Newly diagnosed and confused

Hi everyone,

I have been recently diagnosed and am very confused, AVM was found by accident looking for a cause of my other symptoms…It is located in the back part of the frontal lobe (which controls voluntary movements) and the Parietal Lobe (which causes numbness and impairs sensation on the opposite side of the body). I have a huge list and still have no answers, as they have told me the AVM is not causing any of my symptoms, they are on the same side as my AVM! It has not bled yet, they told me it’s too big and deep in the middle of my brain and there’s a 1 in 5 chance they would leave me severely disabled if they removed it… only being 36 with young children, they were not prepared to take the risk and have refered me for Gamma Knife. I am still waiting for the appointment.

I have many symptoms from numbness and pain in the left side of my face, jerking movements in the left side of my body, muscle spasms, chronic fatigue, blurred vision, headaches, muscle weakness, severe weakness in my arms, tingling, pins and needles, poor balance and co-ordination, poor concentration to poor processing of information, plus a whole load of other things, too many to list!

I have had EEG’s, ECG’s MRI’s and a Cerebral Angiogram when they found the AVM.

I am also having tests for Autonomic dysfunction, I see the neurologists again in January.

The worst thing at the moment is the pain in the left side of my face, the blurred vision, weakness, jerking and numbness around my mouth, causing me to dribble, which is rather embarrassing, plus the frequent need to wee!

I am concerned that the neurologists have found this AVM and are concentrating on that, and not looking for the cause of all these other issues.
I am concerned about the cause of my ongoing, and worsening symptoms, could the position, size and depth of this AVM be masking the cause of them? Could there be something else going on “behind” or “underneath” the tangled mess of the AVM that they cannot see on the scans? The AVM is in the middle area of the left side of my brain, it takes up a large amount of this area and goes down quite deep.

I have been feeling really bad for the last week, especially with this facial pain and numbness, I am undergoing a lot of stress at the moment, the headaches, jerks and this face stuff all get worse with stress. The symptoms have been progressive over the last 8 years. I also have 3 prolapsed discs, bulging, but not touching the spinal cord, Ehlers Danlos Syndrome, hypermobility type and possible POTS… waiting for the results on that one. My BP is around 138/96.

The only medication I am on at the moment is gabepentin 300mg 3 times a day.

Any opinions or advice gratefully recieved. I feel so lost and confused!

Welcome to the site.

I don’t have much to offer as info. I suspect that if you have had scans or MRI’s done, there’s not much chance of something hiding around or under the AVM.

The AVM is likely the most life threatening of your issues, which is why I suspect they want to treat that first. Stress (understandable) probably aggravates some of these symptoms, so anything you might do to relieve stress should help.

I wish you well.

Ron, KS

Thanks for replying.

Unfortunately i cannnot do much to relieve any of the stress! Laughter is the best medicine, but sometimes it’s so bad I can’t laugh anymore!

You see, it’s not just my health problems i am battling with, my daughter is disabled, my first son died of cancer 8 years ago and my second son is under a psychiatrist because he can’t cope with any of this! Between us all (we all have Ehlers Danlos Syndrome (EDS)) we are under 10 different hospitals and spend most my life juggling and chasing appointments, dealing with my sons difficult behaviour (he’s 11) and currently we are at Great Ormond Street Hospital with both kids in rehab physiotherapy for 2 weeks!

I’ve not slept hardley for the 2 weeks we’ve been here as we are all in a really small room together, the kids can’t sleep when they are in pain and throw themselves about all night long, so I will be glad to get home this weekend!

It really made me laugh when the neurosurgeon told to let my BP go up!

I’ve just found out my daughter has a leaky heart valve which indicates a possibility of Mitral Valve Prolapse, which is linked in with EDS

I could find out in weeks time my daughter needs eye surgery.

My daughter is also having major hip surgery soon, which will involve cutting bone from her pelvis on both sides, to graft onto hip sockets to make them bigger, both sides, fixing them with wires and pins, then cutting her thigh bones on both sides and re-angling them to fit into the sockets better and putting wires, pins and plates in to hold it all together! She’s 4 years old and this will be her 9th surgery.

