AVM Research Fund Blog

Replies: 29 Comments

Case of 5 Years Old Child - Master Kavan.
He is my son.
He unconscious due to sudden stroke on 22.11.06 at Mid night.
In CT & MRI doctors came to know about AVM.9 days of Hospitalization & now he is okay & seems normal. As per doctor CT will be taken after 6 weeks. Bleeding cause a clotting in the LH side of mind.
Please let me know what should I do now?
Involvement of risk in future tratment & expense in the same.
Whech is the best place to take treatment?
Any rebleeding possible?

If yes then what can happen?

Sandip Mehta said @ 12/18/2006 06:19 AM EST

My friend is a 43 year old female recently diagnosed with AVM in her frontal lobe. She had a strong seizure on August 28th and was diagnosed after a ct scan and mri. She is on 100 mg of dilantin 3 times a day and it was recommended that she have emboliziation and surgery. She will be receiving a follow up appt to happen sometime in the next couple of weeks to talk more about this and review her options again. She was told the avm is about the size of a ping pong ball. We would like to know about the dangers of the surgery and liklihood of more seizures/bleeding/anthing we aren't aware of until the dr visit.

LittleFeather said @ 09/03/2006 12:19 PM EST

I am been diagnose with a avm last year june, it is about 2.5 - 3 cm.
I already had 3 embolizations and gonne get my 4 th one in October. My Dr plan to operate after this one and remove the avm. The avm is at the back of my head on the left side. I just wanne know more about the operation and recovery and dangers. Age : 37. Thanks, hope you can help me.

HANNIE WEISS said @ 08/31/2006 05:20 AM EST

hello dear,

i am 37 man
i have an Brain AVM in my write side it's size 4- 5 in the angogram result it's hapen to me in january 2004 since that to now i am taking atenelol 25m daily, and now in march i had made embolisation they treat 1/3 after that a have feel pain pull head eche for 10 days,
after that it's reduce the head ache than before, now also i have another apointment for embolisation,
so what can you advice me and what is my fiture, do you think avm it can obliterate by embolisation and what is the risk of the embo.
and how is life with avm? deo you know same 1 heal from it,

i hope to understand me what i mean,

thanks a lot

tedros said @ 07/12/2006 11:17 AM EST

I AM TESFA MICHAEL

i have an brain AVM it was bleed
in january 2004, it's size 4-5 c
in the write side in my head,
since 2004 till now i am taking atenelol 25 m,

so now what can you advice me what treatment is safer , doctor told me
embolisation, But how is it safety and what it can have a risk and what is my fiture? do you think it
can obliteret AVM by embolisation?

i hope to understand my situation and to tell me your helpfull advece,

Thanks a lot

MICHAEL said @ 07/12/2006 10:42 AM EST

I am doing some research regarding AVM's and benign brain tumors for my father. He was admitted on Monday here in San Diego (Grossmont Hospital) with stroke-like symptoms. After 5 days of testing (MRI and Cerebral Angiogram) they found 2 things in his brain and he is an otherwise healthy 62 year old male. Normal weight range, non-smoker and only takes Lipitor to monitor cholesterol.

1. A 1-2 cm benign tumor on the right side near the base of his skull.
2. A non-bleeding 8cm AVM on the left side of his brain.

We are in the process of picking between 2 surgeons because we will be immediately removing both the mass and AVM due to the seizure that it caused this week. We just have to wait until he sees the ophthalmologist next week first because the tumor may be touching the optical nerve.

We wanted to get some additional general opinions on the subject because one surgeon is adamant that he can do one surgery for 5-6 hours and repair both problems at once and the other is adamant that he would only perform two separate surgeries (about 6 weeks apart) because he is not comfortable having the brain exposed fro 5-6 hours and in case one side or the other swells after surgery, he doesn't want both sides swelling at once and what he called "catastrophic" event occurring at that point.

I understand that you cannot give medical advice and that you have not seen my dad's charts. But in your experience, would you feel comfortable performing one surgery on 2 different areas of the brain or would you want to divide it into 2 separate surgeries?

I appreciate your time. We are trying to make the best educated decision possible. Out of convenience we would of course like to get it all done in one surgery, but if there are risk factors with that we would do 2 surgeries.

