[honh]

Hello,

I'm new to posting but have been reading through the posts frequently. My health condition is the aftermath of coil embolization for an arteriovenous fistula in the cavernous sinus. There had been a meshing of artery and vein in the area behind the right eye, such that an abnormal connection, or fistula, had formed, and was causing horrible problems. Anyway, the doctors went in and inserted 62 metal coils into the vein(s) to plug up the fistula, and that seems to be resolved now.

There were post-embolization issues, such as severe double vision, but many of these problems have subsided. What's left is too much drowsiness (I grab 9 to 11 hours of sleep at night and still take a nap during the day), some memory lapses, and strange mood swings in the afternoon and evening. After reading up on brain injury on the internet, I think what I have is a brain injury issue and should be acknowledged and addressed.

My doctors were quite focused on the earlier symptoms, which were disturbing enough (headaches, eye proptosis, edema, etc), and none of them thought about brain injury. For one thing, my case was rare, in that the fistula came up spontaneously, without a previous head trauma. However, people who have sustained head trauma have developed fistula problems.

I brought up the hypersomnia, memory lapses and mood swings with my doctors. The neurologist told me to stop the Gabapentin and scheduled me for a March 2012 appointment. He doesn't know the Gabapentin stoppage did not remove the symptoms. I told my PCP about it, and he had me talk to the counselor at the local clinic, who had me fill out a questionnaire. She said I have depression and scheduled me to see a psychiatrist, also on March 2012.

My medical coverage is a public health setup so I have to do my own coordination because of discontinuities in the system. My question is, did anyone here see a neuropsychologist? I think that is the type of specialist I should see, and I plan to ask around at the county hospital, but I thought I should get feedback from other brain injury patients about this.

Thanks for reading.

[mbrook]

I see a neuropsychologist once a week. Its part of the TBI grant group I'm in.

Its to help me deal with the changes and let go of who I was and the things I use to be able to do.

I have also had a dr tell me that all my semptoms were just depression and all my TBI issues have resolved them self. My neoropsych strongly disogreed and reasured me that I wasn't crazy and I was still improving.

Its nice to have someone who knows neuro, TBI and psychology to look at all the pieces and help you put them together again.

[Mark in Idaho]

A NeuroPsych may be helpful at pinpointing your problem from the NeuroPsych perspective. The value of seeing an NP will depend on the skills and biases of the NP.

Do you have access to a neuro rehab facility? They are often run by physiatrists (Physical Medicine and Rehabilitation).

Your hypersomnia can be a result of not getting enough proper sleep with the full cycles of REM and the other sleep periods. I doubt the gabapentin is working against you. A sleep study may help to determine if you have a sleep disorder. Brain injuries often lead to sleep disorders.

Odd that I see your post as the first post after getting up from a mid-day nap. I got enough duration of sleep last night, just not good cycles of sleep.

Hope you can find the doctors you need.

My best to you.

[honh]

Thanks for the replies, mbrook and Mark in Idaho,

I do believe a neuropsychologist would be more knowledgeable than a psychiatrist. My county hospital has a TBI group so now I have to figure out how to obtain their services. My PCP would have to provide a referral, so maybe the task here is to inform him about brain injury issues. He is kept so busy because he is not given enough time to figure out what's up.

I'll be making phone calls starting tomorrow, during the time when I'm not feeling so down and droopy. Mornings are better than afternoons, though it's harder to wake up early because of the 10 to 11 hour sleep cycle I'm into.

Mark, whether I have a good, straight sleep, or an interrupted sleep, my system still grabs extra hours beyond the usual 8 hours. And the Gabapentin is gone, but the symptoms remain. However, I'm more alert now when I'm awake.

I'll keep this thread posted. Thanks!

[Eowyn]

I had a full complement of neuropsych testing. I get the results tomorrow. I think this will be most helpful in providing medical documentation of the symptoms I have been experiencing & describing that may be somewhat subjective, such as "brain fog."

I also have an appointment with a PHYSIATRIST (physical medicine & rehab doctor) later this month. This is different from a PSYCHIATRIST (specialist in mental illness) whom I also see to help manage my depression.

I will keep you posted on what I learn as I go forward.

[honh]

I was able to contact the TBI unit at my county hospital, and they told me to get a referral from my PCP. I've left a message for my doctor and hope he acts on it soon. I don't mind seeing a psychiatrist but this doctor might not know about TBI even if he is an expert on depression. Or maybe he knows something. I think the TBI clinic would be a good start for my issues, though.

[Mark in Idaho]

hohn,

You need to understand that we were recommending a physiatrist, a specialist in Physical Medicine and Rehabilitation not a psychiatrist, a specialist in mental disorders. With PCS, it is easy to confuse the two different specialties when reading.

What did you mean by <And the Gabapentin is gone, but the symptoms remain. However, I'm more alert now when I'm awake.>

I don't have any alertness problems from gabapentin and I take 900 mgs each night around 10:00 PM. I wake spontaneously between 8 and 9 AM after going to bed after 1 AM. I doze watching TV from 11 PM to 1 AM.

[honh]

Hi again,

I got to talk to a neurologist who is also with the TBI clinic, and to my surprise she said that she thought I had depression, and not a brain injury! I'm not sure why. She did say that my brain was not damaged by any of the work they did plugging up the fistula, and that nothing of that sort showed on all their scans. She was making noises about antidepressants, and keeping a regular sleep schedule as well as a regular exercise schedule. And of course, that I should see the psychiatrist that my PCP referred me to.

So there went my attempt to get into the TBI clinic. I don't know why she insists that I'm depressed. It's her attitude that's depressing. Well, this doctor said she'd call my PCP, so let's see what they end up deciding.

In the meantime, I need to do more research, since it looks like I'm on my own.

[Mark in Idaho]

Did she have you fill out any test or question like forms?

The MMPI-II can be interpreted to show depression when the result should be interpreted as organic brain injury.

What kind of scans did they do that she claims would have shown possible damage?

In rereading you first post, it sounds like you may have done an MMPI-II type of questionaire.

How long did the coil procedure take? Were you under general anesthesia?

You could be suffering from chemo brain or post-anesthesia symptoms. Some people are very sensitive to the anesthesia drugs and can take quite some time to recover.

Strong vitamin and mineral supplementation may help.

My best to you.

[honh]

Hi Mark,

She did not ask me to fill out a questionnaire. The local clinic previously asked me to fill one out but it was short and looked like it was designed to show depression. For the fistula problem, the hospital did a CT-scan, an MRI, a CT-angiogram, and finally, a cerebral angiogram with coil embolization which lasted 6 and a half hours or more. So I was under anesthesia for several hours.

My impression is that she was defending the procedure, saying that there was nothing in the scans to indicate any damage to my brain. Well, she said the intervention radiologists still want to do another cerebral angiogram to check that the fistula is completely healed, and I said I had my misgivings with all that radiation (it had caused hair loss, too). She said she would inform IR about it.

So I have to be careful about the next steps. I'm rather miffed at not getting into what I feel is the right clinic. On the other hand, if this is really depression, it will go away with time without meds. I also have to step carefully with asking my doctor for referrals, as this is a public health program and he has his limits.

Thanks for the suggestions and the MMPI information. It's good to know this stuff.