Polycystic Ovary Syndrome (PCOS) Warrior Interview

Polycystic Ovary Sydrome

Polycystic Ovary Syndrome Authentic Awareness

Polycystic Ovary Syndrome
PCOS Warrior Heather

This September we set out to interview a real life Polycystic Ovary Syndrome (PCOS) warrior for the United States’ federally recognized Polycystic Ovary Syndrome awareness month. PCOS affects 1 in 10 women in the United States and across the globe. This means it is likely you or someone you know who silently suffers from this condition. PCOS is gender specific, only women can get it, and it involves discussing some symptoms that are considered taboo, which is why so many women suffer in silence for so long. We at the Unchargeables want to encourage you to take the Polycystic Ovary Syndrome Awareness Association’s Tell Someone Tuesday challenge and talk to one another. More importantly, talk to your doctor about PCOS. Heather Humrich, a PCOS Warrior from Suwanee, Georgia and I sat down in her home to discuss the impact PCOS has had on her life, how she discovered the condition, how she manages today and what you might need to do if your doctor is not taking your concerns seriously. Below you’ll find a summary of our conversation.

Early Symptoms of Polycystic Ovary Syndrome

T.J. Q1.)  What are the first symptoms an individual with PCOS might notice?

 The first symptoms someone might notice are irregular periods, extra hair growth, particularly in places most women do not grow a lot of extra hair, such as on the face, and a pinprick type pain in the ovaries. Insulin resistance is another often overlooked symptom which might look like weight gain or difficulty maintaining a healthy weight despite an active lifestyle. Heather recalled that as a teenager her periods were often lighter and occurred over a shorter period than some of her friends. Without a frame of reference she thought this was ‘normal’ and that she was lucky. As a cheerleader at her high school she was always very active, so it was not until later in her life that she noticed she seemed to struggle to maintain a healthy weight.

Polycystic Ovary Sydrome


Polycystic Ovary Syndrome is a Hormonal Disorder

T.J.) The Mayo Clinic describes PCOS as a “hormonal disorder” with an “unknown cause”. Often with conditions that primarily impact women there is little research dedicated to finding causes or effective treatments. Despite 1 in 10 women being impacted by PCOS this seems to be true. Awareness month is this September and we’re trying to do our part to get people talking to their doctor’s about their symptoms.

T.J. Q2.)   While every woman is different and their experiences vary, please tell us a little bit about how you came to get an accurate diagnosis.

Polycystic Ovary SyndromeFor Heather, and many other women, PCOS is discovered when a woman has trouble conceiving. As part of an infertility diagnosis, imaging and lab work was done to confirm the PCOS diagnosis. In Heather’s situation, there were visible changes to her ovaries. Her doctor commented that it looked like one of them had rings around it like the planet Saturn.


Polycystic Ovary Syndrome and Fertility

T.J. Q3.) Can you tell us a little bit about your journey to wellness that eventually led to my amazing nephew and niece being born?

Heather was referred to an endocrinologist that specialized in fertility. She was started on the prescription medication Metformin and consulted with a health coach that specialized in helping her create a healthy diet plan. Regulating her insulin was a big part of her recovery and remains a part of her wellness plan today. Heather considers herself fortunate to have had access to quality healthcare because in 2006 PCOS was still largely unrecognized.

Living Well With Polycystic Ovary Syndrome

T.J.) Modern, aka Western, medicine seems to primarily focus on pharmaceuticals for symptoms, such as anti-depressants or birth control pills, or medications that treat a co-occurring condition such as diabetes; although, there are some lifestyle changes recommended such as getting more exercise or losing weight. Many women prefer more natural (sometimes called alternative) therapies. The idea behind this next question is to give our readers a real person’s strategy for managing PCOS.

Q4) What strategies have you found helpful in managing your PCOS now and what impact does the condition still have on your daily life?Polycystic Ovary Syndrome

Heather uses a health coach that helps her stay on track by making surprise pantry inspections. Yes, really! Supplements are a big part of her health regime as she prefers more natural remedies. Choosing organic products free of added hormones, especially when it comes to meats and dairy, are an important part of her lifestyle choices. She avoids artificial sweeteners and balances indulgences with hard work. Running is an important part of Heather’s week and she says it not only combats mental health symptoms like anxiety or depression, but allows her to enjoy occasional sweets and that glass (or two) of wine on the weekends. It takes dedication to find what works and to stick with it, but balance is essential for limiting the impact PCOS can have on your life. Support programs that offer motivation to reach weight loss goals can be very beneficial in staying on track. Heather strives to include lean protein throughout her day but especially if she knows she might be indulging in something sweet. For one of the more annoying symptoms Heather recommends finding a good esthetician that can wax away the unwanted hair so you can you continue feeling like the beautiful bad-ass that you are.

