My Experience of Pituitary Tumour Surgery (Transsphenoidal Hypophysectomy)… Twice!

Before my first pituitary surgery, I was super nervous. I read as much as I could online about the surgery and tried to find blogs where people wrote about their experience with pituitary tumour surgery. Finding out about other people’s experiences really helped me feel more like I knew what to expect when they wheeled me into the operating room (well actually, I was already unconscious by that point… but you know what I mean).

What goes around comes around, so this page aims to give as much information as possible about my personal experience of pituitary surgery… Not once, but twice!

Why Do I Need Surgery On My Pituitary Tumour?

Whilst pituitary adenomas are usually benign tumours (i.e. they are not cancerous), they can cause problems due to their size and position in the head. These problems range from headaches to sight loss if the tumour is putting pressure on the optic nerve. When tumours produce hormones as well, the excess hormones can also cause a range of issues.

In my case, my TSHoma pituitary tumour produces Thyroid Stimulating Hormone (TSH), which causes symptoms of hyperthyroidism. But there’s a whole menu of strange symptoms that can be produced, depending on the exact type of tumour. Pituitary adenomas which produce growth hormone can cause gigantism, while those which produce prolactin can cause lactation (milk production) …even in men!

Surgical removal of a pituitary adenoma may successfully remove the entire tumour, or it may “debulk” the adenoma, reducing its mass. Although complete removal is the ideal, it may not always be possible if the pituitary adenoma is large, very hard, or situated close to major blood vessels. Debulking the tumour may also lead to a significant improvement in symptoms, including an improvement in eyesight in cases where it has been affected.

In my case, although I have had pituitary surgery twice (in 2011 and 2013) I still have a bit of my TSHoma tumour left. That’s currently being treated with medication.

How Do They Do Pituitary Tumour Surgery?

The most common type of surgery for pituitary adenomas is transsphenoidal surgery. This usually takes place through the back of the nose, or through an incision made under the lip and through the gum. Very occassionally, if the tumour is especially large or awkwardly situated, it may be necessary for the surgeon to operate transcranially, where the skull is opened to allow access to the pituitary.

I had transsphenoidal surgery both times that they operated on my pituitary gland. They went through the nose, which sounds very weird, but has the major benefit of leaving you with no visible external scars at all.

If you’re not the squeamish kind, you can watch a film of transsphenoidal surgery for a pituitary adenoma by clicking here… I did before my TSHoma surgery, and weirdly it made me feel much more informed about what I was about to experience.

Should I Have Surgery On My Pituitary Tumour? What About The Risks?

I’m a member of a number of pituitary tumour support groups on Facebook, and a really common question is “Should I have pituitary surgery? For people who have had surgery, do you regret it?”. Ultimately, the decision to go ahead with surgery is something only you can answer, in consultation with your doctors. It’s a case of balancing the risks and benefits of surgery against the risks of leaving the tumour where it is.

Personally, I have no regrets of going ahead with my pituitary tumour surgery, on either occasion. Even though it was quite a long recovery and they didn’t manage to completely remove the tumour, on both occasions it did give me a significant and sustained improvement in my symptoms. – both the symptoms of hyperthyroidism and those related to the size of the tumour (which for me was mainly headaches).

What are the risks of transsphenoidal pituitary surgery?

Although transsphenoidal pituitary surgery is a relatively common operation, as with any surgery, there are risks! After all, as they’re operating inside your head, it is technically brain surgery.

The most common risk is that of damage to the pituitary gland itself, resulting in the patient becoming unable to produce one or more pituitary hormones. Consequently, hormone replacement may be required after the surgery. Diabetes insipidus, a condition with symptoms of excessive thirst and urination, sometimes occurs after surgery due to the pituitary being unable to produce a hormone called vasopressin. It is often temporary and can be treated with medication, but is permanent in 1-2% of patients after pituitary surgery.

Other risks of transsphenoidal pituitary surgery include cerebrospinal fluid (CSF) leak, which is associated with an increased risk of meningitis, and a small risk of blindness as the pituitary is close to the optic nerve. Because the surgery is performed very close to the carotid arteries – major blood vessels supplying blood to the brain – there is also a very small risk of massive bloodloss and death.

But after all that doom and gloom, if you’re going to have pituitary surgery – perk up! This is about the least-bad operation you can undergo and still tell everyone you’ve had brain surgery. No-one will ever be able to make you feel bad about being forgetful again.

