I went to the neurosurgeon and he said it appears to be a fistula. The chances of rupture are greater and his course of treatment is probe via an artery and glue it up. Does anyone know the name of this procedure? The seizure meds make me forget things I normally remember. He also said it would take about 3 times. Risk is very low compared to doing nothing. I have one son and his father passed away years ago. It's important I see him after his finals from college.
In the meantime, I still have to go for an emg this week to see what has caused the foot drop. The CVM is on the left and the nerve damage to my leg is also left so it's not related.
If they go through the groin, it's called embolization.
I'm not sure what a fistula is, so it might be something different.
Chari had foot drop following one embolization. She lived with a foot appliance for 12 or so years, then went to a foot/ankle surgeon. He did a procedure to split a tendon. Part of it he anchored to the side of her foot to hold it up, and he shortened it some, so she can't point her toes down, but it also means she doesn't trip over it. Worked great for her, and if you look into it, I'd not wait more than a yr or two. She waited so long, it affected her gait (walking), and even with the foot/ankle fixed, she still has back pain and trouble walking fully upright.
Her right calf also atrophied some, which affected the walking, and with nerve damage, hindered her walk. She just this year got an electronic stimulator called a walkaid. It really has helped her gait. Bad news is it's $5K and not covered by insurance. But it really did help. The place she got it let her try out a loaner for 2 wks to see if it would help.
Best wishes,
Ron, KS
Hello Jappy
Did you have an MRA? I have a Dural Fistula on my left side and had my first angiogram and embolism at Stanford this January by Dr. Michael Marks. They said I had retrograde blood flow which was bad and I was hearing the whooshing all the time and not getting much sleep. Are you hearing any whooshing? What meds are you on? I was on Topomax at first and was not doing well on it and they switched me to gabapetin which works better for me.
Angela
I'm so happy to speak to you. This is so foreign and impossible to relate to. We seem to have the same diagnosis. I had both an MRI and an MRA last week. A year and a half ago I went to an ENT for the annoying wooshing sound. It was like a constant heartbeat in my left ear which got louder at night. I also felt vertigo that came and went and I fell twice. I learned not to look to the left. The doctor blew me off after an ultrasound came back normal. I also would occasionally lose hearing on that side too, or hear echoes. Not sure about what retrograde blood flow means but the condition does pull blood away from the right side. Is this what you mean? It is an added "worst" as the veins suck in blood. A rupture is more likely to happen. Right now I am on Keppra, twice a day. It makes me very tired and somewhat disoriented. But it's been a week so I guess I should wait a bit before complaining. I do still get the wooshing sound but not as loud. I have not had any more episodes of language loss either. Can you tell me how your angiogram and embolism went? Will you be needing two more and how are you feeling now? Also did you have general anesthesia?
Sonia
Whoosing-- Like that term and it is descriptive. The official name is 'bruit'. No I didn't know what it was either, until Chari's AVM presented. The first DRs gave me their stethoscope and I could hear it too.
Chari had heard that "noise" all her life, and figured everyone had that sound in their head...............
As the embos occurred, her bruit became more silent. With the final surgery to remove the last of the AVM, it was SILENCED!
Strangely, it bothered her more NOT hearing it. The sound had always been a comfort and helped her go to sleep at night. It took her several months to get used to it being gone.
Best wishes,
Ron,KS
The difference between an AVM and AVF is that the mass is mostly on the outside of the brain. Also it is not formed since birth but instead after an injury or some mystery. The odds of rupture increase because of the flow of blood can be like a suction (or maybe the opposite of that) to the normal side. The procedure is very low risk compared to what the consequences of letting time pass.
