My daughter was diagnosed only a few weeks ago, although she has had symptoms for years and we didn't know what was causing them. She was diagnosed after a severe headache that lasted 4 days and caused her to start vomiting. The first neurosurgeon we saw told us that her symptoms were too vague and he could not contribute them to the chiari, although a lot of them were spot on for symptoms listed on every website online. He pushed down hard on the top of her head, and ever since she is getting new symptoms and her old ones are becoming more frequent. The new symptoms are pain in her hand when she writes and pain in her feet and legs when she walks, along with becoming increasingly nauseous and having a really hard time finding words when she has to write for her homework. Other symptoms are headache, loss of balance, dizziness, complaining that her whole body feels itchy with no redness or rash on her skin and benadryl doesn't help, fatigue, poor sleeping, abdominal pain, mood swings. We have an appointment for a second opinion with someone else, but he is at the same hospital and there is nowhere else in our state for her to go if he doesn't help us. I am so lost as to what to do for her, and feel so helpless watching her suffer and not being able to do anything! Is there anything that can at least help with her symptoms? The doctors have just told us to give her motrin and tylenol, but they don't help.
I did post on another group and I think also on this one right after we saw the neurosurgeon. She has given some very strange descriptions. Last week she told me it felt like she was getting poked with a woodchip in her private area. I posted on another group and another young girl messages me and said that she had experienced the same thing and described it to her mom exactly the same way. I am going to push for a full spinal MRI as well. The other girl had tethered cord and thoracic syrinx. I want to make sure nothing like that is going on. It definitely seems like things have gotten worse since the first idiot pushed on her head. The second doctor is at the same hospital and he better not even think about doing anything like that…
How old is your daughter? Don’t EVER allow a doctor, or his/her staff, intimidate you! You are there to protect your child and you pay them not the other way around! I have been fighting for my grand daughter since she was 4 after her mother died. Doctors, schools, family members, therapists, you name it. We know you’re taking good care of her, but remember to take care of yourself too! If your not strong to fight for her, who will? We are here for you and her!!!
I don't feel everything is right at all. I am taking her to an opthalmologist this afternoon. I am thinking she has a lot of pressure in there. For the last few weeks she has been blinking really weird. She will blink really fast and then blink each eye separately a few times and then squeeze her eyes shut really tight. She has been saying that they feel really "itchy". They are not irritated and she has no drainage or anything. I have tried anti-itch allergy eye drops and they have done nothing. Starting to think there is too much pressure in there and it's pushing on her optic nerve or something. I called this morning and they told us to come at 1:15 and they would fit her in somewhere so hopefully they can shed some light on it. We have been fighting with doctors for a long time and I sure won't stop now. She has had problems for years and we have been fighting with doctors to find the cause with no success until we moved and made a trip to the ER for her massive headache with vomiting.
The opthalmologist said he doesn't see any significant swelling in her optic nerve to be able to definitively say that her eye problems are caused from the Chiari. I guess I have peace of mind knowing that the nerve is not swollen, but we are still right where we were with the symptoms. We go on the 26th for a second opinion with another neurosurgeon.
Beeba said:
Well? How did appointment go?
Hi. My name is Cindy. My daughter, Lindsey (24) was diagnosed 3 months ago. She began having symptoms at 2 years old. Her symptoms have always been there except for the severity and frequency. The symptoms have cycled through the years. One symptom wouldn't be as prevalent and another symptom would start.
In July of this year her symptoms began compounding one another with brutal severity. I try to visualize how she describes what she is feeling. I know I don't come close to feeling her pain.
As her mom, I feel. I have watched the life being sucked out of her over the last couple of months. Some mornings she doesn't have the strength to lift her head because it hurts so bad.
I understand your feelings of helplessness, despair, lost and scared to death.
Please know, you are not alone!
Today is my first day on this site and I have to say I can feel the support and compassion and knowledge and experience, wisdom and strength and most of all hope.
Stay strong, hide in the shower and cry, write down your feelings, keep posting on this site or wherever you find support. Your post has helped me so much today and I thank you,
My best wishes to you and your family
Cindy