Scared and confused

Hi I’m Kirsty, 25years of age and up until around 8 months ago was a fully active young woman enjoying life and my job (as a lifeguard) that was up until I started with numb pain like sensations in my leg, after several months of scans on my knee and leg along with nerve conduction studies, I was finally reffered for an MRI on my back just on an off chance of something being found. 4 days after this I got an emergency call telling me not to go anywhere and I would be called into Walton neuro centre soon as an emergency appointment. Since then I’ve been told several different things, had an angiogram finally been told it is a spinal AVM (no idea where abouts in my spine) I have been given 4 options, the first being to wait and see what happens, the others being another angiogram, radio surgery and the operation. I have been told out of all of these the preferred option is to sit and wait for me to basically get worse, I’m looking for advice on this as other people I’m reading about seem to be having lots done, when I’m just stuck getting worse un able to work, un able to go out and do much due to the pain, and constantly having to be near a toilet. I don’t want to be like this forever, the last thing I was told by the doctor is I was never going to be fixed… Hopefully someone has some better advice on here… Thank you for reading. Kirsty

Hi Kirsty. My AVM started by me getting weak legs until one day my legs just stopped working. [paralyzed]. I went to hospital where went through different tests [MRI, Angiogram] My neurosurgeon came back to me after seeing the angio result and told me i had to be operated on the next morning. The more i waited , the less chance i had of walking again. Only 30 % chance as of that day.. So i had the operation and now i can walk again with a cane to help with balance. Some pain but very bearable. Lots of numbness even after 2 1/2 years. After surgery i had to catheter at least once a day for about 6 months but now i am free of that. My bowels are almost normal also. My advice to you is not to wait cause the AVM is putting pressure on your spinal cord and could damage it further. If you wait the damage could be ireversable. I would look for another consultation from a re-known neurosurgeon. Good luck to you and know that i am here to try to help you morally. Take care.. Richard

Hi, Kirsty:

I'm so sorry you're having to go through this. You're not alone. There are not many of us with spinal AVMs, but there are a few.

It's important to know where your AVM is located. Mine was at T6/T7. Some AVMs are more accessible than others, which will determine what procedure to use to kill it.

In my case, they tried embolization first, which worked for 3 months. Then the AVM "recruited" another feeder vein, and it came back. Finally a surgeon cut it out. In eight years it hasn't returned.

You will need to research this to your own satisfaction, since it may vary from situation to situation, but I have read that it is important to kill the AVM early, since many people never, or only partially, recover from the damage it did to them. I was one of the lucky ones. I couldn't stand upright or walk, but now I can do both, although I use a cane. I also recovered partial control over my bladder and bowels. Others, as I have said, were not so fortunate.

Also, AVMs are so rare that most doctors, including neurologists, never encounter them. My own neurologist remembered me fondly -- and I hadn't seen him in 5 years. Not an enviable distinction. Anyway, look through these posts. Many people have listed doctors who are AVM experts. Find one, if you haven't already.

My thoughts are with you. Godspeed!

David H.

P.S. I agree with Richard's comment above. As I said, in many cases, faster may be better. dh

Hello Kristy im sorry you are going through this crap. I agree with Richard the longer you wait the more damage you can do which can make recovery more difficult. I was a diagnosed February 2015 but before then I felt numbness in my legs and also weakness. For month I just took it as over working my legs and contained on. I worked for a Railroad fixing and repairing tracks so with the strenuous work I took it as soarness. Then it was getting worst and worst in weeks after multiple test, scans, and MRIs later AVM fistula was found in my thoracic spine. I was getting bad fast seemed like one day to the next so after a few attempts to take care of it with out major surgery, was unsuccessful. Major surgery was recommended to prevent ending up paraplegic. After surgery i had a catheter for few month bowel movements were difficult. Balance and coordination was poor need walking assistance (cane or walker). Now year later Im doing aggressive theropy which is helping some I walk with a cane. I still self cath to urinate. Bowel movements are better due to change of diet and high fiber. Still have numbness from waist down to toes which could have been from waiting and causing more damage to nerves and spinal cord. Any questions message me good luck praying for a speedy recovery for you.

Hi Kirsty,

I so remember being in your shoes. I was so scared. I have an AVM at T4 in my spinal cord. It sounds like there is a lot you don't know at this point, such as where it is located, what type, etc. They found mine when I was in my late twenties. I had a burning sensation in my chest that the doctor said was probably a muscle spasm, but I awoke the next morning to a half numb feeling on my left side. It took 6 months to finally get a diagnosis. I was pretty scared, but have found support through my faith and talking with others who have AVM's.