My foot drop is mixed up in this somewhere and I'll know more this week. I don't believe I'm as not as bad off as Chari. Mine is on the left side of my leg with paralysis going down the ankle to the top and between my big toe and second toe. I can move about but can not point upward when standing. I can control the underside but if I walk too fast, I do trip and fall. I have fallen on steps also so anyone with this really has to be careful. I have constant knee and back pain. Why wasn't her surgery covered? I feel like I'm moving about like some gimp lately. I'm called Miss Congeniality because of my falling. While that is funny, it's quite embarrassing all the same. The doctor has told me not to let this go or it will be permanent. I can't afford the big co pay for the PT so I do the exercises on my own until I know where the nerve is pinched...or whatever.
Need to clarify: the surgery as well as foot appliances she wore for years were covered.
What was not covered was buying/fitting for the new Walk Aid, the electronic stimulation device. I don't know if they called it experimental or elective or what.
The other thing (and I've posted about it previously), if you go to a physical therapist, you will plateau and they will cut you off. We found a physical trainer at our rec center that wasn't just a hard body--she KNEW muscles and body structure. Chari was working with her, and the trainer said "If you will give me permission to go look at your PT records, that way I can be sure to build a workout plan for you that takes advantage of the leg muscles that still work for you. We can build them up to compensate for your bad ones."
She was absolutely right. Worked wonders. So that is something that you might want to consider. Much cheaper for private training than PT.
Hope this helps.
ron, ks
Hi Sonia
Glad to speak to you- sorry about your ENT they only know what they know I guess I was lucky since I had a massive rare stroke last March and was seeing a top stroke neuro then when I told him about the bruit and getting light headed he ordered the MRA and I got to meet with Dr. Marks who said that from the stroke my left transverse sigmod vein was gone..I guess some people are born with it but mine was from having five blood clots in my brain which would not let the blood flow or spinal fluid flow out of my head so the added pressure caused the stroke. Luckily I was at Stanford and it still took three days for them to figure it out its called cerebral venous sinous thrombosis. Anyway my angiogram and embolism went well. I had 30 connections on the artery side they were able to get to 29 and one connection on the vein side which they left - it took 7 hours but it is normally 4-6 hours. I stopped hearing the sound right away. Yes you are at risk of a rupture and even though you will have head pain from the surgery its worth the peace of mind. Make sure to drink lots of water. The angiogram is the best way for the doctors to tell what is really going on and hopefully they can do the embolism at the same time. Dr Marks wants to go back in for an angiogram to check the work in a few months but I just feel like I need a break and we agreed that if I started to hear anything I would go back this year but otherwise I would go back next year. I am also afraid of loosing my job if I dont go back to work soon. I would give yourself two weeks on the meds and if you are still too tired ask to be put on something else. Are you working? I am feeling better but had to get a nerve block and now botox shots but I think its just cause of the stroke in the veins have lots of nerves and then having the fistula back to back. FOr the angiogram they want you awake for the beginning and they knock you out for the embolism. You have lots of nerves on the surface. Are you scheduled? if so what hospital?
Angela
Thanks, Ron. My insurance will allow 25 visits per year but it's $35 a pop and honestly, I would need at least 2 per week. I do have my PT records and trying to keep up on my own. The stimulator is a wonderful help but my insurance company has a deaf ear when it comes marketing gadgets. I'm trying to stick with the exercises and have hidden my flip flops to avoid fractures until I find the real cause of this.
My ENT could mot hear it and it was so loud in my head that I could hardly hear his worthless blabber.
Some days the sound is louder and I could feel it like a jerking pulse in my ear. If watching tv, I would hear normal volume in my right ear, and a one second delay in my left ear. It was akin to being at a party with many voices speaking at once. Then top that off with vertigo. Thank goodness it's not that bad now. :)
I just can't in my right mind go and have this procedure done without telling sitting down with my son and explaining what is happening. He only has me and right now he is getting ready for finals. He attends law school 3000 miles away. He is coming to visit me before he begins his internship. That will be sometime in May. So by the end of April I can schedule the procedure for the end of May.
Can you tell me what recovery time or issues you had after the procedure? My doctor has told me it might take 3 times depending on how many connections. I have quit working for now and have a supportive new husband. I hope to be able to start a home business but right now, I can't focus on things. Not due to worry, but because I truly feel in a fog.
