Hi Lisa,
My daughter has an AVM from C1-C4. The docs have said it is inoperable. She has had a few bleeds over the last few years, and lots of pain. How have you managed yours? Any words of advice you can give us?
Hi Kim,
My daughter has an AVM from C1-C4 that they have said is inoperable. How have you managed? Any advice you can give us? She had a bleed almost a year ago, and then has done really well, but is now is experiencing alot of pain symptoms. Are you in pain alot?
Hi Bcarter,
I am sorry your daughter has this to contend with. I would be more than willing to speak with you about my experiences and my take on things. It would take an awful long time to type it all out. Hind sight, it seems, is 20/20 as we go through life and experience stuff.
The short answer: Yes, I have chronic pain and have had multiple bleeds throughout the years, with varying effects. I am now 53 and I have a couple of regrets that I am willing to share with you for your consideration in your daughterās journey.
God bless,
Kim Palmer
Oh gosh Kim thank you so much for getting back to me. I canāt tell you how much that means to me. I will plan on calling you later today if that is ok. We are in the hospital right now, getting her through this crisis. Hopefully I can take a break later while her boyfriend is here and chat with you.
Bless you.
Beth
Sure thing, Iāll be here. What is your area code so Iāll know itās you?
We are in Denver so 303 area code. Thanks again!!
Hi Rachel! Iām a 55 year old educator from Singapore. Operated for three mid spine AVMs T4-7 region. Undergoing intensive physiotherapy to walk again and fighting with buttock pain and sometimes constipations plus catheter in my dick too! Keep fighting never give up is my motto! Potest Qui Vult He can who Wills!
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Guys,I just want to say this is quite an old conversation, so please expect some of the correspondents to have moved on, changed email addresses, etc.
Find other spinal conversations in the category under āTypes of AVMā on the home page.
Best wishes all
Richard
Hi EdDruid1065,
You are not alone. I had a laminectomy at T10 in October 2015. I had several Physiotherapy sessions since then. I am getting better, but it is a slow recovery.
In February 2020 I got an ITB pump implanted to control my spasticity. Since then my leg muscles got stronger.
Keep the spirit and stay strong.
Cheers,
Franz
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TQ Bro
Hi, Iāve recently been operated on for an AVF in my spinal cord around the neck area (dont know the scientific words for this). My condition happened suddenly (I never suspected that I have a more serious problem than a regular back pain or constipation until I was not able to pee and walk, which brought me to the ER).
First, the neurospecialists tried to treat my condition with steroids while at the hospital, but my condition worsened and they had to perform microsurgery with endovascular technique.
The surgery was successful.
Itās been almost 4 weeks and I can walk with a cane that I use for balance (no weight on it).
My big problems were the inability to empty my bladder and the severe constipation due to my condition. My back was on āfireā because of the constipation, cause I could feel the weight of my intestines on my bladder that was full and couldnāt work properly. I had to use in and out catheterization and find an appropriate laxative that wonāt make me suffer and strain. After 3,5 weeks of agony, I finally (crossing my fingers) foun d a laxative that suits me and I just started to have some relief and make some progress re urinary track.
However. I had a hard time digesting food : my belly gets bigger whatever I eat, although I avoid gluten, dairy and starch food.
I have pain in the neck area whenever I do too much; I have to chose what I want to focus on, like walking or going to a medical appointment (My son drives me around), cook (My son helps me) or tidy my room (no heavy cleaning involved).
Even if I can walk, my legs feel weirdā¦ I can tell that some connexions are still being processed, my skin is hypersensitive ( it was already sensitive before this) and light touch or droplets hurt; I feel gravity much more than before too.
Iām overwhelmed by all this because it happened so quickly and suddenly.
Iām still in shock.