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AVM Survivors Network

Avm spine - embolization at T11-12


#1

Hello!!! I just dont know that from where i should start telling my experience… My elder brother is 26 years old last year hi diagnoses avm spine…he go through 1st embolization but after that embolization he is on wheel chair he lost his sensory function plus his movement of right leg…In February 2018 doctor said that he diagnoses with avm spine again so this time they did embolization again of T11 and T12…i just wanted to know that is this a curable disease?? Is there any treatment of this disease in this word plz recommend me a dr who can deal with this as now we are hopeless still he has so much pain in his back
Doctors said that we should visit china or india as in Pakistan there is no solution for this…
So right now fingers are crossed and we are waiting for some hope!!!


#2

Hello Ramna,
Welcome to the cummuity.
I am sorry to hear about your brother and the after effect of embolization. I know how it feels to care for a relative because myself have been in this situation. I have a sister who has AVM is the cervical spine.

I am not sure if embolization was explained to your family. What it does, it blocks the the blood flow into the AVM. What was used in the embolization? Glue or particles?


#3

Yes it block the blood flow in most of the parts through embolization and they use glue for that… And even after 3rd embolization there is not 1% improvement in his legs and sensory lost
Now a days we are consulting with a doctor in china… But not sure that this will add any improvement in him or not

As in Pakistan AVM spine is rare case and most of the surgeon did’nt have enough information about it.


#4

Embolization is generally done to avoid the risk of the AVM bleeding by blocking the blood flow into it. It is a precautionary measure. It is not done to treat past symptoms.

However it carries the risk of blocking blood flow to other areas that need the blood flow.


#5

Thank you so much for your guidance about embolization
Would you please like to share details of ur sister ‘s illness, as u discussed earlier.

As she also suffer from avm cervical spine? How much time it had taken to recover. And how it recovered either thorugh open surgery or just embolizatiom

Moreover I want to know, whether she has movements in her legs?


#6

Ramna,

Hello. It is good that you found us and I am very sorry for your brother’s condition. I do hope the best for you both.

I have moved your post to the Spinal AVM category (click on these words under the topic title to see other conversations about spinal AVMs).

I don’t have any experience of a spinal AVM but from reading the other replies above and reading through other stories, I can say that Oman is quite right – embolization is always a risky procedure, as there is always the risk of blocking the wrong artery or blocking too much and doing some damage. The tissue around an embolization I expect gets very irritated by the embolization, so I guess there is also swelling that occurs, too. How long is it since he had the operation? If a long time, you’d expect any swelling to have subsided.

Embolization on a spinal AVM seems to be very mixed in terms of success. We have a number of people from less developed countries who seem to be in the same condition as your brother… where a spinal embolization has been attempted and has left the patient with a loss of function. Surgery or a laminectomy seem to me to be among the more successful operations but I suspect the surgeon has to be among the best in the world for this to really be a success.

We do not have many, if any, Chinese members here. The audience here is naturally English-speaking but we do have members from many countries and languages. I would say for a first class opinion, you need to reach out to a “first world” country. For example, there are hospitals in the US who will at least give an opinion on a patient’s case where the information is sent by email. I have seen no spinal opinions being sought by this means but it is very affordable to try. See

Or

and doing a Google search shows a bunch of others.

I hope this helps. Lots of love,

Richard


#7

Sure,
She had an AVM starting from the brainstem through C1 to C2 inside the spinal cord. As you know, the spinal cord carries all the nerves from the brain down the spine to the various body parts.
It was discovered more than 12 years ago. It was pressing against the nerves and caused her episodes of head, neck, shoulder stiffness and pain. We did not do anything about it since it was too risky. Those days technology was not as advanced. This area of the spinal cord directly impacts the heart and lungs. Doctors in Oman and India advised us not to touch it. The risk of embolization or radiation treatment was high because of the location of the AVM. So she had to put up with the episodes of pains.

In 2016 it raptured. Affected her breathing and paralyzed her for one month. She started recovering slowly afterwards. Left her with headache, neck pain, weak limbs and burning sensation in the left side of her body. She had to take various medications to manage the pain.

It was a matter of time before it would bleed again because it had aneurysms weaknesses in the blood vessels). So not taking action was not an option anymore. We started consulting doctors from many countries around the world. In the meanwhile I found this website and I read a post that someone posted about his son who had a similar AVM in C1 to C2. I contacted him and he advised me to consider embolization with particles instead of glue because it was safer. So I contacted the doctor who treated his son. But the doctor said that particles cannot be used for my sister because her AVM was large. I didn’t know what to do so I made “Istikhara”. Istikhara was positive. So we flew to Paris for the treatment. She went into a 5 hours procedure. In the 5 hours they were able to block 30% of the AVM only. A year later we flew back again for a second embolization and the doctor managed to block another 30%. This 60% was the area with aneurysms. In 2018 we were supposed to do a third session but the doctor said that the remaining 40% did not have aneurysms and it is better not do to embolization because it is very risk. Now she has to do MRI/angiogram every year and send it to Paris to monitor if the AVM develops aneurysms. If it does, she has to go for a third session.
All embolization sessions were to prevent future bleeding. But did not help her with her pains, burning sensation nor week arms and legs. But we are thankful to God that she lived through the first bleeding.

PS. By the way the treatment in this hospital in Paris did not cost much. The expenses we paid were lower than EURO 10,000 for all expenses for air tickets, hotel (for 4 persons), food, and hospital expenses for a trip of 1 week.


#8

We tried a hospital in China too. We emailed a hospital there and sent all the CDs to them.

Language was an obstacle despite that the hospital provides translators and translation service.

Moreover, we were not convinced with the treatment plan they proposed. They proposed embolization followed by surgery. We knew before had that a surgery in C1/C2 area was NO GO. None of the doctors in other countries dared to propose surgery in this location.


#9

The reason why we were considering China was because China allows stem cell treatement.

We thought in case of embolization or readiation results in nerve damage we can resort to stem cell treatement to regenerate the nerves.