Finding the Right Doctor to Diagnosis Polycystic Ovary Syndrome

T.J.)  A lot of women don’t realize that they have PCOS until they experience complications. This can include sleep apnea, mood disorders, metabolic syndrome or diabetes. For a lot of women, including for you, this can manifest as infertility struggles which leads to a diagnosis. Women that are not trying to conceive are less likely to be diagnosed.

T.J. Q5) What advice do you have for women that might feel discouraged because either their doctor isn’t taking them seriously or they are uncomfortable discussing some of the symptoms?

Polycystic Ovary SyndromeThis was an easy question for Heather to answer. If your doctor is not taking you seriously, find a new doctor. There are a lot of good doctors out there. Running the tests required to get an accurate Polycystic Ovary Syndrome diagnosis is not difficult nor particularly expensive, so there’s no reason that it can’t be done even if all it does it rule out PCOS.


Awareness Ribbon

Every disease has an awareness ribbon, including Polycystic Ovary Syndrome (PCOS). Teal is the awareness ribbon color for PCOS and PCOS awareness items can be found in the Unchargeables Shop.

About Author T.J. Madden

Author T.J. Madden for The UnchargeablesT.J. is a contributing author for The Unchargeables, manages The Unchargeables Twitter feed volunteers, and is the newly appointed administrator for the Caregivers Support Group. She describes herself as a Reader, Writer, Baker, Teacher, Chicken Soup Maker, and Fighter for all Things Healthier, Stronger, Kinder, and Better than Yesterday


Hello Again/New Journey


Greetings my fellow spoonie/chargie friends and readers, I know it’s been a REALLY long time since I’ve come out with any content.  As many of you know will power isn’t always enough to be able to force one’s body to do what you want.

I do have a list of topics others would like me to cover, but also, I have decided to share my current health journey with you all in hopes that someone out there may be touched.  I will continue to make an effort to also write on topics you guys want to hear about or know more about. Since I’ve already started on this journey I’ll give you a little bit of a back story.

Back Story

In September of 2016 I had a Diagnostic Laparoscopy to determine if I had Endometriosis or not.  At that point, I had been dealing with chronic pelvic pain for a good couple of years, but hadn’t sought treatment or a diagnosis because I was busy getting my head checked out.  After I recieved my IIH (Idiopathic Intracranial Hypertension) diagnosis and started treatment I then turned my attention to my chronic pelvic pain and gynecological PCOS symptoms.

The procedure (Diagnostic Laparoscopy) revealed that I did not have Endometriosis but that ovaries where enlarged and polycystic and I also had a prolapse uterus, I’ve never had kids so the prolapse was a surprise… After the procedure, my doctor suggested a course of Lupron Depot.  I went home to think about it and did my research deciding in the end that it was worth a try because I was miserable taking birth control pills all the time.

To my surprise I didn’t have a lot of side effects while receiving Lupron and felt so much better, I was also able to lose like 20lbs!

I finished the 6 months of Lupron in March, when I saw doctor in April I was miserable again.  At that point, we seriously discussed the possibility of a total abdominal hysterectomy, we had previously talked about the fact that me birthing my own children could kill me and that I have a disorder and we don’t know if there is a genetic link. In May I signed the paperwork for the surgery and on June 1st I resigned the consent form and a form acknowledging that I had been informed I would never be able to become pregnant.


Alright, so about this surgery. I’ve had my back cut open, had brain surgery, had my gallbladder removed.  This was the hardest surgery I’ve ever had, this is the longest recovery process I’ve even gone through psst it’s still ongoing.

Besides taking out my Uterus, Cervix, tubes and horribly cystic Ovaries my doctor also cleaned up scar tissue from all my shunt surgeries and he carefully moved my shunt which had snaked its way through the Omentum (a large fatty pad of tissue that drapes over the intestines) he then insured my shunt was still draining and placed it back where he had previously visualized it. According to what doctor said the day after my surgery was that my ovaries were so cystic that when he went to clamp them before cutting the cysts started to rupture. I think it was time for them to come out.

