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AVM Survivors Network

Very frustrating Dr appt

#1

So I saw my 2nd neurologist today. And just like the 1st, again, he hadn’t even looked at my scans! He said none of the symptoms I have are related to my cavernoma & the part of the brain stem it’s located in doesn’t control any part of the places I’m having issues with - like my eyes, ears, motor, etc. However, I did just look up the midbrain & it does, in fact, control all of those functions!! I am beyond frustrated. And seriously, what kind of neurologist doesn’t even look at your scans. I would think they’d be looking at them with me & explaining things as we look. What a joke!! Staying positive has become increasingly difficult. I get that some of the symptoms I continue to have could b caused by migraines. But how can you just completely disregard my cavernoma all together & make it out to not be an issue or causing problems. He also said you cannot difinitively say whether I had a hemmorage by looking at an MRI. That a spinal tap has to be done! WHAT!! So over it!!!

#2

I had some frustrations with doctors also. My first MRI was done, I got no message so I assumed there was no problem. Two years later, I got a second MRI. Again, no message so I assumed no problem. My wife made me bring the films to another doctor. He actually looked at the scans, he saw the AVM, he got me a surgeon, etc. It took awhile to get a doctor to do it correctly.

#3

Lauren,

I’m sorry about this. It’s a difficult enough a situation to be in without getting what feels like not good support.

My own view? Unless you would happily trust your life to the person who’s dealing with you, you’ve got to move on and get another opinion / find someone who does come across as completely trustworthy, because basically we do need to trust them with our life.

I really hope you find first class support soon – because you’re worth it, to quote an advert.

Best wishes

Richard

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#4

Thanks for the encouraging words! I am scheduled to see a neuro surgeon next week in Tampa. Hoping he will provide some clarity on the situation. For now, just trying to get through, one day at a time. But, my right toes & foot have gone numb again… just hoping it doesn’t turn into another full blown episode like last week.

#5

Actually the lumbar puncture IS standard procedure. . A lumbar puncture, or spinal tap, usually follows the MRI or CT scan.They are not near as accurate as one thinks as they only meaure 4 mm at a time.

A lumbar puncture involves removing a small amount of cerebrospinal fluid from the lower part of the spine. Blood cells or blood breakdown products in the cerebrospinal fluid indicate bleeding. Depending on HOW the AVM is formed it is near impossible to know if subarachnoid hemorrhage has occured unless it is a large bleed. Following that a cerebral angiography is done. This procedure uses x rays to map out the blood vessels in the brain, including the vessels that feed into the malformation. This is where the real information comes from. I would be very leery if a NS didn’t do this

A cavernoma is much different than an AVM as its just capillaries and venules. Any bleed would be very small and hard to detect on a regular imaging study unless it was massive. There is a huge difference between the mid brain, basal ganglia-brainstem, and the actual brainstem. The basal ganglia-brainstem is the most likley location of a CM. Slow, deliberate, and conservative is the only way to approach this thing. The only real treatment is microsurgical resection, and a craniotomy. there are few center eqipped to do so or enough surgeons that do enough in a year to be really good at it. Stereotactic radiotherapy (also called “gamma knife” or stereotactic radiosurgery) is not a good option, not that some wouldn’t try. It requires a very experienced vascular neurosurgeon. Mayo has some and Johns has ONE. Next best is in San Francisco (Cal), Brian Hoh, at the University of Florida is considered the best in the US. I wouldn’t hesitate to trust him (even though he has the personality of an egg carton.) Hes worth the trip to Gainsville.

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#6

Hi Lomil,
I had a very frustrating time with my neurosurgeon back in 2007. A few months after my AVM bleed, I met with psychotherapists at The Hospital for Sick Children in Toronto, and the next day, I met with my surgeon to talk about options for treatment for the AVM. He never even looked at me, and since my eight-year-old sister had accompanied my family and me to the appointment, I don’t even know if he knew which of us was his patient. He told my parents I was just fine, and that I could go sky-diving. My mom asked, “Is she ready to go back to school?” and he replied, “Sky-diving.” My mom said, “Does she need more treatment?” and he said again, “Sky-diving.” I was ten years old then, and my parents were beyond shocked by his “approach” to my AVM. Luckily, I had spent time in the Children’s Hospital of Eastern Ontario before they had transferred me, where I had an excellent team battling my AVM. We contacted my former doctor and family doctor who advocated for me to get a new surgeon, and while the surgeon did not end up doing as good a job with my treatment as I had hoped, he performed the Gamma Knife on me within just a few months, whereas my original surgeon merely offered (eventually) to do another MRI.
So my advice, GET A BETTER SURGEON! My surgeon at the Children’s Hospital of Eastern Ontario is an amazing man, and I wish I could say the same for my current team. This is your health, and you need to have the best team possible treating you!
All the best, Julia

Canadians
#7

Thank you for your input! And yes, it is a CM in the midbrain. Although it was confirmed by several neuro docs in & out of the hospital that it did hemorrhage at least twice that they know of (without spinal tap). Not sure why so many would agree if it needed to b confirmed. But from the research I have done, I agree… it seems as though radiation isn’t a good option for me, and surgery would b the only real way to treat this. Just curious if you are a doctor, as you seem to b so well educated in this specialty?

