Meningioma

[Godoone22]

hi

I’m looking for help with my Meningioma. I have had surgery but the tumour is growing again and I have been offered radiology treatment. What have you all been offered/done.

[Robot255]

Mine is growing back aswell was offered gamma knife radiotherapy, cos it to dangerous to operate on, the surgery is painless, well apart from the frame they fit to your headHope this helps

[Satishouse]

Hi sorry to hear your news, out of curiosity how long was it since your surgery has it started to grow again.

[Godoone22 in reply to Satishouse]

I had my surgery on 27/3/2023. My scan in June 23 seemed ok as the consultant seemed happy then the scan I had another scan dec 23 and that showed growth.

[nidhi123]

Even I gone through surgery in May 2020, it was Atypical meningioma Grade II, i gone through radio surgery in multiple sitting. Now there is enhanced cystic encephalomalacia of 3.4 cm with edema.

[Denni60]

Hi, I am sorry to hear that. Please try Soursop leaves as tea you can order through amazon, also I cover my head with castor oil at night in a slim pad. My story is I had a GBM stage 4, 80% of tumour was removed leaving 20%. now after radiation I had a 1cm white blob. It then grew to 1.5cm, whilst staying like this for the last 3 MRI's.So after about 14 months of chemo , My tumuor has really shrunken to a 1/4 of 1cm size. Please cut off all sugar. If you have you tube research Barabara O'Neil on home remedies and Thomas Syfed on brain tumours. Be positivive, don't give up believe in yourself. I also have a blend which I have every morning. I hope this has helped. In May I will be classed as a long term survivor. Good luck, I can only tell you what has worked for me. I can give you information on my blend and drink lots of water. X

[Godoone22]

thank you all for your comments u

[SparkleOfHope]

Dear Godoone22

Lamentable that things overcome us affecting our limited resources and unknown consequences that await us. There may have been some good and solid advice that has been given within the lines of hope in the messages that have been posted. Sure hope they help.

Let me add the advice I may give you is not to be taken with a “grain of salt” but perhaps with “a grain of hope” I personally do not have a brain tumor, a meningioma, but as caretaker, I can say that my wife does in fact have one. According to MRI scans, using the mathematical ellipsoid measurement formula of her tumor, using its 3 dimensions as a base, it decreased 44% according to the mathematical measurements. But this is not the real way of determining any decrease in VOLUME. It has to be done with special software of the MRI scan to see if there was any such shrinkage. Fortunately, there was, but not as high as 44%. It was 14%.

It is much long too to go into all the details, but one of the elements that helped a long way was “Palo negro” Leptocarpha rivularis. It is a herb found in Chile and can be bought in the U.S.A. For the sake of summary, here are some hyperlinks that just may of a guide in its effectiveness. My wife takes 5 grams of the herb per day without side effects, having constant blood parameters being measured. Here are the links, some are in Spanish. Hope it helps.

leptoinc.com/

palonegrochile.cl/

amazon.com/-/es/Carolina-%C...

[Trufle]

Hello, I am similar situation - had surgery 2 years ago and it has grown 1mm in 14 months but has refilled the void from surgery, so more changed shape! They will not operate again as on brain stem so have agreed to radiotherapy in July for 6 weeks! I am positive but also nervous and thinking “what if”! If it doesn’t work in stopping the meningioma growing and they won’t do surgery and my symptoms (I have facial numbness, balance issue ms, deaf in one ear and not much feeling in left leg) get worse next. ….. I am on restricted licences but consultant had advised I don’t drive while having radio and will reassess 4 weeks after . I hope this helps - best wishes

[Jennih1965 in reply to Trufle]

Hi I have ataxia so like you I have balance issues and cannot walk without rollator or another person. I live with fatigue, dodgey eyes, a strange feeling on the left side and a tremour on my right side but it could have been much worse so as well as being angry I am also lucky. I have decided to wait and have radiotherapy later after the next scan. They say they don't know if it'll work and if it does then it will only slow the growth so I have no idea what the future holds.

[Trufle in reply to Jennih1965]

Thank you for your reply! I agree entirely I thank lucky stars every day fir Addenbrooke’s on the doorstep and yes, it’s benign, but although friends and family are understanding it is really good to have this forum to share experience with others that are going through the same! Thank you for taking the time 😊