Updates and locations of Fibroscan??

[hopelyn1953]

I live in Port St Lucie, Florida, considered the Treasure Coast. I am going to have my second liver biopsy in 2 weeks. The first one hurt me so bad I have always said I'd rather die than to have another one. Well now I have to have another one and I'm not looking forward to it. They tell me they will use Versed so I won't remember the the pain, but that is worrisome too. I'd much prefer the Fibroscan! If anyone has any new info on this procedure please let me know! Has it been approved or are they still doing trials? I heard there is a Dr. Schiff in Miami that does them? Are the insurance companies covering this yet? Any info would be helpful!!

[portann]

Last I paid attention, yes, Dr. Schiff had one and may have been the first to have one in the U.S., possibly along with HR (Hepatitis Researcher), who bought his from France. I recall about five were available when I treated (Ahdfal, etc.). I think FlGuy knows about this stuff.

This recent study says: "Discordances of at least two stages between transient elastography and histological assessment were observed in 28 cases (11%)." :(

http://onlinelibrary.wiley.com/doi/10.1002/hep.22748/abstract

Maybe someone who's more familiar with this will step in.  It may be that it's more accurate for only part of the spectrum of fibrosis and misleading for the others.

[copyman]

yes there are only around 5 in the USA and has yet to be approved by FDA. After the last data on them not sure it will ever be approved. the data showed that it was not good at staging the middle stages. Not much better then a fibrosure blood test. And again test is only as good as the operator performing it.

insurance companies will not pay for something unless it is FDA approved. the way most people get them are by seeing one of the big name docs who has it in their office. I had one when I saw Dr Afdhal in Boston.

Good luck if you end up having the biopsy.

[tashka]

Did fibroscan stage you correctly?

[FlGuy]

My understanding is that Shiff (and his gang of liverheads) at U.M. in Miami were participating in the Fibroscan trial.  The intent was to compare the result of biopsy with the result of firbroscan in people who had both within a 6 month window.  Although I went to UM (I'm in Palm Beach) for a consult I did not get a fibroscan. I assume that they still have it and use it but I'm not sure - or if its used as a part of their diagnosing scheme.

[copyman]

FlG you are correct the protocol was to have or had a BX within 6 months.

tash, actually the fibroSCAN had me the highest at between stage 2-3. The fibroSURE had me stage 0 and the BX was stage 1.

I drove 600 miles to boston to see Dr Afdhal and mainly have a FibroScan hoping to avoid a BX. In order to get the scan I had to agree to have a BX within 6 months. To be truthful I wasn't going to get the BX but after seeing the scan result was so different from the fibroSURE blood test I ended up having the BX a few months later which was closer to the fibrosure test.

I personally lost some confidence in the FibroSCAN test. Just like the non-invasive FibroSURE blood test it is good at diagnosing no fibrosis or cirrhosis but not good at  middle stages

[portann]

thanks for that....I thought that was the issue with it, good at the two ends but unreliable in the middle...just couldn't remember for sure.

[tashka]

Looks like fibrosure was closer to the reality than fibroscan.

[copyman]

i used all three tests to decide I was probably a stage 1-2.

[mk_]

I have heard NY Mt. Sinai has one. I haven't  confirmed yet.

http://www.mountsinai.org/profiles/douglas-dieterich?id=0000072500001497131492&officeDrawer=biz

[Bali05]

like every tool it is about how it is used.
I am using FibroScan to monitor changes.
Just did three of them before and during tx all had same result 5.6 kPa
I will repeat same FS when I reach EOT and six months after

b

[Peachy48]

I just had fibroscan a couple wks ago at UM.. My hep doc is there, professor. They do them free on Tues. from what I understand- part of a trial. I will have another in 3 mo. I am not candidate for bx, I have medical issues that wont allow. Instead they are sending me for endoscopy, MRI and NASH Fibrosure..I hope it gives me a better outlook than Fibroscan, that score was 15.1 and kinda scary.. Hope it all works out for you.

[billm57]

it would be a better test if fibrosis were the only cause of liver stiffness - but its not - and fibroscan measures liver stiffness - which adds to the margin of error for this test

[tashka]

Well, in our case we know what the cause of stiiffness is-chronic hepatitis C.  

[Bali05]

FibroScan is most accurate at the ends of the spectrum F0-F1 or F3-F4.
If the FS reading indicates inbetween stages or cirrhosis it is advisable to treat or
to do bx to confirm.

Forget about FibroSure bloodmarker. I once did a bunch of those they varied
as much as 1 stage in 1 week.Out of all tests I find FibroSure most unreliable.
The first hepatologist I ever met said it was not worth the paper it is printed on.
All just personal experiences....

[hopelyn1953]

Thanks tashka and everyone who put in positives for this! BillM57 are you on all the boards? LOL!

[laurikis]

Is anyone still watching this thread?  I'm a bit late to the party (4/16/14) but I have info re: Fibroscan.  My husband is the sales rep for FibroScan in Florida.  Coincidentally Hopelyn, we too live in PSL.  FDA approval was last April 2013. Not too many out there yet but the list grows daily.  I won't drone on with  specifics of where they are, etc unless I see anyone is still following this question.   Hope I can be of help.

[flyinlynn]

Hi laurikis

If you would like to have your post noticed so more people can benefit from your information go to the top of the page and select post a question that way more peo

[flyinlynn]

Oops
More people will see your information

Good luck

[48weeks]

Yes please start a new thread with a list of places that currently have the fibroscan.  I live in the mid atlantic area so I'm hoping to hear of one maybe in Philly, Baltimore or DC.  Maybe even in Delaware where I live.  I think most in this forum would be very appreciative, thanks.

[peter5653]

I live in Stuart, FL and I am interested in the FibroScan test (transient elastography).  I see you live in PSL.  Did you ever find out who does this testing in Florida, preferably near to us? I have hepatitis C and want to know how much fibrosis I have.  I want to know if I can wait for the new all oral interferon free regimens that will be coming out the end of 2014. I will be consulting a hepatologist at Emory University when I go visit my sister who lives in the Atlanta area (July 17 appointment).  My gastroenterologist doesn't seem too knowledgeable about HepC and I didn't like the doctor I saw in Miami.  I may see another hepatologist at Shands in Gainesville in August.  Also, do you know if there are any Hep C support groups meeting in our area?  Peter Haritakis

[Livelife777]

I used to live in your area but have recently moved.   You do not need a Fibroscan to determine liver damage.   They find that out with simple blood work, and an MRI.    Dr Baskin, is the only guy in town that I would recommend.   I go to the Mayo Clinic in Jax, and only 3 hour drive.   You can get an evaluation there, and follow up locally if you choose.   I go to Mayo for all my labs and tests, since live closer now.   They are Awesome!    You will want to make an appt. with a hepatologist.  They are experts in liver disease, and all at Mayo are great!  Be well and good luck.        Kim

[susan400]

I had my one and only fibroscan down at Dr. Schiff's clinic  at the Univ. of Miami.  That was about 3 yrs ago, when I was participating in a clinical trial.  

Susan400

[jivacite]

The test is an MRE not an MRI and you are correct the Mayo in Jax has it and it is the same as a fibroscan

[hopelyn1953]

Hi there! Thanks for you help! PSL is the best! I've been here for 4 years now and we are staying! We moved from PB County and before that Key West for 10 years.