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Post-surgery consult with FP today

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Post-surgery consult with FP today

Post by Tigerlily on Tue Jan 06, 2015 6:17 pm

Hello Everyone

I've just got back from my post-surgery consult with FP today (op was on Dec 11). We are both very pleased with the way the scar is healing and he has suggested I massage the area with some moisturising cream for a few minutes daily for the next 4 weeks. I think this is to keep the scar tissue pliable, so to speak, so that it doesn't form into knots along the scar line.

The not-so-good news was that the histology report on the 3 adenoma removed describes them all as hyperplasic, and the 4th one that he left in "looked normal". I asked if this would put me in the frame for MEN1 or something similar (in view of my eyesight problems, skin issues, past melanoma, present cysts, and gastro issues) but he was not happy to pursue an investigation of this and told me to go back to my endocrinologist for follow-up.

Although I agreed with his suggestion that it might be best to "rejoice at being cured" and get a life back, at my age (62) I still have a niggling requirement to have MEN1 and other similar manifestations completely ruled out before I can do that - mainly because of the 3 glands all being hyperplasic.

Perhaps Anna, and anyone else with experience of a similar situation would let me know what they think - and all other thoughts would be appreciated, as always.

Love from Tigerlily xxxx

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Re: Post-surgery consult with FP today

Post by Jasmine2 on Tue Jan 06, 2015 8:25 pm

Hi Tigerlily, this is just a flying visit to the forum as I have 'stuff' going on and my broadband has been exasperatingly intermittent for a few days, but just to throw my tuppence ha'penny into the ring, as FP holds Dr Jeremy Cox in such high regard, and your previous endos have been gonks who don't deserve a second chance to c*ck things up for you (Miles Levy excluded) - especially with something so important as ruling out MEN - why not ask your GP to refer you to JC?

Jasmine x
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Re: Post-surgery consult with FP today

Post by Tigerlily on Tue Jan 06, 2015 10:35 pm

Thanks for your input, Jasmine - and our broadband has been intermittent for weeks now - must be something over the east of the country!

FP seemed to think that I should "stay local" for any MEN investigations - as if they would have any better ideas about that than they did about pHPT! Gonks all round, as you kindly put it.

That's a thought - I'd forgotten about Miles Levy. Surely he should be capable of ruling out MEN?

Geez, Jasmine - that means more weeks of preparing a case to justify it, and I'm so tired of all that. But if that's what it takes .....I wouldn't be making a fuss about MEN1 if I'd just had a solitary single adenoma, but with having had 3 hyperplasic ones removed and already having had a malignant melanoma, I feel I'd like someone to rule it out conclusively - and not just say "there's no way you can have MEN 1", just like they all said "there's no way you can have pHPT".

I'll hold Jeremy Cox in reserve, thanks for that. You go see him first!!

I should say that I did put in a good word for you today with FP. We tripped up on the confidentiality issue, of course, but I knew he knew who I was talking about when I asked him to take good care of my friend.

I learned a lot from my chat with him today. Apparently, PTH adenoma removal is a simple op (when done by an experienced surgeon), takes only 20/30/50 minutes depending on conditions, and requires only light anaesthesia. I told him that there was a queue of other PTH sufferers forming behind me, at which he said that he really had to spread patients amongst his colleagues, and mentioned Mr Neil Tolley as another endo surgeon at the Hammersmith (his NHS sec is also Anne-Marie Feeney - FP's secretary).

After seeing FP, I had lunch in the hospital restaurant, and then got the tube back to Oxford Street. I had a good look in Liberty's sale (no purchase), trawled Uniclo for some warm vests (3!) - and then my feet gave out so I got the train home.

Early night tonight - back on the horse tomorrow.

Love from Tigerlily xxxx

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Re: Post-surgery consult with FP today

Post by Kathi209 on Wed Jan 07, 2015 4:02 am

Hi Tigerlily

http://www.endocrine.niddk.nih.gov/pubs/men1/men1.aspx  


Here is a link on MENS1 might be helpful. If it is MENS the surgery for parathyroid is 3 glands removed most of the time only leaving 1/2 a gland. I hope it is not MENS. But at least I think that would be the right para surgery for it,  best to check it out. There is quite a few that have 3 and 1/2 removed that don't have MENS just big fat juicy para's. There is a blood test for MENS which I am sure you know. I did see in another post your labs look good on the ca/pth. Hope Anna will shed some light on it. Hugs cat cat cat Kathi

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