Looking For Answers and Worried

I was a strong healthy 39 year old Railroad worker until February of this year (2015). I started to notice parts of my legs going numb as well as my groin area. After my legs have gotten to the point where I no longer could lift them over the railroad tracks due to the weakness. I consulted with a back specialist. After multiple test and plenty of MRI later they noticed I had a AVM/Fistula in my thoracic spine. After 2 failed attempts of embolization threw insert from artery in my groin area the Dr. decided that surgery needed to be done asap to prevent me from being paraplegic. I had the surgery 7 days later on Feb 22 spent 8 days in the hospital. After I was ready to go home I noticed that I was more numb then before the surgery, which felt like a line around my belly and everything below it was numb including my groin area. I had a foley catheter bag for the next 3 month. Now on my 4th month recovering im still numb with sharp pain in my left hip and legs. I have trouble urinating so have to self cath and bowel movements are difficult. I depend on laxatives and enemas most of the time and sometimes it can be up to a week before I can have a bowel movement. My balace is still off I have no coordination walking on my own I need a walker and lately a cane. My legs get tired quick to the point I feel like I want collapse. I have been doing physical therapy for 3 month now with minimal results. The surgeon did say it was going to be at least 18 weeks before things start to wake up but I dont feel it. Went from active railroader, hunter, outdoorsman to being confined to just being home now. If anybody out there has the same issues please share, progress, results, anything. Im losing hope that I will never work again and being sole provider for a family of 6 its been very very hard having to go through this financially, mentally,and physically. THANKS

Gary, Hang in there buddy there is life after avm. Mine was also thoracic and lumbar spine and our symptoms sound very much the same. You have done everything right. They were quick to diagnose and try embolization and then surgery and physical therapy. You didn't mention whether your surgeon was able to completely obliterate the avm or not. Usually that is confirmed by a follow up angiogram to be sure it was completely removed. My first surgery was in 2008 and it did take months before I began to feel I was improving, and there were times I didn't think I ever would. I can't say I ever actually felt things "wake up", but more a gradual realization that I was doing better than I had before.

It turned out for me that I had a 2nd avm in my lumbar (lower) spine that was discovered years later, but that is pretty rare. It took a total of 3 surgeries over a 4 year period to finally obliterate both. Had I not had the surgeries I would have been paralyzed from the neck down. I began to improve much better after they finally confirmed I was "fixed" in 2012. Time is not a friend to avm's and that is where I think you have an advantage. I have talked to others here also that have gone years before they were "fixed" and the longer the wait the more difficult recovery and less you will get back.

I wish I could say that you will be back on "track" and working again soon, but each case is different. I never experienced a successful surgery and recovery as it should have been and often wonder how much better I could have done if I had. BUT even after 4 years of hell, I continue to improve. I walk around my house using walls and furniture to balance myself, I walk outside with a cane or "rollator" (check amazon), although I can walk short distances if I really put my mind to it. The worst is that over time the nerve damage causes loss of muscle that isn't being used. My body will try to compensate by using other muscles which usually leads to spasms, cramps, etc. but the more I use them the better off I am.

Sorry this is getting so long, but can't not mention the bathroom issues. Luckily, I have not had to use catheters and can partially empty my bladder on my own. Not great, but doable. Sometimes putting in a foley for a week or so can help the bladder shrink back closer to its normal size. This helped me and exercise also to keep things moving. As far as bowel issues, I have found that laxatives and enemas aren't a permanent solution and can actually cause more issues later. The only way, in my experience is to manually disimpact your bowels. I do this every other day, otherwise it takes a week to go on my own and never completely. This can also help to urinate if proper pressure is applied in certain area's. Otherwise, I cannot pee sitting down, only standing, and relaxation is the key. Check out this link:


Good luck with your recovery and let me know if I can help in any way!


Thank you so much very helpful info so happy I found this site. Again thank you for the link

It's an interesting read haha. You are welcome, we are all friends here who were brought together by this crisis in our lives. Others can give sympathy, but not really know what its like if they haven't been there. Good luck and keep us posted on your progress.

It does take time for nerves to recover. It took a couple years to regain use of my left arm after an auto accident. It was my wife, who had the AVM near the center of her brain. In the sixties, treatment was minimal compared to now. She had to live with reduced use of her left side for about three decades. Her positive attitude toward life kept her going, including two sons, now 32 and 21.
Andrew presents a solid view of what he's been and is going through physically. Each of us are different. Financially you may need legal assistance in Railroad Retirement and Social Security coverage for the disabled for periods of time and permanently. Mentally, do not worry about getting professional psychological help, even if it is just a form of therapy.
Plus, do find your faith in life. We all go through ups and downs, personally and socially. May God be with you

Charles thats for the reply very helpful. I know I have a long journey ahead of me. July 2nd had a Dr appointment pretty much told me I wont be railroading again was bummed out but Im fine. As far as financial issues im going out on a medical through the Railroad Retirement board so that in process. As far as Social Security we forfeit all state benefits working for the Railroad. All looks well just need to take it one day at a time continue with the theropy and mainly stop trying to rush thing. Again Thank You for the reply…GARY

Like the other wrote (hi Andrew my friend), there are no time limits or time windows. Spinal Dural AVM (Fistulas, many feeders like M) detected 2012, after month of wrong diagnosis. Horror, checking all out. Then a professor for neuroradioloy detected it. My nerve damage caused by the pressure myloepathie was up to T6. The AVM was about T9-T11/12. 2 embolisations, many spinal angios and two laminectomies:
1) oct 2012 - first embolisation
2) dec 2012 - second embolisation (horror)
3) dec 2012 - first laminectomy
4) june 2013 - second and final laminectomy

Between that, spinal angios checks, without glue .....

So between all this I had thrombosis, pulmonary embolism and hernia. Sideeffects. And the brown sequard syndrom (right side numb and weak, left side paralysed.

Felt like living in hell. Biggest problem for me: Bladder and bowel issues.

And now, after this long time, I am a happy man again. Perhaps more happy then before. Thankful. Cause many things changed, yes after years, still improvements!

1) Bowel problem: Every other day I use the peristeen irrigation with 400-600 ml water
2) Bladder: No cath, but using condom urinals. Great!
3) Sex: Using viagra, helps
4) Thrombosis: Ok, lifetime bloodthinner warfarin, but who cares. We are AVM survivors! That is kindergarten :-)
5) Numbness: Better and better every year. The area I feel somthing is about 5 cm more now
6) Walking: On good days 400 meters without helping wheely or rollator.

The sun shines again in my soul, and starting to live again. And as I wrote, perhaps more intensive then before. A reasong is this board here and friends like Andrew, Tina, Steven and many more.

Best wishes ! Head up !

Gary have a avm in L5 region of my spine I’ve had open back surgery and many many angio’s. I also get numbness in both legs that comes and goes the doctors can’t not give an exact reason for this only that the nerves are damaged by lack of blood or some other reason( but not physically damaged) you understand last week I just woke up and Couldn’t even put any weight on my right leg at all. I couldn’t even stand up with my 2 walking sticks I only get this about ones every 6 months and lasts for a maximum of 4 days then the 5th day ill wake up and feel ok again all beit with a stiff leg but back my my usal standard of mobility eveytime this happens I worry that it might be the final swan song for my legs and it will stay like that forever how ever I’ve had an avm for 6 years now and it comes back very strange. I don’t know if this is the same as yours but that’s what I get and know else can explain it.

i would so love to speak w/you,my Mother and you are in same boat,Exactly what you have since surgery,is my Mothers afflictions as well.If you are interested in talking,please let me know....PEARLANN ALIOTO-ROMANI....

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