I look forward to hearing from you.

Kari

Kari said @ 06/30/2006 10:22 PM EST

My sisters son tony had diagnosed as an AVM patient 4yrs back and he undergone gamaknife therapy for two times.is it curable with that.if any other treatment is possible?Now he had one attack of head ache, vomiting, and palpitation?what is the next choice of treatment?

jinistephen said @ 06/10/2006 04:41 PM EST

My mother is going to see a doc at Emeory for a AVM in her brain stem. Can you tell me the name of the best surgens and should we take her out of state for a better one if there is not a good one in Georiga? She has had headaches and back and spine problems for years and they just found this recently. Also what treatment should we expect and should I have my husband come home from deployment. In other words what are her chances with this type of AVM? Thank you,
April

April said @ 05/07/2006 09:53 PM EST

I had an occipital lesionectomy 10 weeks ago to remove my avm and an area of cerebral necrosis which developed after radio surgery. I had become an untreatable epileptic due to the necrosis. I now have a hemianopia although I could see directly after surgery (I think). My question is: Is it possible to regain this sight? I am wondering if another part of the visual cortex/pathway will take over? My surgeon is considering more surgery as I still have around 20 seizures per day. I would prefer to cope with them if there was any chance of my vision improving. What do you think? Thanks
Rosie

Rosie millar said @ 05/07/2006 08:39 PM EST

I am a 25 year old woman with one child. I have an avm. They gave me until I was 16 to live, but as you can tell I have lived past this. My AVM is considered to be inoperable. My question is how long can a person who has this disorder live without Surgery?

Crystale Kohart said @ 04/30/2006 05:14 PM EST

I was diagnoised with an avm in 1994 after having a grand mal seizure while driving to work. After mri's and finally an angiogram my condition was clear and a variety of treatments was suggested to alleviate the avm. At the time brain surgery seemed a drastic measure to me having had only one seizure so I decided to wait and see. In 1998 I experinced another grand mal seizure while at the gas pump, this time I was paying attention. My neurosurgeon suggested another angiogram which showed the same condition, this time my insurance was gone and surgery was not an option. Now things have changed again with my insurance and soon I'll have coverage over pre-existing conditions. My symptoms as of late have been more noticible. I take tegretol 3x a day and
tylenol #3 2x a day for my symptoms which include headaches numbness in my left hand and nausea.I find my position as a casino dealer increasingly difficult if not impossible to cope with although I'm a p/t worker, I 'm depressed and feel as though I'm hanging on to the world by a string. I feel guilty for being this way. If not for my family I don't think I could have lasted this long ! I fear I will cause them hardship. Thanks for the sounding board. Robyn

Robyn Stevens said @ 04/29/2006 01:52 AM EST

I was diagnosted with an AVM about two weeks ago. All started upon arrival after a long flight to Brazil, I started having continuous headache and nausea and I tought it could only be sinus infection.
I went to my primary doctor and was treated for that, antibiotic and allergy medicine, did not get any better so I went to a ENT doctor that also prescribed me with antibiotic and anti dizzines medicine. I still did not get better, actually started getting worse.
I started being unable to stand on my feet for any period of time that the headaches got worse and I felt very debilited. I went back to my Ent doctor and he sent me to have a ct scan that showed signs of an AVM with some calcification due to previous bleeding, so I was told to have an MRI.
The MRI confirmed the findings and I was sent to a neurosurgeon, but the neurosurgeon that I last saw told me that he does not treat AVM and reffered me to a specialist in the area, and he also told me that the symptoms I am having are not from the AVM.
I will not see the specialist untill the 3rd of may. I was able to get off from work and I am resting at home since laying is what aliviates the symptoms.
Should I be looking for another doctor in the meanwhile for my symptoms.