My Experience Of Recovery From Transsphenoidal Pituitary Surgery

The official line is that, after surgery, patients who don’t experience complications are likely to be in hospital for 3 – 9 days. The recovery period for transsphenoidal pituitary surgery is about 4 – 6 weeks, but some people need longer.

What Can’t You Do After Pituitary Tumour Surgery?

After transsphenoidal surgery, there are a few restrictions, mostly to reduce the risk of a cerebrospinal fluid leak. You’re not supposed to drink with a straw, or sneeze. And it’s very easy for doctors to tell you “don’t sneeze”, but it’s an awful lot harder to actually stop yourself sneezing!

My recommendation is that when you feel a sneeze coming, you should press the bottom of your nose (where the septum meets your upper lip), hard. It worked for me for three weeks in hayfever season… Then my luck ran out. The first time I sneezed after surgery I was so scared it would be super painful, or would set off a cerebrospinal fluid leak! But it was totally fine.

You’re also not allowed to swim or go on a plane for at least three months after surgery, and you should avoid lifting heavy objects or driving for a while as well.

My Experience After Transsphenoidal Pituitary Surgery

When I woke up after my second surgery, the first thing that happened was a nurse offered me a drink. I gratefully had some water through a straw as I was parched. Oops! Of course, after pituitary surgery you’re not supposed to drink with a straw. I guess the nurse forgot. It prompted a nice gush of blood from my nose, but no major harm fortunately.

After my first pituitary surgery, my nose was packed with bandages, whereas after my second surgery it was packed with a special dissolvable foam. The foam was much better than the nasal packing! The bandages had to be removed before leaving the hospital and I’ve got to be honest, it really hurt. The foam didn’t need removing, it just gradually dissolved over a few weeks. It did occasionally make a weird creaking noise/sensation in my sinuses, but overall it was fine.

After the surgery, I had to take hydrocortisone pills for six months until my pituitary gland started producing steroid hormones on its own again. In the hospital, they keep a close eye on you to check how your hormones are reacting after the surgery, including blood tests every couple of hours. That can get a bit draining, especially in the middle of the night! I also had to wear compression stockings for a couple of weeks to reduce the risk of blood clots… Attractive. But on the other hand, I did get two free pairs of compression stockings, which I still use for long-haul flights!

After my second surgery, the doctors recommended using a sinus rinse. This is basically washing warm salty water through your nose and sinuses to clean them. It helps to clean out the blood and reduce infection after the surgery. It’s a very weird sensation to get used to, but it really helped my nose feel much better much faster, compared to the first surgery.

My Experience Of Discharge From Hospital

My experience was that I spent three nights in hospital the first time, and two nights after my second surgery. The first time, they discharged me quickly because there was a snow storm forecast which could have prevented me getting to my parent’s house in Kent, where I was going to recover.

The second time, they discharged me even earlier. It was because I was getting so little sleep on the hospital ward that it was actually adversely affecting my recovery. It’s difficult to sleep in hospital at the best of times, but I was on a neurosurgery ward with another patient who was extremely distressed and crying or screaming most of the night, and another patient who had a tracheostomy which needed vacuum suctioning loudly, several times an hour. Not anyone’s fault, but by the second day my blood pressure was crashing and my doctors thought it was due to the lack of sleep. So tey sent me home early, and lo and behold, my blood pressure improved straight away.

My Experience Of Recovery At Home

I was off work for six weeks both times, and both times I needed a phased return. The main symptom I had after surgery was extreme exhaustion. You might expect that after brain surgery, you would have a lot of headaches, but I only had them occasionally. I wasn’t discharged with any painkillers – they just tell you to use paracetamol, which generally I found okay.

As well as extreme tiredness and the odd headache, I had a very stuffy sore nose. That improved quite quickly over the first week or so.

Reading about other people’s experiences of recovery from pituitary surgery, there seems to be a lot of variation. Some people are mostly up and running after a few weeks, but others like me take a lot longer. I would certainly plan to be totally out of it for a month. I would have struggled to cook for myself etc. in that time, so if you live alone I would suggest arranging support and getting a lot of ready meals in!

I also think that one of the most difficult things about the recovery is that because the scar is inside your nose, you look totally normal. Strangers won’t think twice about pushing past you in a public place, because they can’t see that anything’s wrong. So I would also recommend trying to go with a friend when you first start getting out and about after surgery, especially if you are still feeling a bit delicate.

My Experience Of Longer Term Effects From Pituitary Surgery

I found that I had a lot of trouble with my sinuses after the second surgery in particular. Nasal rinsing helped, but it was a couple of years before they really improved. The main symptom was really bad sinus headaches. It was caused by the scar tissue from the surgeries meaning that my sinuses weren’t draining properly. Over time, the scarring shrunk, and fortunately it’s not a significant problem for me any more!

