Pituitary Tumour
Discussion
Exactly a year ago today I had a tumour removed from the base of my brain. I thought it may help to read about my experience in case any other users of the forum end up with the same problem.
The symptoms initially started a few years ago, I noticed a slight deterioration of my peripheral vision in one eye and then began to suffer slight headaches in one part of my head. I eventually got round to seeing the GP who referred me to the eye clinic at the local hospital, after several visits and numerous tests I was hit with the comment "we think you may have a growth in your head which is affecting your eye sight". The following morning at 8.30 I was having an MRI scan and very soon afterwards was seen by a neuro consultant and endocrinologist to decide what happened next. Almost all pituitary tumours are benign and most can be treated with surgery but the concern is the tumour can affect the normal output of the important hormones released by the pituitary gland. This resulted in large numbers of blood tests measuring various hormone levels. Eventually I was referred to the John Radcliffe hospital in Oxford and met the neurosurgeon Simon Cudlip who was going to carry out the surgical removal of the tumour. Unfortunately the damage to my eyesight meant I was not allowed to drive until after the surgery which was a major inconvenience. I met with Simon and his team at the end of Nov in 2011 and wanted to schedule the op for the second week of Dec however we managed to postpone the op until Jan as I had booked a holiday abroad over the Christmas period. The 8th of Jan I was admitted to the neurosurgery ward at JR hospital and had my surgery the following day. The method involves inserting an endoscope through the nostril and breaking through the sinus and into the lower part of the skull. The surgeon using a camera on the endoscope can then cut away the tumour. In my case the tumour was quite large,23mm and had also grown round the carotid artery which supplies the brain with blood. After the surgery, which took about 2hrs, I went to recovery and eventually back to the neuro ward. The post op situation was reasonably comfortable, no real pain but my nose was bleeding and leaking brain fluid which is normal. In most ops of this nature post surgery the nose is packed with gauze and a piece of fat from the abdomen is inserted into the entry point to prevent leakage, however Simon tried a new technique with me where he filled the hole with medical superglue. He also often fits a drain into the spine but gave this a miss with me which was appreciated as other patients found this quite uncomfortable.
I eventually left the hospital three days after the operation, the nose was still leaking for about two weeks so it was important I didn't mix with other people and get an infection into my brain. I again had numerous blood tests to ensure my cortisol and ADH hormones were at a suitable level and went back to work about 6 weeks after the operation. I've had follow up MRI scans and blood tests and currently everything seems fine, my eyesight has improved, no headaches and last Feb I was given the ok to start driving again. I immediately went out and bought a Nissan GTR R35 to celebrate.
The symptoms initially started a few years ago, I noticed a slight deterioration of my peripheral vision in one eye and then began to suffer slight headaches in one part of my head. I eventually got round to seeing the GP who referred me to the eye clinic at the local hospital, after several visits and numerous tests I was hit with the comment "we think you may have a growth in your head which is affecting your eye sight". The following morning at 8.30 I was having an MRI scan and very soon afterwards was seen by a neuro consultant and endocrinologist to decide what happened next. Almost all pituitary tumours are benign and most can be treated with surgery but the concern is the tumour can affect the normal output of the important hormones released by the pituitary gland. This resulted in large numbers of blood tests measuring various hormone levels. Eventually I was referred to the John Radcliffe hospital in Oxford and met the neurosurgeon Simon Cudlip who was going to carry out the surgical removal of the tumour. Unfortunately the damage to my eyesight meant I was not allowed to drive until after the surgery which was a major inconvenience. I met with Simon and his team at the end of Nov in 2011 and wanted to schedule the op for the second week of Dec however we managed to postpone the op until Jan as I had booked a holiday abroad over the Christmas period. The 8th of Jan I was admitted to the neurosurgery ward at JR hospital and had my surgery the following day. The method involves inserting an endoscope through the nostril and breaking through the sinus and into the lower part of the skull. The surgeon using a camera on the endoscope can then cut away the tumour. In my case the tumour was quite large,23mm and had also grown round the carotid artery which supplies the brain with blood. After the surgery, which took about 2hrs, I went to recovery and eventually back to the neuro ward. The post op situation was reasonably comfortable, no real pain but my nose was bleeding and leaking brain fluid which is normal. In most ops of this nature post surgery the nose is packed with gauze and a piece of fat from the abdomen is inserted into the entry point to prevent leakage, however Simon tried a new technique with me where he filled the hole with medical superglue. He also often fits a drain into the spine but gave this a miss with me which was appreciated as other patients found this quite uncomfortable.
