TALK TO A
Jesse and Lindsey
They are what keeps me going every single day. I have three angels, one in Heaven and two right here with me everyday.
24 June 2006
I am 33 years old and lost my 8 year old daughter, Chelsea on January 6, 2006. Her post is on this site. She died of a brain bleed less than 2 weeks after being diagnosed with over 20 dural arteriovenous fistulae located in her brain. After this event, I decided to have my recurrent hip pain evaluated.
I had been seeing doctors for a number of years. I was a swimmer in high school and after. I began to have increased pain in my hip, thigh, and back. I would get numbness in my left leg and foot, and periodic sharp stabbing pains in my leg. I walked into my doctor's office and basically told her I wanted a MRI of my hip. This was done and two masses were found. They are located in my left anterior hip as well as my gluteus muscle on the left side.
The doctors in Anchorage, Alaska told me I needed to have the diagnoses of sarcoma ruled out so I went to Portland, Oregon for a biopsy. The final diagnosis was intramuscular hemangioma, the surgeon also called it an AVM. The surgeon in Oregon told me that he was going to work very hard to get me to do nothing about this as there was nothing that would "really work" to solve my problem. He said we can remove it but it will just come back.
After reading many posts from other people, I kept coming across the name Wayne Yakes, MD. I decided to contact him after one of our local interventional radiologists wanted to do an angio on me to "take a look" at the lesion. One must know that there are 2 docs in our great state that would have looked at me. Neither of them had EVER seen this diagnosis in their careers. Again, I contacted Dr Yakes. I now have an appt in Colorado on July 31st and a "treatment" appt on August 1.
I want to extend a big thanks to all those who have emailed me words of encouragement about my daughter and what I have been through. We are approaching 6 months since she died and I have decided that I am going to continue on. She is my hero because dealing with her short illness and death gave me the strength to know that I have the right to see any doctor I want until I get one that can help. I pray that I have found that doctor.
Update: 22 July 2006
Hi everyone. I wanted to extend a big thanks to all that have sent me emails about my daughter, Cheslsea and myself. I am excited and a bit nervous as my visit with Dr Yakes is a little over a week away. I am told that I will have a visit with him on July 31, then MRI and angio with ethanol embolization on Aug 1.
I am not counting on anything until I get down there. I have learned that lesson over the last year of my life changing ordeal. I will say that I have informed most all of my doctors up here in Anchorage that said there was nothing wrong with me what my diagnosis is and the treatment that may be done. I am planning on bringing back any records I can to give to them so they can educate themselves and peers about AVM's. They are all very receptive and interested.
I will update after I return, hopefully with a good outcome and good treatment plan. I believe I am due for that.
Update: 5 August 2006
I arrived at the Swedish Medical Center in Englewood, Colorado, on July 31st and met Dr Yakes and his staff. He spent much time answering my questions and even answered questions about Chelsea, my late daughter. It was a hard truth but they did tell me that the chances of Chelsea being successfully treated with over 20 Dural AV fistulas and not having complications would have been very slim. He even kept her scans to use as a teaching tool. We are all about someone else being assisted by what happened to us.
I was scheduled for a MRI, angio, and ethanol embolization on Aug 1st. I have to say the MRI was traumatic for me personally. I have many bad memories of my daughter that involved MRIs. The staff was WONDERFUL. I received sedation and they were so very nice. I then went for my angiogram and had my first treatment after that.
Dr Yakes tells me that I have a venous malformation only. There are not arteriol "feeders". From my understanding that is better. Also, since mine is located in hip muscle, treatment is a bit safer. He did go over ALL the risks with me I have to say that. What I really liked was he listened and did not seem rushed at all. Neither did any of his staff. He performed my angiogram through my right femoral artery which I found interesting. I was seen my hemotology for my clotting issues as well.
I awoke after the procedure with minimal pain. I just arrived home to Alaska tonight and am a bit bruised on the left side but other than that doing well. I also can lift my left leg and the pain is still there, but decreased and my range of motion is INCREASED. I did have to get Lovenox a blood thinner for two days after and will have to do that every time. I can now truly say that I know how my daughter Chelsea felt when I gave her Lovenox shots to her. They HURT!!! I gave them to myself though. I told myself that if my 8 year old could do it, so could I.
I am scheduled for my next procedure on September 5th. Dr Yakes is definately on our Christmas candy list this year!!!
Thanks for all the support and thanks to those who mentioned Dr Yakes.
Update: 10 August 2006
First, thanks for all of the uplifting emails and prayers for me and my late daughter. I just had to let you all know how much better I am doing even after one treatment. My hip range of motion has improved and I can lift my left left without help. I am still sore and my glut muscle is REALLY sore (I have two VM's one branches into my left gluteus muscle).