Maria from Atlanta

Maria Sa said @ 04/28/2006 11:29 AM EST

Hi, I was diagnosed with a Brain AVM in September of 2000. At the time, I had recently overcame a case of elevated pressure in my optic nerves. Before I was diagnosed, I was having episodes of tingles in my hands and feet. At one point I lost feeling on one side of my tongue. In addition, when I was diagnosed, I had a proturding, extremely red left eye that appeared as if it was going to pop out of the socket. Since this point in time, I have had 15-16 embolizations, and my symptoms have subsided. Fortunetly, after my last procedure, my doctor told me my treatment was nearly complete but not complete. Because of hardship, I have not been able to complete my embolization treatments. My question to you is if I were to seek out irradiation thearapy for my AVM, would I be able to benefit, and if I do not, do you think that my AVM will subside in itself? I would like to avoid another embolization IF POSSIBLE, as those surgeries have left me slightly disfigured. Regardless, I am thanlful for the fact that I hold stable health through what is nearly six years in this ordeal.

Ikee from Delaware.

Ikee said @ 04/23/2006 05:09 PM EST

I was diagnosed with an AVM at 18 after suffering a brain haemorrage. I have had subsquently 1 more brain haemorrage (21) and two strokes (28 & 30). I have been left with epilepsy, weakness down my leftside, am partially sighted in my left eye, can not walk unaided and short term memory loss. I have had radiation treatment and surgery and have been told now that there is nothing more that can be done for me. I have been told it is almost a certainty that i will have another stroke and that i will get worse as time continues. Is there anything else i can do? has anybody had any unconventional treatment?

Emma in England said @ 04/19/2006 08:26 AM EST

Dear sir
last August I had 1 operation of an embolisation on my avm and due to the way I was after the embolisation I was told that I could not have this type of treatment again.
I was left with speech slurring, hair loss on the back of my head, numbness down the left side of my face, dizziness, imbalance, tremor in my mouth and side of my head that then causes my right hand to shake for about 15 mins, also iI am unable to write. Is this normal and can you tell me if there is any help I can get.
Yours Sincerely
Mrs PA Owen

mrs pauline owen said @ 04/18/2006 07:06 AM EST

I have had a MRI & MRA because of terrible headaches and eye pain.
And I have a terrible smell in my head. The finding are that I have venous angioma in the center of my brain. I was told in the report that I need to see a Neurosurgeon but because I am on Medicaid my Doctor can not find me a Neurosurgeon who will take me in.
Could you please tell me how dangerous this could be for me.
And could you please give me a suggestion on how we can find me a Neurosurgeon.
Thank you so much,
Lisa

Also could you please tell me the symptoms of a bleed.

Lisa Esse said @ 04/05/2006 12:25 PM EST

Dr. Sir (or) Mam,

I have reviewed the Aneurysm & AVM support site & AVM & Neurological Research Fund site. The symptoms of AVM match things I've gone through. My excrutiating headaches can last up to 10 days
and I always having a "wooshing" type of sound with them. I have passed out and been told that they were possibly mini seizures. I have papilledema and swollen optic nerves. I often gets so dizzy that the room feels as though it's spinning. I have difficulty walking at times also. My CT scans and one MRI scan have shown nothing. I have been taking zonegran, a seizure medication, since June and it seems to help. All the doctors and neurologists that I have seen always state "It's just a migraine". Do you have any suggestions, opinions, or wisdom that could help me? Thanks so much for taking the time to read and reply to my e-mail. It means so much. This has been going on for 3 years now, since I was the later of 26. I also had a miscarriage at the age of 27 after having a perfectly normal, healthy child at age 25. I am now 29. Thanks!

Sincerely,

Shannon Snodgrass
shannonsnodgrass@yahoo.com

Shannon Snodgrass said @ 04/03/2006 06:40 PM EST

Hello, my 8 week old son Charlie has been diagnosed with a cerebral AVM please can you send me any information you can so that he can have the best treatment for him, I am currently waiting for the doctor we have been referred to, to come back of holiday so we can get him sorted out, can you please reccomend anything to help him. I have tried to find some information about other families with babies with AVM but Im finding it difficult to find any information anywhere.My address is 11 Wetherfell Close, Ingleby Barwick, Stockton on Tees, England

Kathryn Lane said @ 03/31/2006 01:43 PM EST

How effective & permanent are the embolization materials used now?

