Untreated Spinal Davf

Types of Avm's Spinal AVM
1

Hello, I am new to the site and have a question. Does anyone have experience of an untreated Spinal Dural AV Fistula? My husband was diagnosed in October 2013 with his condition and after two spinal angiograms the first in october the second in December the outcome was decided at the Neuroradiology meeting, the group consensus being high risk of anterior spinal artery injury and subsequent paralysis.
consequently there is no plan for any further intervention aside from physical therapy to maintain the muscle tone as best we can.

I am at a loss as to best care for my husband. I do notice it is getting more and more difficult for him to move around. He currently manages to walk short distances using crutches for balance.

Aside from this we also had to move as my husband could no longer negotiate the stairs in our previous property, we have had a very challenging time in the last nine months.....would truly appreciate any help anyone has to offer.

2

Hi, im the bloke, Michael Obrien that you emailed 2 days ago, My email is not working properly, its not receiving for some reason, Still doing it now. My daughter is not getting my emails either. So you may have not got the email I sent you yesterday,
Anyway, if you wish to give give me a ring on 0497604420 after pm 6.00 PM. Im only up the road from you. I would be happy to talk to you about my situation and what ive learnt about it. I would be more than happy to talk to your husband in person perhaps at a coffee shop near your area or mine. I know how frustrating and life changing a spinal fistula is. With me,they put a glue embolisation in fistula first that didnt work then surgical seperation,
I as a joke told the surgeon that I blame health services cutbacks, and accused them of importing cheap Chinese super glue. I was joking and the surgeon didnt see the funny side whilst the nurse started laughing only to get dirty looks of the surgeon.

Cheers Mick

3

Hello Shezza,

I am so sorry for this happens to your husband. Pardon my english, come from germany.
The situation of your husband was like mine. I had 2 embolisations. Oct 2012 and Dec 2012. But the AVF grows again. Then the first open spinal surgery laminectomy. Was in Dec 2012. Then happy all over had a control angio March 2013. And the beast was back again. And exactly like your husband: The neuroradiology and surgery took some weeks to talk and make a masterplan. Cause the position was at the anterior spinal artery. Addiotionally I had pulmonary embolism and deep vein thrombosis (through the paraplegic in left leg). So the hospital told me: Its to dangerous. First cause the anterior artery. Then I was not fit cause of the DVT and PE. But then one neurosurgeon in this hospital invited me for a talk. April 2013. And he told me: He is now the "as..hole". Cause noone wants to make the surgery. But he want to try it. If not, bad things could happen to me. He told me, I have to try this. And told me bout the risks (PE, anterior) and so on. And then 3. Juny 2013 I went to hospital. They took me away from bloodthinner (DVT). And 10 juny in the morning, after a horrible night (thinking my wife and daughters breaking my heart) I was brought to the surgery. About six hours it take. I woke up in the "intensivestation". With robots on my legs, that made pressure pneumomatic for the thrombosis. And the neurosurgeon was sitting beside of me. And he said: Michael, I have the beast eliminated. I made the masterplan: T10 - T12 he opened and killed it from both sides.

So I cannot really help. I only can tell you that I (we my family sure) had the same toughts. But at the end we decided: The beast must be killed. And so after 2 embolisations and 2 surgeries its obliterated. At the end: The embolisations caused more damage in my spinal then the surgeries.

You can contact me every time. 1000 regards and best wishes for your husband.

Michael

4

Shezza, be sure to post of the Aussie group as well, to get some doctor recommendations. You should get a few opinions before accepting that there are no treatment options.

5

Hi Michael, many thanks for your reply.....we are still struggling to come to terms with the condition. My thoughts are to seek a second opinion, however my husband is not of the same opinion. He says he would prefer not to have any surgical intervention So we are just taking one day at a time....many many thanks for your support though. We do appreciate that you took the time to share your journey with us.

regards
Shezza

6

Hi dancermom,
Yes we have joined the Aussie group as well, thanks for the advice, I am all for seeking a second third or whatever it takes opinion on my husbands condition.
It is good to know that we are not on our own.

regards
Shezza

7

Sheeza, no problem, we all here make the journey together, you are not alone. And sure, the opinion of your husband is the most important. It can change, sure, but depends on good advices of second/third....... doctors like dancermom said.

Best wishes !
Michael

8

Shezza
I understand some of your concerns.

My own story is similar in that I was diagnosed August 2013 with 3 Spinal AVM's from L1 to L5 inside the dura of the cord. I'm 49 years old.

I had similar balance, fatigue and control issues to deal with that were unexplained by my GP.
Anyway - long story short, I was refered to Neurologists at Royal London Hospital, NHS, John Wadley's team, where the lower AVM at L5 was embolised successfully 7 Jan 2014 by Neuro radiologists - Ken Wong and Lavandasri Makalanda.

The other 2 AVM's still gave the symptoms I had previously and were deemed 'inoperable' surgically by the team after world wide consultation. I still walk, but with a stick.

I was advised that - similar to your husband - the locations deemed to risky for surgery or embolisation without risk of further catastrophic decline in my condition.
The only option was to have a referal to see a consultant oncologist and seek Cyber knife radiation therapy. This treatment was however denied by NHS as non critical as the AVM's were not in the brain (?) so I sought to get it done privately.

