For several months I have posted sporadically on Wellness.com. My husband and I found out that our 13 year old daughter has a rare illness called pseudotumor cerebri (older name) or intracranial hypertension (newer name).
When someone asks our daughter about her illness she usually says, "I have too much spinal fluid and I need a shunt in my back to drain some off. Since I have a shunt I have less headaches and I can see better".
Last May, after 4 years of not feeling well and countless doctor visits we finally found out why she didn't feel well and she was finally diagnosed. This illness occurs when the blood vessels in the brain cannot absorb enough spinal fluid from around the brain, which leaves more fluid than necessary around the brain and spinal cord. If the spinal fluid is not absorbed properly the pressure builds up inside the head resulting in severe headaches, and vision and pituitary problems. The treatment is to reduce the amount of spinal fluid, which sometimes can be done with medications. However, sometimes medications do not work very well or cause even more problems. If medications don't work out then another way to reduce the amount of spinal fluid is to put a shunt in either a ventricle in the brain or in the lower part of the back.
Since medications did not work well for our daughter we decided to take her to Barrows Neurological Institute in Phoenix, AZ to have a shunt put in her lower back. The shunt worked very well until it had to be removed after an infection developed a couple of months later. This made everyone in our entire family very sad because the shunt worked so well and we didn't want to see our daughter go back to how things were before.
About a month after her infection cleared up we took her to Children's Hospital of Orange County in southern California for a new shunt. Once again, she is feeling better.
I am sharing this information with all of you for a couple of reasons. First, I wanted to let you know that I haven't forgotten about my blog and the important message that it brings. I haven't blogged much for the last 6 months because my family needed me. Second, I also wanted to share our story because we faced many of the same obstacles to getting treatment for this illness as women and men who are seeking treatment for hypogonadism face.
Persistence is what finally got our daughter appropriate treatment and is allowing her to feel better and regain her health. Whether it is hypogonadism, pseudotumor cerebri, or any other illness, you know when you don't feel well better than anyone else. We didn't give up and neither should you. Trust yourself and be persistent. If you feel sick, particularly for a long period of time, then something is wrong and you have every right to ask a healthcare provider to help you figure out what the problem is and what can be done for it.
It took so long to get a diagnosis because our daughter did not fit the classic profile of a child with this illness and has a rare varient of it. A key part of diagnosing this illness is to see swollen optic discs. Hers did not look swollen to the naked eye. The swollen optic discs could be seen with an OCT machine but not one doctor even suggested further work-up. Instead we were told repeatedly that our daughter must need more friends or more relaxation time, that she had blurry vision and headaches because she was overtired, and that she has a vivid imagination because when she was younger she thought her pillow was alive because it made whooshing sounds (Whooshing sounds in the ears is a classic sign of this illness but because she didn't appear to have the swollen optic discs this diagnosis must have been dismissed because it was never mentioned to us).
Initially, we believed the doctors. Our daughter was young and we believed the pediatricians and countless pediatric specialists would know better than us what was going on with our daughter. What we found out is that our daughter knew all along that something was wrong and told us so. We raised our daughter and know her infinitely better than these doctors we sought help from. We realized that our daughter knows herself better than anyone else and when she says she has blurry vision and headaches we believe her.
It took a long time to get her diagnosed because of the box that most doctors have built around themselves. Finally, we found a child neurologist that just sat and listened to her for 5 minutes while she described her illness to him. When she was done he said he thinks that she has pseudotumor cerebri and we can confirm it with a lumber puncture to measure her spinal fluid pressure. He said she doesn't need to have swollen optic discs to have this diagnosis. Sure enough the spinal pressure was elevated and she was finally, at age 12, diagnosed.
Trust and persistence are what we needed to help our daughter and it is what you need to get diagnosed and treated. Trust yourself that your symptoms are real and be persistent in asking for treatment. Don't be put off by a doctor who is unfamiliar with your illness, as the majority of doctors are. Many doctors paint themselves into a box and refuse to question their own training in diagnosing and treatment of an illness. Profound hypogonadism (menopause) and hypogonadism (peri-menopause) are very real and treatable illnesses. Don't give up on yourself. You know yourself, you know when something is not right, and you know that something can be done because you used to feel better. The majority of doctors still think that Premarin is HRT and do not question how HRT for menopause is the only HRT that doesn't work to improve health.
Our daughter is doing better but still has a ways to go. She knows when to ask for help and she knows that if a doctor doesn't understand her condition and doesn't want to learn about it to help her then she knows to go to someone else. Some doctors think you can cure this illness with medication and refuse to accept the notion that a shunt is good treatment. Because so many doctors paint themselves into a box and refuse to learn more about our daughter's illness we end up knowing more than the specialists. This is the way medicine is structured. Like a club, majority rules.
Accept that most doctors don't realize that profound hypogonadism (menopause) and hypogonadism (peri-menopause) require treatment. You know that you need treatment to feel yourself again and to be healthy again. Accept that most doctors blindly accept that horse urine can replace the intricate functioning of the ovaries and not question that horse urine condensed into a pill or a cream is unhealthy for human women. Genuine HRT for hypogonadism will make you healthier just like every other HRT (thyroid, cortisol, and growth hormone) will make you healthier if you use genuine replacement appropriately.
Trust yourself and be persistent and you will find a healthcare provider who can be your partner in restoring your health.