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AVM, Tumor, Waiting to Know? AVM, Tumor, Waiting to Know?

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Unread 04-19-2005, 11:54 PM
AVM, Tumor, Waiting to Know?

I had an ultrasound done today and though I am not supposed to know, they told me and showed me the results. I was treated with great compassion by the Technician and the Radiologist which was a blessing. The Technician even offered a hug as I prepared to go home.

The ultrasound shows yes, there are cysts on both ovaries (not huge but present) despite taking the Provera. They are as active as ever. There may well have been a hematoma the Radiologist said but if that was the case it was infected or absessed or something. There is free fluid and they can see it draining through the vaginal vault. One of the masses, originally believed to be the hematoma seems smaller which is promising and now sits on the left side of the vault. All of this though now seems small in comparison to the findings of today.

The ultrasound revealed marked changes between today's scan and two weeks ago. There are areas in my pelvic cavity that are what are termed "empty cavities" where there should be no findings. Instead there are areas that when they put colour to the images it shows blood flow. Pulsating blood flow where there should be nothing at all.

For many months with documentation from my hospitalization and surgeries, and repeat complications I felt in my heart something was wrong. I truly believed that there were answers to this puzzling journey in my history and they were being overlooked, because they simply were not being looked at at all. Every visit was about the paper or report before my doctor, and there was little if ever time taken to look back. As a family we have kept looking forward and held on to hope. But as distinct patterns emerged, and I faced more and more, we have come to a point where we feel the need for answers.

Not for a moment do I want to know why because I am looking to find fault or assign blame. That is not what this is about, and that is not how I feel at all. I want to know because I need to know, so that I can understand, that we can work towards resolve and to find peace in that. I know my surgeon really cares and I empathize with the discouragement that she feels right now because she doesn't feel she has helped me. But, I appreciate what she has done and now as I look to my appointment upcoming Thursday I am going, asking her to help me navigate this new chapter in my journey. We have two beautiful little blessings at home, and we need her now more than ever.

The Radiologist said that it is possible I have an AVM (arterial venous malformation) of the pelvis. It is extremely rare. All my symptoms, and history fit and now these ultrasound findings bring hightened awareness. They really don't know what I have but they know that what they are seeing is very wrong and abnormal. The Radiologist said we must insist on an MRI being done as soon as possible.

For many months I have suspected an AVM, and a very compassionate ER Doctor said the same. He wanted a CT and MRI done for me back in November but the Gyn at that time dismissed it. I have prepared a summary of my medical/surgical history that illustrates a distinct pattern of complex masses and related complications. I will offer it to her for review because I truly believe it is well worth taking a "new" look at.

Knowing what I know now is a mixed blessing because it is all well documented before us, almost like a gift to give my surgeon as to say here take this and put the puzzle together. I want that more than anything because she really is hurting about what has happened to me, and because I feel she really can make a difference. For us as a family the opportunity to have resolve is beyond words. And for a patient whom may too one day travel this difficult road, I want my doctor to know what the diagnosis is so that she can help someone else through it.

We continue to pray that my surgeon will be open and attentive on Thursday when I return for follow up. That the truth and the reality of these findings will be revealed and not overwhelming for her or for us. But that we can work with my doctor to find the answers that we have sought for so long, and the grace to accept what that means for me and our family.

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Unread 04-20-2005, 09:40 PM
AVM, Tumor, Waiting to Know?

((((Blessings))))) I'm so sorry that the findings from today's Ultrasound were so unsettling. I don't have any answers for you, but did want to send great, big, gentle s your way. Hopefully this will shed the you need to take care of this. Please do keep us posted.
Unread 04-20-2005, 10:55 PM
Thank You!

Thank you for your thoughtful reply.

As tomorrow's appointment moves ever closer we as a family wait with hope and some apprehension. I am grateful that there are pieces of the puzzle that now shed light on answers we have sought for so long. I really do pray that my surgeon is open and attentive and that she will be given wisdom to know what steps to take. It has been a long journey for everyone, and I know that I would feel such a sense of peace in understanding what it is that I am battling. Whether it is an AVM or something else it always seems that in knowing there is a direction and focus. I also pray that any further testing or consults can be done in a timely manner, especially the MRI. My husband will be with me tomorrow which is a blessing. I feel I have to be so strong and yet sometimes I want to allow the tears to come. My husband can be my voice if mine gets lost and I am grateful for that.

For tonight I just hold our little ones close and know that the things on my heart don't go unnoticed and keep having faith even in the midst of uncertainty.

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Unread 04-23-2005, 05:32 PM
AVM, Tumor, Waiting to Know?

Oh Blessings,
I have prayed for you often since this journey began and I will continue to pray for a happy, healthy and positive end to this long hard path you have been on.

I am so glad that I quit looking at the negative side of my hyst related problems and made myself get back out into the world. When I see your strength and determination I feel like the one who is BLESSED!

Peace be with you and continue to give you strength
Unread 04-25-2005, 02:39 PM
Sharing My Heart

A child born with congenital heart disease I underwent open heart surgery at age 5. My current journey began in 2000 with Pathology confirmed Endometriosis. What followed were repeat Laparoscopies, a Presacral Neurectomy, an array of hormonal meds and Infertility.

Our prayers were answered and we were blessed thereafter by two beautiful children. After delivery I had a PP Hemorrhage x 2, D&C's for retained products and never stopped bleeding for any significant length of time. It was almost like a tap that someone turned on and never remembered to turn off. We asked many questions but found few answers.