Bev said @ 03/26/2006 02:01 AM EST

I may be repeating this question because Im not sure I was on the right section. I have seen a neurolight who sent me to a neurosurgon, he recommends that i do nothing because of the location deep in the middle of my brain, I have (all) the phsical symptoms that go with a avm my avm 3 years ago was one and a half inchs long and one half inch wide. I resently moved to another state and have seen another neurolight who will be reviewing my new cat scan because I went to the hospital thinking I was having a bleed although I am and have been having mini strokes. However I am going through a stressful time with social security they believe I have been diabled by my avm but that it will not effect me 12 months out of the year. I explained my same symptoms as befor to this new doctor and he believes it is stree related and not the avm. I first discovered my avm three years ago because of the very same symptoms after going to the hospital with them I had no stress then. how can I know that depression is unrelated to my avm, i disagree with him but have no insurance to seak another doctor.

karen pearce said @ 02/10/2006 04:56 PM EST

I have seen 2 neuroologist and one surgeon. i have all the symptoms of the physical changes.I have had a mri and it was confirmed one and a half inches long and one half inch wide in the middle of my brain deep> It was recommmended to leave it alone. My problem! Two say my symptoms are not being caused by it, they say it is depression. I have applied for social security dis. They agree Iv had strokes and other problems from it but I am not disabled from this 12 months out of the year. Am I crazy or is this avm doing this?

karen pearce said @ 02/10/2006 03:44 PM EST

I was in a car wreak about a 1 year 1/2 a go. I keet getting worse start falling over and started studering. 6 weeks later AVM found in my brain. Gamma knifed a year a go. I have been having eye pain since and migrans. Looking for tips on how to get the headackes to stop.

Second any one doing/has done resarch on headinpacts and AVMs?

Thanks(looking to get back in life)
Daniel A Sadler

Daniel A Sadler said @ 02/03/2006 03:13 AM EST

Shocked and Concerned for One of My BEST BEST FRIENDS..!!!! Joanne lives in Bethel, NY (Woodstock)....She is 36 yrs. old, and has AVM in her brainstem which ruptured causing a subachnoid bleed. Jo spent two weeks in Neuro ICU at Westchester Medical Center in Valhalla, NY. On Dec.7, 2004, Jo had Steriotactic Radio Brain Surgery. The location of the AVM was inoperable. SRB Surgery is direct spot radiation to the AVM. It's been 14 months since the surgery,and Jo is suffering from numerous neurological symptoms, ranging from,and not limited to.. vertigo...unability to walk due to balance problems...crainial nerves 1-7 are damaged causing total left side facial paralysis...dificulty swallowing..and she is unable to close her left eye..not even to sleep at night!!! She has been my best friend since we were 15 yrs. old. I live in Port Charlotte Florida. I saw the site for AVM research which led me to this""Ask The Neurosurgeon"" page. I saw Sarrasota as the P.O. Box for this""In memory of Leslie Munzer"" site. Is there a BETTER facility here in Florida for the treatment and/or long term care of this? I can accomidate Joanne, and her husband, Gordy, and their son,Michael if need be, while they seek medical advice about her condition here in Sarrasota, one hour from my home, be it long term,or short term. So PLEASE...She only got married Oct.1st,2005. And she has accepted Michael as her own son, ( his Mom abandoned him and Gordy years ago.) I will help her any way I can. Send me..or her Mom..Pat Foyder (Casey1938@aol.com ) all info you have. I hope you can help us. Thank You Sincerely, Vicki DeMarino (MizVicki22@yahoo.com)

Vicki DeMarino said @ 02/01/2006 01:50 PM EST

hi please let me know if you think that a stroke in your back that damage you spinal cord is the same as an AVM. I am paralyzed waist down T 10 spinal cord injury. i did not have any bleeds nor did i have a seisure. if you can please give me something to go on.

cheryl said @ 01/16/2006 03:10 PM EST

My Grandpa has an AVM and they found it about four years ago and just yesterday we thought that he had a stroke. Well after several tests they found that it was not a stroke and that it had to do with his AVM which is what we were all afraid of. The doctors think that his AVM has changed, maybe gotten bigger, and is pushing on a nerve which is causing weakness on his right side. Today thy are going to run some dye up one of his viens and shoot it up to his brain to see what is going on. They will also be contacting a neurologist in San Francisco who four years ago looked at his pictures and case. The neurologist in San Francisco told the doctors here in Spokane not to touch it because they had never seen an AVM as big as his and that if they tried to do surgery on it that he would stroke out on the table.

