I have a history of childhood A.L.L as well as having multiple meningingomas at presnt. Ive had pain on the left side of my neck since last june. Put it down to sleeping badly or muscle strain and have been for a few massages, very nice but made no difference.
Last week i felt a hard lump at the back left side and went to gp. Gp barly touched it with one hand and didn't compare it to the other side. She handed me a self referal to physio. I'm worried sick, they did this for 22years with weekness and shooting pain in my right arm, sending me back and forth to physio before i had a mri which revealed the cause..3 meningingomas.
Should i be worried?
Am i just panicing?
What should i do ?
lovely to hear from you again- not so nice in these circumstances. I think you are right to be worried. Have you the name of your consultant who treated your meningomas? If so, contact their secretary directly and ask to see him. If that doesnt work, go back to the GP and ask for a referral back. Persistance is the key here- it shouldnt be though...
Let me know how you get on please
.really scared now!
Spoken about it last week with neuro cns who told me to go to gp. I rang practice manager..apparently dr has put in urgent referral for u.s...don't like this as am now on waiting list for gamma knife as well as a gynae biopsy. .this is too much.
you need to find out what is going on so at least your GP has put in a referral- that's good. You will be one step nearer to finding out what it is. You have a lot going on but it is all being sorted- or on the way to be sorted, which is a good thing. Remember, most meningiomas are not cancerous!
if you need to speak to someone directly, don't forget our free support line on 0808 808 00 00
None of the meninginomas have been malignant so far..though the faux one is changing.
Was more panicking really the haem side..saw my haem onc last week she is checking on liver, kidney , pituitary and thyroid.
Not sure if want to know as not sure could face more treatment if anything was cancerous.
I've already declined the gamma knife. .although they had an mdt and offered me the mask instead.
The haem onc will be doing those bloods as standard. Its to check the late effects of ALL treatment- as you were so young, your tissues were only growing and sometimes this will lead to abnormal function. These are checked on a yearly basis at least for every late effects patient nationally.
Am aware of what blood are for..when i let them near me !as have been going for term follow up appointments since i left gos in the 80s !
Was over thinking , wondering if this neck lump was anything to do with haem side of things
The fact that it is swollen, sore and has been there since June would make it highly unlikely to be ALL as you would have had a lot more symptoms by now.
It has been painful since June, but only noticed lump a few days ago now seems width of 3 fingers rather than 2. No other symptoms. .just feel drained the whole time and need to sleep.
Waiting for gynae biopsy as bleeding too much.
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