The pathology on my second D&C came back that it was not retained products and the diagnosis was other than what we had expected. Yet again, there was little explanation. We found our way back to a very skilled and caring Specialist. We found comfort in the honesty and focus of this Specialist and dared to hope again.

Facing my Hysterectomy was very difficult. But I knew in my heart that I wanted a better quality of life for my family. Under the direction of my compassionate and skilled surgeon, I had my Hysterectomy LAVH one year ago. Unfortunately it was followed by a post-op vault hematoma, leading to severe bleeding and pain. A few months later a suspected ureteral injury and fistula led me back to the operating room two more times.

Repeat infections led to a prolonged regime of antibiotics which caused a near fatal intestinal toxin and hospitalization before Christmas 2004. A laparoscopy for adhesions of vaginal vault and ovary and an embolization of ovarian veins came in November of that same yaer. It was believed that I had pelvic congestion but it looks now like it was not. A severe reaction requiring hospitalization after the insertion of steel coils into pelvic veins left everyone baffled.

Last month I underwent another laparoscopy with cautery of pelvic vessels (nests of varicosities). It was a highly risky procedure, a first for my surgeon. It was a wonderful first week home and we again dared to hope. But, post-op bleeding, and a suspected hematoma led me back to hospital. Repeat ultrasound revealed a complex mass with peripheral blood flow. For many months, even years, I have looked for answers that have alluded us. With the love of our family as my guide I never gave up my search.

Something just didn't seem right, something seemed to be missing. I began educating myself and reviewing with great detail my history. Then last week someone listened, my surgeon heard. With a mix of silent compassion and fierce knowledge my doctor can be a force to be reckon with, and I feared her response. But there was no resistance, no dispute, but instead reflection and validation. Instead we were met by, Yes, something could have very well been missed. Yes, something is evidently abnormal within your pelvis. It was so affirming and yet so frightening at the same time.

It is highly probable that the vessels that were treated only weeks ago have formed another "nest" and the initial positive result now void. I am awaiting consult with Vascular Surgeon and MRI, possible Angiogram. My surgeon will direct my care and is hoping to speak to the Vascular Surgeon today. They suspect a very rare congenital condition in the female pelvis called an AVM (arteriovenous malformation) or other abnormal vascular condition. For the first time I feel like I can let go, and I can cry and I can feel. Because for so long I felt like I had to hold everything inside to be strong, to fight, to not give up finding answers. Now I feel a flood of emotions, refreshing and fierce all at the same time. I pray that my MRI and consult will be soon, and with faith hold on to hope. There is nothing that I wish more in my heart than to be healthy again. To be a Mom, a Wife, A Friend...to embrace the possibilities of life.
Thank you for allowing me to share my heart.
Unread 04-25-2005, 02:57 PM
AVM, Tumor, Waiting to Know?

God Bless you...

You will be in my prayers...

Many, many,many HUGS
Unread 04-25-2005, 04:14 PM
Heartfelt thanks.

Thank you for what you have shared.

We are lifting our hearts and praying that I will hear from my doctor very soon about the Vascular Surgeon appointment and an MRI.

I was to call the office today and I did, but I have yet to hear a reply. Just being able to talk with my doctor again would be such a blessing right now.

I do feel a certain weariness about the journey and yet I feel I can not let go of the hope.

Unread 04-25-2005, 04:17 PM
AVM, Tumor, Waiting to Know?


All I can say is G-d bless you, and I wish only the best for you. I truly admire your strength and determination in getting through one crisis after another.

G-d obviously has a purpose for you here on earth. It may be partly to inspire the rest of us, not to give up hope, and to keep fighting to be heard. We know our own bodies better than any doctor, and we all could take a lesson from you. It is up to us to convince our docs that something really is not right.

sending you big s and lots of

Unread 04-27-2005, 07:15 AM
AVM, Tumor, Waiting to Know?

Blessings, You are an inspiration to me. My Hyst complacations seem so minor to me now that I have read this. I will be praying for you and just let God be your strength through it all. He will give you perfect peace. Please keep us updated on your journey.
Unread 04-29-2005, 03:15 PM

Ultrasound continues to show a large complex mass that no one knows quite what it is or what to do about. What was thought to be a Hematoma no longer appears to be. I continued to have bleeding for five weeks post-op from my surgery to cauterize abnormal vessels in my pelvis. My doctor thinks that despite a positive initial surgical picture that the nests of tortuous veins and varicosities have all come back. It has only been just over a month. An Arterial Venous Malformation (extremely rare) pelvic congenital condition has been suggested and regarded as a high possibility for diagnosis by several doctors and Radiologists. I am now awaiting consult with a Vascular Surgeon. I have just undergone a preliminary test to rule out DVT and during this "routine" exam it was found that the femoral artery is not visualized once it joins the pelvis and becomes the iliac. They do not know if it is a blockage or if this is yet another sign of an AVM. We have waited and prayed for many years for a diagnosis and that our questions that weighed so heavy on our hearts would be answered. I feel that I am close to that now and I am grateful for that. Of course I am naturally scared too about what this may all mean, and having a major vascular abnormality in my pelvis that is so rare. Still we hold on to hope and have faith. Five more sleeps before the Vascular Surgeon appointment.


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