then getting pregnant, diarrhea while I was pregnant, my miscarriage, & follow ups. I'm sure they are sick of me.
Unlike my spine surgeries, this time, I am informed. I know enough to ask questions. I have realized, I'm the only one really looking out for me. You may help me today, but by tomorrow, you wont remember my name, and tomorrow, I will still be in mourning over my miscarriage, and fertility concerns. None of my surgeons before the last two ever followed up, to see how I was, had my condition improved...Can I help you in any way? Never. The last two were different, they gave a shit.
The healthcare industry in general in ridiculous, and now adding on to the burden will be The Affordable-Health-Care-Act. Lord help us all when that piece of garbage catches up to us.
I understand that its impossible to reach out to every single patient, or comply with every single patients request for certain tests. I get that. But what about your informed patients? What about listening to their notes, ideas, and theories?
Three weeks ago I called my OB, and my PA called me back about a week later. I announced that I would like to see if she would call in a script for progesterone, because my Luteal Phase was so short, and she agreed that it was much too short and was probably a result of an anovulatory cycle. (Im still researching that one.) It was a coincidence that my period had come over the weekend while I was waiting for her to call back, it was nearly 2 weeks early.
She expressed concerns and asked me "How aggressive do you want to be?"
At first I was confused and I replied, "Im about to be 33, I don't want to be here in a year about to turn 34, etc. How aggressive is the next step?"
She explained, "I would like to get you to ovulate around day 13-15, so I want to do a follicle check on day 10, and maybe use a trigger shot to do if you aren't about to ovulate, then give you progesterone. If you don't become pregnant this month then next month I would recommend Clomid, follicle monitoring, Clomid, then progesterone."
The day I was talking to her was CD 3, so we both thought, hey, great timing. She even said, we could get you going THIS cycle. I was excited and nervous. But mostly excited.
I agreed and she set an appointment to see her yesterday and have a sonogram to look at my follicles. I arrived yesterday and was told, my appointment after the sonogram was cancelled and I needed to see the doctor not the PA, but an appointment was scheduled next week to see the actual doctor. My sonogram was still in order so I waited and while I was upset, I wanted to hold out hope that the sonogram would show I was about to ovulate, and not get worried before I had all the available facts.
I got into the sonogram and was asking questions to keep informed, the tech was nice at first and answered my questions. She found my right ovary quickly and there was no dominate follicle and the only one she could find was only 10 mm, so I wasn't about to ovulate from the right. She started digging around looking for my left ovary and she couldn't find it, which was frustrating because she gave up quickly explaining that my bowels could be in the way. I explained that my LH surge on my OPTs was confusing and urged her to schedule another sonogram in a few days. She said that she couldn't schedule the sonogram, which is a lie, she and the other tech have both scheduled follow ups for me in the past. She told me I needed to wait for my appointment with the doctor in a week. I was frustrated, in a week I would have missed the window...my information would be wrong, why cant she just wait an hour like other doctors offices and re-do the sonogram today? What was the point of the sonogram today if you don't get all the information? I went to the office manager, who is a total sweetheart, and she rolled her eyes and put me back in to see the PA in 30 minutes. I was frustrated but at least I could get some progesterone prescribed and do what I can in case I do ovulate before a week from today. Satisfied for now.
Then the sonogram tech comes out and sits next to me and asks, why are you still here? I explained that I would like to ask a few questions about my LH surge and progesterone and where I was in my cycle, etc.
She gave me some very useful advice, "YOU NEED TO STAY OFF THE INTERNET."
I didn't let her deter me, she went on and on about how there was no reason to see the PA today, and I needed to invest in some PreSeed and just go on about my business as usual until I see the doctor. I nodded and waited for her to get up, she motioned to the office manager to cancel my appointment. The office manager looked at the computer and waited for her to leave and looked at me and shook her head to stay where I was. Relief.
A few minutes later, the actual doctors nurse came to get me and sat me down near the doctors actual office. She asked point blank, what I wanted to accomplish today...I explained originally I called about progesterone, not much more, and that the PA had set up the sonogram, and retold the long story of where I was in my cycle as opposed to what's normal for me, ect. Another thirty minutes of my life....gone.
She promised she would check with the doctor and call me that evening to explain what the doctor said, but she was certain that I couldn't get the prescription for progesterone without seeing her and I needed to wait and also....
"STAY OFF THE INTERNET."
Great advice. Genius.
I left the office so frustrated, upset, mad, what a waste of time! I was determined to find and order progesterone off the internet, from a friend, anywhere, I was going to find it. Late yesterday evening, too late for a normal return phone call from a doctor, my phone rings.
It was the nurse, and she wasn't happy. They had called in my script for progesterone, and even gave me 4 refills. She scolded me, you HAVE to come to your appointment Monday. You CANNOT miss. Take these on day 14-28. Blah, blah, instructions that sounded wrong, ect.
At the end of the conversation, I was proud of myself for standing my ground. I need progesterone. I deserve good medical care, which includes someone listening to my thoughts and ideas. No one had noticed when I told them my cycle lengths before that I might benefit from progesterone, why is it so frustrating for doctors to have patients be informed? Ask logical questions...and be right!? At least some times?
Are your doctors happy you do your homework? Or frustrated because they have to stay current on possible alternative treatments?
If I had done ANY research about my spine, maybe I would have saved 3 years of surgeries? Who knows?
If I get pregnant this month, will they be upset? Or happy it got resolved?
I'm amazed when doctors get annoyed when you do your research but so many don't want to explain tings to you so you can understand. When my son was diagnosed with Cerebral Palsy his neurologist said not to look online. Screw you dude, I didn't understand a word you just said and you are being so rude to me that I stopped talking. I'm glad that I researched it since it answered all my questions and helped me map out a therapy plan for my son. Stay up on your research and decide how aggressive you want to be in your TTC efforts. Good luck.
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