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AVM Survivors Network

Young wife with 3 small children diagnosed with AVM located in spinal cord C2 vertebrae

My wife was diagnosed with an AVM in her C2 vertebrae. The AVM itself has not bled, but the AVM has veins feeding aneurisms in her brain cavity. One aneurism bled which took us to the hospital where a drain was put in within 12 hours. She was transferred to a hospital in Houston with a NICU department where they've done extensive diagnostic imagery through MRI and Angiogram. 2 weeks after her initial aneurism rupture, she had 2 more ruptures, the third resulting in craniotomy to relieve the pressure. The day after craniotomy they embolized 90% of feeding (2) veins to the AVM on Feb 2, 2016. Since then, she has been hospitalized where blood pressure is being kept low to prevent another rupture and allow time to heal. In order to treat the AVM, I've been told she will need stereotactic radiosurgery of which there are many types out on the market. I have been researching Gamma Knife, Cyber Knife, and Linac System, but it's really unclear to me which technology will provide her with the best chance at a full recovery. If anyone has any input as to the technology which is best for spinal AVM near C2, I would appreciate any feedback. My wife will need the radiation soon, and I want to make sure she receives the best chance.

I am so sorry your wife and your family is going through this-
You can click on doctors on the top of the page and contact one of the recommended doctors in Texas or even another state to get another opinion.
You want a specialist who has loads of experience.
My doctor is Dr Michael Marks at Stanford and I believe Stanford came up with Gamma Knife
His nurse Mary is a sweet heart. He is the founder and head of neuro radiology and people travel from around the world to see him
I would contact them to get a second opinion via phone and see if by sending the records he can do it
https://stanfordhealthcare.org/doctors/m/michael-marks.html

Also at UCSF is Dr Michael Lawton I recently saw his work on someone I met on here and he does great surgery as well.

Take a deep breath, take it day by day. Having a supportive husband is a blessing

you can also do a search to find other people who have had the same type and location of her avm

this site is support for the patient and the care giver and very supportive

Hugs
Angela

The Barrow Institute I believe gives free second opinions. They come highly recommended. https://www.barrowneuro.org/

Hi Hardrocker97,

Although I cannot offer you any advice as to which radiation might be better, I just wanted to say hang in there - My husband is going through similar emotions to you, and it seems for around the same amount of time. I was diagnosed on Jan 28th 2016 after being rushed to the NICU ward with a burst aneurysm only to discover I have a large Cerebral Posterior Fossa AVM - meaning the AVM is located in the cerebellum but is connected to the brain stem too. I am to start Stereotactic XRT treatment(which is slightly different I believe)very soon. We have 2 small children (6 and 7 months) and I am 27 years old so a lot of life to live yet. This site is amazing so please continue to use it, even if you just need to talk.
Wishing your wife and family find the answers you need and that your lives can get back on track very soon. Hang in there.
Tricki

Hardrocker,

I hope that all is going well with your wife (and family as it affects everyone).

Thank you for your earlier post on my post of our experience. As you saw, we have some similar experience regarding location--our blessing is that while lots of aneurisms in the neck discovered (and feeders now embolized), to date none have bled.

One of the earlier responders mentioned Barrow for a second opinion and I would highly recommend--it was $100 and you upload images & radiology reports to their site. They review and get back within about a week (i think our response was 2-3 days). I was very impressed with what they were able to identify and communicate in a very short space relative to diagnosis and treatment. We're east coast so the logistics, given numerous procedures / visits, would have been difficult.

Also, not sure what facility in Houston. I would assume a good option would exist at the Texas Medical Center campus given all the various facilities located there. Your initial post mentioned a transfer to facility with NICU which doesn't seem would matter given your wife (maybe if it had been baby). As has been mentioned, you want surgeons and IR's that have seen and worked with lots of cases.

What we found in our search is that while AVM's are rare enough in their own right, spinal AVMs are even less common, and cervical spine only a very small percent of those (lumbar most common). Thus, even experts & facilities that had considerable experience with AVM's didn't have experience with AVM's of the cervical spine.

Thank you Angela for your replay and advice. This is all new to us and getting feedback regarding your experience with AVM and doctors helps.

Much appreciated,
Jeff

Thank you for your reply, sounds very familiar. We're taking it hour by hour as we never know what surprises are around the corner, but they're always seems to be surprise, positive or not so positive. I'm extremely pleased with my wife's neurosurgeon/doctor who is looking after all of her care while she is in the Neurology ICU. His name is Gavin Britz at Methodist hospital in Houston. He specializes in AVM's and brain stem surgery if interested in second opinion. He has discussed my wife's case with Dr. Spetzler and others around the country to gain consensus on treatment. This week, through Angiogram, they performed embolization before and after the aneurism as it was starting to grow again. She will be starting Stereotactic treatment as well in coming weeks. Thank you again for sharing, it's difficult, but not impossible. I've gained new respect for my wife's strength.