I don't fully understand what an AVM is which is making it hard for me to understand what is going on right know. Can you please help me understand what an AVM is and maybe you could help shine some light on this situation.

Shawna Nelson said @ 01/11/2006 02:02 PM EST

WANTED TO FIND OUT IF WE COULD GET A SECOND OPINION ON OUR 10 YEAR OLD SON TO RULE OUT AVM, HE IS CURRENTLY AT CHILDRENS HOS, IN PITTSBURBH PA. HAS HAD TWO MRI'S RUN ONE WITH CONTRAST AND ONE WITHOUT. PHONE 304-797-7012 SO FAR WE WERE TOLD CHARI MALFORMATION WAS BORDERLINE AND ANNUAL MRI SHOULD BE DONE?

MLITTELL@WEIR.NET said @ 12/12/2005 05:57 PM EST

I am 34, and was diagnosed with an avm this avm I have seen three neurosurgeons so far the first one said that I can live forever with this avm with very low risk of having a stroke, that he doesn't recommend surgery because it is very risky, the second one said that he recommends surgery but if I dicide not to that I will be O.K. for many many years, the third one says that he definitely recommends surgery because I'm in risk of having a stroke and the older I get the risk is higher and by the location of my avm he says that my vision is in danger as well, I am very confused and scared about the surgery. Can you give me some advice. Thank you Judy Perez, Orem, UT

Judy Perez said @ 12/11/2005 02:37 PM EST

Is this disorder have any bearing on Chiari ? Meaning any thing like chairi and can you have both. I have Chiari and syringomyelia . decompressed in 1999. Syrinx is T4-T10 5 mm . thanks

Roz said @ 12/05/2005 05:58 AM EST

Thank you for responding. I however have not received any email from Dr. Brisman. Can you please forward his email or ask him to send me an email on premakhanka@gmail.com. I sincerely appreciate this medium.

Prema Khanka said @ 11/10/2005 10:27 AM EST

I had brain surgery in April of 2002 to remove an AVM 3mm from my brain stem. When I woke up from surgery, I could only talk, and I was quite difficult to understand. I had nonconcurrent vision for three weeks and lingering multiple images in my outer vision for four months. 6 weeks after my brain surgery my C 4-5 and C5-6 were replaced.

I am a walking talking miracle. I actually walked a marathon the October after my surgeries.

Post surgery, my ADD went wild. Previously I had adapted well; I teach American Government at an alternative high school, but meds have been necessary. My ability to screen is non-existent. I manage by order in my classroom, and limited time in the main building where the input is excessive. I would love to be off Adderall.

I attempted Sratterra and couldn't stop crying or get out of bed, that got to last for half a day and currently the dosage of Adderall is the option for change.

My "brain symptoms" are nearly disruptive premenstrual. My inability to sort becomes overwhelming and burdensome.

Since surgery I continue to "talk around words"; I have a finger that bends inwards when I gesture(just odd); when I turn around, if I am tired, I cannot stop in mid-turn, I have been known to fall down when extremely tired, so I sit down and or take a nap. I was diagnosed with verbosity after surgery and continue to work towards shorter answers in a direct line. I live in Idaho and talk as fast as a New Yorker. All of these are "nothing"! And I am blessed to have them.

The past two weeks I have been experiencing visual irregularities. I cannot explain them other than to say they are like when I wore my contacts too long, however, I had corrective surgery in January, so no contacts.

I am also experiencing side effects from a 15 hour plane ride to and from New Zealand this past June. Upon returning from a trip to Japan in 2003, I ended back in therapy adjusting my balance as a result of "MDD"-Mal De Debarquement- my brain did not disembark after the trip...I continued to have "internal earthquakes". After three months of therapy symptoms were gone.

Today, four months post disembarkment back in the states from New Zealand, the rocking continues. You do not want to be in my skin premenstrual, I am on a ship rolling, and the data processing is painful.

So, other than being a "case", would you care to address either of these items? The Mal De Debarquement symptoms are quite disruptive. The only time I have any relief is during racewalking. My loved ones would deeply appreciate a "less intense" ADHD me.

