TALK TO A
Established April 15, 1995
University of West Georgia Disclaimer
11 April 1999
Cassi was 7 years old when we first noticed something was not right. I was a nurse working the night shift at a local hospital. We live 50 miles from where I worked. When I would return home the kids would have already left for school. I first noticed some blood on Cassi's pillowcase in front of the washer, when she came home from school I asked her why she bled on her pillow? She only replied she had had a nose bleed in the night. We have a buck stove so I thought her nose was to dry so I placed a vaporizer in her room that evening before leaving for work. The next morning more blood on the pillowcase. Hmmm.
That night before leaving for work I put KY jelly in her nose. The next morning same thing only more blood than before... I had that night off work so I was up cleaning the bathroom at 4am, when in walked cassi with her hand in front of her mouth blood spewing from between her fingers... She said "mommy its my mouth!" I had her rinse out with icy cold water and it looked like the blood was coming from under a tooth. I told her we would go to the dentist later in the morning... After several attempts to get her in that day we finally found a new dentist that would check her teeth. We arrived at around noon and she took one x-ray and came into the waiting room and instructed me to take that x-ray over to the hospital (where I worked at anyway) and have the oral surgeon take a look. I'm thinking , gosh this kid needs a tooth pulled...
We went there and he took Cassi back for a panoramic x-ray saying he could see more with that type of an x-ray. Then came my shocker...he came out with x-ray in hand Cassi standing beside him and put his hand upon my shoulder...he said this is very very serious...I put my nurse hat on and started taking notes, like this was my patient and not my child...I still have the notes...AVM...tumor...involved in the mandible...only 30% chance of survival...many treatments involved...schedule 1st embolization for Monday, watch her for bleeding if too much blood call.
Not much info and I still had to drive the 50 miles home...in shock, with Cassi asking a million and 4 questions ...that I could not answer. It was a very bad thing that's all I knew. That was Feb 13, 1997. Cassi wanted to go to school the next day cause it was valentines day and she knew her buddy Nate had gotten her a valentines...that was Friday. Monday we went to the hospital...she had her first embolization, it was done while she was awake and the doctor used gel-foam (what a joke)...a nightmare for us all, but Cassi begged me to please just let her die...she never wanted to go through that again. We brought her home the next day she had to receive a blood transfusion before we could leave.
Two days later she bled out 500cc of bright red arterial blood. We tried to contact the radiologist, but no one answered and the guy on call for him didn't know what to tell me. The next night she bled again this time we took an ambulance to the hospital. The ER doctor said she had gingivitis and said he could not help her. We got the bleeding to stop by holding pressure so he sent us back home without a CBC. She was so weak she couldn't walk. I was feeding her vitamins and all kinds of iron rich foods but she was very weak. I called the oral surgeon at home and he found us doctors at Riles Children's Hospital 120 miles from home. Cassi had another embolization with PVC and then another 3 days later. She continued to bleed.
More blood for her this time I donated mine. The next time her sister Leilani donated hers then the next time it was her sister Niki... All in all she had 6 embolization and 7 blood transfusions... We ended up getting Dr. Andrew Denardo from Methodist Hospital in Indianapolis to embolize her and place super glue inside the nidus of the AVM. That's what finally worked enough to safely remove the tumor in her jaw. Her oral surgeon Dr. Mark Anderson from Indiana University scooped out her entire jaw and then a plastic surgeon was called in to remove soft tissue from her hip and make a new jaw bone. Dr. Anderson says that's one bone growing kid!
Her last check up was good. We do MRI's every 6 months to keep a eye out for any new AVMs. She has a partial denture but he will do implants when her mouth quits growing. She survived this, but is still a anxious child, scared of doctors and I no longer work at the hospital where she was first treated. I stay home now and watch the children grow (we have 8). After being told what she had I can now look at pictures and notice the swelling that was there all along before all this. Now she looks normal. Her lip is permanently numb and so is part of her jaw but she is doing well for now.
Update 15 May 1999
Cassi had her check-up and everything was great this time, the headaches were explained as pre-puberty...nosebleeds as a sinus infection. What a relief! She had a cat scan and a panoramic x-ray. Her doctor has moved to Danville, Illinois so now we will go there for follow-ups.
Her mouth is still growing so we still have to wait a couple of years for the implants, but she has lost more teeth and needs a new partial plate, as to not ruin her bite. She is going to Florida for the summer. We owe her a vacation.
Update 12 Sep 1999
Cassi went to the doctor last week because she had been out on the playground at school, when out of nowhere came a football which of course made contact with her chin. Now she has no feeling there plus a bruise, I was thinking with all her surgeries I should have her checked. Her jaw is great, no signs of new growth or weird blood vessels, however the whole side of her face turns purple, deep crimson, whenever she gets excited, runs,exercises,plays...this worries me. I have mentioned this to the doctor on several occasions. Her face has done this since she was little, but now its a much bigger area that turns red. Then she also has lots of blood vessels that you can see through her skin in that area, doctor said shes too vascular there... try and get a good pediatric neurologist and see what he wants to do, hmmm. Well, I guess we go find a doctor, or he will recommend one. Has anyone experienced this before, (the cheek thing) thanks, I'll keep you posted.