I received a second opinion from them, and they charge $100. Still very much worth it for me…

hello Jeff
So glad you have a specialist for AVMs and he consulted with Dr Spetzler
I recently read this article and I am wondering if it can help your wife when she starts her treatment Stereotactic treatment - maybe show this to her doctors-doesn't seem like any harm to have her drink or smell something harmless to see if later drinking or smelling that same thing will invoke healing-
Here is the article

http://theweek.com/articles/610145/teach-body-heal-without-medicine

I am so sorry to hear that her avm is growing again- she has been through so much

My journey started with a massive stroke in 2011 due to 5 blood clots in my brain. I was in a coma and once they figured out I had a rare stroke gave me blood thinners. I was in loads of pain, lost my left side movement and could not speak even though I could see the words.
Anyway from all the pressure from the blood clots I blew out my left transverse vein and I guess the body tried fixing it and grew an avm a few months later, about 9 months later I told my stroke dr I was hearing a whooshing and passing out...he looked concerned and said I doubt you have another rare thing but you could have a rare type of aneurysm called DAVF-
Then I found this site - went for the MRIs - then I knew by then that if Dr Marks was in the room I had it- and of course he was in the office with my stroke doctor. They said well you have it and its complex and retrograde-
Super - Had my 1st angio/embolism 2 months later and was still recovering from the stroke- had another stroke during the embolism-

I was able to regain my abilities (still a bit weak on the left side) but at least I can walk and swim and my brain damage healed faster than they thought. Even by some miracle my avm by the second angio has sealed itself. Also they had said that my thalamus was dead but last MRI its healed. They believe that I will the pain in my leg and head forever but considering my veggie days I can deal with it.

Now I still have daily brain pain but most days now I can function - I am on meds to sleep not sure if your wife will have issues but dont be shocked if she cant sleep but make sure she tells the drs cause its so important to sleep-

I still do PT to work on my weak side

I recall when I was brought home and still what I call my veggie state I was thinking what a burden I was going to be to my husband and how I might be in a wheel chair for the rest of my life. I did what the drs told me and had a goal once I could wobble and would try to get the mail every day.
I never gave up, I would also play gamesforthebrain.com and do word puzzles and math problems.
My husband gave me turmeric and coconut oil - our brains need fat to heal.
At first my recovery was slow the 1sr 2 months but once he started me on the turmeric and coconut oil I really started to heal.

Please keep us updated-
know we are all thinking positive thoughts for you and your wife

Hugs
Angela

Angela - Sincerely, thank you so much for sharing your story, experience and advice. I'm taking all to heart and will refer to your information often as my wife and I travel down this road. You are extremely strong to have gone through your experience and be able to share. My wife is having VP shunt surgery on Wednesday. She gets stronger daily. Today she was able to raise and move her left arm. She has movement in fingers and toes so doctors are saying those are great signs for full motor recovery.

Thanks,
Jeff

Jeff
That is wonderful news! Please tell her we are pulling for her!
If you guys are ever in San Francisco please let me know-

if you can get her some lavender spray it relaxes and smells good and when you are stuck in bed its nice to have something nice to smell

Hugs
Angela

Hi Angela, I hope you are well. A lot of good things have happened since I last sent a note. My wife received radiation in early May, 2 rounds of maximum dosage for her AVM. She spent 8 weeks at inpatient rehab where she entered only moving her left thumb, and exited able to feed herself and use legs to walk herself in wheel chair. Getting stronger every day, still has weakness on right side and her AVM is on the right side of her spinal cord at C2. She has been dizzy for the last three weeks at all times of the day. Did you experience this and do you have any thoughts? Her mental function is excellent, she's physically getting stronger each day, but the dizziness and her eye sight are slowing her down. Her eye sight is going to take a while to resolve.

God Bless,
Jeff

Jeff Thank you for letting me know how your wife is doing so glad that she is doing better-
I do recall being dizzy and my eyesight not being that great and its still not during the am

A few things vit C and coconut oil help with detox of the radiation and turmeric helps the brain heal- turmeric is a blood thinner and check with her doctor about all supplements-

also sounds like she may have vertigo which is terrible. Call her doctor and see if they can prescribe something to see if she feels better. If I recall the meds make you sleepy which is often what the body needs when you have vertigo-

Which side was her crainatomy? Was it on the right side as well?

also you might want to get her this special pillow I got mine from bed bath and beyond and often you can find a 20% coupon -
http://www.bedbathandbeyond.com/store/product/leachco-reg-back-n-39-belly-chic-pregnancy-support-and-feeding-pillow-in-taupe-rings/1017322095?Keyword=body+pillow

Its supportive and you can put it in different positions and she may need to lay on one side to help with dizziness - she should be able to feel what side makes it worse and which side makes it better

They sell the same type of pillow on Amazon as well.

It might be good to take her to her reg dr to make sure she doesnt have an ear infection and to see if she has vertigo.

You dont by chance have a cat? Their purring can help the body heal. They seem to know it too.

I get this water from Trader Joes its sparkling water Gerolsteiner and has lots of minerals that are body needs as well. This will also help her detox

Try rubbing coconut oil on her body esp her weak parts

We also switched to only using Celtic Sea salt which you can also order from Amazon its much better than the reg salt and has more minerals that we are missing in our foods.

Reg salt has lots of Iodine which for some people is not good like myself.

Sometimes dizziness and even vertigo can be caused by too much reg salt.

I dont have this problem anymore since I switched to the celtic sea salt

Hope this helps her
Angela