Thank you for taking too much time on this inquiry.

Janet Liston said @ 11/02/2005 10:54 PM EST

What clinics and doctors in the United STates deal with AVM's the most?

Julie Swanson said @ 11/02/2005 09:58 PM EST

We've just experienced the 4th AVM in my husbands family last night. Our 13 year old nephew. He's alive and stable thank God. My 19 year old daughter died when she experienced a ruputured AVM while driving. Due to head injuries from the accident, the autopsy was inconclusive. My husband's brother had an AVM that ruptured, had surgery and is alive and well but with some lasting affects (short-term memory loss is one). My husbands cousin (50 yrs old) died of a ruptured AVM. Is this hereditary?
My question is should I ask my 21 year old son and husband to get tested? Neither want to but if it can be treated why not. If your answer is a postive one and can help me convince them, I'll show them so as to help with their anxiety over knowing vs. not knowing.

Michelle Hernandez said @ 10/28/2005 11:05 AM EST

Hello,

I had emailed some pictures of my mother's avm and was seeking an opinion as to whether we should go for embolization or just wait and watch.

My family is currently going through a very stressful time as i just lost my dad. This is a very stressful time for my mother and wanted to know if this can affect her avm?

Please get back once you see the pictures.

Thank you,
Prema

Prema Khanka said @ 10/24/2005 10:26 PM EST

Hi,

I have some pictures of my mother's AVM which I would like to send over. The neuro surgeon who performed the DSA recommended embolization. We are however skeptical about embolization or any other type of surgery as currently she is showing no symptons and her AVM was detected accidently. She is 50yrs old.

Another opinion we received was to wait and watch the growth of AVM after 6months-1year. If AVM grows then go for embolization.

Would sincerly appreciate if we can receive a opinion from doctors at avmresearchfund.

Where can i email the pictures?

Thank you,
Prema

Prema Khanka said @ 09/30/2005 10:06 AM EST

i too need to know more about this disease.
no one knew he had this awfull avm in his brain

how do you know if what a family member died of (avm) is genetic? said @ 09/12/2005 07:31 PM EST

From the AVM Research Fund Medical Board: Elisa's question - 8/24/2005

My sister just passed away due to avm close to her brain stem. Should i get checked? what is the probability of me having a malformation?

I am sorry to hear about your sister. Thank you for your interesting question. AVMs are believed to be something that people are born with and for the great majority are not considered hereditary. There are some conditions, such as Osler-Weber-Rendu disease that do run in families and such patients can have brain AVMs. Provided that you are not aware that she had such a disease or another hereditary disease that can manifest with AVMs, it is safe to assume that her AVM is not hereditary and generally doctors would not suggest screening family members. If this is the case, then i assume your chance of having a brain AVM is similar to anyone else's, which is approximately 1:1,000.

I hope this helps. Thanks for sharing your story, as i fully expect it will help others.

Best Wishes,
Jonathan Brisman, M.D.
AVM Research Fund Medical Board, Co-Director

Dr. Jonathan Brisman said @ 09/01/2005 11:01 AM EST

From the AVM Research Fund Medical Board: Prema Khanka's question - 7/26/2005

This year i went on a holiday to India to spend time with my parents. Unfortunately my trip was everthing but fun.

After an accidental CTScan for pain in the eyes and several trips to doctor we discovered that my mother has a small AVM. Though the doctor tells us that her AVM and eye pain are not related, he told us to get an embolization.

The dilema is that she is showing absolutely no symptons, yet we are scared. What if the AVM leaks? Looking for opinions on whether to go for embolization or wait and watch the growth in size of AVM. Would sincerely appreciate any feedback.

AVMs are very dangerous because they can bleed, causing disastrous consequences. They need to be evaluated properly and strongly considered for treatment, even though not all AVMs should be treated.

Roughly speaking, AVMS bleed on the order of 2-4%/year, with about 10% of such bleeds resulting in death and 25% in some permanent brain injury. That said, treatment carries risks as well and some AVMs are very risky to treat. Many factors, including patient age, AVM size and location, therefore need to be factored into the decision whether or not to treat.

