I recently posted my story on the forum site, my name is Christine. Through CT scans and MRIs I have found out about two health issues; one is my benign spinal tumour (that I wrote about), the other is that I have an enlarged pituitary gland sitting under my brain.
The discovery of both these health problems has made me think. I have contemplated on how much extra work the NHS now has, as more and more people are found to have abnormalities through scanning. Some of these are incidental discoveries when screening for something unrelated, as was my enlarged pituitary. The NHS has to investigate and monitor these findings. For many the knowledge something is wrong results in treatment, or a cure, but for others there may be nothing that can be done, or a wait with observation. These people are left with the knowledge and worry of it and possibly symptoms.
So far for me, my journey with my health issues has been more of a mental battle than a physical one. However, worry and anxiety and how we deal with it are all part and parcel of the process of coping with a health issue whatever the outcome. Sometimes I have wondered “is ignorance bliss, or knowledge power?”
I wonder if anyone would like to comment on this as a discussion topic? It would be good to hear how other people are coping with the knowledge of their tumour whether they have had surgery or not.
The mental journey we experience as a result of our spinal cord tumours is not to be underestimated whether you have surgery or not. Like you I've found the London meetings supportive and reading others stories here helpful. I think I met you and your husband at one of the events?
The 'Ignorance is Bliss' vs 'Knowledge is Power' is an interesting debate. It also depends what else we are coping with at the time. Its a huge topic from a medical ethics point of view too. Sometimes its kinder not to tell someone the full picture if there's no real need?
In your case I think part of you wishes you didn't know about your tumour since it has caused you (very understandably) so much worry over the years. A misdiagnosis of a trapped nerve that will sort itself out would have helped you move on with life a lot more easily, especially since the awful pain you initially experienced didn't return. But no. You've been told about the large ticking time bomb.
I can't comment about enlarged pituitary glands but I do have the same tumour type as you, a large Schwanoma, just located at the other end of my spine C2-C4. I remember vividly when I first received the diagnosis at age 45. Unlike you, it needed urgent excision as I was told that I had less than a year left before a non-breathing complete paralysis. The initial shock and trauma I experienced meant it wasn't until many months after my first 2 neurosurgeries (March 2011) before I was brave enough to read the stories on this forum or do any other proper 'knowledge is power' research into my condition. A certain amount of 'ignorance' was how I coped at the time. Then after a 3rd neurosurgery in September 2011 I still had about 10% tumour left. A 4th surgery was deemed too dangerous. It was a relief though not to face more surgery. I've been having annual Mris ever since and very happy to report that like you there has been zero growth. Like you I have been told that Schwanomas are expected to grow, albeit very slowly. I take heart that with every year that goes by technology continues to advance such that if/when the time for surgery comes it will be less dangerous, less traumatic and quicker to recover from. Maybe this will help offset the 'being older' disadvantages.
Its great that you're keeping fit and looking after your health. Its very good news that the ticking time bomb has not been ticking for a number of years now. The knowledge of your tumour means that if anything changes you will be fast tracked for investigation. The knowledge means that everything that need to be done has been done. You keep on top of things. Maybe 'Knowledge is Power' as a phrase is incomplete and it should be something like 'Knowledge is a Power for Good when mixed with Wisdom and the loving Support of others'.
Good luck with whatever needs to happen regarding your pituitary gland issue.
I wish you a calm and peaceful Christmas.
I do think it does depend on the individual whether ignorance is bliss or knowledge power. I did want to know all aspects and options when I was told I had a schwannoma in same area as you Cath (My tumour C3-5). My issue is that aftercare varies throughout the UK and when I had my operation in 2001 5% of tumour could not be removed and I suffered permanent damage to my right arm through nerve damage during the operation.
I did get yearly MRIs for 9yrs and then in 2010 I was told no more MRIs as no noticeable growth in 5% remaining.i
Since 2010 I have ended up with different health issues which are going to affect my quality of life and require medication but never once have doctors even suggested that it could be connected to my schwannoma or requested an MRI. However I stay positive and cope issues as they arise. For me knowing as much as possible about my health makes me feel I have some control on treatment but can understand why, for some people, knowing can bring stress and worry. We all feel very vulnerable when we get the news that we have a tumour and yet at the same time there is a relief in knowing that the consultants have found the reason for our symptoms and pain. All the best, Nellie
Thank you for both replies. Yes, we did meet at one of the meetings Catherine.
I am not entirely sure where I stand on the subject of “is ignorance bliss or knowledge power” myself. I seem to oscillate between the two extremes.
