Strange recurrence (not in me)

[BillCrum]

I recently heard from the wife of a CLIPPERS sufferer who has had a strange (and worrying) recurrence and wondered if anyone out there had experienced anything similar.

Essentially, this person had responded to treatment to the extent that an MRI was declared clear. However 3 months later after suffering headaches he was rescanned and a 12mm "tumour" was found in the cerebellum. This was biopsied, at which point it had grown to 19mm, and found to be consistent with the original CLIPPERS diagnosis, but was abnormally large and hard while still being considered "benign".

He has been treated with high-dose methylprednisone followed by a tapering lower dose and is awaiting another MRI. However his initial CLIPPERS symptoms have recurred which is understandably worrying.

Does anyone out there have any similar experience they can share?

[Terry]

Hi Bill,

I haven’t had this experience; however, I’m curious why a tumor would be consistent with CLIPPERS.  I’m sorry to hear the CLIPPERS symptoms have returned.

On Jun 16, 2015, at 4:04 AM, BillCrum [via CLIPPERS] <[hidden email]> wrote:

I recently heard from the wife of a CLIPPERS sufferer who has had a strange (and worrying) recurrence and wondered if anyone out there had experienced anything similar.

Essentially, this person had responded to treatment to the extent that an MRI was declared clear. However 3 months later after suffering headaches he was rescanned and a 12mm "tumour" was found in the cerebellum. This was biopsied, at which point it had grown to 19mm, and found to be consistent with the original CLIPPERS diagnosis, but was abnormally large and hard while still being considered "benign".

He has been treated with high-dose methylprednisone followed by a tapering lower dose and is awaiting another MRI. However his initial CLIPPERS symptoms have recurred which is understandably worrying.

Does anyone out there have any similar experience they can share?

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[BillCrum]

My guess is that the biopsy showed that the "tumour" tissue had similar properties to CLIPPERS lesions? Which probably doesn't 100% prove it's the same thing given that I don't believe even direct tissue examination can absolutely confirm CLIPPERS ....

[Terry]

Did u get this or did he just send to me?

Sent from my iPad

On Jun 17, 2015, at 11:59 AM, BillCrum [via CLIPPERS] <[hidden email]> wrote:

My guess is that the biopsy showed that the "tumour" tissue had similar properties to CLIPPERS lesions? Which probably doesn't 100% prove it's the same thing given that I don't believe even direct tissue examination can absolutely confirm CLIPPERS ....

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[Will]

Yes, in lots of ways this story parallels mine. First a layman, a wife might call CLIPPERS 'lesions' 'tumours'. There I even called them lesions when they are but areas of inflammation. It sounds by the description that this person was 'declared clear' and probably stopped prednisone. A relapse occurred and on followup MRI a new area inflammation was found. CLIPPERS is the likely diagnosis because CLIPPERS is characterized by relapse and remission. A radiologist could tell relapse on comparison with old images and if the first diagnosis was CLIPPERS and the "lesion' looks and acts the same with contrast then to me this seems plausible and likely CLIPPERS recurred.

This follows my story. After 3 years of a ridiculously slow prednisone taper I had a relapse of symptoms and a followup MRI showed a new "lesion' in the pons. That was 4 months ago. My neurologist upped my prednisone and I feel a bit more stable but I'll be getting another MRI next Wednesday.

[BillCrum]

Thank's Will, that's very helpful.
I think the other thing is I get used to thinking of CLIPPERS in terms of lots of small lesions, but there do seem to be cases with isolated larger ones. In this case, they were concerned enough to do a biopsy so I guess it probably looked unusual in some way. Anyway, thanks for sharing your experience and good luck with the MRI.

[Will]

Yes, I too think of CLIPPERS lesions as being small and numerous but after my original lesions cleared via prednisone, I developed a single larger lesion on the pons. At first I wondered if this was something else besides CLIPPERS but was reassured by doctors that it was likely a relapse as its appearance on MRI and my clinical symptoms were consistent with a relapse and not something new and different. We'll see next week.

[cherokeedreaming]

Hi Bill, Donna here in Australia, thank you for posting about Rob's strange occurance with Clippers and thank you Will for your kind words and wisdom. An update from our Neurologist has advised that the tumour is granular in type so wonder if this is granulomotosis with Clippers, after many days of testing they have definitely confirmed the Clippers diagnosis with an attached aneurism which they diffused with a needle to take off the pressure. Unfortunately even after an 8inch wound and 37 staples and huge doses of steroids, my husband still has incredible headaches, wobbly gait, hand tremors, muscle weakness, eye problems and facial parasthesis, he is continuing on 10mg Prednisone, 10mg of Imuran(Azathioprine), Tramil, endep, Panadol and various other pain killers but nothing seems to work.
At this stage we have another MRI in July late, with a specialist appointment in early august, they have advised that they may go in again, though to what end we are not sure as there is nothing they can do to fix it because it is in the area of motor skills, breathing, sight, hearing etc. We also don't believe because of his current level of pain that the tumour has not shrunk very much since the biopsy.
Will keep you informed of any further developments
blessings
Donna Murden

[Kara]

Hi there, I was first diagnosed with a brain tumour on the brain stem, had a biopsyi. Was then discovered to show no signs of tumour or demylesayion ( so not Ms) 4 years later I got a clippers diagnosis. Had my latest Mari last month with no change on my Mari so that makes me happy. Would love to know how anyone else is doing 5/6 years after diagnosis.
I am medication free, still suffer symptoms but use diet/ lifestyle as choice of drug 😅

[Camille]

Hi Kara just diagnosed with CLIPPERS had a biopsy done in January and then started on 20 mg of prednisone and all my symptoms started to disappear slowly (couldn't walk, talk, had double vision and numbness of my face, uncontrolled crying and I'm not a cryer) so now my neuro wants to start me on Methotrexate and start tapering the prednisone I'm a little worried but I lov my neurologist so I have complete faith in him! That's about it except for some short term memory loss I'm about 95% back to normal thank GOD!