#8

Unfortunately, not all doctors are created equal. I was naive enough to trust that each doctor I saw was prepared to give me their undivided attention and support. It took 5 years and 20+ doctors to change my mind. The first neurosurgeon I saw, and this was after an MRI and a lumbar puncture showing blood, put me on a “will call” list (his words) and I would not be alive to write this if I had blindly followed his advice. It’s the hardest thing to have to advocate for yourself and strike out seeking opinion after opinion. My husband found the name of the best AVM surgeon he could and we travelled a long way to see him. My husband threatened to camp out on his door step until he saw me and that’s how I finally got an appt and got treated. The neurosurgeon admitted me on site and operated on me the following day. I had an embolization for a right sigmoid dural fistula which had bled. He saved my life. It shouldn’t be that way but if you can’t get the help you need or don’t feel comfortable with a doctor, find someone else. There are some good doctors out there. You just have to find them.

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#9

It’s so hard to find the right doctor or make the right choice. I feel in my heart and gut that my doctor is right but others question why I’m not going to big hospitals that are well known. He is on the top 100 neurosurgeons list but works out of a smaller hospital. I feel comfortable with him but wonder every day is it right?

#10

You could tell the doctor that you are there to interview him/her, not the other way round.

#11

In Canada, I much preferred my doctor in Ottawa to my replacement when I was transferred to Toronto to be closer to home. (As I indicated in an earlier post) CHEO in Ottawa is a much smaller hospital, and Sick Kids in Toronto has a great reputation, but my entire family agrees that we definitely prefer the care I received in CHEO. At the time, we didn’t even know there was a hospital in Ottawa for children, but I am so grateful that I spent most of my initial recovery there, and that is because of my amazing surgeon, Dr. Nzau, and the caring nurses.
Bottom line, go with the doctor that feels the most comfortable. We fired my doctor at Sick Kids, and Dr. Nzau actually helped us find someone else! And at a smaller hospital, you are treated as a person. At CHEO, I was Julia. At Sick Kids, I was patient in room 5C. Big hospitals, I find, just see you as another number.
Hope this helps! All the best!
Yours Truly, Julia

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#12

Hello, my name is Sharon and I have a caveranoma in my front right lobe if the brain, they said sort of over my right eyebrow. It is the size of a blackberry and HAS bled. Nothing being done, said come back in 2 years!! Is this sounding correct? Headaches and dizzy ALL the time. …worried sick. They have done several MRI and CTs.

#13

Hi Sharon! Sounds pretty much like what I was told. Cavernoma in my brainstem. Nothing to b done. F/U in 6 months. Symptoms haven’t gone away (vision, hearing, memory,etc) I’m seeing a specialist in Tampa tomorrow to find out more & will keep you posted!
Did you get diagnosed in the hospital??

#14

They diagnosed me in the hospital then I have been to a brain specialist, but they haven’t done anything, vision IS worse., as a matter if fact I’m going to get new contacts this morning…plus my memory has gotten Terrible after this. Thinking of going to see if I have early onset of ALZHEIMERS! I can’t believe this.

#15

Sharon,

It isn’t always possible to safely do an operation but I would expect the consultant or doctor to explain why it isn’t possible or advisable. Definitely ask for an explanation. If you’ve been discharged from hospital, ask your primary doctor what explanation has been given to them in your discharge notes.

Richard

#16

Sharon,
I am so sorry that you are having such a difficult time, although I can def relate! Been nearly 2 months since my last bleed & am on my third neuro doc & tried countless meds. I realize there may not b an immediate solution, but at this point I just want to feel better.
For something of this magnitude I do think getting 2nd, 3rd & 4th opinions may be necessary. Or at least until you find a doc you trust & feel comfortable with. My first two didn’t even look at my scans!!! And also writing a comprehensive list of questions to bring to your appt.
Our situations are serious, so for a doc to say “sorry about your brain & follow up in 6 mo” is unacceptable to me! Hopefully you’ve found some helpful info since joining. Like everyone says, it’s not a club anyone wants to be in, but welcome to it.
I’m here to talk if you need someone to listen :purple_heart:
Lauren

#17

Yes, Lauren, thanks so much! It helps to know someone is out there with the same problem…I wonder how fast these things grow??? Sharon

#18

Richard, I was discharged the next day and sent home.It was found when I had a wreck. My head has felt terrible since then. I did have a cuncussion but I should have been over that by now I would think, sooo I know it most likely is this caveranoma. …They just say, I haven’t had a seizure yet. :…sigh. It is the size of a blackberry and HAS bled. …I guess I just wait. Appreciate the concern people have on here…Sharon
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#19

The doctor did say that they Could operate if u wanted to do so, but didn’t seem like it was really necessary…you know like, “well, you haven’t had any seizures yet.” IN the summertime I cut a lot if grass, I sure hope that it does not make this bleed anymore. The doc said just do anything I wanted to do…no restrictions. Does that sound right??? Sharon

#20

I can’t tell you … I’m not medical. You do get doctors that are busy, lazy perhaps, got other things going on in their day just like us, so maybe he or she was having an odd day.

For people in the UK I would encourage them to go back to their General Practitioner – I think you call them Primary Care doctors in the US – if you’re not getting the service you think you should.

On the other hand it is perfectly correct not to operate sometimes: the risks of the operation or the deficits could outweigh the risks and deficits you face without. Don’t always feel the need to rush to the knife!

But get good advice. Best wishes,

Richard