I still don't feel hot and cold like I should on my legs, and they are weak. I am walking though, and living a normal 45! No one has touched my AVM. My doctors recommended leaving it alone, due to location and type. Mine isn't one that grows, It has remained the same size all these years. I have had a couple of scares, but nothing that has altered my life (other than having to deal with some anxiety and get that under control).

I would make sure you understand more about your AVM, as every situation is different. I have doctored at Mayo Clinic in Rochester, MN, and originally saw a doctor in Bloomington, Illinois who another friend of mine had. Both places recommended not touching mine, unless absolutely necessary. I believe they collaborated with Dr. Spetzler in Arizona, as well. I had one doctor at another hospital who we felt was eager to do something, but my husband and I decided to go with the majority's recommendation.

I have chosen to live my life. For twenty years (knowing) and for actually 45 years, I have been living a normal life. If I don't tell people, they would never know. Am I somewhat limited? A little. Are my legs weaker than most? Yes, but I walk just fine. I can't run anymore (which I loved), am not supposed to lift over 10 pounds, (I do sometimes), don't ride roller coasters or certain rides with our kids etc.... :) Was I married when I found out my diagnosis? No. I told my husband when I first met him and his response.... he could be paralyzed in a car accident tomorrow. :) So true. We opted to adopt, as to not put my body through the stress. We have two beautiful children that we probably wouldn't have if I didn't have this AVM!!!!

So, I think a lot depends on your situation. Try to educate yourself, which you are doing. I know that scared feeling!!!! When I was diagnosed, you couldn't find much at all, even on the internet about AVM's, let alone spinal ones. Every situation is different. There are some that need immediate attention. I don't know your situation, but wanted to share mine,

At this point, you need to find out more information from your doctors. While mine is best to take a watch and see approach, other situations are not. So, I would find out where yours is located, what type you have.. is it one that will grow, what are the risks to doing something, to not doing something etc just a lot to consider. I know it is overwhelming. I think I may be a rare case among rare AVM's anyway. Just remember each AVM is different.

I will definitely keep you in my prayers.

Hi all… Thank you so much for taking the time to reply, just them replies can do so much to a person in a world of unknown where I am right now. Like yourself Kari the doctor did say leaving it is normally the best option but as I seem to be getting worse they do want to do something but in the doctors words ‘it will be hard to get someone to touch me’ not the best thing you want to hear. I can feel myself and my legs getting worse each day and it’s so mentally and physically draining, this along with hearing nothing from consultants for months on end is exhausting. How do I find out about speaking to other neuro people? Is there anywhere to check or anyone to speak to does anybody know, or is it just pot luck trying to find different opinions?
Thank you again

Hi Kirsty,

I must not have read your first post well enough. I thought you were just talking about what could happen, but if it is happening, I would see a doctor right away. My doctors have always told me to get in right away if I begin to lose function etc. Have you looked at the doctors for the United Kingdom under the "Doctors" heading on this website? Please look into this. I don't know these doctors, but you could ask on this site to see if someone has had experience with them. I will keep you in my prayers!!! Let us know how you are doing.

Thinking of you...

HI Kristy-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 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 surgery. 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, with some changes to my eating and fiber habits 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 not full parapalegic and can be is temporary. You will most likely have to do some work to get 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. Surround yourself with people that think good thoughts and that want to see you healthy and successful. Their support is almost as important as your positive attitude.
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

Like those posters above, we all really do understand what your going through, physicaly and mentaly.
I had a spinal fistula, with angiogrames, then surgery. Have problems like many other posters but such is life. It sounds like to me that your Doctor is a complete dickhead for telling you, you can not be fixed. yes, those problems that most people have (At least in Australia) are usualy because the spinal cord has swelled. At least this is what ive learned here in Australia. Whatever the surgeons do, there priority will be to stop the AVM/AVF by angiograme or surgory and disconnect the artery and vein join. Thats when the cord stops swelling and goes back down to normal size.

When the cord reduces back to normal, Its a lottery on what damage your cord will have. No Doctor anywhere in the world can tell you what damage level you will have after treatment. Some have the most serious permanant damage and some recover to allmost back to what they where before AVM/AVF occured. Luck may be on your side because your young and being a lifeguard, your obviously healthy and strong.

Theres no cure for spinal cord signal damage, but that does not mean that your cords signal damage wont improve after surgery, embolism, ect. I struggle to walk with toileting problems, but pain reduces when sitting, I can now ride my motorbikes as my issues are when standing and walking. Sometimes when im riding around the area, I can just about forget the problems I have and at times forget the pain. I wouldnt dream of telling you what you should do, but i took a "Oh well, shit happens" attitude which allowed me to not ending up becoming angry and that sort of thing. Question your doctors and learn all you can about condition from medical websites. In Australia, its rare as rocking horse poo for a doctor to come across spinal AVMs/AVFs.

