Quantcast

AVM Survivors Network

My SDAVF Story


#1

Hi Everyone,

I am a new member here. My SDAVF story began at the beginning of this March with lower back pain. In 2 weeks it gets stronger at nights, it made me wake up many times. In order to decrease pain i exercised and i slept again. 2 week later i went to hospital. They take MRs and misdiagnosed me as Transverse Myelitis and started to cortisonoids. After cortinosoids my legs were paralized, i lost bowel and bladder functions. I couldnot move my legs but i could feel it. After 6 days cortisonoid treatment, they started plazma ferez and my legs started to move again. In 3 months they gave me cortisonoids again, ivic, immuran, ritucsimab medicines. They always made me worse. In 3 months we have seen many other doctors. At last one of them suggest me to have spinal anjio and i have it. After 3.5 months later they told me i’m not transverse myelites, I have SDAVF. They suggest me to embolization and they told me after embolization, i will go to my home by walking. I was the happiest man at that time. I had a new born son and i will be cured. Before embolization I can barely move my legs and feel but cannot stand. After embolization i lost the feelings and movements all. Doctor said that the embolization was successful but after embolization blood thrombosis occured in the vein. They try to open it with clexan 0.8x2. This is the 11th day after embolization there is no significant improvements yet. Is there anyone fully paralized after embolization because of thrombosis in the vein and recovered?


#2

Oh my gosh, Cemil! I think I have read of people having some swelling after a SDAVF operation but if you have an inappropriate thrombosis, it doesn’t sound good.

I have added you to the growing @Spinal group. I hope someone might tell you their story.

However, we are all hoping the best for you!

Richard


#3

I’m sorry to hear that the treatment did not make you feel better, I suggest you to send all your testing to barrowneuro.org and ask for a second opinion so they can advise you. Barrow did an amazing treatment for my husband when all local doctors were giving us no hope.
Wishing you to get well soon! Cristiane


#4

Thank you Dickd and Criszanardi for your comments.

Criszanardi, actually the Doctor made the embolization, is one of the two best DR in my country. We have also take advice from another one. Unfortunately this doesnot change my current situation. It is better to take another advice also. It is hard to believe him but he believes me to recover. After the operation he take MR and spinal anjio again. He said if there was a problem in arter recovery was not possible but now he says it is possible. The vein should find a way to flow.


#5

Current situation is similar to this.

http://thejns.org/doi/10.3171/SPI/2008/9/8/186#/doi/10.3171/SPI/2008/9/8/186

This is also similar

https://www.ncbi.nlm.nih.gov/m/pubmed/21362296/


#6

@Cemil it pains me every time I hear the aftermath of misdiagnoses. SDAVFs are notorious for being misdiagnosed. I’ve read far too many accounts and some of the members on this forum are also SDAVF Survivors who have been misdiagnosed. I know, I’m one of them. I was misdiagnosed for eight years and just had surgery on June 20th.

You included a couple of links in your latest update that you describe as similar to your current status.

I have a couple of my own. This one describes a misdiagnosis similar to yours and the consequences of the administration of Corticosteroids when the real culprit is a SDAVF. https://jamanetwork.com/journals/jamaneurology/fullarticle/2383122

This second article is more general in nature but re-affirmation of your latest doctor’s decision to administer an anticoagulant (in your case – Clexane) to aid in combating a Venous Thrombosis following Embolization of the SDAVF (See Page Six). https://bmjopen.bmj.com/content/bmjopen/8/1/e019800.full.pdf

I know it is a worrisome time for you right now, but you have lots to fight for so stay positive and trust your doctor. As you said he/she is one of the best in your country.

We are all in your corner hoping for the best outcome for you.

Keep us updated.

Brent


#7

Brent. Double :heart: :heart: for that post. Great.


#8

Thank you Brent four your comments. These are the links related with cortisonoids make sdavf semptoms worse.

https://www.e-jnc.org/m/journal/view.php?number=217

https://www.futuremedicine.com/doi/10.2217/pmt-2■■■■

I donot want to think misdiagnosed part but my former doctor always said to me cortisonoids didnot paralysis you. We also ask many times to other DR’s they always said the same. We always believed them. They didnot give only cortisonoids that make me worse, ivic made me worse, immuran made me worse. At the end they think i might be Devic since it grows from T7 to T4 and t2, despite there is no anticors. And they gave me rituksimab that made me worse also. But they always say medicines didnot make you worse but cannot resists enough. That why i cannot trust DR’s enough, this is not related with my current DR. If my current DR didnot see my MRs most probably they will try to cure me as Devic and try to understand why ritucsimab doesnot work on me.

By the way based on the one of the best norology DR’s opinion they gave me cortisonoids again after the operation. Now my trigiriselid, colesterol and insulin level is very high. They say this is because of cortinosoids and other medications i already took before. 9
days they gave me 1 gr cortisonoids again after the operation.

This is the 13th day still having clexana 0,8x2 and no improvements yet.


#9

This is not spinal but similar example. This takes 1 month to recover.

https://www.ncbi.nlm.nih.gov/m/pubmed/12447142/

This is also similar and takes 5 days to be resolved.

https://www.researchgate.net/publication/45274066_Secondary_Clinical_Deterioration_after_Successful_Embolization_of_a_Spinal_Dural_Arteriovenous_Fistula_A_Plea_for_Prophylactic_Anticoagulation

This is 15th day after my embolization and still having clexana 0.8x2, no significant improvement yet.


#10

Hi,

1,5 months passed but little improvements in feelings but not in movements yet. We have MR again. Good news is healing can be seen in spinal cord but bad news we cannot see healing in movements and feelings enough yet.

Is there anyone investigated and taking omega 3, curcumin or royal jelly?

https://www.ncbi.nlm.nih.gov/m/pubmed/28941865/

https://www.ncbi.nlm.nih.gov/m/pubmed/23994716/

https://www.ncbi.nlm.nih.gov/m/pubmed/22538080/