The rest of my afternoon and night after surgery is all a blur, I vaguely remember my dad being there for a while.

Hospital Fun

After surgery at some point that first night I was put in an abdominal binder and given pain meds, both those things led to, two different types of pain. A rebound headache from the medication my doctor and I had discussed before surgery and a high-pressure headache from the lack of shunt drainage due to the abdominal binder. My RN ended up calling my doctor, who was on-call that weekend, and pitching him a plan I had come up with to hopefully reduce my headache, he agreed.

The next morning when he rounded, he asked me if I needed to be transferred. The pain from the procedure was under control but now I had a problem out of his scope of practice.  He wanted to transfer me to my Neurosurgeon or have my Neurologist come in to see me.  I asked him to please give me 24 hours and if things got worse he could transfer me or I would ask to be transferred sooner.  We kept the changes made the night before and I told him if he wished he could check with my Neurosurgeon to determine if I had suggested the correct plan of treatment which had been to discontinue the Norco, which had led to the rebound headache. To change to Tylenol III and a shot of Dilaudid or two to keep from going over the Tylenol limit and get my head under control.

After 24 hours of laying mostly on my back and trying the new meds I was happy to hear that doctor say that I was well enough to go home and didn’t need to be transferred.


After I was discharged I went to my grandparents’ house “the farm” for two weeks while I recovered.  I slept a lot, read some, and for the most part ignored my computer.  During the two weeks on the farm I got some of my medical appointments taken care of for the next 6 months. I saw my Endocrinologist (I wanted to sleep on the way there and back (3hr both ways), Dad wouldn’t let me).

Besides all that fun I am happy to announce surgery was a success the pain is gone; the pressure is gone and I am so happy. Yes, I’m back to living by a med alarm to remind me to take my Estrogen Replacement Therapy (ERT).  I think I’ve kind of lucked out, I seem to be having an easier time then other young people who are going through the same thing.  I haven’t had hot flashes yet, yes things are getting dry, but I haven’t really had any major issues yet.  I didn’t even have any major issues on the Lupron either. Everybody is different though and maybe this will hit me in a few weeks or I don’t know maybe I’m just going to have an easier time with Surgical Menopause.



Things All Women Must Know About Polycystic Ovary Syndrome (PCOS)

Polycystic Ovary Syndrome

Women in their reproductive age carry two special hormones that keep them fertile. Those hormones are progesterone and estrogen. In Polycystic Ovary Syndrome (PCOS) these two hormones get out of balance. The disturbance in these hormones leads to the development of cysts in the ovary. Most of these ovarian cysts are non-cancerous and do not cause any harm, but they can create complications in some cases. The prolonged disturbance in hormone levels can lead to many changes in fertility, physical appearance, menstrual cycle, and cardiac function.


Frequency of PCOS

This disease is very common. The research of the US Department of Health and Human Services shows that 1 in every 20 women in their fertile age is suffering from PCOS. In some regions, this rate is almost 1 in every 10 women. According to one estimate, in the United States almost 5 million women are suffering from this disease. In the UK, studies have shown a rate of 1 in 5 women suffering from this disease but more than 50% of these women don’t show any kind of symptoms. These stats are alarming because they show a high percentage of women being affected but who aren’t being treated for the condition. This is dangerous because PCOS can lead to additional very serious issues.

Symptoms of PCOS

The internal symptoms of PCOS generally appear when a girl starts to menstruate, and observable symptoms appear in late teens or early twenties. There are many symptoms of PCOS, and the occurrence of symptoms varies with each person. PCOS decreases the production of female reproductive hormones in the body, and some of the main symptoms include

• Change of voice
• Thinning of hair on the head
• Noticeable decrease in the size of breast
• Development of excessive hair on various parts of the body including face, toes, stomach, thumbs, and chest

Other symptoms include
• Oily skin
• Hair loss
• Anxiety and depression
• Weight gain
• Difficulty in losing weight
• Irregular or non-existent menstruation
• Acne on face and body

Your Doctor will also look for
• Increase in the size of your ovaries and the presence of cysts
• Decrease in the production of estrogen and progesterone
• Increase in the production of androgen


Diagnosis of PCOS

According to the Mayo Clinic, there is no specific test for Polycystic Ovary Syndrome, rather your doctor will come to the diagnosis after multiple tests and exams rule out other conditions.

