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

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  #11  
Unread 04-29-2005, 08:08 PM
AVM, Tumor, Waiting to Know?

((Blessings))

Many many s coming your way. I do so hope you get some closure on this soon. Just knowing what's wrong with you will make such a huge difference I know. Be thinking of you.
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  #12  
Unread 04-30-2005, 09:22 PM
AVM, Tumor, Waiting to Know?

Blessings,

I pray for your recovery and good outcome with the vascular surgeon.

Once I saw a vasuclar surgeon for symptoms after I shattered my wrist. Everytime I coughed or sneezed I felt blood rushing down my arm. It wasn't painful, just puzzling. My PCP referred me to the vascular surgeon when neither he nor my hand/wrist specialist could explain it. Neither could the vascular surgeon!

My physical therapist suggested I look up ValSalva on the internet. I did and answered my own question even though several prominent, Harvard educated surgeons, did not. Normally the autonomic (sp?) nervous system will restrict blood vessels in anticipation (fractions of a second) of a cough or sneeze. In my case nerve damage prevented this from happening. Did speak with one other woman who had wrist damage after a car accident, and she had the same symptoms. She was a basket maker and could not make any more baskets until her dexterity returned.

What I am trying to say, poorly, is that it might be best to prime your vascular surgeon to be responsive to your case. A call to his office asking if he has ever treated a patient with AVM might promote professional responsibility to research or call a colleague.

I strongly believe in being one's own best advocate. Did start a post on "events which have shaped our outlook of the medical world" but that was removed from post-op as not directly related to hysterectomy.

I will continue to pray for you and wish you and your family the best support possible.

Susan
  #13  
Unread 05-01-2005, 02:07 PM
Thanks

Thank you for your kind and insightful replies.

I am fortunate that the Vascular Surgeon I am to see this Wednesday is highly regarded and is my best chance for diagnosis and/or treatment of AVM's. As much as I am apprehensive about the possibility, I am grateful that I am one step closer now to understanding the complications that I have endured for many years. I actually came upon the diagnosis myself after requesting all my hospital, surgical and diagnostic records. In the corner of one of the pages were the letters "AVM". They were scribed by a very compassionate and resourceful ER Physician. His wife had struggled with something similar, though did not end up having AVM's. He felt very much for my husband and I and asked that further tests (MRI and CT)be done. Unfortunately that never happened, and it was dismissed by the Gyn on-call. Still, from what he said and what he wrote we had enough information to go on to research further. When I read about AVM's I was overwhelmed as it was like reading my own story. The history, symptoms, and clinical picture were a "perfect" match. I took all my records, compiled a summary, and backed it all up with documenation of pathology and imaging reports and approached my surgeon. Instead of facing resistence as we had feared, she entirely supported us and referred me to the Vascular Surgeon. We now have a chance to learn answers to questions that have alluded us for so long. We are praying with hopeful hearts and holding on with faith that this new specialist will help us. Although it has been an extremely difficult road, I am forever grateful for what I have learned and the way it has changed my life. Having an AVM is frightening and yet validating for me all at the same time. It is amazing to be able to mix both emotions in one. Three more sleeps...

Blessings
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  #14  
Unread 05-04-2005, 09:40 AM
Vascular Surgeon

Today is my appointment with the Vascular Surgeon. I am understandably feeling a mix of apprehension and hope. I am so grateful that this day is finally here. It has been a long journey, but there is a bright spot in knowing that we may be one step closer to healing after today. I am kind of scared about what it may mean to have the diagnosis and what I may face, but I rest in the knowledge that our prayers are heard and I won't go through it alone.

With faith in my heart


Blessings
  #15  
Unread 05-21-2005, 01:31 PM
AVM, Tumor, Waiting to Know?

I have a history of congenital AVMs of the pelvic region. I had one on my left labia at age 3; two on my bladder at age 29; and after my hyster (03/30/2005) they found a tangle/nest of veins into my uterus, and an AVM in the cervix.

I have an appointment at Harvard Medical School next week - my local radiologist suggest "stripping" the internal veins - which sounds like what you had done.

What is your current situation? Any information to share?

ShaSha2
  #16  
Unread 05-23-2005, 04:41 AM
AVM, Tumor, Waiting to Know?

Has anyone heard how blessings is going? Haven't heard from her for awhile.....Blessings I am still praying for you for complete healing. Hugs from Beth
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