Experiences of Surgery

Re: Experiences of Surgery

Postby Carl » Thu Oct 31, 2013 7:59 pm

Bit of an old thread this one, but I thought I'd share.

I had my Pit Tumour removed on 28th May this year. Saw the Endo Consultant on the 24th May who confirmed a tumour, phone call from the hospital to have surgery the next day and actual surgery on the 28th. All a bit of a blur....pun intended, it was because my optic nerve was being squashed that they operated so quickly after diagnosis.

I had never had surgery of any kind, so the lead up to that fateful day frightened me witless. The 'nil by mouth' overnight, the waiting during the day and finally taken down for surgery at 3pm. Then waking up at about 6pm in recovery, with a nose full of padding and shaking like a leaf, with shock. They took me back up to the ward, where in an hour or so I stopped shaking, but later on that night started to bleed profusely from my nose and down the back of my throat. The doctor was quite worried so phoned the surgeon at home, after an hour or so of packing the bridge of my nose with ice, the bleeding stopped. But very scary.

They kept the padding in my nose an extra 36 hours because of the bleed, and when the padding came out, yuk! A very messy day ensued with almost constant nosebleeds. and also no hot food for the duration. I also contracted Diabetes Insipidus whilst in hospital, which is quite common after surgery apparently. The nurses were monitoring my fluid intake and outgoings, so quickly put a stop to the DI with an injection. However, it did come back for about 6 weeks and I had to take Desmopressin tablets....thankfully it has gone away again and I hope it stays well away!

I came out of hospital after 6 days, in not too bad a state all things considered. The team in the ward at Southampton were absolutely first class. However, after about 3 weeks I contracted several infections including sickness and diahorrea, which meant I couldn't keep my Hydrocortisone down, so I ended up back in hospital for another 5 days....and felt a good deal worse after that stay in hospital than for the surgery. However, all is going well now.

So all in all, very scary period leading up to the surgery, bad bleeding and unpleasant padding in the nose and Diabetes Insipidus. But it could have been worse!
Carl
 
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Re: Experiences of Surgery

Postby member_45527 » Thu May 02, 2019 11:01 am

Hi all,
I'm new to the Pituitary Foundation and just thought I would share my experience of having surgery.
I got diagnosed with a non-functioning adenoma with was 3.6cm in size and was pushing on my optical nerves causing me to lose vision. It was very scary when I got diagnosed as I was in the A and E and then sent for various blood tests and brain scans. All the time I thought I was going to die as no-one really explained the whole thing to me, perhaps because at the time they didn't fully know.
Once booked in for surgery I became increasingly nervous as the date approached. Again, thinking that I might die or have a stroke etc. In the end the trans surgery via the nose was not too bad. I had a bit of trouble just before being taken in to the pre-operating room I think due to nerves and trepidation. The anaesthetist was very nice though and put me at ease before administering the anaesthetic as quickly as possible. After the operation my eye sight was still very much the same. I had a 'pack' up my nostrils and couldn't breath through my nose so my lips became quite sore and dry as I was always breathing through my mouth. Also a lot of stuff (the pack) I presume would leak out of my nostrils so I had a bandage type thing taped just above my top lip to catch it. It has been 6 weeks now since that surgery and I am still unable to smell and I cant taste very much either. I have been advised that my taste should return though there are no guarantees as to whether the smell will.
After the trans surgery via the nose I was sent for an MRI scan and then later told that a fair bit of the tumour was still present. I remember my surgeon coming round to me in bed and asking me to go for another surgery that would allow him to get more of the tumour out. At the time I was still quite sedated and perhaps getting over the first surgery so I said I couldn't do it. The next morning however I had changed my mind slightly and decided I wanted to try and do it. This second surgery was a craniotomy which was very scary to think about especially after they explained what it was. The surgeon was very nice but I probably asked too many questions as I was very very nervous again. After this surgery I was sedated for a time. 6 weeks on and my scar is healing well. My eye sight in each eye is very good but together I get double vision when both are open. This I have been told is due to nerve damage which could have happened during surgery or from the tumour itself. I am hoping this will heal though and I will be able to see properly. I am still off work due to the eye and I also get tired quite quickly and sometimes still get headaches.
I hope this is of some interest and any replies would be nice.
Thanks,
Neil
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Re: Experiences of Surgery

Postby steve » Thu May 02, 2019 12:22 pm

Hi Neil, welcome to the Pituitary Foundation.
The forum can be a bit too quiet, but it is a great resource and you'll always get excellent answers to any questions you ask here.
Regards, Steve
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Re: Experiences of Surgery

Postby Carl » Thu May 02, 2019 1:01 pm

Hi Neil, it certainly is a scary time, and since my post back in 2013 a lot of things have happened, but I am still healthy. It does take quite some considerable time to recover and it sounds like you had a double-whammy with two operations. I hope your eyesight recovers, I had some slight optic nerve damage as well and in my case it caused slightly blurry vision in my left eye (mostly correctable by altering my spectacles prescription). But I'm told it won't get any worse, it is being monitored by an eye consultant.

