I was 30 and it was in 12/96 when my daughter(Morgan, then 2) had a febrile seizure while we were out of town.It was her grandfather's birthday party, which she was too sick togo to. I had stayed behind to care for her when she had a febrileseizure (due to uncontrolled fever after a vaccination).Previously, while traveling, I had fallen asleep in the car andseemed to have pinched something in my neck. I was just a littleuncomfortable.
I had contacted the restaurant where the birthdayparty was to have Doug (my husband) bring home some liquid Motrin,as the liquid Tylenol wasn't working on her fever. When my daughterstarted having her seizure I was by myself, so I called 911. Ofcourse I didn't know the exact address -- my husband's cousinshouse doesn't cut it for directions. While on the phone with 911,my husband had returned. At this time I was experiencing severehead and neck pain. I thought that it was due to stress andexcitement -- increased blood pressure.
We got her to the hospital -- thank God she was ok.My head was still extremely throbbing. After the weekend was over,we returned home and I went to my primary care physician. Shedecided that I had strained my neck so they put me through physicaltherapy for that. Sometimes it would feel better and other timesthe pain was so severe.
After completing therapy, the pain was still there.So, they put me on pain killers -- still not addressing theproblem. Many trips to my physician and a few medications later, itseemed to get better. At this time I was pregnant with our secondchild and my neck would only give me problems occasionally. I wouldsleep only on my back and with the pillows a certain way.
I made it to March 22, 1997. At midnight I had donemy typical trip to the bathroom -- with being pregnant, they areoften. While washing my hands I vomited. It was a little, but Ithought it was just the pregnancy. Then I began to feel my rightside crumble. I had started drooping on my right side. I leaned onthe bathroom wall and slid down to sit on the floor. I called Dougfrom Morgan's room -- she wasn't sleeping that well. Doug came intothe bathroom and I was able to speak a few words to him aboutgetting my insurance card to call my doctor. He came back with mypurse as he was unable to find my insurance card, and I at thattime was unable to speak. Every time I tried to speak, the wordscame out all wrong.
Anyway, an ambulance was called and they took me toa local hospital. I sat around while everyone tried to figure outwhat was wrong with me -- scared out of my mind. Unable to speak, Iwould just look at my husband terrified. God blessed me with him.He has been the greatest -- my backbone!
I ended up being taken to Westchester MedicalCenter for stabilization. There I laid around while someone triedto figure out what to do and where to put me. They ended up puttingme with maternity, which was awful. At this time I didn't want tobe reminded I was pregnant. This is a tough point for me.
Anyway, I was stabilized and the baby wasterminated. At some point they had told me of my AVM -- who knewwhat an AVM was. I'd never heard it on "20/20" before. We hadappealed our insurance company's decision twice and lost both. Wehad heard from one of the neurologists at Westchester of a doctorin NYC who was very well known. We lost so we were sent to Brighamand Woman's Hospital in Boston -- where actually we won. It came tobe a very excellent hospital Once there, they did an angiogram andsent me home.
After that there were 2 embolizations, then camestereotactic radiosurgery. Depression set in. One of myembolizations was great and the other not so good. After the "notso good one" the doctors had thought that I had had another stroke.Nothing showed up, but what I had progressed to in therapy, I hadlost. Time to learn to walk AGAIN!
And here I am. Just a little swelling with one ofthe procedures -- nothing a little steroids didn't take care of.Steroids are not good if your watching your figure. What anappetite!
This 8/99 marks 2 years since the radiosurgery andmy doctors in Boston advised me recently that they want to waitlonger, possibly 1-2 more years to give me more. My AVM was 7.9 ccin size. I think that the size scares the medical society.
Depression has subsided -- thank God. I continue intherapy and I enjoy my family to the fullest. It wasn't until thismedical situation that I began to appreciate the things that mosttake for granted. I'm 33 now and already retired from work. I was asecretary for the government for 11 years. My husband is a chef ina small growing restaurant. We have moved to the area where I grewup -- rural New York. I want life the easiest for all of us. Iactually feel great -- an occasional "brain cramp" but I'm doinggreat. Tah dah!!
