Symtoms for years, yet disregarded anyone else do this?

Symptoms & Treatment
1

So, I'm an MD, a Psychiatrist for over 20 years in practice. My AVM was (is) in the part of the brain that regulates anxiety (and speech).

So one day, I started getting 10+ panic attacks per day. Now, that's a lot, We psyrinks consider one per day on a consistent basis to be clinical. But, hey, I knew they were panic attacks. So, treated myself, got a bit better. Then, saw another psychiatrist, got a bit better. Actually I saw two different ones at the same time. One did say if I thought this might be biological (I was telling him about my occasional word loss) that I'd need neuro testing to rule out anything other than normal aging (I didn't bother.)

Finally, after 2 years and still having symptoms, my current doc told me to see a neurologist. Being a good girl, I did, but I felt really stupid. I was the only normal looking person in the waiting room, not to mention the youngest. I felt like a hypochondriac.

The rest is history. Obviously my panic attacks, which, in fact were panic attacks, were caused by my AVM.

Now, when normal people get a panic attack for the first time, they go to the ER because they think they are having a stroke or a heart attack. They usually get a CT or MRI. Obviously if they are having a stroke or bleed, it's found out ASAP. If not, they get sent to see a psychiatrist, like me.

Lessons learned: sometimes being an MD is really not helpful.

I'm curious if anyone else waited years before seeing a neurologist for an evaluation. If so, how many years did it take before you did so. Also, if you had psych symptoms did you see a psychiatrist and did they figure out this was a medical problem?

1 Like
2

Hi SoCalLady. As a moderator I am on this site a lot. Yes…some people ignore their symptoms. However, what is much more common is that they are misdiagnosed. Some AVMs only appear through an angiogram. The AVM did not show up on the MRI or CT scan.
There is a search box on this site…look on the very top right hand portion of this page…above the words We are AVM Survivors, here for your support and you will see it. Type in the word misdiagnosed or the word ignore and see how many pages pop up. Lots of them!

3

I hear ya SoCalLady! I have been bounced from Dr to Dr for the past three years and they all took the attitude of "its your problem not mine". One Dr actually went so far as to tell me it was "all in my head" and I needed more exercize even though I was mountian biking or horseback riding daily and they had me go through two months of physical therapy! Although in hindsite he was right it was all in my head..LOL! It wasn't until this past December when the company I work for switched insurance carriers and I got a new network of Drs. My new primaiary care Dr was the first one to actually listen to me at first I thought she was crazy to refer me to a neurologist but as it turns out she was exactly right! I have never been to a psychiatrist however. I am glad that after all this time you are on the right path! Hope all is going well for you!

4

Hi my name is sharon,and i started getting panic attacks a couple of weeks before they found my avm,i was just given zanex and told to relax.After one year they sent me to psych,and they basically told me to cop myself on,they made me feel so shallow as if my avm was nothing to be concerned about,even though i had to travel form ireland to the uk for treatment and almost died.I still get so upset about it,they made me feel like i was seeking attention for been sick,and trust me that wasnt the case,i was so scared and my avm is still not obliterated.Glad i got to read your message.

5

I started having some symptoms years ago but put it off to clumbsiness or age. Then I got ringing in my ear and talked to my mom about it and she said she's had ringing for years, so I thought it was nothing...till I lost 3 decimals of my hearing. They put me on steroids and the EMT did a MRI to see if I had a tumor on my nerve and that's when they found mine.

I didn't have any psych symptoms because mine is located at the base of my brain stem so most of my symptoms have to do with strength and balance.

6

My bleed was over 2 years ago! And since then the nagging question by everyone has been "weren't you having headaches??Nope-- doesn't everyone have headaches? It wasn't until I saw a Neuropsychologist that I felt I was in the right place! Yes, we initially did some testing and eval. but after that we did a lot of talking! And he was the first and only doc that has been on the same page with my unusual symptoms and mental state! It was refreshing to finally find a professional who understood my medical: psychological situation

7

I've had a bruit since childhood & didn't know it wasn't normal. As a child, I would get headaches if I didn't eat on a regular schedule. First two migraines in high school. Migraines became more severe & more frequent in college with the irregular sleep schedule & increased stress. When I started teaching, migraine frequency & intensity worsened. I finally saw a doctor on day 4 of migraine. He gave me Midrin & sent me on my way. Some years later (and after trying Zomig, Fioricit, and Maxalt--not all at the same time), I finally went to see a neurologist after a trip to the e.r. (I had taken several Excedrin, 2 Maxalt, and a Fioricet & had no relief until the e.r. gave me a couple of shots & knocked me out.)

The neurologist saw no need in doing any scans. He prescribed nortriptylene & sent me on my way.

Several years later--another trip to the e.r., where I was told that a migraine wasn't an emergency. The next day, my husband took me to my regular doctor & inisted on a CT. That led to an MRI 2 days later and ANOTHER trip to the e.r....where the neurologist on call didn't bother coming to see me. Four days later I was sitting in a neurosurgeon's office & scheuling an angiogram. That would be about 20 years after I first saw a doctor for migraines and about 5 years after my first e.r. visit & then neurologist visit.