Some doctors have no sense of humour in Australia either. After a glue embolisation I had failed, I jokingly accused the surgon af budget cuts and accused him of importing cheap chinese super glue. It took the fool nearly a year to stop giving me the evil eye when attending follow up appointments. Keep ya chin up, Its a process to be sure but once you can work out what you can do rather than what you can not, life realy does get better and that in its self is worth looking forward too.

mick-hilarious :) you have a great sense of humor. I am sure that has helped tremendously in your recovery!

Hi Kirsty.
I noticed that you are from lancashire,
Have some info for you.
Give these folks a call.
They are a spinal outreach team in England, There phone no is: 0800 980 0501, You can chat online to them as well.
We have similar outreach teams in Australia which was helpfull to me when my condition first occured as it helped me understand the condition and to get my head around it.
They will be able to help you with information, support, ect. These outreach teams are often volunteers that have suffered spinal conditions themselves.
Google spinal outreach in England because like Australia, you probably have a number of spinal outreach organisations in England.
Cheers, Mick

Forgot to add, The spinal outreach team in your neck of the woods might be able to help you ask the right questions of your doctor. It helped me when my AVM/AVF occured.
You said the doctors advised that you should wait and see what happens.
The question you might consider asking your Doctor?

If I wait to see what may happen, what are the risks of increased spinal damage occuring? Perhaps take a family member in with you when you ask questions.

You have the right to ask those questions and you would not be out of line, or crossing any line in asking them.

I can not help with the medical side of what you are experiencing, but when the medical process has started,in process or over, I can tell you what coping mechanisms I used to help me through this and why. As any of the posters above would only be happy too as well.
Kathleen is spot on with her post in that embolizations and angiograms really do become a piece of cake. They actualy become boring as bat shit to me. When they give me the dreamy gas while doing the angiograms, (In Australia, you are awake, They dont put you under.) ive been on some pretty cool motorcycle touring adventures while under the dream gas. If I my condition improves, I might even go on some of those motorcycle adventure tours in real life thanks to the dream gas.

All the best to you,

Cheers, Mick

Thanks so much for the relies Mick!.. Sounds like your sense of humour had definitely helped you through all of this! I hope I will soon have more information rather than being left in the dark, that’s the scariest thing of all right now. Nobody (doctor wise) seems to want to just sit down and tell me anything straight! I got a phone call the other day from the radio guy who did my first angiogram was hopeful and expecting some information, I found out one thing that it’s in the T9-T10 section of my back. This mean absolutely nothing to me without information. Wastes of spaces!!.. But thank you again Mick for the great advice! I will have a look on that website and hopefully get some help with what to ask my doctor seeing as he has been as much help as a wet lettuce throughout this.
Kindest regards, Kirsty

Hi Kirsty,

Sorry that you are experiencing this. I was 25 when I became paralyzed due to my Spinal Cord AVM that was14 years ago the doctor told me the same thing that nothing will be able to fix my AVM due to it's location. I did have several embolizations to stabilize the AVM but other than that there is no surgery for my particular type of spinal cord AVM. Over the years many different AVM Specialist have all told me the same thing. One even told me that Cyber Knife is also out of the question due to the location. I have had many years to get used to being paralyzed I went back to school and got my Bachelor Degree in Psychology and Human Development I'm an Advocate for survivors of Domestic Abuse I feel that it's very important for me to feel that I'm still a useful productive member of society and I love to help people and listen to them in their time of need but then help them put a plan in place to make a better life for themselves.I wish you all the best and never give up because even if they can't fix your AVM you can still have an amazing life.If you ever need someone whose been there to listen to you please feel free to message me anytime.

My coping mechanism, Works for me anyway. He He.

When you go in and buy a new car, You dont go to the car manufactures factory to buy the car, or to the car manufactures head office to buy the car. You go to the car manufactures agent. The car dealer.
If the car devolops a fault, you take the car back to the dealer/agent and car gets repaired. Its no cost to you if car is under warranty.

Now because im middle aged and dont smoke or drink too much, I reckon im still under warranty. Now, I decided to take my body with its damaged spinal cord to Gods agent, my local church. I have not been to church for just over 45 years. So I went into my local church, sat there for a bit and said a prayer. I spent about nearly 5 minutes in there. I walked out, and my spinal cords still faulty.