By the way, at any time did you feel that the smell of foods you enjoyed previously now smell unappetizing? I can't seem to swallow anything that isn't spicy or sweet. I've lost 25 lbs since December. I have been drinking a lot of water because my skin is getting nasty looking (lizard skin but it's not funny) and my glucose and cholesterol levels are very high. Does your insurance cover the botox?
Hello
I can understand you wanting to wait to tell your son so he does not worry. I was in the hospital overnight and really tired for about two weeks. Make sure to get some pain meds before you leave the hospital or ahead of time. I used ice packs mainly due to the pain pills were making me vomit. You need time to heal and everyone is different. My husband kept the phone off and called people or emailed to let them know how I was doing. The doctors will be able to tell you more after your angiogram and how many connections or feeders you have. Yes it is so hard to focus and I did not have much of an appetite. But you will get better and make sure you eat healthy and get protein every day we need it for our brains. Also if you can get some coconut oil you can find it online at www.amazon.com cheapest or at whole foods. It is also good for our brains. Their is a great book Coconut cures but it is also great for our skin. I use as a lotion am and pm and use it to take my makeup off. Did you have a stroke? That could explain your appetite esp if it was in the thylmas area of your brain. Yes my insurance paid for the botox. I have Cigna PPO
Angela
Thank you Angela. Can you tell me where your pain was worst? I am really good tolerating pain but just horrible when the symptoms are mysterious.
My PT believed it was a stroke but my doctor sees no signs. We still don't know what has caused the foot drop but we sure are finding lots of shocking surprises while trying to find out.
As for the coconut oil. Is this a capsule or for rubbing on? There are a thousand different types on Amazon.
Hope you are feeling well today.
Hello
This is brand of coconut oil that I bought Nutiva Certified Organic Extra Virgin Coconut and I know there are capsules but I got a tub of it so I can cook with it and I just put some in my tea. I took some out and put it in a tupperware container in the bathroom so my husband and I use it as a lotion
I have a high tolerance of pain and was for me the pain was intense in recovery by my left temple. Which I was not expecting. When they do the angiogram they look on both sides of your head so I was surprised that I was sore on both sides of my head and many people experience pain in their occipital lobes/nerves. I have had that since the surgery and they did nerve blocks which lasted three weeks and then they just did botox shots. It has not
been a huge relief but some . http://occipitalneuralgia.org/
Hopefully this wont happen to you.
Make sure you have lots of ice gel packs at home and dont hestitate to ask in recovery for ice packs. You will need to rest and fluids. I would think I was better and go to do laundry or something and then be exhausted, It took about two weeks to where I could get up and shower and do a few errands. And then I would have a bad day or two and be in bed. But again I think it was due to the stroke and then having this on top.
You can have small strokes called TIA's that dont show up on scans. Did you have a car accident or fall or a neck adjustment before your foot drop?
Angela
Hi Jappy! My neurosurgeon calls mine an AVM and the Intervenious Radiologist calls it and fistula. Mine is located in the brain stem and I have had 3 embolizations, 1 surgery and having surgery on the 27th again. With the first embolization they told me there was a 3% chance of a stroke and I hit the 3%. It hit my whole left side and am very fortunate there is no drooping and I did not need physical therapy. Just looking at me no one would ever know I had one.
I also have the "whooshing" and it seems to get worse with low air pressure or when I have a cold. Gets to where at times it drives me nuts and I have to sleep on the couch when it's bad so the TV will drown out the noise. I also have the vertigo which acts up from time to time. They were able to get the blood flow stopped with my second procedure and the whooshing or bruit stopped.
I do understand you not wanting to have your surgery prior to talking to your son. With my procedures I was in the hospital 2 days each.