8

Hi SoCalLady,

5 years waiting and mistreament with physician neuro surg/neurologist that knew I had CCM (cerebral cavernous malformation). I had multiple MRI's order by a neurosurgeon confirming I had multiple malformation on the brain and brain stem but, I had no systoms other then a bad headache every so often. Then in 2006 ended up in the ER misdiagnoised and went back to neurosurgeon, was told to go fishing & that the symtoms I was having were all in my head. The I went to neurologist who stated I had been having "seizure", put me on kepra the changed it to dilantin max dosage of 800 mg a day..seizure got worse this was over course of 2 years. Then our primary physician told us to stop and find a physician who understood this disease better then anyone and referred us to this site.With Patti help we found Dr. Gary Steinberg/Stanford..when we met he discribe all my symtoms to a tee including anxiety, panic, seizures, confusion, memory and on and on...Surgery was the only resolution..Since August 2011 all my symtoms are gone. I still have little bumps, but nothing compare to my life prior to August 2003. I am 65 yrs old and have had this disease and symtoms since I was 23 yrs old..My daughter, son and mother have this too...No physician validated all my symtoms better then Dr. Steinberg did that day and what the course of treatment had to be...He saved my sanity, life...

9

Hi, and a very interesting story you have, I was a little kid when I had an AVM bleed in 1959. I had been having headaches, and heard the bruit in my ear, buy my mother did not believe me. My grandmother, who lived with us, finally got me to an eye doctor because I was having spots in my eyes, too. Before all the horrible tests were done, I had a big seizure and a coma, and a craniotomy. The doctor must have been an angel because no one other than doctors who studied vascular problems knew anything about an AVM. I am alive 52 years later, happy to be alive. I lost a lot of vision in both eyes, but was a paralegal for years. I have a 30 year old son, too. A great kid. I do have left over problems other than the vision; namely, add, ocd, anxiety, depression, etc. All is mostly under control now. What's that old saying about doctors being patients, too? Good luck.

beans

10

I was diagnosed with an avm after having a seizure in my sleep. I can tell you....I have several panic attacks weekly. My neurologist has put me on a new med on the market call vybridd and its working really well. In time everything will get better for you. GOD'S SPEED :-)

11

12

If I hadn't said it already, welcome to the site SoCalLady... Unfortunately misdiagnosis for AVMs is common and I don't think it was solely because you're an MD. However, I'm sure that had much to do with it. We won't begin to get into the need for awareness...Bottom line, only you can report what's going on with your body. Don't worry so much about what your told, be stubborn about it. :J Barbara had some wonderful advice on how to search the site and I hope that helps.

Frequent panic attacks were your first sign that something was wrong. I'm glad you found you're AVM so you can treat it. I know you're an MD, but feel free to vent or do whatever you need to do on this journey. We'll always be here for you no matter what. Good luck and I hope you're feeling well. :J

Suzy

13

hi:)I was misdiagnosed with migraine when I was 16,when I had a really bad headache,although I didn't usually get headaches,and my bleed was two years ago yesterday!

14

I had seizures in my left foot for about 3 or 4 years any pretty much ignored them. I thought that they were just muscle spasms and never even thought that it could be caused by something wrong in my head. I finally went to the doctor because I started having problems moving my foot. So yes, I disregared symtoms for years also. I never hade a bleed so I don't think finding it earlier would have made any difference. In fact I wish that I would have waited a few more years being that I feel worse and have more problems with my leg since being treated. Good luck with your situation. Jason...

15

SoCalLady,
I have had small-city/rural drs. (neurologists, radiologists & ER) overlook symptoms & bleeds visible on MRI's numerous times and have been told by 2 neurologists my symptoms were "in my head."
Through these experiences I've learned the necessity to be my own advocate & have had to refer myself to my neurosurgeon (400 miles from my home) @ Stanford http://neurosurgery.stanford.edu/patient_care/cerebrovascular.html. It's exhausting, but a necessity.
I strongly encourage you to learn as much as possible re: your CM diagnosis & seek another opinion(s) w/experts mentioned here until you feel right about the direction of your medical care.
Best wishes,
Patti

16

I had my first seizure in `86. They ran an MRI, put me on Dilantin, and sent me home telling me to be a good boy. They started taking me off Dilantin in `88 which produced another seizure. They said, "Aha!", ran another MRI, told me to stay on Dilantin, go home and be a good boy.

In late `88 my wife was taking me to see our GP for a regular checkup. She was so annoying about making me see doctors.) Then, she got copies of two MRI's just to show the doctor and have him explain them to us. He was very polite and agreed to look at the MRI's with us. He was talking calmly as he put them on his light screen. His boring explanation on how the brain works was going very slow when his finger stopped at a spot and his words froze in his mouth. Suddenly, he was energetic as he pulled out different films and was putting them up and comparing them. As his energy increased, he asked us if we could just sit for a few minutes, because he had to make a phone call.

When he came back, he explained that no one had seen the AVM's on these pictures. It was so obvious at this point, that my wife and I were pointing to the spots saying, "you mean these?". He didn't answer the question (smart doctor). Instead, he referenced the name of a neurologist who was going to talk to us the next day.

So, after seizures and MRI over two years, I finally got to see a neurologist. Based on the speed of growth of my AVM, he said there was an 80% chance I'd die within a year. Within a month, I was recovering from brain surgery. So, it was a slow start, but it ended up pretty good.

Of course, as time goes on with the help of people on this website, I'm learning of the not-so-obvious side effects of AVM. Lack of memory, problems speaking, and difficulties in public areas are just some of the problems. But, it's nice to be alive and have the chance to deal with problems.