Sphenoid wing meningioma

[JoyKF53]

Hi. I'm 63 and finished treatment for stage 1a DLBCL a few months ago. During a routine cat scan a shadow was found so had an MRI. This found a 12mm sphenoid wing meningioma. My hematologist is referring me to King's hospital in London  but have heard nothing yet. So many questions - should I be worried (I know that sounds daft but I'm losing sleep over this), would it be causing the Post Nasal Drip that I have or the pains in the right side of my head that have just started? I'm also in a lot of pain with arthritis so I'm at a particularly low ebb at the moment and would be grateful for some help. I've never had high blood pressure in my life but I have now.

[peaches2]

Sorry I'm not up on what's wrong with you, I've never heard of it before but I did have a meningioma and had an op, you might not need one....everybody is different but please try to stay positive even with everything that runs through your mind, I know it's very difficult sometimes but I actually couldn't wait to get into theatre to have mine seen to....you might not even need to have an op they might just put you on a watch and wait like many others do. Fingers are crossed for you, sending lots of love and best wishes. xx

[JoyKF53 in reply to peaches2]

Thank you so much for your message. I'm STILL waiting to hear from King's hospital in London to find out what the plan is! It's the waiting that's driving me mad!

[peaches2 in reply to JoyKF53]

Poor you, it's such a worrying time but fingers crossed you will be fine. Try to keep thinking that you can't change things but you can hurry them along by giving them a ring and asking if there has been an appointment made...lots have done that, so please do not be afraid to call, meantime just try as hard as you can to block it out your mind and do things that you enjoy doing to stay focussed. Always here, message me anytime. Been there, done that and got through it so far and you will too. x

[JoyKF53 in reply to peaches2]

Thank you. Was supposed to get a phone call today but didn't. Will ring again tomorrow and make a nuisance of myself til I get some information. Always encouraging to hear from someone who's walked in my shoes and come out the other side. Thank you.

[peaches2 in reply to JoyKF53]

Yes please do call and chase it up. Let me know how it goes! Best wishes!

[JoyKF53 in reply to peaches2]

I will, and thank you.

[JoyKF53 in reply to peaches2]

Thank you. Done an awful lot of research and hoping they'll offer me Gamma Knife. Can't be doing with watch and wait!

[JoyKF53 in reply to peaches2]

Thank you for that. DLBCL is cancer of the lymph nodes. I'm hoping to be offered Gamma Knife surgery having researched all the options. Watch and wait is not for me, it would be living in limbo waiting every day to see if there were symptoms and if it was getting bigger! Surgery or Gamma Knife, I'll be happy with either.

[peaches2 in reply to JoyKF53]

Poor you, it's such a lot to take on board but try to stay strong, I know it's not easy, it's like walking on a tight rope everyday but we have to do it. I would feel the same as you, I'd prefer surgery too then if not then Gamma. I wouldn't like the watch and wait. xx

[JoyKF53]

Well I finally got an appointment with neuro oncology at King's Hospital - in 6 months time! I think the theory is that I have another MRI to see if the thing has grown so they can decide what to do about it. My main worry is that because I finished cancer treatment (DLBCL) 7 months ago is this meningioma more likely to be malignant? It's driving me mad!

[peaches2 in reply to JoyKF53]

Have you had your appointment yet? It seems so long ago that you posted, I hope you haven't been driving yourself crazy with worry! I have no idea of whether or not the two would be connected but they say meningiomas do not spread to other parts! I have my fingers and toes crossed for you, it's such a difficult time and sometimes you wonder why us! Staying positive def helps, so do your best to keep your chin up! Best wishes to you! xx

[JoyKF53]

Thank you. Had MRI on Friday, follow up appointment in November, then I'll know what's going to happen!

[peaches2 in reply to JoyKF53]

Sorry Joy, for some reason I couldn't find this post! How are things with you now? Hope you are doing better than you were. Best wishes to you! xx

[JoyKF53 in reply to peaches2]

Hi. Had my appt at King's in November, wonderful neurologist. He's going to see me again in May to see how much it's grown with a view to Gamma Knife. So it's wait and see at the moment. But he was very reassuring so I'm feeling much better now. I hope you're well.

[peaches2 in reply to JoyKF53]

Lovely to hear from you Joy! I'm glad you are happier now and that the neurologist was wonderful, that makes such a difference! All the best for your next appointment! I'll have my fingers crossed for you! xx

[JoyKF53 in reply to peaches2]

Hi. Sorry it's been so long, so much has been going on I've only just found time for an update. Was booked in for Gamma Knife in May but my husband was rushed into hospital for emergency surgery on a perforated bowel and peritonitis! So my surgery was postponed so I could look after him. Now booked in beginning of August at the Cromwell in Kensington (private hospital) which is being funded by the NHS! Chose gamma knife as only in hospital for a day, no risk of infection from invasive surgery or effects from anaesthetic, no shaving the hair off and quick recovery. So that's how things stand right now.

[peaches2 in reply to JoyKF53]

So sorry to hear that your husband took ill Joy, what a time you are having, poor you! I hope your husband is on the road to recovery. It's hard enough dealing with one thing but you've had a lot on your plate; well done for coping! I'm sure you have looked into which treatment method is best and have made your decision based on the facts. I wish you every good wish possible for both your husbands recovery and your treatment. Hang on in there and keep up the good work! Always here if you need to vent! Best wishes! xx

[JoyKF53 in reply to peaches2]

Thank you Peaches, sometimes it's nice to share conversations outside family, though I never need to vent because my glass is always half full. You can always find people worse off than yourself can't you. I've been lucky enough to get early diagnosis for my various "ailments" so treatments have been far less traumatic than they might have been. God bless the NHS.

[peaches2 in reply to JoyKF53]

Very true! I look at it as...well I'm so lucky to be here as if i hadn't bumped my head and been scanned I wouldn't be here today! x

[JoyKF53]

Thank you. Please keep in touch x

[JoyKF53]

Hi Peaches. I had the gamma knife surgery 7 weeks ago and all went well. I had a check-up yesterday and am having an MRI in 2 months. So fingers crossed that that's sorted it. How are you?

[JoyKF53]

Hi. Well it's now a few months since the Gamma Knife. I've had a check up and the tumour is "stable" which is what we hoped for. I have another check up in a year and following that annual telephone consultations which means that I only have to attend hospital for MRIs. Obviously if anything changes on them I have to go to the hospital. No side effects that I'm aware of (only from the cancer treatment that I had) so, so far so good. How are you?