“During this process, you and your doctor will discuss your medical history, including your menstrual periods, weight changes and other symptoms. Your doctor may also perform certain tests and exams:

  • Physical exam. During your physical exam, your doctor will note several key pieces of information, including your height, weight and blood pressure.
  • Pelvic exam. During a pelvic exam, your doctor visually and manually inspects your reproductive organs for signs of masses, growths or other abnormalities.
  • Blood tests. Your blood may be drawn to measure the levels of several hormones to exclude possible causes of menstrual abnormalities or androgen excess that mimic PCOS. Additional blood testing may include fasting cholesterol and triglyceride levels and a glucose tolerance test, in which glucose levels are measured while fasting and after drinking a glucose-containing beverage.
  • Ultrasound. An ultrasound exam can show the appearance of your ovaries and the thickness of the lining of your uterus. During the test, you lie on a bed or examining table while a wand-like device (transducer) is placed in your vagina (transvaginal ultrasound). The transducer emits inaudible sound waves that are translated into images on a computer screen.” (Quotation taken directly from http://www.mayoclinic.org/diseases-conditions/pcos/basics/tests-diagnosis/con-20028841)


Causes of PCOS

Doctors still have not found a direct cause for this condition, but there are a few factors they believe have an effect.

  • Excess insulin. Insulin produced in the pancreas helps your body process sugar, which is your body’s primary energy supply. Excess insulin might affect the ovaries by increasing androgen levels, which may interfere with ovulation.
  • Low-grade inflammation. White blood cells produce substances to fight infection in a response called inflammation. Research shows that women with PCOS often have low-grade inflammation that stimulates polycystic ovaries to produce androgens.
  • Heredity. If your direct blood relative has or had PCOS, your chances are high as well. Researchers also are looking into the possibility that specific genes are linked to PCOS.


Treatment of PCOS

Polycystic ovary syndrome treatment usually will focus on management of your individual symptoms, such as infertility, acne or obesity. According to the Mayo Clinic:

“Your doctor may prescribe a medication to:

  • Regulate your menstrual cycle. To regulate your menstrual cycle, your doctor may recommend combination birth control pills — pills that contain both estrogen and progestin. These birth control pills decrease androgen production and give your body a break from the effects of continuous estrogen, lowering your risk of endometrial cancer and correcting abnormal bleeding. As an alternative to birth control pills, you might use a skin patch or vaginal ring that contains a combination of estrogen and progestin. During the time that you take this medication to relieve your symptoms, you won’t be able to conceive.If you’re not a good candidate for combination birth control pills, an alternative approach is to take progesterone for 10 to 14 days every one to two months. This type of progesterone therapy regulates your periods and offers protection against endometrial cancer, but it doesn’t improve androgen levels and it won’t prevent pregnancy. The progestin-only minipill or progestin-containing intrauterine device are better choices if you also wish to avoid pregnancy.

    Your doctor also may prescribe metformin (Glucophage, Fortamet, others), an oral medication for type 2 diabetes that improves insulin resistance and lowers insulin levels. This drug may help with ovulation and lead to regular menstrual cycles. Metformin also slows the progression to type 2 diabetes if you already have prediabetes and aids in weight loss if you also follow a diet and an exercise program.

  • Help you ovulate. If you’re trying to become pregnant, you may need a medication to help you ovulate. Clomiphene (Clomid, Serophene) is an oral anti-estrogen medication that you take in the first part of your menstrual cycle. If clomiphene alone isn’t effective, your doctor may add metformin to help induce ovulation.If you don’t become pregnant using clomiphene and metformin, your doctor may recommend using gonadotropins — follicle-stimulating hormone (FSH) and luteinizing hormone (LH) medications that are administered by injection. Another medication that your doctor may have you try is letrozole (Femara). Doctors don’t know exactly how letrozole works to stimulate the ovaries, but it may help with ovulation when other medications fail.

    When taking any type of medication to help you ovulate, it’s important that you work with a reproductive specialist and have regular ultrasounds to monitor your progress and avoid problems.