Update 7 Dec 1999
I have to take Cassi to Indianapolis Methodist hospital so she can have an angiogram and any embolization they feel needed. She's to be NPO at midnight Thursday. She has been complaining of increased headaches and has presented with bleeding the past week and a half from her mouth again, above the last one. Her school picture shows more swelling in that area, pushing her cheek out and her eye inward. She has an audible pulse in her left cheek, when she gets excited she turns very red on that area of her face. That is all I know for now, will keep in touch.
p.s. prayer is nice...
Update 2 Jan 2000
We took cassi back to Indianapolis in December for an arteriograph. They located two AVM. One is directly on her chin the other is on her mandible where it connects with her skull( so actually both are on the mandible). They told us they are small so they will just monitor them for now...she is in puberty so they could rapidly grow. We voiced all our concerns beginning with, I thought the mandible was completely taken care of, doctor's response was we have to remove the entire mandible to remove the entire problem, we don't want to do that until she stops growing because she would be deformed ( something about plastic does not grow and she will continue to grow).
They referred me to a neurologist for her headaches, saying they do not appear to be avm related. There are times she just holds her head and cries cause it hurts so bad. We will take her to yet another doctor after the holiday hub-bub. In the meantime she has panic attacks everytime she tastes blood in her mouth, (almost daily). And she lives with knowing that there are two more and this has not ended for her. A lot for a 10 year old to carry. W just continue to ask for prayer... Thank-you.
Update 25 Jun 2000
Hi all, thought we would update a bit. Getting ready to leave for Colorado next month. We are taking CASSI to Englewood Colorado to have the ethanol treatment done. Since finding that the "glue" causes recannilization of these lesions, we decided after checking out this clinic and Dr. Yakes this is the only reasonable thing we can do.
For the past year CASSI has not been able to play out at recess, play in P.E. at school, go blading or biking with her friends, and now its summer and she can't swim either. It causes too much of a rush of blood to the 2 AVMs she currently has. Causes them to pulsate, turn her outer skin red(blush) on the chin and mastoid process. She is tired of it. Her friends at school called her tumor face this year at school and many times I just wanted to sit and cry with her. We are fighting back though. she is a tough kid and she is gonna whip these.
She turned 11 in May, she has gained weight (too much probably) over the year (no exercise) says her best friend is the T.V. and feels sorry for herself alot. Hard to deal with, and puberty right around the corner. This doctor has a great success rate and a clinic totally devoted to AVMs and vascular anomalies. It's called the Swedish Columbia Medical Center. We leave July 28th - her surgery is July 31st. We will let you know how it goes . His success rate is over 90%.
Update 27 Aug 2000
We went to Colorado for the ethanol TX. One of the first things Dr. Yakes did was order a new MRI. Then prior to her embolization he asked me where these are coming from? Well ...? I didn't know...perhaps hereditary? I have several family members who have had these (now they want a genetic study done on our family). He asked if another Dr. could come scope her just to have a look,see. I agreed, after all we had come so far anyway, look, find it all and fix her, was my attitude. Well, Dr. English came in, scoped her and found two more bundles of AVM in her esophagus, guess that's where they were coming from.
Cassi did really well with the Ethanol TX. The swelling from the ethanol was reduced with steroids. She was released from the hospital the next day, then we hung around Denver for 72 hours , then returned home, all without complications. Cassi was able to go horseback riding, to a concert, and also swimming following her procedure. We have to go back out there. She has surgery set for October 9th and again on December18th, they will go after the ones in her esophagus, one at a time. I found Dr. Yakes to be very good with his patients, very knowledgeable,and not one of those who talk at you, he speaks directly to you.
Dr. Yakes has a 97% cure rate with 0% reoccurrence. Our doctors were NOT for us getting this treatment, however Dr. Yakes does 15 of these weekly, and is considered the leading EXPERT on these. He also treats brain aneurysms. People come from around the world for this treatment. I was so amazed, he has this map in his surgery department and you have to put a push pin where you are from. The world map has over 100 push pins and the USA map has over 1000....as compared to Indianapolis where our previous doctor had 7 patients and Cassi was one of his 3 survivors. I still love Dr. Anderson, and he will continue to care for Cassi's oral surgery needs, however I decided to put Dr. Yakes in charge of the AVM's, because he is the Expert....
Cassi's hair is falling out from her treatment, but she has taken that ok. she knows by Christmas she will be healed and that her hair will grow back by spring. Right now we have a very rosy outlook!