That’s really the only significant long term after effect I had from either surgery.

Pre-Operative Assessment For Transsphenoidal Pituitary Tumour Surgery

It’s normal to go into hospital for a pre operative assessment before any kind of surgery, and pituitary surgery is no exception!

My Experience Of Pre-operative Assessment

At my pre-operative assessment, I met a very nice nurse and her very nice (and extremely lengthy) questionnaire, which we got to fill in together. What a treat! I got to answer questions about my health, fitness, medications, allergies, medical history and more. It was like being on Mastermind, except the nurse was a lot more judgemental than John Humphrys when I couldn’t remember an answer.* Possibly it was more like University Challenge, in the rounds where you’re not supposed to confer.

The pre-operative assessment was also a chance to find out more about the practical side of things. For instance visiting hours for my ward in the hospital, what would happen in the lead-up to my surgery, and exactly how nice my parents had to be to me for how many weeks afterwards.

Also at the pre-operative assessment, you get weighed and measured and have your blood pressure taken. If it’s a little low like mine usually is, and if they suddenly realise that (thanks to their insane waiting times) you haven’t eaten anything since before you turned up to the hospital six hours ago, they may give you free cake and biscuits. These are of a surprisingly high quality for hospital-supplied nibbles.

Oh, and they swab you to check whether or not you have MRSA bacteria present on your skin. If you do, you might be put last in the day’s queue for surgery.

A word of advice to anyone about to undergo pituitary surgery: don’t tell your friends and family that you’re going to a pre-op assessment for a transsphenoidal hypophysectomy. They will either gaze at you blankly and without comprehension, or they will hone in on the words “pre-op” (as in TRANSSEXUAL) and “blah-blah-physectomy” (sounds a bit like VASECTOMY) and ask if you’re secretly a man.

My Experience Of Meeting The Surgeon

My first piece of advice for patients about to undergo transsphenoidal pituitary surgery: when they invite you to the hospital to “meet your surgeon” before the surgery, don’t expect to, you know, actually meet your surgeon. Obviously, that would be mad.

My second piece of advice to patients about to undergo pituitary surgery is this: bring a book to your surgical assessment. Better yet, bring two books and a small camping set. Having spent a lot of time at the hospital in recent years, I have become used to lengthy waiting times. I can happily sit for an hour at a stretch examining other patients’ facial features and trying to work out who’s got acromegaly. I can read trashy magazines and become fully immersed in Jordan’s Latest Love Rat Shocker (With Exclusive Pictures Inside!). But I think Neurosurgery holds the record for my longest wait yet. And unlike the Endocrine Unit, the neuro department is miles from a coffee shop.

When I actually got in to see a surgeon – not the surgeon who was actually going to drill a hole in my skull, obviously, just a random surgeon – it was a fairly brief chat. We had a butchers at my MRI and discussed the possible complications of surgery, as follows:

1. death.
2. death
3. DEATH

I’m pretty sure he mentioned some other stuff too, but I have to admit that’s what I focused in on. In fairness, the risk of death associated with transsphenoidal pituitary surgery in an otherwise-healthy patient is pretty low. Of course surgeons have to mention in advance that there’s a slight risk of death, as with any operation involving general anaesthetic or sharp knives near major blood vessels. If they didn’t mention it, I’m sure people would complain when they woke up dead.

That’s actually a key point. The doctors and surgeons are so keen to make sure that they explain the risks of the procedure that it can end up sounding REALLY scary. Somehow they often forget to mention the expected benefits as well. Obviously complications do happen and it’s important to be prepared for that, but they only recommend surgery if they think you need it and that it will benefit you.

Why Is Pituitary Adenoma Surgery Called ‘Transsphenoidal Hypophysectomy’?

Random point, but the full name for standard pituitary tumour surgery is transsphenoidal hypophysectomy. On reflection, this seems strange because “hypophys-ectomy” implies that they’re aiming to cut out (“-ectomy”) the whole pituitary gland (“hypophys-“) when, in fact, the aim is to cut out the tumour while leaving the healthy gland intact.

I’ve also seen the phrase “transsphenoidal adenectomy” used for the same procedure. In fact, that’s even less specific as the “aden-” part just means “gland”… So an adenectomy is simply the surgical removal of any gland. An adenoma-ectomy would indicate surgery to cut out a glandular tumour, and a quick scan of Google indicates that this phrase is also in use amongst the medical profession. How confusing.