Right now I am taking advantage of the play specialists in the hospital and having an hour to myself! The kids can go to the activity centre after their physio sessions. Olivia has been baking cakes, making christmas decorations and painting, whilst charlie has been playing on the xbox!

I might try relaxation CD’s or something, any suggestions greatfully recieved! :smiley:



Ron, KS said:
Welcome to the site.

I don't have much to offer as info. I suspect that if you have had scans or MRI's done, there's not much chance of something hiding around or under the AVM.

The AVM is likely the most life threatening of your issues, which is why I suspect they want to treat that first. Stress (understandable) probably aggravates some of these symptoms, so anything you might do to relieve stress should help.

I wish you well.

Ron, KS

Hi Lena,

Welcome to the site. I agree with Ron, KS that perhaps your doctors think the AVM is the most pressing issue right now. I’m a little surprised that they don’t think the AVM has anything to do with your symptoms, but then again, I don’t know anything about the area of the brain where yours is.

My goodness but you’ve got an awful lot on your plate, what with your health and then your children’s too. Is it the same daughter who is having the hip surgery and has the heart condition, or is that two daughters? Four years old and going on surgery number 9? Wow, what a little trooper she is.

It’s very fortunate that your AVM was discovered this way rather than after having a bleed, and it’s great that you at least have a treatment option available, even if it can’t safely be removed. I’m in the same boat, but I’m just so grateful that I’ve at least been a candidate for embolization. Before I got a correct diagnosis, I had been told that nothing could be done to treat my malformations. Any treatment option beats being told there are no options but to live with it, untreated.

I wish I had something useful to offer, but I can offer support and encouragement. I hope you get your gamma knife date set up soon, and I’ll be hoping your daughter’s surgery will go well, that she won’t have to have eye surgery, and that things will work out well for your son, too.

Hang in there. Sometimes we’re left with no other choice but to be troopers, but at least we have a place like AVM Survivors to come to, with others who really understand all we face and go through. That alone can be a big help.

Keep doing what you can to alleviate the stress, and be sure to take care of mom while you’re taking care of everyone else. =)

Tori

Hi Lena, Sorry to hear about your AVM adding to the already stressful situation you have. I have to agree with Ron and Tori and disagree with your doctors saying the AVM has nothing to do with your symptoms. So many of your symptoms you described line up with what AVM’s can cause. In addition per my research on this site and others, some people with spinal AVM’s or spinal injuries have other symptoms like bladder control etc. The spine is all part of the central nervous system. I do agree the AVM is important to take care of and doing so may releive some of your symptoms, but I would be getting a second opinion by another experienced AVM Neurosurgeon if I were you. The comment about your AVM not contributing to any of your symptoms just dose not make any sense to me. You and your family are in my thoughts and prayers Lena. Try to relax and have some faith, Blessing Brett

Lena, Welcome. I have to agree with others who have commented. I don’t agree with your Doctor either. My AVM is in the left frontal lobe and into the basal ganlia. I now live with many of the symptoms you have. The hardest part is finding a doctor who is well experienced at the effects of an AVM. I’ve seen 6 neuroligists and not one of them were familiar with the effects of an AVM. I asked them. The 3 neurosurgeons I saw, 2 of them believe my problems are from the AVM. However, 1 of them said my problems are either coming from the long term effect of the AVM or it’s coming from the Gamma Knife I had 3 years ago. None the less, The trick is - finding the right Doctor and hospital who can help you. I am curiouse to know of what the size is of your AVM? I was on tegratol and that worked well for me for 2 1/2 years. Then my system changed. In the past year or so, I have been on over 14 different meds. at different times. With no relief and some of them made my symptoms worst and even sent me to E.R. I am now on only a couple that help me to function better. I’m still unable to work any more but, I am able to function better at home. I know this can be struggle for you. I still have my bad days too. It does get better though.
Some of the things I had to change were: I had to switch to decaffinated coffee, I have to rest a lot, I also do my best to keep the stress level down as well. There is also some over the counter meds. I can no longer take. Anything that has caffiene, aspirine, psudo-ephedrin in it, is a definte no-no. I do cheet on the aspirin though. It’s the only thing helps me with the migrains.
I presently take: Sinequin (an anti-depressent) and Xanax (for anxiety) to keep my nervose system calm, Diaudid (for pain), and zanaflex (muscle relaxer). All other seizure meds and similars didn’t work for me any more.
Every body is different. I do believe it becomes trial and error of what will work for someone. Don’t be afraid to be persistent with you doctors, it can pay off.
I hope you find this to be helpfull.

