My personal gamma knife experience 1-24-13

[Nank]

I just had the blood work done pre-Gamma also.  Never had bloodwork before having an MRI.  GK is 7/25!

[robinb]

There can be a big difference in MRI equipment from one facility to another.

When I tore my ACL two years ago, I had my first MRI. Room was freezing and the noise was unbearable. Then I had an MRI on my other knee and went to a different place. Their machine made knocking noises instead of clanging. What a difference!

At UPMC, for my pre GK MRI, they also had the quiet machine.

When I had to have my first brain MRI my ENT recommended a facility that has "Open Sided MRI" machines. Again, what a difference since your head has to go in the thing. In this you're lying under it and can see out the sides.  Just knocking, not clanging and not claustrophobic. Nice music. Gave me juice and freshly baked cookies when it was over. Some docs may say Open Sided MRI has lower resolution, but this radiologist diagnosed my AN and had report to my ENT within minutes.  This was the MRI I used to send to places for opinions as I did my research. No doctor had a problem with its quality.

My point here is to let everyone know of options in choosing a place for your MRI. There can be big differences that can make the experience less claustrophobic and stressful.

[arizonajack]

Well, I made my appointment for 6 month MRI for August 7th....

I just made mine for August 1st.

[nftwoed]

Hi;

   "No doctor had a problem with its quality." Do you mean just UPMC Drs? There has been controversy in some spheres with open MRI vs. closed with open not having the 'Tesla power' necessary to well visualize AN. I believe at least 1.5 T is necessary.

There can be a big difference in MRI equipment from one facility to another.

When I tore my ACL two years ago, I had my first MRI. Room was freezing and the noise was unbearable. Then I had an MRI on my other knee and went to a different place. Their machine made knocking noises instead of clanging. What a difference!

At UPMC, for my pre GK MRI, they also had the quiet machine.

When I had to have my first brain MRI my ENT recommended a facility that has "Open Sided MRI" machines. Again, what a difference since your head has to go in the thing. In this you're lying under it and can see out the sides.  Just knocking, not clanging and not claustrophobic. Nice music. Gave me juice and freshly baked cookies when it was over. Some docs may say Open Sided MRI has lower resolution, but this radiologist diagnosed my AN and had report to my ENT within minutes.  This was the MRI I used to send to places for opinions as I did my research. No doctor had a problem with its quality.

My point here is to let everyone know of options in choosing a place for your MRI. There can be big differences that can make the experience less claustrophobic and stressful.

[nftwoed]

Hi;
   I thought they could power back the larger machines?
   Many are performing MRI with cochlear implants in place. They always used to surgically remove the implant and reinstall it.

[nftwoed]

Hi;
   I think originally, this was a Hopkin's complaint?

[robinb]

In addition to Dr. Lunsford at UPMC, copies of this MRI were given to Dr. Friedman at House, Dr. Chang at Stanford and Dr. Kondziolka at NYU.  When I go back to Open Sided MRI on 8/7 I will ask about the terms you mentioned, I am not familiar w/this.

"No doctor had a problem with its quality." Do you mean just UPMC Drs? There has been controversy in some spheres with open MRI vs. closed with open not having the 'Tesla power' necessary to well visualize AN. I believe at least 1.5 T is necessary.

[nftwoed]

Hi;
   The issue was controversial several years ago as I recall an NF-2 pt. tried on open MRI, but moved to closed MRI as Drs. were not satisfied with the images. That was at Hopkins. I believe the machine at the time had 1.0 T.
   Maybe the machines were changed to produce greater magnetism? I'm unsure if distance to the magnetic field was a factor.
   Seems there also exist scanners where one stands up in?

[robinb]

I have heard of the stand up ones; did not run across facility that had them.

At any rate, even if my open sided MRI was 1.0 or less, I have a small AN, it detected it.

The radiologist's written report was very detailed. The CD I sent to all 4 docs was prominently marked with the name of the facility; "OPEN SIDED MRI of Laguna Hills".

So here we are.

[robinb]

I forgot to add that the Radiologist's report clearly said:

"The study was performed using a Hitachi Airis Open MRI unit." There much more detail written on the findings.

When I go back for my 6 mo follow up I am going to ask which model and some more questions. However, I am satisfied that the machine and radiologist provided accurate details. It may be similar to GK in that there are many centers but what's more important is the experience of the doctor.

[nftwoed]

Hi;
   I wonder if the expectation for MRI isn't higher for NF-2 ANs as the nerves are positioned differently in the tumor capsule? I've had a local MRI rejected by Mayo Clinic.
   The other two instances I've heard of, both included NF-2 pts. who were post FSR.

[robinb]

Well today I went for my blood work and audio test.

My last audio was in early December; hearing was at 40% then. I know it went down from that time till GK in late December. It has continued to decline, as evidenced in audiogram today. But to me it wasn't usable in December, so worse really makes no big difference to me. I can tell it continues to fluctuate and my ENT offered another round of Prednisone since it has responded well before to this regimen. Before I start it, will check in w/Dr. Lunsford for his opinion.

Six mo MRI to follow on Aug. 7th.

[robinb]

Update on steroid; Dr. Lunsford said If ENT thinks it would help with my hearing, then there is no harm to take it from a neurological perspective.

So starting it today, will report back. I have only had 4 spasms since June 30, so looking better!

[robinb]

Had MRI this morning; have disk, wont have report for a couple of days.

I wont even try to read it; wont have radiologist report till Friday. Not my expertise and don't want to speculate. Seeing my ENT for follow up audio tomorrow, so will see if he can; otherwise will wait to hear back from Dr. Lunsford next week.

Finished steroid round, hearing improved ever so slightly; not materially, so it is what it is. May try another round as I don't have any side effects from it.

[robinb]

Hi All-

Here's my 6 mo post GK/MRI update:

My facial spasms down to 1-2 per week with the same triggers; brushing my teeth or turning over or suddenly lying face down from standing up. Still on 100mg of Gabapentin 2x per day. Doc says to continue.

Went back to ENT for another audiogram after the steroid round and hearing improved a great deal; still not good enough for word recognition. Both ENT and Dr. Lunsford say ok to very occasional repeat of this but its not a long term solution.

Tinnitus mostly off, not noticeable enough when on.

When I got the radiologist report from the MRI I was very alarmed as it indicated 6mm of growth; in his words"there is now a significant extracanicular component to the porus acusticus contacting the pons measuring 10x9 mm and transverse 20.7mm. On prior exam this measurement was 13mm". Note that MRI when I had GK had it at 6mmx8mmx14mm. 

Needless to say, freaking out and sent to Dr. Lunsford. I called his PA as I was scheduled to go to review when he returned on August 19th. Lana said he may be in the office on the 16th and she's try get him to review then. Well he did, here's what he had to say:

I am not certainly opposed to using a trial briefly of corticosteroids if you note fluctuation in hearing, but in general, it is not a good long-term solution.  As you know, it is our hope that hearing can be stabilized.  In addition, we hope to stabilize further tumor growth.  Approximately 4-5% of patients will have some measureable temporary volume enlargement of the tumor in response to the maximal time of radiosurgical treatment.  This will stabilize at this level or shrink more over the course of an additional period of observation.  There is a long-term 98% chance of tumor-growth control.
 
            I would get a new scan done again in one year.  Overall, we are quite comfortable with the current appearance.  There is no evidence of any reaction or edema.

He also said to continue with the low dose Gabapentin.

Needless to say, not warm and fuzzy like his PA, but that's not his style.  I still have questions, so going to have a call with him this week and will report back any details.