Cheryl
Thank you for sharing. It sounds about the same as my condition too. The surgeon did say about 3 embolizations. When the whooshing is annoying, I also sleep with my tv on. I'm trying to hope for the best. As for my son, I just can't worry him before finals and how on earth can I have brain surgery and not tell him?! Some people don't get this but women/moms do. When did you find out about your AVM?
Right now I'm having a vision problem but I don't want to forget to thank you. So I have not been told any of this yet and for some reason, I'm imagining I would get up and walk out. I wake up with a headache most every day but what you are telling me sounds severe.
My PT thought it was a TIA but like you said, it does not show up. The confusion is that this is on my left temporal lobe and my left leg which does not make sense. But....since it affects blood flow to the right side, I believe there is a connection. I just want my leg fixed as I fall without warning and that just puts me under a lot of distress. This Friday I go for an EMG and I hope the answer is there. I have a surgeon that specializes in just these disorders and I can't get exact answers to anything.
The only thing happened right before my foot drop was that I was unable to read signs on the wall of a store. I thought it was a foreign language. It happened again two weeks ago. My doctor said this is a seizure just like the vision and the vertigo, etc. Not a stroke. I agree with that as it's not a one time thing. But see, the first time it happened was an ordeal, I could hardly speak or think and became very tired. Lasted about 20 minutes. My problem is left sided but I'm also a lefty.
Do you know if there are any doctors on this site?
I saw the coconut oil you mentioned on Amazon. It was one of the first listed. :)
There is still much that the doctors dont know about the brain. Now they are finding that there are other areas of your brain that controls language. When I had my stroke I could not talk and I asked my speech therapist why they dont try to get you to write or put a laptop in front of you to see if you can type the words. I could see the words but could not say them, When I started to be able to talk it was like lifting heavy weights in my brain. Still I have issues with using the correct words. Then after the angio/embolism I could not talk again. But I was able to do sign language with my right hand and I was able to write and even in french which is weird cause I dont speak it I just studied it in school. I agree with you that it could be the blood flow. Have they done an MRV? Its to show the veins in our brain and that is how the figured out I had five blood clots in my brain causing the stroke.
I dont think there are any doctors on this site I did tell my doctors about it but they did not seem to know about it.
Its a God send to have this site and people are so wonderful and open about their experiences. I learned more from here about what was going on and what could happen. The doctors dont seem to worry about the pain and the sleep. The stroke neuros told me that normally when people have a stroke there is not much pain in the brain but if its in the veins there are lots of nerves so you get more pain. I have a great pain neuro. I have also tried acupunture but it did not do anything but make me tired.
Have they made sure you dont have a blood clot in your leg?
Are you on cholesterol meds?
I also had to sleep with the tv on!
Angela
I found out in August of 09. I lost my hearing in my left ear and after I got my hearing back, through steroid treatment, the ENT Dr did a MRI to see if I had a tumor on the nerve which Thank God I didn't) and they found this.
I totally understand your need to tell your son. Are you talking of telling him during spring break? You might want to talk to your Dr. though so he can go ahead and get you scheduled for surgery and get the wheels in motion for after you talk to your son. To give you a little more info, my neurosurgeon told me the chances of an AVM rupturing go up 10% per yr and the chances of an anorism rupturing go up 3% per year. This is why when they find a person has one, they react so quickly. According to him I'm in the 80 percentile range. I hope this doesn't scare you but I just want to show your how important it is not to wait too long.
I only have one son and he's in college on the west coast. His father died when he was only 3 years old. It has been just the two of us. I have remarried since but he has been living where he goes to school and we meet a couple of times a year. He is studying for finals and I need him to think of nothing else but that right now. When I see him in May I can tell him but then reassure him to the excellent results. So while I do understand I am taking a risk, I just can't call him on the phone and end the conversation oh by the way, here are where my passwords are hidden, I have to go get brain surgery tomorrow.
The surgeon was not thrilled but since it does take some time to put this all together with the hospital and his team (that part I do like), a few weeks should be fine.
I will have a lot to be thankful for when this is over.