I eventually left the hospital three days after the operation, the nose was still leaking for about two weeks so it was important I didn't mix with other people and get an infection into my brain. I again had numerous blood tests to ensure my cortisol and ADH hormones were at a suitable level and went back to work about 6 weeks after the operation. I've had follow up MRI scans and blood tests and currently everything seems fine, my eyesight has improved, no headaches and last Feb I was given the ok to start driving again. I immediately went out and bought a Nissan GTR R35 to celebrate.
BarryP said:
I immediately went out and bought a Nissan GTR R35 to celebrate.
An interesting read and glad to hear you've made a full recovery. Without meaning it to sound stupid, were you very worried at the time in regards to the op or just dealt with it as one of those things? I don't think I would handle a situation like that very well at all, no matter how competent the surgeon was or (relatively) safe the operation was.
BarryP said:
Exactly a year ago today I had a tumour removed from the base of my brain. I thought it may help to read about my experience in case any other users of the forum end up with the same problem.
The symptoms initially started a few years ago, I noticed a slight deterioration of my peripheral vision in one eye and then began to suffer slight headaches in one part of my head. I eventually got round to seeing the GP who referred me to the eye clinic at the local hospital, after several visits and numerous tests I was hit with the comment "we think you may have a growth in your head which is affecting your eye sight". The following morning at 8.30 I was having an MRI scan and very soon afterwards was seen by a neuro consultant and endocrinologist to decide what happened next. Almost all pituitary tumours are benign and most can be treated with surgery but the concern is the tumour can affect the normal output of the important hormones released by the pituitary gland. This resulted in large numbers of blood tests measuring various hormone levels. Eventually I was referred to the John Radcliffe hospital in Oxford and met the neurosurgeon Simon Cudlip who was going to carry out the surgical removal of the tumour. Unfortunately the damage to my eyesight meant I was not allowed to drive until after the surgery which was a major inconvenience. I met with Simon and his team at the end of Nov in 2011 and wanted to schedule the op for the second week of Dec however we managed to postpone the op until Jan as I had booked a holiday abroad over the Christmas period. The 8th of Jan I was admitted to the neurosurgery ward at JR hospital and had my surgery the following day. The method involves inserting an endoscope through the nostril and breaking through the sinus and into the lower part of the skull. The surgeon using a camera on the endoscope can then cut away the tumour. In my case the tumour was quite large,23mm and had also grown round the carotid artery which supplies the brain with blood. After the surgery, which took about 2hrs, I went to recovery and eventually back to the neuro ward. The post op situation was reasonably comfortable, no real pain but my nose was bleeding and leaking brain fluid which is normal. In most ops of this nature post surgery the nose is packed with gauze and a piece of fat from the abdomen is inserted into the entry point to prevent leakage, however Simon tried a new technique with me where he filled the hole with medical superglue. He also often fits a drain into the spine but gave this a miss with me which was appreciated as other patients found this quite uncomfortable.
I eventually left the hospital three days after the operation, the nose was still leaking for about two weeks so it was important I didn't mix with other people and get an infection into my brain. I again had numerous blood tests to ensure my cortisol and ADH hormones were at a suitable level and went back to work about 6 weeks after the operation. I've had follow up MRI scans and blood tests and currently everything seems fine, my eyesight has improved, no headaches and last Feb I was given the ok to start driving again. I immediately went out and bought a Nissan GTR R35 to celebrate.
Ouch. Glad to see you have had a good outcome and thank you for writing that up.The symptoms initially started a few years ago, I noticed a slight deterioration of my peripheral vision in one eye and then began to suffer slight headaches in one part of my head. I eventually got round to seeing the GP who referred me to the eye clinic at the local hospital, after several visits and numerous tests I was hit with the comment "we think you may have a growth in your head which is affecting your eye sight". The following morning at 8.30 I was having an MRI scan and very soon afterwards was seen by a neuro consultant and endocrinologist to decide what happened next. Almost all pituitary tumours are benign and most can be treated with surgery but the concern is the tumour can affect the normal output of the important hormones released by the pituitary gland. This resulted in large numbers of blood tests measuring various hormone levels. Eventually I was referred to the John Radcliffe hospital in Oxford and met the neurosurgeon Simon Cudlip who was going to carry out the surgical removal of the tumour. Unfortunately the damage to my eyesight meant I was not allowed to drive until after the surgery which was a major inconvenience. I met with Simon and his team at the end of Nov in 2011 and wanted to schedule the op for the second week of Dec however we managed to postpone the op until Jan as I had booked a holiday abroad over the Christmas period. The 8th of Jan I was admitted to the neurosurgery ward at JR hospital and had my surgery the following day. The method involves inserting an endoscope through the nostril and breaking through the sinus and into the lower part of the skull. The surgeon using a camera on the endoscope can then cut away the tumour. In my case the tumour was quite large,23mm and had also grown round the carotid artery which supplies the brain with blood. After the surgery, which took about 2hrs, I went to recovery and eventually back to the neuro ward. The post op situation was reasonably comfortable, no real pain but my nose was bleeding and leaking brain fluid which is normal. In most ops of this nature post surgery the nose is packed with gauze and a piece of fat from the abdomen is inserted into the entry point to prevent leakage, however Simon tried a new technique with me where he filled the hole with medical superglue. He also often fits a drain into the spine but gave this a miss with me which was appreciated as other patients found this quite uncomfortable.
