Housebound in severe pain.: Hi. I was... - Meningioma Support

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Housebound in severe pain.

Susynew profile image
14 Replies

Hi. I was wondering if any one could explain my mri scan results. I've been housebound for over year due to severe pain in my neck, thoracic , & lower spine . Also both knees are affected. Things are progressively getting worse to the point where I'm in so much pain can't sleep more than 2-3 hours at a time . I have difficulty walking 2-3 meters & so I am confined to one room. I am female , 48 yrs old.

My blood results came back as normal.

MY GP relayed my mri results to me over the phone & only after googling the word haemangioma I realised that it's a benign bone tumour. Could someone please help to explain my results?

MRI Spine Cervical

Lumbar Spine

Slightly reduced lordosis despite position. Minute marginal osteophytes. Incidental schmorl's nodule involving inferior L1 end plate. Early lower lumbar spine facet joint arthrosis.

Normal lumbar discs. Central spinal canal, lateral recesses and exit foramina remain spacious. Normal conus terminalis.

Cervical Spine:

Normal vertebral alignment . Incidental small C6 haemangioma. Small areas of degenerative bone marrrow signal changes at T5 level.

Normal facet joints. Normal cervical discs. central spinal canal, and nerve root canals remain spacious. Normal appearance of cervical spinal cord and CCJ.

I have intense pain in the discs listed with problems. I'm mainly concerned about the bone tumour & the schmorl's nodule. Should my haemangioma be monitored. I haven't been told anything at all about this.

I'd be very gratetful to get an opinion on this.

Thank you

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Susynew profile image
Susynew
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14 Replies
JoyKF53 profile image
JoyKF53

I am appalled that you were given results over the phone and bit given an appointment to discuss them. As it is all in medical terms probably only a doctor would be able to explain the results to you. The first thing I would do is change my doctor! You should not have been left undiagnosed, in pain for that length of time. And the MRI should have been done ling before now. Change your GP, he's obviously not a good one. You do not have to tell him that you're changing, you find a new surgery, ask to be added to their list, fill in a form and the new surgery dies the rest. They have all your records sent to them and you never have to see that appalling doctor again! You have nothing to lose. Good luck, keep in touch.

JoyKF53 profile image
JoyKF53 in reply toJoyKF53

Sorry about spelling mistakes, I was so angry on your behalf I was typing too quickly!

Susynew profile image
Susynew in reply toJoyKF53

I'm really sorry for the late reply. I've been so ill since we last spoke. I've become bedridden since I last posted. Unfortunately, I'm unable to get to a new doctor. I have a doctor coming to see me this morning because I'm in agony with my back and neck. I'm asking them to test me for osteoporosis and also for serum calcium tests. So far I haven't received any answers as to why I'm in so much pain. My gp is saying that the hemangioma in my neck shouldn't cause any pain and he won't even agree to monitor it for growth. I read that benign tumours are slow growing and can cause a lot of nerve problems. Which I have. I have joint pain in all of my joints. A month ago i leant forward to get a glass of water and i got a sharp stabbing pain in my lower back that made me yell out.. Now i can barely move and I have to sit on ice packs to ease the burning pain in the back of my thighs The pain in my lower back is unbearable, I'm wondering if i have a fracture compression. My gp just told me to take another gabapentin.

I have carers in twice per day to prepare my meals as I can't get downstairs to my kitchen. I am literally at my wits end and if it weren't for my child i don't think i could cope with the level of pain I'm in. I'm getting weaker all the time because I can hardly move, and my muscles are starting to waste away. My child deserves a mother who is able to play with them and have a life with them I hate that i can't do that and i just wish i knew what was wrong with me so i could get the right treatment. I eat healthy. Green juice/ carrot juice everyday , fish & chicken with vegetables. Extra vitamins and supplements. I'm disciplined and determined to get better but I feel like i'm fighting a loosing battle.

Sorry for the long winded message.

If anyone out there has any idea of what I can try next . Please let me know. Thank you.

Faithfull profile image
Faithfull in reply toJoyKF53

I been sent 2 times to neuroligist even they no I have meningioma in head I need to be neurosurgery live dr discharged me with alchol liver disease , I got ADHD just two yrs hip replaced and still no help

JoyKF53 profile image
JoyKF53

I feel so desperately sorry for you. Please try to get a second opinion or change doctors. Please keep in touch x

Susynew profile image
Susynew in reply toJoyKF53

Thank you Joy. I will see what my doctor recommends today . I have a feeling she'll recommend I take more painkillers. If so, I'm going to ring a different surgery and see if they can send out the necessary forms to change. I'll keep you updated as best I can x

JoyKF53 profile image
JoyKF53 in reply toSusynew

I think that's a good idea, you can't just keep taking more and more pain killers, you need a proper diagnosis. Let me know how you get on. You don't have to tell your doctor that you're leaving that surgery, you just sign up at a new one and they send for all your paperwork. Good luck.

Susynew profile image
Susynew in reply toJoyKF53

Thank you for your advice. I'm feeling hopeful that the doctor might recommend something today other than more pills. You're right I definitely don't want to keep taking more & more of them. Especially since they aren't helping & they're probably doing more damage in the long run. I'll let you know how it goes.

JoyKF53 profile image
JoyKF53 in reply toSusynew

Please do. x

Susynew profile image
Susynew

My doctor came by and told me that I should accept that it's just a chronic pain condition and it's probably nothing to do with the hemangioma in my neck or the disc herniation in my lower back. She also said in her exact words " things can always seems worse when your sitting there on your own in pain and any little twinge can seem like something serious". I felt like screaming at her . She reluctantly said she'd check to see if i fitted the criteria for a bone scan. I'll wait for the call where she tells me I don't fit the criteria. Even though I'm post menopausal, immobile & 49. She said I'm too young. Then she asked me what painkillers I'm on and left.

JoyKF53 profile image
JoyKF53 in reply toSusynew

You definitely need to see another doctor, that just isn't good enough!

Susynew profile image
Susynew in reply toJoyKF53

I'm going to do that

JoyKF53 profile image
JoyKF53

Good. Please keep in touch and let me know how you get on, I'm always happy to chat.

Susynew profile image
Susynew in reply toJoyKF53

Thanks Joy :) I'll definitely do that

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