I have purchased my tickets for my September, October, November, and December appts. This site is truly a God send for me...such therapy. It is inspirational to see so many doing well. I have to add that when I sighed and commented to Dr Yakes that it is nice to be told it is "all in my head " referring to the horrible pain in my leg. He told me that many of his patients have been told that prior to arriving at his door.
God Bless this site for all of us to share!!
Update: 8 September 2006
I had my second embolization on September 5th by Dr Yakes. I received 30cc of ethanol, 10cc injected in three different places. I am told that my mobility should improve. My pain is decreased as well. Things are looking up.
Thanks for all of the support. I return to Englewood in October. I had all my questions answered and am getting better at giving myself my lovenox shots after. I figure if my daughter had to do it I have nothing to complain about!!
I face Chelsea's birthday on 9/8 so send good thoughts my way!!
Update: 8 October 2006
I wanted to update the family on my 3rd treatment done by Dr Yakes just last week. We traveled from Alaska for treatment on October 5th. It went well. I am on a first name basis with many at Swedish. As far as when I will be done remains a mystery. I am told that for Christmas I will be getting an MRI.
It went well, the biggest issue was some strange Japenese cartoon convention being held at our hotel!!! Interesting to say the least!! Over 1000 teenagers running around loose in a hotel. The costumes were borderline appropriate in some cases!!! We are staying at the Shereton next trip. My hip pain remains at a minimum. The only thing is that about 2 days before I go down (4 weeks post treatment) my hip will hurt and my quad will burn. Not sure what to make of that. I am staying positive and hoping for the best.
I hope everyone is doing well.
Update: 16 November 2006
I had treatment number 4 Nov 2nd. Other than Alaska Airlines losing my bags BOTH ways and having to run to our connection in Seattle everything went fine. Dr Yakes still won't say how much smaller (if at all) my vm is. He told me I get a MRI for Christmas!!!
I get to travel to Denver again on December 21 and return only one day after treatment!!! I am guessing it HAS to be smaller, I can move my hip. Last night I could exercise and do a LUNGE. Have not done that in YEARS.
I wanted to thank all of you that have sent such nice emails. This Holiday will be difficult as we don't have Chelsea. I will make it though, I have to. God Bless.
Update: 22 December 2006
Hi Everyone...I am not getting my Chirstmas present this year after all. I was supposed to travel into Denver on 12/21/06 for my MRI and 5th embolization on 12/22/06. I have had to cancel my flight and reschedule due to the snow storm. Coming from Alaska I am not used to snow shutting things down. I will report back in January. Happy Holidays to all. Let it snow.
Update: 9 January 2007
Hello to everyone...
I wanted to let eveyone know that we had a very good day on the anniversary of Chelsea's death. (1/6/07). We honored her at the columbarium with friends and prayer, then went to her favorite restaurant (Red Robin) and lastly off to paint some pottery. It was very strange at the pottery place because I ran into 3 people that knew my daughter including her last teacher, entirely by chance. I had dreaded the day but it was actually "ok". We cried but it was not as horrible as I had expected.
I had just returned 1/4/07 from my 5th embolization in Denver by Dr Yakes. My MRI showed the VM is smaller but because I needed 22 cc of ethanol I get to come back in February. I was a bit more sore this time...don't know if that had to do with the delay between treatements. With this treatment you have to "go with the flow." It snowed again the day after we left.
Many who have lost children on this site have sent me many uplifting emails and I wanted to express my thanks to all of you. My son Jesse is doing well other than pending sinus surgery on 1/26/07 due to a blockage in his left maxilarry sinus. More than likely scarring from a previous surgery.
I am enjoying the very cold and very snowy Alaskan winter...I wish all of you a good 2007. I think we are deserve it!!
Update: 26 February 2007
I wanted to update everyone on my journeys to Swedish in Colorado. I made trip number 6 on Feb 18th, 2007. This was just a quick trip for us... leaving Alaska 2/18/07 doing my treatment on 2/19/07 and then returning home 2/21/07. Things went "great" as I am always told. Dr Yakes used 22 cc of ethanol again this time. I was up and leaving the hospital within an our of getting back to ambulatory care. I have really learned to love a lot of the staff at Swedish. The nurses are just wonderful.
When I was leaving this time one of the nurses told me that one of the patients she had taken care of from out of state came to the hospital and had two treatments over two days. I asked her why I could not do that. She responded, "I have no idea.." I left for DIA (Denver Int Airport) thinking I had no idea how many more times I had to come back. My cell rings and it is Rhonda, Dr Yakes' PA. She tells me that Dr Yakes thinks if I can stay a bit longer next time he can treat me twice and FINISH ME UP. Of course, I know there are no guarantees but it is nice to think about. So we plan our return on 3/23/07 and are staying for a "double". Or as I like to joke with the nurses, "a double shot." When people ask me if I drink, I tell my hip does but just once a month.
