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chudleigh
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   Posted 9/5/2008 5:33 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
I was diagnosed with a spinal avm last year and had Cyberknife treatment in November 2007. I recently had a check up MRI scan that showed that my AVM was 'less conspicuous. There is focal expansion of the spinal cord at this level and there is now diffuse signal change extending from T7-T9. Flow voids in the dorsal sub-arachnoid space are again shown.'. I am still awaiting a formal explanation of this report which is slow coming. My main issue is how dangerous it will be for me to get pregnant. My avm was measured as under 1cm, now it is hopefully less. I have read conflicting accounts of small amvs being more prone to bleeding. I have also heard conflicting accounts of the safety of getting pregnant. Currently I have no symptoms from my avm and haven't had for about 6 months now.
If anyone has any information it would be greatly appreciated as currently my consultants seem very reluctant to talk to me about it. I just want to know what the answer is!
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radsrus
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   Posted 9/6/2008 3:31 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
I frankly don't know. I would advise it for 2 years with intracranial avm's, but I don't know about spinal. Where were you treated? I would consult them and also a good maternal-fetal specialist. Where do you live?


Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

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chudleigh
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   Posted 9/6/2008 11:30 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Dear Clinton
I was treated at a Cyberknife centre in Munich, Germany but I live in the Netherlands. I was first diagnosed in the UK and my consultant there would not give me any information regarding pregnancy. i have not been able to get information from my consultant in Munich yet. So is it a difficult question to answer because it is such a rare condition? I have found people who have had avms and had children but these are mostly brain avms. You say you would advise two years for intracranial, is this two years after treatment? And should I become avm free, then would it be safe for pregnancy?
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radsrus
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   Posted 9/7/2008 5:33 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
!. I will try to get Dr. Muacevic in touch with you.
2. There are certainly good maternal-fetal specialists in the Netherlands
3. Yes, it is an uncommon condition.
4. Yes, two years after treatment and angiogram then to see if the AVM is gone.
5. No AVM, no risk


Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

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chudleigh
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   Posted 9/7/2008 5:39 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Dear Clinton

Many thanks for your reply. My consultant in the UK is sending Dr Muacevic the results of my last MRI scan so I guess he will provide me with an update of how it is going and I hope he will have knowledge of the implications for pregnancy. I guess my only hope is that the cyberknife treatment works and will disappear.
Is it true that the smaller and AVM is the more risk there is of a bleed?
I really appreciate you taking the time to reply to me.

Kind Regards
Joanne
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radsrus
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   Posted 9/7/2008 5:48 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
I have not thoroughly investigated this, but I have not seen data suggesting that smaller avm's have a higher chance of bleeding.


Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

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chudleigh
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   Posted 9/23/2008 5:10 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
I also have new symptoms after not having any for around 6 months. These are a tingle in my left hip and left leg (usually after I have been walking or moving), and some dizziness. I have also asked Dr Muacevic about this and he said they could be related to my avm and that he would have to see my scan results to make a correlation but after just reading some postings on this site, is it also possible that they could be associated with the treatment? I also think that the worry and constant awareness of the symptoms might magnify them?
And one question that I realise that I have never asked is - what is the success rate of cyberknife for successfully treating spinal AVM's or is this too rare to be documented?
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radsrus
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   Posted 9/23/2008 5:20 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
There are not enough cases reported to give good control data, but what is available is encouraging. Your symptoms could be from treatment, and could also be magnified somewhat by constant awareness.


Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

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chudleigh
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Sep 2008
Total Posts : 6
 
   Posted 9/23/2008 6:11 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Is it possible to have symptoms from the treatment even though it was 10 months ago that I had Cyberknife?
And is it a bad sign to have new symptoms after not having them before and not having any symptoms at all for a while.
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radsrus
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   Posted 9/23/2008 6:14 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Yes.
Not necessarily.

That is the long answer. THe short answer is:
Yes
No

I think you will just have to wait and see how this unfolds. Keep in touch with Dr. Muacevic.


Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

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chudleigh
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Sep 2008
Total Posts : 6
 
   Posted 9/23/2008 6:17 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
I will! But I am impatient!!
I appreciate your speedy responses!
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