Experiences of Surgery

Re: Experiences of Surgery

Postby member_41389 » Thu May 23, 2019 8:13 pm

Hi Neil
The ENT guy at the local support group mentioned one possible help which you may not know about. Apparently they give all their patients a Neilmed Sinus Rise kit as it helps to clear out the rubbish. Using one is not a very pleasant experience but I found it did the trick for me. This link https://www.guysandstthomas.nhs.uk/resources/patient-information/pharmacy/neilmed-sinus-rinse.pdf has a description. I bought my kit from a local Boots so they are generally available.
Tim
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Re: Experiences of Surgery

Postby Mgh » Fri May 24, 2019 8:34 am

Tim, thank you for reminding me of that advice about the Neilmed Sinus Rinse. Two heads are definitely better than one. I had forgotten that detail!
Carl is very lucky in that he appears to have 'joined up' medical care that he can depend on. I think the effect of such reassurance is underrated. Neil, I hope you will find it helpful to know that a variety of possible issues is considered when patients are treated by a good multi disciplinary team. Therefore, It is not asking too much to have your continuing concerns taken seriously and monitored, at the very least. M
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Re: Experiences of Surgery

Postby Carl » Tue May 28, 2019 7:32 am

It is a yes from me too about the "Neilmed Sinus Rise kit". As soon as the packs came out of my nose the ward sister showed me how to use the kit and it helped a lot (although she chose about 10pm to do the training, which I wasn't overly appreciative of at the time!). Tended to drown myself with it initially until I got the technique correct :mrgreen:
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Re: Recent Surgery

Postby member_45745 » Tue Jul 16, 2019 5:56 pm

Hi All

Was interested to read all the surgery experiences, I am 2 weeks post Op and wonder if anyone can help, I was a week in hospital surgery up the nose, went fine, not all removed . But as far as I know successful. But I am still getting an awful lot of nasty stuff coming down my nose,it is very difficult not to blow and I actually have done as the pain is too much, am just wondering if anyone else experienced this, I am following the nasal douching routine. I can’t taste or smell at all,but I expected that.
I am on the steroids and got a blood test yesterday . I hope it’s not just me being impatient.

Thanks Kay.
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Re: Experiences of Surgery

Postby Carl » Thu Jul 18, 2019 8:49 am

Lots of nasty nasal stuff was 'the norm' for me for quite a while. I assume having an endoscopic set of tools and camera up your nasal passages annoys them quite a lot. My nose produced a lot of gunk for quite a few months afterwards, initially it was quite bloody too. I had several ENT consultant appointments arranged by my Endo who put a camera up my nose to check everything was healing and to make sure he cleaned out 'crusting' of the nasal passages to ensure there was no infection. It did get better and for me it took quite a while, everyone takes different times to heal though.
Carl
 
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Re: Experiences of Surgery

Postby member_45745 » Thu Jul 18, 2019 12:17 pm

Thanks Carl I must be patient, When you get back home it’s easy to want to be on your feet straight away doing a normal day the other night I think I blew out the skin graft apparently I sent a photograph and it is possible so now I am watching out for the 3SL leak And again not trying to jump to conclusions. Again many thanks Kay
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Re: Experiences of Surgery

Postby Carl » Mon Jul 22, 2019 8:27 am

A "3SL" leak? Or do you mean a CSF leak (Cerebrospinal Fluid)?

By the sounds of it, if you had a skin graft then you had a CSF leak during the operation in which case it is possible you are more susceptible to a leak after surgery. So definitely something to keep a close eye on. I thought I had developed a CSF leak although it turned out not to be the case, see my blog entry from the time at https://chpituitarytumourblog.blogspot. ... pital.html

Let's hope yours is a false alarm and take it easy.
Carl
 
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Re: Experiences of Surgery

Postby member_45745 » Wed Jul 24, 2019 7:28 pm

Carl wrote:A "3SL" leak? Or do you mean a CSF leak (Cerebrospinal Fluid)?

By the sounds of it, if you had a skin graft then you had a CSF leak during the operation in which case it is possible you are more susceptible to a leak after surgery. So definitely something to keep a close eye on. I thought I had developed a CSF leak although it turned out not to be the case, see my blog entry from the time at https://chpituitarytumourblog.blogspot. ... pital.html

Let's hope yours is a false alarm and take it easy.


Thanks Carl I read your blog that sounds horrendous. What an awful time for you I can imagine it took a long time to get over that. You are right I did mean CSF leak and today as it happens I ended up at hospital today thinking it had happened Two more awfull days And blood trickling down my nose .CT and blood taken. Seems I’m okay apart from sodium level being very low and still have an inflammation in the blood no surprise there. Anyway in the least feel reassured and looking out for any nasty leak. I’m going to take it easy now as you said.
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Re: Experiences of Surgery

Postby Carl » Thu Jul 25, 2019 7:44 am

The important thing is it sounds like your hospital are taking your condition seriously and you are able to raise your concerns, get a CT scan and bloods to make sure everything is ok. Having that support there when you need it is key. Many-many people get through this surgery without a hitch and although it does knock your nose/sinus area around, very few will actually develop a CSF leak or infection....unfortunately I got an infection, but what made it worse was that I didn't recognise the adrenal crisis part until it was too late. Education, close monitoring, support from your doctors and rest will hopefully see you good.

My blood results were all over the place for a little while after my surgery, including low sodium. Your body will sort itself out once it works out what on earth has been going on :)
Carl
 
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