Hi, everyone. We are in the middle of partnering with a company called http://www.2nd.md. They provide internet-based second opinions with medical specialists. Normally they charge a few hundred dollars, but as they are just getting started building the service, they offered us one free consultation.
If you have a difficult or unconventional AVM case and would like a second opinion, please leave a note here. Explain your situation. The folks at 2nd.md will review the replies and select one to provide a free consultation for.
My advice would be to state how your situation is unique/difficult/unconventional and describe a little bit about the patient.
Again, if you would like to nominate a patient for a free second opinion/consultation over the internet, please leave a reply on this page by midnight April 19.
Warmest Wishes, Ben
P.S. I've received a few questions already. These are board-certified specialists/M.D. (U.S. based). They are certified specialists and screened by this company (2nd.md). We've met in person with the company founders so I can personally confirm this is not a scam at all. They are just looking to test out this new internet-based service with real-life patients. After this trial, consultations will cost $200-$500 each.
If you're not comfortable with this, actually, please feel free to leave a note here as that is also valuable information for them as they develop their service. If you are comfortable, please leave a note nominating yourself or a patient. Cheers!
I desperately need a second opinion about whether the placement of my VP shunt tip is dangerous and causing memory losses, headaches, cognitive and emotional changes. Quick background, I had three craniotomies in 4 months. The first surgery was to remove the AVM that caused a stroke in my right frontal lobe. One month later, CSF leak from the nose and had to repair two defects. One month later, increased intercranial pressure so they put in a VP Shunt. I started losing periods of time up to 12 hours. I could function to some degree but would have not memory of the episodes. I am an elementary school teacher and this happened several times at work also. I was getting no help from Emory which performed my surgeries and neurologist there couldn’t decide if it was seizures, amnesia, etc. So I went to Mayo Clinic. They discovered the tip of my shunt was in the basal ganglia and not in the ventricle. They saw no signs of hydrocephalus on any of the scans I took with me. They thought my headaches and memory losses were probably migraine related. They said it looked like I didn’t need the shunt but weren’t sure about removing it. I was also having pain on the shunt line, low grade fevers and abdominal pain. Tested my pressure and it was a 9. Now things started to ramp up. My blood pressure was spiking up in the 200’s/100’s. Ruled out cardiac reasons and decide to look for another AVM but in my kidney. They found a renal artery aneurysm. I just had that coiled. Also, during this time I had to stroke type episodes where I failed the stroke assessment but it wasn’t a stroke. So, they said I had hemiphalegic migraines. During one of these episodes, my memory took me back two weeks in time so they said I had a confusional migraine. Both of these times the neurologist and neurosurgeons were arguing about the placement of my shunt tip and whether this was causing these issues. My neurosurgeon says it is a soaker tube so it doesn’t matter where the tip is. It is either working or I don’t need it any longer. His staff disagrees and says that the tip is trying to such fluid where there is not fluid and this is very dangerous because it is in the brain matter. My neurologist put me on Topomax. I was titrated to 75 mg am and 75 mg pm and started having issues where I couldn’t count money, do ordinary things and started having suicidal thoughts. So, they just took me off last week but in a three day period and I had severe withdrawals and had to spend the night in the hospital for chest pain. I just started taking Cymbalta. They think I have another AVM in my colon because colonoscopy showed past ischemic colititis. The school system has pulled me from my job to do an independent medical evaluation because of the liability of teaching young students and losing my memory. They aren’t sure I could respond appropriately in an emergency and I agree. I really need to know whether the tip location is dangerous and is it possibility causing these issues. No other neurosurgeons will consult with me here because they say whoever put in the shunt owns the shunt. Mayo was helpful but they said my case is so complicated it would be impossible to treat me over long distance. I just don’t know what to do anymore. It has impacted every part of my life. I easily go to the hospital a few times a month. The pain gets so intense, I can’t control it at home. The doctors always freak out when they see the placement of the shunt. They can’t tell if it is still migrating. My neurosurgeon said it isn’t migrating, he said he put it in that location for a reason. Everyone else said it shouldn’t be there. Please help me. I am only 45 years old. I can’t imagine having to live like this for the rest of my life. My name is Lisa Fetner. I can be reached at 678-■■■■■■■■. I have a new email that goes to my phone that is ■■■■■■■■■■■■■■■■■■■■. To make matters worse, my husband has been in Afghanistan during all of this. We hope he will be home in the next few months. Please consider helping me!!
I would like to have a second opinion about living life after a craniotomy for a ruptured AVM in Jan. 2000. The headaches have continued, but for the most part are manageable with Imitrex and Maxalt. I have right abducens palsy that causes double vision with side glancing (I have learned to just turn my body to alleviate). My eyesight is gradually worsening. After the bleed I was put on 2 different BP meds to prevent HTN. I have tried Prozac, Effexor, Elavil, Celexa and Lexapro for depression, but they don't seem to work. I'm not sure I really even have depression,(I have been sad since losing my husband to Panc. Ca.) to me it seems more like ADD or ADHD. I have many part finished projects and my concentration is in the tanker. Before the surgery I was Type A, list maker, successful nurse. I work 3 days a week now and am drained. I am overwhelmed and don't know where to start to try and get my self pulled together. I also have experienced several episodes of a CSF leak through the nostril, but the Dr.s could never agree on treatment ohter than slicing my head open again for an exploratory expidition. Is there anything that can be done to help me. I would so appreciate input. I don't know if these incidents would even apply, but since the surgery I have had 3 head injuries (2 at surgical area and one in the occipital, all 3 causing condussions). With the last head injury I wound up hospitalized 4 weeks later with post concussion syndrome.