I eventually left the hospital three days after the operation, the nose was still leaking for about two weeks so it was important I didn't mix with other people and get an infection into my brain. I again had numerous blood tests to ensure my cortisol and ADH hormones were at a suitable level and went back to work about 6 weeks after the operation. I've had follow up MRI scans and blood tests and currently everything seems fine, my eyesight has improved, no headaches and last Feb I was given the ok to start driving again. I immediately went out and bought a Nissan GTR R35 to celebrate.
Was Cushings mentioned anywhere along the way? I ask as I have to go in to see the consultant in March as my cortisol levels are apparently through the roof and blood pressure and mood swings have been a problem for a while. I'm trying not to think about it too much...
ali4390 said:
An interesting read and glad to hear you've made a full recovery. Without meaning it to sound stupid, were you very worried at the time in regards to the op or just dealt with it as one of those things? I don't think I would handle a situation like that very well at all, no matter how competent the surgeon was or (relatively) safe the operation was.
Insanity Magnet said:
Ouch. Glad to see you have had a good outcome and thank you for writing that up.
Was Cushings mentioned anywhere along the way? I ask as I have to go in to see the consultant in March as my cortisol levels are apparently through the roof and blood pressure and mood swings have been a problem for a while. I'm trying not to think about it too much...
They obviously test for all the hormones and I am aware that often Cushings is due to a pituitary tumour. Pituitary tumours can have many symptoms depending on how the tumour is growing, mine was not really causing much of a problem with hormone levels but was so big it was pushing against the optic nerve and stretching it.Was Cushings mentioned anywhere along the way? I ask as I have to go in to see the consultant in March as my cortisol levels are apparently through the roof and blood pressure and mood swings have been a problem for a while. I'm trying not to think about it too much...
BarryP said:
They obviously test for all the hormones and I am aware that often Cushings is due to a pituitary tumour. Pituitary tumours can have many symptoms depending on how the tumour is growing, mine was not really causing much of a problem with hormone levels but was so big it was pushing against the optic nerve and stretching it.
I see.Thank you!
Winnit said:
Interesting read OP, I was diagnosed with exactly the same 6 years ago! I left seeking medical advice until quite late and have been left with some lasting damage to my sight, but I was fortunate mine was 'fixed' with tablets (cabergoline) rather than an operation.
Interesting to know as well.Glad the op went well.
I have not met Simon yet, but he often does these trans sphenoidal cases with an ENT surgeon called Pablo, who I do know very well.
When doing these cases, Pablo always uses a special multiangled endosope that is only manufactured by my company. The John Radcliffe finally bought these scopes July this year. At the time of your op, they only had one of these endoscopes. it was on a long term loan from myself and currently in the back of my car!
I have not met Simon yet, but he often does these trans sphenoidal cases with an ENT surgeon called Pablo, who I do know very well.
When doing these cases, Pablo always uses a special multiangled endosope that is only manufactured by my company. The John Radcliffe finally bought these scopes July this year. At the time of your op, they only had one of these endoscopes. it was on a long term loan from myself and currently in the back of my car!
steveT350C said:
Glad the op went well.
I have not met Simon yet, but he often does these trans sphenoidal cases with an ENT surgeon called Pablo, who I do know very well.
When doing these cases, Pablo always uses a special multiangled endosope that is only manufactured by my company. The John Radcliffe finally bought these scopes July this year. At the time of your op, they only had one of these endoscopes. it was on a long term loan from myself and currently in the back of my car!
So the instrument that Simon was rooting around inside my head could well be on the back seat of your car! Fantastic, can you post a picture?I have not met Simon yet, but he often does these trans sphenoidal cases with an ENT surgeon called Pablo, who I do know very well.
When doing these cases, Pablo always uses a special multiangled endosope that is only manufactured by my company. The John Radcliffe finally bought these scopes July this year. At the time of your op, they only had one of these endoscopes. it was on a long term loan from myself and currently in the back of my car!
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