  • Reduce excessive hair growth. Your doctor may recommend birth control pills to decrease androgen production, or another medication called spironolactone (Aldactone) that blocks the effects of androgens on the skin. Because spironolactone can cause birth defects, effective contraception is required when using the drug, and it’s not recommended if you’re pregnant or planning to become pregnant. Eflornithine (Vaniqa) is another medication possibility; the cream slows facial hair growth in women.” (Quotation from http://www.mayoclinic.org/diseases-conditions/pcos/basics/treatment/con-20028841)

Lifestyle changes or home remedies recommended tend to center around losing weight and dietary adjustments in order to help manage insulin production.

If you think you may have PCOS or if you’re having any of the symptoms listed in this article, please consult your doctor for diagnosis and treatment.

Spoonie Story: Jennifer

spoonie story jennifer

Hi, my name is Jennifer. I suffer from PTC, PCOS, migraine, and severe allergies. Here is my story.

spoonie story jennifer
Growing up, I was always that kid. The one who suffered from severe allergies and often times had a headache. I think the only way I stayed somewhat sane, was through music. Thankfully, I was able to participate in choir, band, and orchestra. (Too bad they didn’t have American Idol back in the late 80’s to early 90’s, LOL!)
By the time I was in my second year of college, I decided to go into the US Navy in order to obtain money for college. At my second duty station in California I started to develop headaches that were far worse than my typical, still able to function type of headaches. I encountered some doctors that were not up to par with migraine diagnosis, so they sent me on my way with Motrin and steroids. They had gotten so bad that I sought treatment in China Town, to an herbalist/acupuncturist. His English was lacking, but it seemed to work about 50% of the time, but I only saw him a handful of times.
By the time I was transferred back to the east coast, I was living with a headache about 2 to 3 days a week, if not more, and then I injured my back. While in treatment for my back, the doctor wanted me to seek treatment for my migraines. That’s when everything went wonky. The neurologist initially misdiagnosed me as having an aneurysm located on the left posterior communicating artery and it wasn’t in a good location for clipping. For roughly 6 months they let me believe that it could rupture at any moment and I could die. The medicine they placed me on for pain, etc. made me gain weight rather rapidly, which was uncharacteristic for me. Finally, I was able to see a decent doctor who after multiple tests determined that it wasn’t an aneurysm after all. I was diagnosed with migraine and Pseudotumor Cerebri, also known as Intracranial Hypertension. What is PTC, you ask? Well, Pseudotumor Cerebri (PTC) also known as Idiopathic Intracranial Hypertension is a disorder of elevated spinal fluid pressure in the brain. Your brain basically thinks and acts like there is a tumor present, when really there isn’t. PTC is a condition that could lead to progressive loss of vision over time – which may be permanent. (For more information: https://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension)
Since being honorably discharged from the Navy, I have been on a roller-coaster as far as treatments are concerned. I have been on almost every symptom and pain management plan, and yet the doctors cannot seem to get things in “good working order”. Many of the meds have horrible side effects that I just cannot take, especially working a full-time job and taking care of my young children. I was using acupuncture for management and was able to function five out of seven days a week, which is much better than where I was when on those crazy medicines. Due to funding, I am unable to go as frequently as I want to and my headaches and other symptoms have come back with a vengeance.
Since my initial diagnosis, I have also developed PCOS (Polycystic Ovarian Syndrome). My doctor seems to think that it has always laid dormant within me, but after putting 50+ lbs on in one month due to medicines, it was triggered. PCOS basically has hastened my weight loss journey, making it near impossible to lose weight at the rapid rate I used to be able to thus resulting in more frequent headaches despite my best effort. Did you know that PTC and PCOS are often referred to the “FAT WOMAN’S DISEASE!” I can’t tell you how often I hear that from doctors. I just tell them that, “I am a skinny girl trapped in a fat girl’s body.” They aren’t happy with my sarcasm.
By taking meds for my PTC, I now have PCOS, and PCOS resulted in my infertility. I tried for 10 years to get pregnant to no avail, and that was even after trying fertility drugs. Finally when I went on a “drug holiday” and changed my eating habits a little bit, I was given a miracle. A beautiful boy named Sidney. Six years later, Hank came along. They are currently 7 and 1 yr(s) old and our whole world. I will tell you that when I was pregnant, 90% of my pain and symptoms went dormant and have just recently returned. I want that feeling back, where I actually felt great every day!
Currently I have 5 different types of headaches, one of which is called Complicated Migraine. My face and body look and act like I am having a stroke, I can’t swallow and sometimes have a difficult time breathing. The headache typically comes on an hour to 4 hours after the symptoms go away. Currently there is only one migraine cocktail that gets rid of this type, but the doctors will only give it to me in the ER. Not what I call a good time!
As it stands, I suffer from various types of migraines, weird pains in my neck and shoulders, strange fluid draining from one ear, tingling sensations down one side of my body and doctors that don’t know what to do with me or how to help. Most people say, “You look fine!” or, “You don’t look sick!”, and “You’re just a hypochondriac!” as well as various other phrases when they see me. I am done with trying to hide the fact that I feel awful and neglect taking care of myself. Thankfully, I have an AWESOME husband and father to our boys that when it is a REALLY bad day, he takes over and lets me take care of me. By eating a clean diet, exercising as much as can be tolerated due to the return of my headaches, and being aware of my surroundings due to triggers, I am able to function better than I have since I was initially diagnosed twenty years ago.