I am happy to report that due to me having health insurance the treatment is funded and only this week, I've had another MRI, CT and spinal angiogram to map the plumbing in my spine. I'm really happy to report that june 12 - next thursday I'm due to get both sites of my AVM's irradiated, merely 2 hours of treatment! Then I go home and wait...

Look up Nick Plowman, consultant oncologist, at www.Cyberknifecentrelondon.co.uk who might be able to help you. He has extensive experience in brain AVM and far fewer with spinal AVM's. But for me, the only option in the UK for me.
I see you're in Australia, but maybe Dr Plowman has contacts around the world... or you might come here !!

I hope this gives some hope - or at least questions to ask of your own health care system in Aus.
Wishing you and your Hubby the best!

9

Hi Shezza. My husband has the same thing. He has also been told that it was inoperable. He is slowly loosing the use of his legs and can now walk only with the assistance of 2 walking sticks or crutches. If he falls on the floor he can no longer get himself up. We have gone from doctor to doctor and have found a surgeon in Sydney by the name of De, Assaad at the Macquarie university hospital. The risks from surgery are high but we have decided to take our chances. I would live to chat more with you so please email me if you would like to discuss this more, I understand fully the difficulties in caring for your husband so if you need an eat or at least some insight on how we get through I’m here to help.

10

Thank you so much for your reply,
It seems that they could not even get the microcatheter into place after numerous attempts. We are not sure where to go from here, although I have received information in regards to a Surgeon in Sydney which we may pursue.
Our health care system here I feel is letting us down, or perhaps we are in the too hard basket, but we will continue to research.
It is good to know that we are not on our own, and there are caring people out there.

I do wish you well with your treatment on the 12th and hope all goes well for you.

regards
Shezza

11

Hi,
I had surgery in March 2013 for a spinal dural arteriovenous fistula at T9. They tried emoblization but it didn't work so I had full surgery and the fistula was successfully obliterated. The fistula had caused a nasty swelling of my spinal cord, which damaged the cord. The day I was hospitalized I went into spinal shock and much beow the waist completely broke down. Prior to this I had some increasing problems with my legs for a few weeks and also bladder issues, but some smaller nerve related issues for some 6 months earlier. All symptoms was minor in the beginning but my condition quickly became critical and it all escalated when my spinal cord couldn't handle the swelling any longer. While they explained the risks with the surgery, it was a no-brainer for me since both legs was quickly paralyzed and this would basically be my only hope to walk again. It was explained to me, that an fistual/AVM can be there without causing much trouble at all sometimes, but it is also a risk like in my case that it causes a cord compression or swelling, then there's possiblites of permanent damage on the spinal cord. Today I walk pretty good but there's some stuff that probably will never be the same again (bladder and bowel issues, sexual dysfunction, drop foot etc). Thankfully basically no nerve pain at all! If my fistula had been removed just a few months earlier, or maybe even weeks, my life would probably have been more "normal" now, but I'm still thankfull for the recovery I've made!

12

Hi, M. Anderson and Shezza:

My heart goes out to you. I will tell you of my own experience.

I had an AVM--a spinal dural fistula--diagnosed in 2007 at the T6 level. I had been experiencing symptoms for years, and it required three MRIs to discover the AVM. After conferencing with my neurologist and radiologist, we agreed to try to embolize the AVM. This procedure required 7 hours and was only partly successful. The next day, I could walk and most of my symptoms had abated. Unfortunately, the Beast grew back, and the symptoms returned, and three months later I suddenly lost the ability to withstand gravity, and could not get to my feet or remain erect.

From my reading--admittedly limited--it is now procedure to go directly to surgery in situations such as mine, rather than first attempting embolization. But I do not rethink my decision. It was a gamble to cure the AVM without surgery, and I do not regret making the effort. Karma.

The surgeon cut out the AVM the day after I lost the ability to stand upright. But by then it was too late for me.

The good news is that I regained most major bodily functions, which is a miracle. Apparently, few AVM victims regain the ability to walk once they have lost it. I, however, can stand upright and walk. Although I have bladder and bowel issues, as M. Andersson mentioned, I am not incontinent. Another miracle. Nor, thank God, have I experienced sexual dysfunction. It seems that the venus hypertension missed these nerves.

Unfortunately, unlike M. Andersson, I have experienced constant pain every waking second since 2008. The pain varies between 2 and 6 on a scale of 10, and runs from my waist to my toes--burning, tingling, numbness, aches, hot and cold -- you name it. My nerves have been damaged; after six years, it is unlikely that they will repair themselves any further.

I wish, Shezza, that I had good advice for you but I do not. I can only share my story. Every AVM is the same and every AVM is different. Despite my pain I consider myself lucky. I pray your husband will find a solution that works for him.

13

Hello David,

yes that told me the neurosurgeon too. Surgery is the best way for permanent killing the beast. After some embolizations the two surgeries helped.

Had you surgery too after the embolization?

Best wishes
Michael

14

Hi, Michael:

Yes, I had surgery after the embolization failed. The surgeon noted that he found the embolized vein in my spine. However, the AVM had a mind of its own, and made another bad connection, resulting in my loss of "anti-gravity" and inability to stand upright.

I do not know what the current medical consensus is now regarding embolization vs. surgery. From my own experience, given comparable circumstances, I recommend surgery, if at all possible.

Best,

David

15

Hi David,

yes here too: The surgeon told me, the embolization was good for him, cause he saw the embo in the spine too. So he knew where to "work".

Perhaps its the combination of embo / surgery.

Best wishes,
Michael