Spinal Avm type 2 - questions

Hi everyone, a huge thank you for this site. Im very nervous about my recent diagnosis with a spinal avm type 2 at t9-t11. Can some of you give me insight into spinal vans. What surgery do they preform? My doc won’t tell me anything until after my angiogram. I am scared and want information. What are the chances I will become paralyzed if I have surgery? Will I ever walk again? I feel normal! They found this because I went for MRI because my leg hurt which they figure is from a prolapsed disk and sciatic pain. How many times is this surgery preformed? Im nervous because he told me that the avm is for sure inside my spinal cord. Im assuming that is more serious then on the outside. My family is all saying there isnt anything to worry about and my husband seems to think everything’s going to be fine but I don’t agree. I read lots about paralysis. Please give me some insight and your stories. It would really help.

Hi Lulu, I had an AVM in the brain so am unable to offer any advice on this one, Sorry but I can suggest that you join our Spinal AVM group which has over 100 members all with the type of experience that your looking for and may be able to offer you advice from there ?

http://www.avmsurvivors.org/group/spinalavf

Good luck and hope everything works out well.

Martin.

Hi Lulu88,

I'm in a similar position - I've had my angiogram (my AVM is in my brain though), and I am awaiting to hear my neurosurgeon's opinion next week.

It sounds like you've been reading up online just as I have been doing. Unfortunately as our conditions seem to be very rare, there is not much information available. To make things even more difficult, in the position we are both in that we don't actually know details of our problems, it is hard to determine whether the information we read online is even applicable to us.

The main treatment options I've found for AVM's are:

Embolisation - a "pipe" is fed in like during an angiogram, but instead they use special chemicals to "glue" the arteries feeding the AVM. I believe the idea is as blood stops flowing to the AVM, it gradually withers away. Often this doesn't totally eliminate the AVM, but it helps to reduce the size. There will be follow up angiograms to monitor the effectiveness of the procedure and sometimes this technique is repeated a few times to gradually shrink the AVM. Sometimes it is also used to shrink the AVM to a size where the next two options become available.

Stereotactic radiosurgery - often known as gamma knife or cyberknife. The 3D scan from your angio is fed into a computer which creates a treatment plan. This often involves a special guide (collimator) being designed to guide the radiation beams to the precise point needed. Instead of having one big radiation source, I believe gamma knife uses 190 small sources which the computer moves around to suit your AVM. The idea is that the 190 low power beams don't destroy everything in their path, but the point where they all cross gets a high dose. Again there will be follow up angiograms as this also doesn't always eliminate the AVM, but should shrink it. This is also sometimes repeated to gradually shrink the AVM until it is eliminated or direct surgery becomes feasible.

Depending on the location, direct surgery to remove the AVM may be an option. This has the benefit in that it is an immediate and total cure (if we ignore the recovery time), although any surgery involves different risks than the previous two treatments.

The final option is if the AVM is too "difficult" to treat, there may be no suitable treatment available - our doctors have to weigh up the potential risks versus benefits so sometimes the best option may be simply observation (often combined with medication).

It sounds like you may be a bit like me in that you read up on things and worry about the worst possible cases. I cannot deny that knowledge is power and it is good to have a decent understanding of your problem so you can discuss it in greater detail with your neurosurgeon. Just try and avoid the trap I sometimes fall into of convincing myself that all the worst possibilities will happen to me.

I sincerely hope the end outcome will be a great relief, and I wish you all the best.

Hello,

I am responding to your concerns. I had Avm in my spine T9 and my operation was on Jan. 8, 2013 at Emory University Hospital in Atlanta, Georgia. I did not lose my bowel nor kidney functions of which I am very thankful but I have been left with Brown-Sequard Syn. which is a problem; however, it is much better than a wheel chair. I did not necessarily concern myself with how the operation would turn out because I was given a choice by the Doctor either the operation or go to wheel chair. I hope this may help in some small way. In mean time I will be praying for you and that your health will be restored.