Everyone has a story


Everyone has a story.  Some people’s stories are full of challenges and despair, other people seem to coast along from one success to another with no hardships what-so-ever.  Still other people have stories of triumph where they pull themselves up from the pit of despair and make find their story book ending.

My life has been an interesting one and I would like to take the time now to share with you my story.  I do not pretend to be an expert on anything but my life and it is my hope that through sharing my story with you that I may help you.


Around the time I turned 14 my mom was diagnosed with Brain Cancer it’s around that time that I started to irregular periods, at 15 I started noticing dark hairs on my face.  To be clear I was a just a little freaked out but despite my confiding in my dad and stating I wanted to find out what was wrong my worries where pushed aside and life continued.  When I was 15 I also had a back surgery that had me laid up for a while and because of inactivity and stress from my mom I lost control of my weight.  Little did I know this was all connected and it wasn’t just the steroids I had been prescribed.  Finally, at age 24 I was diagnosed with PCOS! What was wrong with my body had a name, there was a reason I had trouble dropping the weight I had gained.  Then treatment was started finally. A year later I started experiencing depression which they say can be linked to depression, though I believe it is because of all the losses I have been faced with; my mom at 16, the use of my left side at 19, the loss of a close friends father at 21, and the loss of a close furry friend at 22.  Then a few months later after a failed try by my neurologist to get my chronic headaches under control I started experiencing anxiety.

Here we are several months later and I am on several meds for the PCOS, one for Depression, one for Anxiety and working on getting a competent pain management doctor even though my chronic headaches are somewhat under control thanks to my Neurosurgical team at Children’s Hospital of Michigan.


This article is written by Kate Dekoski


My Life With Hydrocephalus: a journey of faith, hope, and courage.


For years I have been told I should write about my experiences with Hydrocephalus and what they have taught me as a way to help other struggling with what it means to have hydrocephalus.  I do not know how much I can really help others with the disorder or to help families dealing with caring for a child with hydrocephalus.  All I can do is share my experiences, what I have gone through and what I have learned from the challenges I have encountered.  I have gone through periods of darkness, yearning for the light and wondering will things ever get better.  I am here to say that YES things will get better.  I have been called an inspiration, but I tell you know I am far from it.  I have gotten to where I am and accomplished I have because of the support I receive from many around me and my faith.  Without those two things I would have given up and died a long time ago.

My story begins in August 28, 1989 when I was born to, two of the kindest, most loving people I have ever known.  I was premature by 5 weeks.  When I was born I was not breathing and because I was so premature was sent by ambulance to a larger hospital with a Neonatal Intensive Care Unit, my mom told me that they had to stop the ambulance twice because I stopped breathing.  After 5 days she was first allowed to hold me. That is when she noticed a bump on the back of my head. She brought this up to the nurses and they told her it was nothing, but she insisted that it be checked out.  After a CT a neurosurgeon was brought in and I was diagnosed with an encephalocele, hydrocephalus and Dandy-Walker Syndrome.

An Encephalocele is where the skull bones don’t come together and result in a gathering of Cerebral Spinal Fluid and/or the brain and surrounding membranes become trapped. Hydrocephalus is the buildup of excess Cerebral Spinal Fluid in the ventricles (cavities) within the brain.  The buildup of fluid can cause many problems and even result in death if not treated.  Dandy-Walker Syndrome is a condition where a portion of the cerebellum is missing and replaced by a cyst.  The cerebellum controls muscle coordination and other functions important for life, or as I like to say, “walking, talking, breathing you know all those unimportant aspects of life” Some people look me horrified when I say it like that, but the way I look at it I am lucky to be here, why can’t I have fun with explaining my disorder.  One cannot be serious all the time.