Update 8 Aug 2000
Last month (July, 2000) I received a call from mydoctor in Boston and that they would like to see me. It has beenthree years since the stereotactic radiosurgery and they figured itwas time for a visit. They had told me that we would have aconsultation on Friday and then expect an angiogram on Monday andpossibly some embolization on Tuesday. Whew, it was all going sofast.
We had made arrangements for the care of ourdaughter and headed out to Boston only 5 days after the call. Aftergetting somewhat lost in Boston, we finally made our way to Brighamand Women's Hospital. We met with the Associate Chief inNeurosurgery, the Director of Neuroradiology, and then theProfessor of Radiation Oncology/Director, Northeast Proton TherapyCenter.
To make a long story short, they decided to send mehome! Yes, home! The last radiosurgery was still shrinking my AVMso they gave it another year. They also changed my MRI/MRA schedule- instead of going every 6 months, I go once a year. I walked outof the hospital with a huge grin. I was feeling great. So greatthat I went and bought some lottery tickets. Ha Ha Needless to say,I didn't win! But, that is ok!
As for now, everything is going great. What I wouldlike to say is "THANKS" to the whole group. We are not aloneanymore - and that is a great feeling!
Update: 5 Sep 2002
My update began on the 8th of August when I went toBoston for a scheduled consultation and implanting of skullmarkers. The consultation went very well along with the markers. Mynext appointment was to return to Boston on the 27th for four dosesof radiation, with a NON-evasive head unit!!!! Yippee!
My return on the 27th went very well. I am feelingsuper!
The photo that I am sending was taken in June, 2002when Doug and I escaped for a weekend up to Alexandria Bay. Thetrip was unbelievable. We took the plane, along with a pilot, on asight seeing tour!!!
Editor's note: Thiswas the last update by Susan.
18 June 2004
I just read my cousin Susan's narrative for thefirst time. I also read a few other narratives and felt like anintruder because I do not have AVM and ended up turning off mycomputer. However, I'm back and hope it is okay to ask for supportfor Susan's 10 year old daughter. We lost Susan unexpectedly onTuesday (June 15, 2004) and we are devastated. Doug, Susie'shusband, is like a brother to me and my brothers and we all loveSusie the same. I write because I am so worried about their 10-yearold daughter now having to adjust to a life without her Mommy.
Susan was an admirable and awesome Mom and wife.Her optimism and "live each day to make it count" attitude is sovery inspirational. She was completely involved in her daughter'slife-from school (PTA and parent helper in the classroom) - tofriends - to family. Susan did her best to ensure her daughter knewshe was cherished and did her best to raise a happy, well-adjustedchild. And her daughter is very intelligent, very well-adjusted butthe happiness is coming and going these days.
If there is anyone reading this that has (or knowsof) a child who may have also lost a parent because of AVM, perhapshe or she might like to communicate with Susan's daughter? Ourfamilies will be doing everything possible to offer our love andsupport to Doug and his daughter, but I wonder if it might also behelpful for their daughter to be able to communicate with anotherchild who has had a similar loss.
I'm wondering if someone reading this may know of a"pen pal" for Susan's daughter. I would love to hear from you.Also, if you have been through this and know of any way I can helpDoug and his daughter cope in the next few months, I would trulyappreciate the advice. Thank you — Eileen Eppelmann
21 June 2004
I don't now where to begin but I am saddened to saythat my best friend Susan Winters has lost her battle with her AVM.She had a massive hemorrhage from the AVM.
I am so lost without her I can hardly write this. Iwould like to express my appreciation to bill and all other familymembers for having a special group. I would like to say thank youand God bless.
Susan is in a better place right now and that ishard for me to say. My daughter and I will move on as Susan wouldhave wanted. I would like to continue this in her name and I willtry to keep up with all of you. Thank you again so much!
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