A quick thanks again to all that have emailed me about my situation as well as my late daughter's story. It is bittersweet for me as my daughter's death opened up many doors for me and my son as to what to watch for with our own health. She is truly our angel. I feel blessed that my VM is in my hip which is one of the "better" places.
Update: 3 April 2007
I returned from my "double shot" of ethanol embolizatioin on March 30. The procedures took place March 26 and March 27 by Dr Yakes at Swedish Medical Center in Englewood, CO. We went into it thinking I was going to be done. Both procedures turned out well but Dr Yakes has to do one more because one of my compartments was near the femoral nerve. I was just fine with that.
Our time in Colorado was uneventfull. We were in Denver when the tornado hit the town of Holly. I am from Alaska and when I saw a tornado warning come across the tv I was nervous. . Even though it was on the other side of the state!!! Being from Alaska, the state of Colorado is SMALL. Earthquakes are more up my alley.
This trip brought to mind the meaning of health care and how we manage it. Because I was having two procedures back to back they wanted me to stay over night. At first I was fine with it but I did try to get out of it as I had done just fine with the previous 6 embolizations. Also, I came all the way from Alaska so it was not like I was going to skip out on the treatment. I have to say after sitting in the recovery room for 5 hours waiting on a bed next to a poor lady that had her knee replaced who was also waiting on a bed, I was discharged to my hotel. I did tell the PA I was fine with leaving and it was strange that they would admit someone that does not need pain meds, iv fluids, or monitoring. I asked what insurance would pay for that? Like I said health care at its best.
I love the team that is helping me but some of the "policies" need to be reveiwed. So now we are going to book our next trip for my last "shot" of ethanol and a MRI. So far my only issue is severe heart burn chest pain after this trip probably related to some meds I had to take to prevent swelling. I do have confirmation that I have a very happy heart.
I hope everyone is well and thanks for the nice emails.
Update: 28 May 2007
I just returned from Denver very early 5/26/07. I went to Swedish for what I hoped would be my last ethanol embolization. I had a MRI and then went in for my procedure. Dr Yakes injected 13cc of ethanol and had to poke me only twice. The first thing I asked the recovery nurse was what did Dr Yakes write for my discharge orders? She smiled and responded "MRI in 6 months". I was DONE!!!! At least for now anyway.
I am very foturnate that I do not have any arteriaol feeders, my lesion is a venous malformation. I was concerned because it was "lumpy" on the operative side. Dr Yakes looked at the "lumpiness" and comparted it to my MRI from Jan 2007 and it is scar tissue. YEAH.
So now for the good news to pass on to the family. We are awaiting travel word to fly to China to pick up our daughter, Lindsey. She is one and has a cleft lip and palate that will be repaired. This is something my late daughter wanted and we feel blessed that we are able to adopt a child. WE are truly lucky.
Thanks for the emails and I will keep you all updated.
Update: 17 September 2007
It has been a while since I have sent in an update to the site. We have endured the second birthday without our Chelsea. She would have been 10 on September 8th. Jesse, my 5 year old son has started kindergarten. We have great news for our family!!! We returned from China on July 19th with our daughter Lindsey. She has a cleft lip and palate that will be repaired in Portland at Shriners Hospital. Other than that she is doing great. She is happy and healthy and such a blessing to all of us. I know her big sister is smiling down on us.
I am supposed to get my follow up MRI for my left hip VM in November. I have been having minimal pain although it does flare up occasionally. I wanted other members of the group to know that I am reading the updates and narratives and pray for all of you.
Update 7 November 2008
As many of you know, my 8 year old daughter died January 6, 2006 after a massive stroke. Her story is posted. Since her death I had a venous malforation treated in my hip muscle by Dr Yakes of Colorado. We are all doing well. I wanted to let the family know that we have been since diagnosed with PTEN mutatation. The adult form is Cowdens Syndrome (I have that). The child form is BRRS (my son and late daughter has/had it). We learned all this after seeing genetics after my daughter's death.
The PTEN mutatation is linked to AVM's. There is literature in the medical communinty that support that data. Other risk factors are breast cancer, uterine cancer, thyroid cancer and benign growths. One common link that my kids had/have and I have is a big head. This disorder is not well known and I wanted to post about it in the hopes that it will educate some.
We also have clotting disorders that are not considered life threatening. My daughter had a blood clot in her brain called a sagital sinus venous thrombosis. Do we know of all this is related..no because there is not enough data now. But it is my hope that by telling my story others will be helped and doctors will learn.
Lastly, my daugther, Lindsey is now 2 and doing great. We have a blog that you are welcome to check out. www.lindseyli.blogspot.com
Discussion, comments, or questions: Kathy Tatakis
© Copyright 2006 Kathy Tatakis
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