My recommendation would be to obtain at least 2 if not 3 opinions from different centers on what to do with your mother's AVM. Since there are three treatments for AVMs: radiation, surgery and embolization (often used in combination), one must be careful which doctor one is speaking to. A surgeon will more likely suggest surgery than a radiation specialist, who might be more inclined to offer radiation. A person who only does embolization might think that embolization is the way to go. Again, I would recommend at least three separate opinions, with at least one coming from a neurosurgeon who specializes in vascular diseases of the nervous system.

If you need a referral in your geographic area of a top vascular neurosurgeon, we would be happy to supply this. Myself and Dr. Newell are located in New Jersey and Seattle respectively and would be willing to discuss the option of having your mother seen by us if you lived nearby. Additionally, if you wish to email pictures of the CT/MRI or angiogram that showed the malformation, we would be happy to look at them.

I hope this helps in some way. Thanks for your input to the blog.

Best Wishes,
Jonathan Brisman, M.D.
AVM Research Fund Medical Board, Co-Director

Dr. Jonathan Brisman said @ 07/29/2005 03:06 AM EST

From the AVM Research Fund Medical Board: Jean Crawford's question - 7/23/2005

My ex-boyfriend had surgery for avm about 20 years ago. In the past 7 months he has been a totally different person. His personality has changed. All of his friends and family have noticed it. He is doing things he doesn't remember. He is in a mental facility right this minute and the Doctors there are giving him antidepressants and counseling him. Could this be from the surgery on the avm? Does it cause psycological behavior?

AVMs can cause all kinds of trouble, particularly when they bleed. On occassion, bleeding from AVMs or surgery for AVMs can in fact cause things like depression and memory problems, although this is not the usual case. Additionally, it seems less likely that these symptoms are caused by the AVM surgery, given the fact that the surgery was 20 years ago. Usually the consequences of surgery are seen right away.

That said, our ability to treat AVMs nowadays is much better than it was 20 years ago and in fact some AVMs that were "treated" years ago might actually not have been completely treated. It would be worthwhile for your friend to have an MRI of his brain if he has not within recent years. This will help his doctors answer your questions better as well as answer the question whether or not his AVM is in fact completely gone. Ideally, however, there is no substitute for having him evaluated by local doctors, such as a neurologist or neurosurgeon who know about AVMs and the proper way that patients with long histories of AVM treatment should be followed.

I hope this helps in some way. Thanks for your input to the blog.

Best Wishes,
Jonathan Brisman, M.D.
AVM Research Fund Medical Board, Co-Director

Dr. Jonathan Brisman said @ 07/27/2005 10:08 PM EST

From the AVM Research Fund Medical Board: Clive Wiggins' question - 7/16/2005

My sister had an embolisation of an AVM today and during the operation a catheter was lost and not recovered. Has any one else had similar experiences and what can we expect?

During embolization of brain AVMs on rare occasion the catheter can accidentally get glued permanently into the body. I am guessing that this is what happened and not that the catheter was literally lost in the body. I am guessing this because modern day catheters are almost all visible by x-ray and so the doctors should be able to see it on x-ray. This happens because the glue polymerizes and hardens as it comes out of the catheter and sometimes it hardens too quickly and the catheter is glued in place before it can be removed. This, fortunately is very rare. In general, there are no adverse effects from this event, which probably happens on the order of 1% of the time that brain AVMs are glued. The catheter does remain permanently, but the body cleverly builds a lining in the blood vessel to cover it and usually there are no problems.

Again, please remember that this is simply a general guess as to what transpired and some information on the gluing of brain AVMs and what I believe happened in your sister's case. Of course, without seeing the procedure or the catheters and devices used, I can't guarantee that it is in fact what happened. I suggest you ask the physician who did the procedure exactly what he meant and to clarify with you and your sister. Ultimately the surgeon who did the procedure will be best able to do this.

I hope this helps in some way. Thanks for your input to the blog.

Best Wishes,
Jonathan Brisman, M.D.
AVM Research Fund Medical Board, Co-Director

Dr. Jonathan Brisman said @ 07/18/2005 06:35 AM EST

07/15/2005: "Ask the Neurosurgeon"