Hi All I am Lisa I have a family of his mine and ours, its a semi large family by today's standards. I was born and raised in North East,Pennsylvania in June of 2005 We moved to Minnesota.My husband was raised in Mn and his children and family had live here. While we had talked about moving here some day little did we know at the time events would happen that would bring us here sooner then we may have first thought, i do think things happen for a reason.
And as time has progressed I believe we were brought here for medical reasons, While Pa will always be my home I also know that their medical abilities have been lacking. Since we have lived in Minnesota we have had some medical experiences that would make one wonder WHY?.
In 2006 my youngest son was diagnosed with ITP-Idiopathic thrombocytopenic purpura is a bleeding disorder in which the immune system destroys platelets. We were very lucky because he did not need any type of treatment beyond regular blood draws after being clear of it for 2 years he was completely given the all clear flag, To this day it is still unsure exactly how he got it but it is believed it was from an infection. Or it could also be said that it was something entirely different. In 2006 we discovered a mass growing on his neck while at the time i thought it was in the gland area of the neck and his doctor kept saying she didnt feel anything, While letting me wonder if I am feeling or seeing things because it would grow then reduce in size and continued to do so had i not been persistant and kept telling his doctor about this and she said i dont see anything then i led her hand to the mass and was immediately sent to an ENT who discovered it was a mass, and it had to be removed before it got too big or lead into the vocal cords, MRI was done and thankfully they could tell from the scan that it was not wrapped around his vocal cords but it was very close and she did not want to take any chances and letting it grow more.
She did tell us that the mass would be tested to make sure it was not cancerous. So off we go into Childrens Hospital to have this mass removed- pretty much holding our breath until we heard about wether the testing was positive or negative. Thankfully enough it was negative for cancer cells. He stayed in the hospital for maybe 2 days then he was home now several years later he has the scar and some faint memories of that time. Which might i add the has really been looking nice and fading as the years go on. And thankfully the memories he does have of that time are very good ones.
The next several years were semi uneventful except for some bunion and heel spur removeals.
Then March of 2009 came in with a bang. Pretty much pulled the rug out from under me. I woke up one sunday morning tired with pain in my leg, just below the knee but none the less i went and helped a friend who was needing a ride, as the hours went on the pain got much more intense and by the time i got home I was drained, I came home slept the very next morning i woke being dizzy and sick to my stomach with this headache that could beat the band, not to mention auras, and rining in my ears as the days went on symptoms had gotten progressively worse.
Finally able to see my PCP who said "Gee you are dizzy see the ENT" What seems like a wait of a lifetime because as the days went on the symptoms got progressively worse, ENT doc done a hearing test, a tilt table test and said they all look clear with minor hearing loss- she suggested i have an MRI done. About a week later Back to get the results and this is when i found out i had Chiari Malformation. which then led me on a whole new adventure one to find a doctor who knew of this Chiari, and to try and manage life with what seems to be a never ending battle with new symptoms.
After many more MRI's Finally got an appointment to see a neurosurgeon who said they were suppose to know about Chiari Malformation only to be told "Yes, I have chiari but to come back when I can no longer breathe" That was the dumbest and most alarming statement i have ever heard. I was then sent to a Neurologist who done even more testing and couldnt believe all my symptoms were caused by chiari. Finally I had enough of these doctors who are making me feeling like I am making this all up or like i was an alien or something I found a doctor who actually specializes in Chiari, He was in Wisconsin I sent what he needed and then I had my appointment with him and. We were understanding things correctly, I needed surgery.
So, in Oct 2009 I had this surgery, knowing the possibilities of all that comes with surgery at first things seemed to be alright well that was until thrush set in then life of trying to heal was turned upside down and I went from trying to heal to trying to even hold down my food. After 19 days from first surgery (Chiari decompression surgery) and several ER visits, Finally one ER doc read previous visits information listened to my husband and thats is when they finally discovered i had so much fluid on my brain that i needed to have emergency life saving surgery preformed. Yup I had Hydrocephalus- sure some may think it was my complication and wondering if at the time i really needed the shunt placed inside me.
The next 6 weeks would be rather interesting i spent that time in and out of the hospital once again because of now too little fluid on my brain basically causing it to shrink. Changing the settings of the shunt and having a hospital stay of almost 2 weeks. Since then I seemed to handle things alright, except ever time we drove further then 20 miles from home i would have such tight muscles it would cause me too much harm, Which didnt actually come about til We made what should have been my 3 month check up 6 months later back to the Chiari doctor in Wisconsin.
Now a year later I had suffered some pressure headaches which for me being i lost roughly 6 weeks of memory I didnt know or understand what they were thankfully enough my husband asked the right questions, and suggested i return to the neurosurgeon who placed the shunt.
And He was right the shunt needed to be changed after about a month of back and forth to see him the shunt is now draining on a medium speed or flow. Which now confirms to me that I did need the shunt and I may have needed one sooner but because my body adjusted to the chiari i never knew it, and now with the chiari decompression surgery done it opened things up too much and my body just could not adjust to it quick enough.
While I will say doctors were amazed that this fluid had taken so long to build up they all said it should have happened much sooner. Since Oct 2009 I have been in constant pain some things more painful then others- but none the less pain can ware a person down pretty fast and change their outlook on life and people around them.
I had done the whole doctor thing, the whole PT thing which did not work all i got out of PT was from him pressing on my neck (spine) I now have a constant numb facial areas, I recently and finally had been accepted by pain management and so far things seem to be working, I did have steroid shots which hurt like a SOB and really hope i do not need them again, Also have been given a TENS unit which is wonderful, and now learning or experiencing what they call biofeedback- which really has my curiousity up.
So As you can tell since Oct 2009 life has challanged me beyond what most people would ever expect or want to confront!. I havent given up and learned to take one day at a time and to enjoy the good days! I am so very greatful to my husband for saving my life and being there for me and caring for me and my youngest son for trying to understand and help me the best he can, I am also very greatful to my sons past teacher she really was very helpful and very caring. I have been blessed to have such wonderful people in my life.