I received my first VP shunt at four months of age.  From what I have been told and what I have read the surgery was done by a remarkable surgeon who was both the first woman neurosurgeon and the first black neurosurgeon.  My childhood from then on was pretty normal except for having to do a lot of PT and OT along with learning how to suck on a bottle.  My mom never gave up, doctors told her to institutionalize me, I’m glad she didn’t!  As hydrocephalus goes I was lucky, unlike many kids who have multiple revisions and complications I didn’t experience my first shunt revision till I was 13, when my shunt fell apart.  Since then I have had numerous spinal fluid and shunt infections leading to weeks at a time in the hospital.  The longest I’ve had a shunt since I had my first revision is 3 years, the shortest time less than 24 hours.

When I was 19 I had my first major complication, I woke up from an emergency revision to discover I couldn’t move my left side at all!  Luckily with a lot of PT and support I’m back up walking on two feet (with the use of a cane) and I can once again use my left hand and arm!  Then my sophomore year at college I had another setback which caused me to drop out.  I had been going in and out of the ER for months and back and forth to the Neurosurgeons office telling him something wasn’t right.  Finally after 3 months I was hospitalized with another shunt infection.  I was in the hospital a whole month!  The 2nd to last surgery I had before discharge damaged my optic nerve making everything from my right eye blurry.  Despite that and how week I was after a month stuck in bed at the hospital I started looking at new schools, I found one applied and have since graduated with 2 degrees both of which I cannot currently use because of complications from the shunt and hydrocephalus mainly Chronic headaches and other chronic pain.  I have also noticed a general weakening of my left side that seems to persist despite exercise.  That is a synopsis of my story just a little peak, life hasn’t been easy and this is only one part of my life I have also been diagnosed with PCOS, depression, anxiety and I fear there is more to come as I search for answers, but through all this I have learned to never give up.  You can become bitter or you can get better; it’s up to you!


Article written by Kate Dekoski


Spoonie Storie: Amanda

spoonie story Amanda

Hi, Amanda here. A spoonie still searching for answers.

Since birth I’ve struggled with allergies to everything, a comprised immune system, and issues with my feet (club feet & poor blood circulation). As I grew into puberty my female pain began, 11 years old. Asthma set in, allergies ruled my world. OCD was also a huge part of my life, eventually in my early 20s I was diagnosed with BiPolar Disorder after suffering 4 miscarriages(these turned out to be a result of my ex-husband having Balanced Translocation of 2 Chromosomes). The fight for mental stability coupled with allergies, asthma, fibroid tumors, PCOS, and never ending foot and spine issues have ruled the last 20 years.

spoonie story Amanda

In 2013 I had surgery on my feet with great hopes for relief, sadly more damage was done than I had before. This year I had my gallbladder removed, still fighting chronic kidney infections and stones, two hernia repairs, and finally in June a full hysterectomy, though I was able to keep my ovaries, praying they don’t fail on me. I’ve had Shingles the last two months, on my face so I’m fighting now to keep my left eye and left hearing.

Three weeks ago I fell down a flight of stairs while having a spasm in my eye, yes I was stupid for even being on a staircase. Now I’m laid up, going Friday for an MRI and scared to death of the damage I’ve done.

I’m still searching for answers concerning my immune system, last week they took 10 vials of blood for testing, I have no name for my endless fatigue, constant fevers, nights sweats, muscle pain, hair loss, hand tremors, migraines, swollen adrenal glands, inability to swallow, and a list of other endless strange symptoms that nobody can SEE! I’m searching, I’m so tired, I just want to know finally what is wrong, yes I have severe allergies and asthma, but that doesn’t explain all this other!

My mother is the only person who has stuck by my side, my father did as well, in fact he helped me escape my very dangerous marriage, but sadly we lost him in 2006. My mother and I are it, all we have are each other, she never gives up on me and I feel like such a burden. We are both on disability, she has so many health problems yet just today she sewed me heat wraps for my neck and feet! Without her I would give up.

I’m searching for answers, I’ve lost a marriage and have no children or siblings, sometimes my Bipolar is almost to much to bare. I’m still here though. I’ve not given up, I can’t, somewhere inside me I have hope, such a small little hope but it’s there.