Jimmie C.Georgia,USA

Hi Lulu. Welcome to the group!
I just found your message/discussion, and you have all the right to be scare. But one thing I know, if doctors told you the can operate, go for it.
In my case, my hemangiomas (3) and AVMs are so tangled, the whole system is so complicated, that at the end they were very honest... they told me they can't operate...
Go for it, because at the end, any mild discomfort, even any changes in your body can be fixed with therapy.
Do not worry, they will take all the measurements needed. Plus, you are in Canada right? (Toronto?) During my first researches I found doctors there, have a lot of knowledge about this matter
Just so you know, doctors at the University of Miami tried to embolized mine on the past... what they did is, they put sort kind of sensors? in different parts of my body, including sphincters. THey proceeded with the embolization, doing a little trial of a few seconds first... blocking the blood from the AVM responsible for this mess... When they noticed that I could lose functions from my waist down, they stop the process and did not operate.
If your are dealing with neurosurgeons and specialists with enough knowledge on AVM's.. then I would go for it...
Talk to your doctor... put your concerns first... and they will proceed according to your desire.
Good luck.

I just recently had surgery for what sounds like the exact same thing. The area it affected me was the thoracic region of my spinal cord. My surgery was on 2/23/16. I am currently using a wheelchair but with a lot of PT, I expect to walk again. I am regaining strength, even though progress is slow.

My whole world came tumbling down on 2/12/16 and I did not have a choice to have surgery, since I completely lost the use of my right leg within 2 days. I had ongoing issues with that leg for the previous 3-4 months.

The best advise that I can give you is to remain positive and keep fighting!

thanks for the reply. What was happening to your leg before you had surgery? I’ve had pain in my leg for years … Nerve pain they say from prolapse disk. I had angiogram on my spinal cord to find info on avms they saw no bleeds or aneurysms. They think I should just continue to monitor it. I read that only 1-5 percent bleed. Did yours bleed and that’s why you needed surgery? Hope your recovery goes well.

I will assume since you poste back in Jan. you may already have your answer from you Dr. as well as the results of surgery. I had the same issue but at T9. The results is Brown Sequard Sdy. Not good but I live normal life for the most part other than the issues that is associated with Brown Sequard Syd. If interested you can look up Brown Sequard and it will painted accurate picture of my issues. Hope this will help that there are others of us out here. Jimmie Camp

Hi Jimmie thanks for reply. I had an angiogram and my avm is stable at the moment. Surgery isn’t needed until it bleeds or aneurysms are present. Well at least that’s what my doc said. I will find out more on April 6…, I’m sorry you are having a tough time. How come you needed surgery? Did your avm bleed? How did you find out you had an avm?

I had no pain associated with my left leg originally. I could not control my left leg. When I sitting back in recliner with my leg drawn up, my left leg would just fall over. I was under Doctors care for about 6 months before they made a decision that operation was necessary. Yes by was bleeding. Do anything you can before you have operation. It may be a some point you will have to have operation and my Doctor said either have the operation or you will be in wheel chair, so at that point the decision becomes easy. It has all worked out but I have to walk with a limp and nerve pain running up my leg. That goes from my left foot including toes up to my left hip area. I was very lucky because I did not lose my bowel nor kidney function. which can be a real possibility. I read on one of these email that Dr. have a lot knowledge for performing the surgery and I would say relative safe. But life is not the same by no means and would have would have been very happy had this not happened to me but Life is still Good. Keep the faith and it will turn out ok. If Dr. just want to watch things that sounds like a good out come.

I rarely check this site but keep me posted on your April 6th Doctors visit. I am in USA, state of Georgia. You are welcome to send email to one of my email accounts. This way if things don't go the way we all would hope I would be very happy to let you know how things go with post operation. It sounds like you are going to be lucky in that it is not bleeding. It looks like the conditions would be about the same since the locations is T9. As I am sure you are aware at this time as you move up and down the spinal cord, the spinal cord nerves control different parts of your body and how it operates. I will certainly pray for you and results. Never in my life would I thought that something like this would happen to me. I thought cancer would be a greater possibility. We just don't know what tomorrow might bring. I do feel so lucky myself because I live for the most part a normal life but the burning nerve pain up my left side is not pleasant. I can' walk as well as before and I do have to limp around but I keep going and will not let it get the best of me.

thanks Jimmie.
I appreciate the support. I am in Toronto Canada so if necessary if probably get second opinion from doc in Usa. Ya I have nerve pain in my right leg from sciatic pain. I also have a prolapsed disk which is causing this pain in my leg. This was an incidental finding from an mri. So I got lucky to have found it. Now I can be prepared if something happens. Unfortunately my nerve pain is still there but working to get it back on track. My main concerned now is if I can live a normal life knowing that I had this rare malformation. I want to find out if I can have more children. I have one baby boy and I’m so grateful but we want another baby. I have always wanted two. I found out on April 6 if docs recommend me not having more children. I pray I can have another baby but I’m grateful for my son.