Thank you to everyone who has kept in touch...and prayed, thats how we found our Dr.Yakes!
Update 21 Oct 2000
We have once again returned from Englewood, Colorado. Cassi was embolized again this time using 5cc ethanol,( the last time it was 10cc's of ethanol.) the procedure was terminated after her heart did a spasm thing and she was given 400mcg of nitro (at which point the spasm was relieved). We will return in December for another treatment. Dr. Yakes is still very upbeat about her prognosis. However I am not so naive as to think that we may have to make a trip in February to be sure its all gone.
I still am very impressed with his unique treatment, and his success rate, he is doing 16 patients a week! He has written a book about the various treatments, and about AVM's in general a lot of our readers would find useful. Mona won't mind mailing them out if requested. I told them I was going to post their number so people could find them easier, it is 303-788-4280... until December.
Update 31 Dec 2000
This is not quite the update I wish I was writing, but so far so good, we have returned again from Colorado from CASSI having her ethanol TX. Dr. Yakes reported to us that the AVM was totally gone out of her bone (jaw), thats Cassi's best Christmas present ever she exclaimed! He can't say she is cured yet, we have to return in 6 months for a follow up MRI and an arteriograph, they will shoot some dye in there to make sure it is all gone!!!! Then we hope to hear those magic words!
We do want to thank everyone for their prayers, and words of wisdom in getting through this with her. Long term... she is a bit disorganized, a bit on the spacy side...(could have fit in really well if it were the 70's) Still will have to have teeth implanted when she stops growing, at that time she says we can send a new picture. But she got a digital camera for Christmas too so we will try and talk her into a new picture to send you.
While we were in the hospital she had a roommate, who had an AVM beside her eye, she was 6. Cassi stayed at the hospital for the first time at night by herself (at her insistence). I think it was because of her roommate, (so thank you).
We will update again in 6 months... till then keep hoping, and keep praying, never give up.
Update 13 Feb 2001
OK, I know I said we didn't have to return until June for a check up, but, cassi was bleeding from under a front tooth, ran her over to Illinois, the Dr. said better take her back to Colorado. Got her out there, Dr. Yakes did an arteriograph, and ....AVM ALL GONE OUT OF Mandible!!!!!!!!!!!! She will go back out in June for a Check up and then only once a year thereafter for a few years, then once every five years, etc!!!!!!! :) Ok, we are very happy with the news...evidently the bleeding this time is just gingival bleeding....life is so good!
We want to thank the people who have stood by our family through this, our Families, and the great fundraisers that they have done, thank-you ABATE too! And OF course God who we could have never done without!
Update 1 Jul 2001
Just back again from Englewood.......SHE'S CURED!!!!!!!!!!!! :) We are thrilled! I am so glad we found this Doctor! Now the plan is to return yearly for a check-up, an arteriograph, just to make sure nothing new grows. Her feeder vessels were her internal and external carotids, so they just can't get rid of them, kinda need to keep those, so... we will just make sure everything stays normal for her. But ....as of Monday June 25th, 2001, Cassi is AVM FREE!!!!!! God Bless, Cathy
Update: 7 Jul 2002
Hi this is Kassie Overton, and we are getting ready to go out to Colorado for a 3th checkup surgery. I am very anxious to get this over with! We should arrive on the 14th. I have to have my MRI on the 15th and then I will have surgery on the 16th. This is my one year exam for being avm free and I hope I still am! Terrible if not but I know that after all this time that if God didn't want me to survive this then he would have brought me to him a long time ago.
Please wish me luck for this! My mother will update again afterwards okay?
Update: 25 Jul 2002
Back from Englewood, Colorado. Dr. Yakes says Cassi remains AVM free!!!!!!!!!!!! We are very happy about this. They also tested her vocal cords this trip out (she wants to be a singer). They gave us a print out and told us to take it to a professional voice instructer, that they would be very intrested in her ranges etc...
I still am amazed at Dr. Yakes success, while we were there he had an emergency bleed come in, worked on that guy 4 hours....said, hes fine now...just like nothing was happening....he is definately a miracle worker!!!!!
Dr. yakes said he would see us same time next year. I want to add these follow ups are very important, these are birth defects and even if your avm is gone, that does not mean you won't ever develope another in the future, we are staying on top, for ever!
Update: 13 May 2003
Can't believe we just celebrated Cassi's 14th birthday. We go back to colorado the end of the month, her next treatment is set for june 2nd. After seven years of this I think we will have to file chapter 7 when this one is done. We do not qualify for any assistance and our medical deductible is 7,000.00 per year, and every year x 7 years we have had to pay that out of pocket. It's just getting to be too much financially.