I was hoping to be signed off after my third year of monitoring for my enlarged pituitary, however, my recent annual check-up revealed the measurement of it has increased by a miniscule amount. This means that they will call me back for further screening next year after all.
The risk of my particular pituitary situation is that, should it grow further, it may begin to put pressure on the underside of the brain or the optic nerves and that could cause problems. The situation is therefore similar to my neurofibroma/schwannoma at S1/S2 because as that grows the risk is that pressure on the nerves could cause loss of functions. However, the difference is that the pituitary operation/solutions are tried and tested, whereas, most of us with spinal tumours are in a position of rarity, where the treatment is bespoke to us.
I can see that when you require urgent surgery, there is little time to think things through in depth beforehand. In that sense ignorance is sometimes bliss. I remember my Mum saying she was glad she hadn’t known all the pitfalls of childbirth before she had her babies, otherwise she would just have worried more.
However, I did seek information and came to a forum meeting quite soon after my diagnosis. This gave me further insight into the fact that surgery is rarely a straight forward cure for benign spinal tumours and that often catastrophic problems are avoided but troublesome minor ones can take their place. Both of you say that not all of your tumour could be removed. Nellie says she was left with damage to her right arm. I understand that they may not be able to remove all of my tumour either. This knowledge gave me “food for thought” to weigh up the pros and cons.
So, as Nellie says, knowledge gives us some control over our treatment. It was the information I gathered before and at consultations that led me to my decision to put surgery off. But as Catherine says, it now feels as if there is a time bomb waiting to go off all the time.
I am wondering, if anyone else reading this, has put off having surgery? Perhaps they could comment on how they feel and how they have handled their situation.
In the meantime, I would like to thank Catherine and Nellie for their replies and also their kind words. As Catherine says, maybe it is knowledge coupled with much needed support from others, that helps us through these times.
Hi Christine, my name is Carolyn and I met you and your husband at the last meetings in London. At the moment you are symptom free and after speaking to several doctors as both me and my husband are from a medical background no one is keen to operate if you are symptom free as that may not be the case post op.
Your Schwannoma may be well encapsulated and come out easily or it may be tethered to nerves and have to come out peace meal having to sacrifice a nerve , which may leave you with full or partial cauda equina. You may be lucky, however and remain symptom free but it’sthe luck of the draw. There is a term for incidental findings called VOMIT. Victim of Medical Imaginary and Technology. Once upon a time that may well no have mentioned it unless it was a cause of concern but these days if you have a procedure they are at liberty to tell you if there is a finding even if it’s of no consequence .
I had my Tumour for five years and it wasn’t until my symptoms were unbearable that they agreed to operate .
There are two categories of patients, those who need and those who want . Most surgeons want to wait until you need surgery . The philosophy of do no harm is a difficult one in Neuro surgery as by virtue of most of the surgery performed it is difficult not to do harm so they are reluctant to operate unless they really have to .
As for your pituitary Tumour the same rule applies really . If your symptom free they will not want to operate . Make sure you have your visual fields checked regularly and if you develop a blinding headache, treat it as an emergency.
I am happy to talk to you or communicate privately Christine if you need any personal advise. Just let Carole know. Carolyn.
Hi Carolyn, thank you so much for your reply and concern re my health issues. Also, thank you to anybody who is following the thread of this discussion on “is ignorance bliss or knowledge power.” I hadn’t heard of the term VOMIT (victim of medical imaging and technology). That’s interesting, however, I don’t personally feel like a victim as such. My initial thoughts were the impact and strain these incidental findings must have on the NHS, in so far as further investigation and tests are then required. My follow on thoughts were how people deal differently with information they are given.
However diagnosis comes about, most people may fall into the two categories you describe; those who need surgery and those who want it. I don’t feel I fit either category completely. My first consultant said he felt I needed surgery fast, his fear being that my tumour was of a size that he thought could cause it to turn cancerous. The second opinion was that this was a low risk. Nevertheless, I was told, the operations required were best done while I was young enough to withstand them and that elective is better than emergency surgery. I have been in this situation for five years now, where surgery is being offered but I am not yet feeling ready to commit, mainly because I am almost symptomless at the moment and so the risks of surgery seem disproportionate. There must be other people who are in a similar situation to me. Equally, there may be people who want and need surgery but have been told the risks are too great. That must be an extremely difficult situation to be in. Perhaps there are others reading this, who have not had surgery for whatever reason, who would like to join in this discussion. Your contributions would be most welcome.
Meanwhile, thank you again Carolyn for your reply. Thank you also for your offer to talk privately. I might well take you up on that. I had my six monthly MRI a week or so ago and will be receiving the results at an appointment near the beginning of February.