I have a very good Endocrine team at my hospital (Portsmouth) and that is really what you need - a good knowledgeable doctor to keep you on the straight and narrow!
Carl
 
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Re: Experiences of Surgery

Postby plum » Fri May 03, 2019 7:25 pm

Hi Neil
I had a lot of problems with fatigue for a few years after surgery / radiotherapy. But it did get better. Eventually. However while we are 'in' the symptom there's no way of knowing how long it is going to last.
Have you been offered or asked for counselling? eg from MacMillan? I found my sessions extremely useful and I can say an essential part of the treatment.
Good luck with it all
Plum.
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Re: Experiences of Surgery

Postby member_45527 » Mon May 20, 2019 10:53 am

Hi all,
thanks for the replies. Its good to know there are people with similar experiences and willing to share. Its a bit of a rollercoaster. I have got in contact with MacMillan so hopefully they can help with the emotional side a bit.
Thanks again,
Neil
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Re: Experiences of Surgery

Postby Mgh » Mon May 20, 2019 8:03 pm

Hi Neil
It certainly is a roller coaster of an experience. What's more, one person's roller coaster is likely to be somewhat different from another's. However we have lots in common and that is why talking to one another can help. So also can reading the booklets produced by the Pituitary Foundation. If you haven't already found these on the website, it might be worth your while checking then out. They are free to members to download.
An ENT surgeon spoke at one of our recent support meetings. As someone who continues to live with issues with eyes and ENT since transphenoidal surgery in 2011, I found his talk very interesting and informative. The conclusion I have come to is that those of us who have continuig issues should seek advice from a relevant medical professional who also has experience of pituitary issues. Unfortunately they are few and far between and we are so grateful to be alive that we just muddle along!
The Pituitary Foundation, the nurse helpline, booklets and forum have helped me greatly. Keep talking and asking specific questions on here.
M
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Re: Experiences of Surgery

Postby member_45527 » Tue May 21, 2019 2:48 pm

Thanks M, I will check out the leaflets now. I had to look up what ENT meant but that is very interesting as it is a real shame that I cant taste and smell. I don't think I miss the smell too much at the moment but to go for the rest of my life without it will be strange I think. The taste has come back a certain amount, I can taste sugar, coffee to an extent, chilli, vinegar, salt and pepper but apart from that nothing else really. I think it has an effect on me that I don't notice as I would certainly love to have it back. But like you say, we are just happy to be alive so we muddle on. If you get any advice regarding the sense of smell and taste I would be interested to hear it. Also, if the op or tumour effects anything else that maybe we haven't been told about.
I would also like to say to anyone who is reading this and has upcoming surgery that it is not all bad. You are likely to be very scared if you are anything like me but you will learn a lot about yourself during the process. Also, you will likely meet some very nice people along the way. There will be things you have to do/go through that aren't very nice but that is all part of the process and you shouldn't be too scared. It can also bring you closer to people around you so and you might meet some new friends. If any support or advice is needed then you should ask on this forum. I was too terrified (I think) to ask anything before but it probably would have helped. Though just reading through the threads was helpful.
Thanks again,
Neil
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Re: Experiences of Surgery

Postby Mgh » Tue May 21, 2019 9:06 pm

Neil, when you are ready you might like to check if a support group meets in your area. The one I attend in Bristol is very lucky to have input from a range of excellent medical professionals who have experience with pituitary patients. I mentioned ENT (sorry, should have expanded to Ears, Nose and Throat) in my previous post. There have also been talks and Question and Answer sessions with specialist endocrinologists and nurses, neurosurgeon, opthamologist, pharmacist, radiologist, emergency service, psychologist, researchers, as well as social meetings.
I think it is likely that the effects of transphenoidal surgery on eyes, ears, nose and throat are poorly understood, under reported and consequently poorly dealt with. It would help greatly if pituitary patients could be cared for by a multi-disciplinary team who had some understanding of the interconnections and worked collaboratively!
Some ever so lucky people suffer no ill effects after their tumour removal but some others of us face lots of challenges. Some issues resolve themselves after a time. Perhaps your taste and smell will continue to improve. How long is it since your surgery?
We are not in an ideal world of medical care so the best we can do muddle on and support one another as we learn how best to look after ourselves. M
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Re: Experiences of Surgery

Postby Carl » Thu May 23, 2019 9:56 am

Again, I was lucky in my area, Southampton and Portsmouth. I come under Portsmouth for my Endo team, but the surgery was done in Southampton. They work very closely as a multi-disciplinary team (MDT). Following my surgery I had appointments automatically booked with an ENT specialist to make sure everything was healing ok and my surgeon attended this too as a joint clinic. The ENT specialist popped a camera up my nose (they spray a mild anaesthetic up your snozz first) and looked around to make sure healing was happening ok.

My sense of taste was 'off' at first and smell was vastly reduced because my nose was producing a lot of "muck" for quite some time. My smell and taste has returned to normal now but it did take some months. For me coffee tasted horrid for a long time. But as M says, it varies so much for everyone.

I'm not a great fan of support groups, but I have been to my local and it was very interesting, my surgeon did a presentation and they did an emergency injection demonstration and they have lots of different speakers at the sessions. Worth a try.

Something Neil said that really rings true for me "It can also bring you closer to people around you" - 100% agree with that
Carl
 
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