I worry Cassi will never be able to go to college, she struggles to keep up now, this has made her so spacey, is that normal? its almost like she has ADD, although she doesn't. She seems emotionless as times, maybe desensitized? Or maybe its the 14 thing? Thats what the family dr. thinks, but I have raised teenage girls before, and although I agree they are quite flakey...this is different.
I will update on our return, she always gets so scared before we go
Update: 09 Jan 2004
We went back in June to take Cassi out to Dr. Yakes for a treatment. He says she is still too vascular in the floor of her mouth and her tongue, but no AVMs in her mandible. So that is great still. And we again will be making her another appointment out in Denver for this coming June. (it just never ends, does it?)
We took our house off the market for now...longer story. We are all avoiding the flu, and wishing all a happy new year.
Update: 22 September 2004
We went to Englewood (Dr. Yake) on Cassandra's15th birthday, may 10th. She had her 21st. proceedure, (some birthday gift). They located two more masses of blood vessels and treated them, one in the base of her tongue, another in the floor of her mouth.
Last saturday night while at our local Fall Fest, cassi and 8 other kids hopped in the back of a pick-up truck. The driver was hot rodding, popped the clutch, they say he was only on two wheels, cassi was on the tailgate. She flew off! They air lifted her from home to Ft. Wayne, which is where I'm writing you from. She has a couple of skull fractures, brain swollen, she awoke yesterday, and by last night recognized me. The swelling is going down, she is making more sense today. Dr. says her ear bones are shattered and she may never hear from that side again.
I called Dr. Yakes to let him know, David, his P.A. doesn't think it affected her avm's. They diagnoised her as having Osler Weber Rendu Syndome in May. Hmm, after 8 years, now a dx? Oh, well just thought I'd say we are still out here.
Update: 21 March 2005
Just returned from denver again, great news this time, finally after 9 years, and 22 surgical proceedures, we do not have to go back for 2 whole years!!!!!!!!!!yeah!!!!!
Dr. Alverez (the hemotologist) sent several vials of her blood out last year, and we finally got the results, Cassi has Osler Rendu Webber Syndrome, with Von Willibrand's antigens...HHT ( Hereditary Haemorrhagic Telangiectasia). She remains deaf in one ear due to the wreck she was in in September and has no sense of smell, dizzy, and nausea, and panic attacks, but not bleeding.
I am entering a new phase since I have 2 years...I am going to start a group home for young adults in the U.P. of Michigan, this gives me some time to change insurance.....wow....wish us luck!
Update: 23 January 2006
Cassi will be 17 on May 10th!!!! We do not have to take her to Denver this year, but we are starting her back with Dr. Anderson to see if he can realign her mandible on the upper part. Her teeth and jaw grew down too far due to them removing her jaw bone when she was seven and replacing it with her hip bone. She refused to wear her partial because the kids made fun of her. Hopefully she can get the screw ins that Dr. Anderson talked about when she was so little.
Other than that she is on a new anti-depressant, and in her junior year at high school. she is starting to worry how she will ever afford her disease. Reality BITES!
Update: 16 August 2006
Well, it runs in our family... Cassi is now 17 (cassi was seven), going for proceedure 28. We are in Colorado now. In the morning (August 16) I will have my 3rd set of MRIs . Cassi has surgery at 8 am Thursday, mine is set for 8:30 a.m. Her nose has been bleeding, my legs are exploding, or so it seems, and my lower spine. Will catch up after we are done with it.
Update: 19 August 2006
We are still in Denver but wanted to update you. How is this one for confusing????
I had my MRI doctor said I have old age...got to take my MRI to a neurosurgeon, but it is not AVMs. Then Dr. Yakes asked us what made us think we have Osler Weber Rendu Syndrome and the Von Willebrands antigens? Well...we were here when we got the dx on Cassi, then we went to the hemophilia center in Indianapolis and they took 18 vials of blood from me and later said I had it too. He told us neither of us have it and he would have that doctor come talk with us. No doctor came to talk with us.
Cassi had her MRIs, then surgery, Afterwards the doctor didn't even bother to come and talk with Cassi, he spoke with me by phone and said Cassi is cured and we don't need to come back for further check-ups. Ever.sooooo confusing, but we heard the words she is cured. Dr. Yakes was very distant this time, not like previous visits...maybe he was just having a bad day? Don't know.
Well that's that for this visit...going to fly home next tuesday...Cassi is seventeen.
Update: 19 April 2010
Cassi is going to school thru voc rehab down in Florida, she really needs to go back to see Dr Yakes as her face has way too many visible blood vessels and her face is turning purple again, but sadly she can't afford it nor can she afford insurance at this time. maybe with the newer insurance regs we can get her back on our insurance. Voc rehab sent her to drs in Florida but they want nothing to do with her avm problems. and told her to go back to Colorado to get treatment, but again,,,they always want the money so sad to say she isnt getting any of the help she needs, gotta love America!!! her mom, Cathy
© Copyright 1999 Catherine Overton
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