Thank-you, Sara Shaffer e-mail is ■■■■■■■■■■■■■■■■■
Thanks for your submissions. Lisa, the specialists at 2nd.md were interested in hearing more about your case. I'll put you in touch now! I hope they can offer some insight that will help your symptoms.
I am so sorry I missed this opportunity. I was born with an spinal hemangioma / middle area(vascularized tumor). Just a year ago I was diagnosed with 2 avm's along my spine that are also feeding a second tumor at the sacral area. Also I have another big tumor in my left hip fed by 6 avm's. I am in a messy state. Got to take care of my kids. no help. my husband works really hard, he is in a wheelchair too....couldn't be able to check my avm survivors user ontime. Any chances to submitt my info now? It is more complicated that what I just explained. As you problaby understand at this point I am dealing with a lot pain, muscle deterioration, bone destruction, loosing movement on left leg, urinary incontinence, etc, due to the avm's. I will appreciatte if anybody respond to my question...
as right now my avm's are inoperable. I just would like a second opinion.
My Apology for attending this discussion so late.I cdn't be in touch with this community due to some problems.My only sister (Present age-30) experienced two episodes of major seizure in Sept and Nov 2008 and intense headache afterwards. Patient has undergone treatment at All India Institute of Medical Sciences (AIIMS), New Delhi, India. Following is synopsis of her last treatment at AIIMS. *ANGIO REPORT (06.12.2008)—Large dysplastic AVM in (L) P-O region and spleneum of corpus callosum supplied by (L) ACA, P-O branch of (L) MCA angular br of (L) MCA, P-O br of (L) PCA and (L) post choroidal art and draining into SSS and deep venous system. Another small AVM an ( R) side of corpus callosum supplied by ( R) ACA.The size of the NIDUS is 52.8X25.0X48.0. *05.09.2009—Embolisation of AVM done under GA with onyx (L) medial parietal lobe. Large AVM was embolised using onyx (3ml) by selective injection (L) ACA feeders to AVM. 50% reduction of AVM nidus was achieved. No complication. *07.08.2009- Patient case of residual parieto occpital AVM Lt side was planned for staged embolisation. Embolisation could not be done due to leak from one of the feeder, which was closed immediately after heparin reversal. Procedure abandoned.
We had attended two more rounds of consultation in year 2010 and 2011 at AIIMS. Doctors were looking out for possibilities of embolisation or Gamma Knife or staged non-invasive treatment. Unfortunately, they were stating that embolisation could not be carried out and Gamma Knife is also risky considering the criticality of the location as the procedure may affect limb-controlling area. In a nutshell, it is inoperable at present stage. Doctors advised us not to treat it and let it to time decide the future of my sister. My sister is taking Eption 300mg/daily.
Presently Patient is facing occasional headache, limb weakness and severe pain in different parts of the body. By grace of god, no seizure experienced afterwards. But this is like living life on edge of sword. Their family life is in a messy state. Considering the criticality, they fear to plan for baby. The entire family is in deep distress as my sister is facing such critical situation at so early stage of life. Kindly help us by providing necessary consultation and guidance for effective treatment of my sister disease.
We will be greatful if we get a 2nd opinion.
■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■ Thanks Ankur Rajkhowa India
Ankur, so sorry, but the cutoff has passed. If there is another opportunity for a free 2nd opinion, we will broadcast on the community again to let everyone know.
Ben: Just so you know I got your message and I appreciated. My vascularized tumor at the lower part of the spine is so far inoperable (at least until I would start showing more severe symptoms, then they will embolize the arteries feeding it, voiding me from the waist down - to say it in a nice way). The next step is trying to see if my big tumor on left hip can be embolize or even removed (most doctors are not really positive about that posibility, even if there is bone destruction in hip and cervix). After that big meeting of Doctors at the Jackson Memorial Hospital that I still working on, and depending on the response of neurosurgeons, orthopedist, - because even cancer doctors will be involved as far as I know - THen, if you don't mind I will contact you back to find out if I have the chance to send my info for second opinions (if there is anything to pay, maybe I will, let's see). Thanks a lot for your concern and for the opportunity.
This experiment was such a success that we'll be expanding it. Free second opinion consultations on a regular basis, based on some kind of lottery or contest!!!
I have thalamic pain and am trying to find treatments without medicine. I am currently taking gabbapentin, lamotrigine, and Baclefen. I do aspire to have children so I want to get off meds. Any suggestions
I hope my daughter’s situation could be considered.
My daughter is 10. She suffered a hemorrhage from an AVM in 2009. We nearly lost her that night. She survived the emergency craniotomy, three weeks in the hospital and a month of inpatient rehab. She required a second craniotomy in 2010 and a third one in 2011.
Her third was in July. She suffered a left-side field cut in her eyes after the first surgery. All was going well visually until this year. Her eyes and optic nerves are healthy. But she seems to have lost her right peripheral vision this year. Nobody knows why. It has to be something in her brain. But our town doesn’t have any real pediatric neurologists, pediatric neurosurgeons or even pediatric neuropsychologists. That really makes it difficult to get qualified people to take a serious look. Most doctors here are apprehensive to do anything relating to her headaches and other checkups.