Hmmm, Im thinking, Gods agents dont honor warranties. (The church preacher fellow), What to do, I ask myself, I know, I will write a letter to Gods CEO, (the pope) and complain that the church is not honoring warranties. Never got a reply. Right, bugger this, I thought. When I kick the bucket, I am going to ignore St Peter at the pearly gates and just barge straight past him and stomp right in to Gods office and give his arse a good kicking for making a faulty product, (me), And I will be dam sure that im buried with my steel cap safety boots on too. That way God will know it when I kick his arse good and proper. I spent nearly 5 minutes at one of his agents dealerships, (church) and he didnt honor his warranty.

Im in the right too, I reckon that if I was of retirement age, I couldnt expect a warranty claim on God, but I am of working age and can not work anymore. (Im an Electrician) so I reckon Gods going to deserve his arse being kicked

Hi Kirsty,

I'm sorry you're feeling scared and anxious. I was diagnosed with a spinal AVM ten years ago at 26-- we discovered it after years of leg pain when my growth hemorrhaged. I was (and still am!) very active. I had five angios in one summer. The treatment helped- I had very few side effects from the bleed. It took years to get used to the idea that I had this thing in my body that no one could see or even tell that I had. It will take some time for you to be okay with, especially at your age.

My story now is that I had no symptoms for almost eight years after the bleed. I developed some drop foot two years ago and with increasing pain I knew it was avm related. I've had three angios in the last two years. I'm feeling great though walk with a limp and have some urinary issues. I'm happy, healthy, and more grateful that I've ever been. I do yoga, trx, spin classes. I'm thinking of taking up white water kayaking because legs are not involved. I have best excuse for never running a marathon. One of my friends is an olympic swimmer and she thinks I'M a badass. Your friends will too.

My advice to you (and to my past self) is this.

1) Find a doctor AND surgeon you trust. Send your images and questions to the Barrow Institute for a second opinion for $100. (Barrow is cutting edge, you'll see the name Dr. Spetzler frequently referred to as the best for spinal avm in this group) They can tell you if they agree with your doctor. It's worth the time and expense to travel far for treatment if that means not being in pain and preserving function when possible. They might be able to recommend a treatment or another surgeon in europe.

-My doctor (Dr. Hoh at Shands in Gainesville, Fl) is a man of few words or assurances. It used to piss me off. I've learned over the years though that he is my spiritual teacher when he answers "There's no way of knowing" to almost ALL of my questions. He is incredibly skilled and I now trust him with my life. I was able to ask the head of spinal surgery at a big medical school who I should see (because I now live 8 hours driving from Dr. Hoh) he told me to stick with Hoh unless I see Spetzler in Arizona. I hope your find someone your trust as much.

2) Be your own doctor. Like others have said, with a rare condition you will be informing other medical professionals for the rest of your life about your condition, and what an AVM is. You will learn to trust your instincts and your body. I know surgery is the only treatment for my particular avm so I've had determine when I should call the doctor and when I should be patient and see if my symptoms pass (headaches that last for weeks,etc.). You'll find over time which symptoms you can live with and then what level of escalation means it's time to call the doctor. First, I hope you find treatment to alleviate!

3. Grieve. You'll see that a lot of us do have a sense of humor about our condition. It comes with time and after you've mourned and grieved the vision of health we all picture ourselves embodying forever. You will be okay, you will still be active even if you have to find new ways to be active. Humor will come but it's normal to be scared for a while first.

-I got a bikini wax for a trip I recently took. I was telling some girlfriends about it over champagne last night. I said "Thank god for my spinal cord injury because I hardly felt it." My girlfriends nearly spit out their drinks, we all had a good laugh. Two years ago I would have been in tears while I was in the thick of another round of angiograms. Mourning takes time. Then the surrender to unknown can be freeing.

4) Do the things you don't want to do. At first I hated buying incontinence pads. Then I realized they make my life easier and I feel more confident in public when I wear them. Walking with a cane is another one-- it can get icy in the winter where I live and parking lots are scary AF! Getting a handicap decal is another thing I put off and then was so happy to have. I started self-cathing recently. (I have difficulty emptying my bladder entirely) I put it off for a year but realized I was tired of doing pilates exercises in the middle of the night just to get my bladder empty. The things that made me feel like an "old lady" actually make my life easier and I'm grateful that I swallowed my pride.

I'm not sure any of this is helpful. I'm sorry to be preachy. Your story is all too familiar. I really hope you find treatment to alleviate your pain and stop the increasing numbness. Please reach out if there's anything I can help with. I'm not too active on this page but I think we all keep other the members in our hearts. Lots of love to you.

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Kirsty, some new updates?

Hope you are fine (or better!)