Hi Tori,



Yes, it’s all the same daughter! I have one little girl and one surviving son, my first born son died of Neuroblastoma aged 5.



My other son had his eyes tested yesterday… amongst everything else he’s having really frequent headaches… GP says migraines… and says sometimes he struggles to read.



The optician was really concerned, whilst Charlie passed most of the tests to see if his eyes were working together properly and there was no squint detected, at times Charlie could only see half…or none of what he should be able to see!!! The optician is writing to our GP because this, accompanied by the headaches, has him really concerned! He’s told me to go back to the GP in 2 weeks, by which time they will have recieved his report… I am now worried about Charlie and what could be affecting his vision if it’s not actually his eye sight!!!

Oh… Olivia’s appointment to take the measurements in her eyes for the decision on eye surgery has been changed to February, but she still has an eye sight test this wednesday!






Tori said:

Hi Lena,

Welcome to the site. I agree with Ron, KS that perhaps your doctors think the AVM is the most pressing issue right now. I’m a little surprised that they don’t think the AVM has anything to do with your symptoms, but then again, I don’t know anything about the area of the brain where yours is.



My goodness but you’ve got an awful lot on your plate, what with your health and then your children’s too. Is it the same daughter who is having the hip surgery and has the heart condition, or is that two daughters? Four years old and going on surgery number 9? Wow, what a little trooper she is.



It’s very fortunate that your AVM was discovered this way rather than after having a bleed, and it’s great that you at least have a treatment option available, even if it can’t safely be removed. I’m in the same boat, but I’m just so grateful that I’ve at least been a candidate for embolization. Before I got a correct diagnosis, I had been told that nothing could be done to treat my malformations. Any treatment option beats being told there are no options but to live with it, untreated.



I wish I had something useful to offer, but I can offer support and encouragement. I hope you get your gamma knife date set up soon, and I’ll be hoping your daughter’s surgery will go well, that she won’t have to have eye surgery, and that things will work out well for your son, too.



Hang in there. Sometimes we’re left with no other choice but to be troopers, but at least we have a place like AVM Survivors to come to, with others who really understand all we face and go through. That alone can be a big help.



Keep doing what you can to alleviate the stress, and be sure to take care of mom while you’re taking care of everyone else. =)



Tori

Hi Ben,

All I was told was “it’s bigger than average and too large and too deep for open brain surgery”

I have no idea how big that is… it looked pretty big in comparrison to pictures I’ve seen on the internet… it was shaped like a beetroot or something with a large root coming down from it!



Ben Morrell said:
Lena, Welcome. I have to agree with others who have commented. I don't agree with your Doctor either. My AVM is in the left frontal lobe and into the basal ganlia. I now live with many of the symptoms you have. The hardest part is finding a doctor who is well experienced at the effects of an AVM. I've seen 6 neuroligists and not one of them were familiar with the effects of an AVM. I asked them. The 3 neurosurgeons I saw, 2 of them believe my problems are from the AVM. However, 1 of them said my problems are either coming from the long term effect of the AVM or it's coming from the Gamma Knife I had 3 years ago. None the less, The trick is - finding the right Doctor and hospital who can help you. I am curiouse to know of what the size is of your AVM? I was on tegratol and that worked well for me for 2 1/2 years. Then my system changed. In the past year or so, I have been on over 14 different meds. at different times. With no relief and some of them made my symptoms worst and even sent me to E.R. I am now on only a couple that help me to function better. I'm still unable to work any more but, I am able to function better at home. I know this can be struggle for you. I still have my bad days too. It does get better though.
Some of the things I had to change were: I had to switch to decaffinated coffee, I have to rest a lot, I also do my best to keep the stress level down as well. There is also some over the counter meds. I can no longer take. Anything that has caffiene, aspirine, psudo-ephedrin in it, is a definte no-no. I do cheet on the aspirin though. It's the only thing helps me with the migrains.
I presently take: Sinequin (an anti-depressent) and Xanax (for anxiety) to keep my nervose system calm, Diaudid (for pain), and zanaflex (muscle relaxer). All other seizure meds and similars didn't work for me any more.
Every body is different. I do believe it becomes trial and error of what will work for someone. Don't be afraid to be persistent with you doctors, it can pay off.
I hope you find this to be helpfull.