Dear Lulu88

this sounds very familiar to me, and my story although still in progress, has a happy ending, so keep reading. I was diagnosed in 2009 due to mri for bulging disks. My avm was inside at t9-t11. I did not have any symptoms at that time. My regular doctor sent me to a neurosurgeon in my area, who then sent me to UIC to a the head of neurosurgery. At that time, I thought whoa! this must be serious. I had an angiogram done in 2010 and they scheduled an embolization later that year. again at that time, I did not have any symptoms I was 30 and in perfect health. During the embolization they did a test of a area and realized that if they followed through with the procedure, it would leave me with a deficit (paralysis). Since I did not have any symptoms they aborted the procedure. The doctor told me to keep an eye on things and if I displayed any symptoms to come back. Fast forward to August 2015. I started to have weakness in my legs. this progressed to also losing bladder control. In November I could barely walk and was trying to tell myself I would be just fine! I finally gave in and agreed with my doctor it was time for action. I had 2 mris done the week of thanksgiving. Once those results were sent to the neurosurgeon, they called me and told me to get to the hospital ASAP! I was admitted to the ICU and prepped for surgery. I had an embolization on 12/4/15, it did not cause any additional impairments. So since 2009 something had changed to make that procedure successful. I was released from the hospital on 12/8/15. I started rehab since there was so much swelling prior to surgery, I did not get instant relief and had developed drop foot. the physical therapy was to help get me back to my old self. By 1/10/16 I was walking with a cane and back to work. So the embolization (which is in fact an easy procedure) did help quite a bit. However, by 1/20/16, I had some new symptoms (loss of bowel control :(). I went back the hospital and the MRI showed that the swelling in my cord had reduced quite a bit, which is great news! But the new spinal angiogram showed the avm had new feeders. It was now at l1, l2, t11 and t 12. It was time for me to make the decision of if I wanted to have the lamenectomy surgery. Basically the choice was clear for me. Before fall of 2015, I was extremely active: exercise 6 days a week, tennis in good weather 3 times a week, golf once a week, kayaking and hiking also are on the list of hobbies. So for me I did not want to wait any longer for more symptoms or a possible spinal cord stoke. On 2/8 I had the lamenctomy. they removed bone for 10 vertebrae to get to the cord. The surgery was 7 hours and extremely successful! 99.9% of the avm has been removed. I spent a week in recovery and 2 weeks in rehab. I will say that was a tough few weeks. But my drop foot has corrected itself, my bowels are completely fixed and my bladder is nearly 100%. I am walking with the can still but my progress is amazing. I believe that within the next 6 months I will walk unassisted and by this time next year I plan to be back to all my fun sports!

Here is my advice, from experience
1. Make sure you have a great team of doctors
2. If you don't have symptoms don 't have surgery. I am so glad I waited, I had 36 (and 7 years after diagnosis) years of full function and feeling great before I needed medical attention
3. If you have surgery, keep spirits high and see yourself walking again. don't let web md or other web sites that list symptoms steer you to think you will not walk ever again
4. In most cases the paralysis is temporary. You will most likely have to do some work to get full function back, but it can be done. Don't ask the question if you will walk again, ask when you will walk again
5. Pay attention to your body, it will tell you when and if you need the surgery
6. Listen to your husband and family and everything will be fine. Their support is almost as important as your positive attitude. Surround yourself with people that think good thoughts and that want to see you healthy and successful
7. Angiograms and embolizations are a piece of cake. Total now, I have had 5 of those total.

Please feel free to reach out to me with any questions. As this is such a recent surgery for me, I am happy to share any more of the story. I want you to realize how lucky you are that this was found. you may never have symptoms. But one day if you do, you will know exactly what to do. I am here if you need anything

Hey Kathleen,

Thank you so much for your kind words of support. I am hoping that I am going to live life and nothing is going to happen but it is reassuring that you have a happy ending to your story.

I will definitely keep you in mind if I have any questions or I am looking for some guidance. This is alot of information to take in. My life has changed so much since finding out about this. However, I am starting to come to terms with it and I am looking forward to living a happy and healthy life with my new son and husband.

HI Lulu,
I have the same thing but it is from my T2, to my T12, my doctor says it's the largest one he's ever seen and that he could never tell if or when it will bleed but what he can tell me is that if I bleed I would be paralyzed/. I'm with you I'm so confused on what to do because I've had this pain for years and other than constant pain, I have function of all my limbs. where do you live, I seem to have found the top surgeon in LA for teh surgery but am still hesitant. Have you decided what to do?