Hi Lena,
I also agree with what others have said and wish you the best in finding an experienced neurosurgeon that knows about AVMs. Every AVM is unique, but I want to share that I also have an AVM in the left pareital/frontal region and that when mine “acts up” or I have little seizures, the right side of my face is numb, it droops more than normal (like Bell’s Palsy), I can’t talk, I drool, my face has spasms and my eyesight does weird things. I have had chronic fatigue as well which a neurosurgeon just convinced me is a symptom of the AVM–after all these years of not relating the fatigue with the AVM, now I believe him. My right arm has a numbness that starts in my right hand and marches up my arm–but depending on the placement near the pareital lobe, any kind of motor weakness could be part of the symptom of the AVM. It sounds like YOUR AVM is close the facial part of the Pareital lobe and stress of any kind might exacerbate the symptoms. I can really relate to the stress of having little kids and worrying about your own ability to care for them. I hope you find a doctor who can give you the feeling of trust. Let me know if I can help–it sounds like we have similar placements and symptoms of our AVMs. Warm regards, Libby

Welcome Lena,
I don’t have anything new to add. Just wanted you to know there are people who care about what you are going through. It sounds like you have some unbelievable challenges in your life. I hope this website can bring you answers and some support that you need. You will be in my prayers. Take care, Sue

Thanks Libby,

I am confused though because the pain and numbness in my face is on the left… not the right. :confused:

But it sounds just like yours!

Not sure i have the energy to follow it through, with everything else going on with me and the kids, but if I were to seek a second opinion, how would I do that on the NHS and where in the UK is the best place to go?



Libby Hoagland Berridge said:
Hi Lena,
I also agree with what others have said and wish you the best in finding an experienced neurosurgeon that knows about AVMs. Every AVM is unique, but I want to share that I also have an AVM in the left pareital/frontal region and that when mine "acts up" or I have little seizures, the right side of my face is numb, it droops more than normal (like Bell's Palsy), I can't talk, I drool, my face has spasms and my eyesight does weird things. I have had chronic fatigue as well which a neurosurgeon just convinced me is a symptom of the AVM--after all these years of not relating the fatigue with the AVM, now I believe him. My right arm has a numbness that starts in my right hand and marches up my arm--but depending on the placement near the pareital lobe, any kind of motor weakness could be part of the symptom of the AVM. It sounds like YOUR AVM is close the facial part of the Pareital lobe and stress of any kind might exacerbate the symptoms. I can really relate to the stress of having little kids and worrying about your own ability to care for them. I hope you find a doctor who can give you the feeling of trust. Let me know if I can help--it sounds like we have similar placements and symptoms of our AVMs. Warm regards, Libby

Thank you. X



Sue Roth said:
Welcome Lena,
I don't have anything new to add. Just wanted you to know there are people who care about what you are going through. It sounds like you have some unbelievable challenges in your life. I hope this website can bring you answers and some support that you need. You will be in my prayers. Take care, Sue

Hi Lena,

I had a AVM hemorrhage on Aug 2010. I was divested! I was only 24 years old and was healthy (little did I know) . In Dec 2010, I had gamma knife and lost a patch of hair. It was really scary. It was in my parietal/temporal lobe and effected whole right side. The speech and numbness was the worst. I also am have issues with spelling and grammar. Though gamma knife the areas is “shutting down” but I still have problems with my right side. I know was your going though. I know it is hard but stay strong. Currently I’m and Keppra and Zanafelx but nothing is helping with the numbness…

Anjela