i have berlotties syndrome

[Stacenkev]

im new here. Not sure where i should post about this. I recently found out that i have berlotties syndrome. Its on the right side of my lower back and can cause pain through the rest of the bottom of my back. I am currently on morphine which does not help and im waiting to go for an MRI scan on the 15th. The pain is there everyday. It becomes worse as im moving around,walking too much,bending ect. I hardly do the things im used to doing anymore. I spoke to my doctor about injections for my back to which she laughed and said it was for people with arthritis. I dont know who im supposed to turn to about this pain

[Mogi52]

Hi Stace, I’m sorry to read that your doctor is being less than helpful with you . I too suffered terrible back pain for months , treated as sciatica , then a tumour was discovered at the base of my spine after many doctors visits and changes of medications.

I was on morphine too , tablets morning and night and liquids in between if needed . But it wasn’t enough for me on lots of occasions my doctor had to come in to my home and give me Diclofenac injection which really helped the pain . I’ve never felt pain like it . I had surgery to remove the rumour but still have pain .

I now take Tramadol and Pregabalin together , which takes the edge off the pain , I don’t want to go on to morphine again as I can’t really remember much about the time I was on it .

I so hope you get some pain relief that suits you , have they done an MRI scan ?

Take care x

[Stacenkev in reply to Mogi52]

Hi. Im sorry to hear of all that you have been through. Im glad to know your feeling a little better. I have an MRI due to go on the 15th. Im not looking forward to it at all as i have never been for one. I had an xray a few months back and thats when they had seen i have berlotti syndrome. X

[Mogi52 in reply to Stacenkev]

Awww bless you , it’s such a worrying time and hard to deal with pain .

Try not to worry too much about your scan, it’s daunting I know but the staff are generally very nice and calming , and appreciate that it can be scary .

They play you music so just try and relax and listen to it and and my trick is to keep your eyes closed .

My op was 4 years ago and I have an MRI every 6 months as the tumour can grow back . It’s a schwannoma , so they are known to grow back .

Take care and I’m here for a chat anytime you need one xx

[Konagirl60]

Your doctor has a duty of care to you. I read that injections of anaesthetic can help. Are you being gas-lighted? Call a lawyer if your doctor neglects you!

Also, there is a resection surgery that can be done if conservative treatment like PT or medication management doesn’t help.

How old are you? You’re too young to be left unable to move normally, bend normally, etc. Can you sleep? If morphine doesn’t help can you try a fentanyl patch or an opiate like Hydromorphone?

4-8% of young people acquire this lower back pain. Don’t give up! Get another opinion if your doctor won’t help you.

[Stacenkev in reply to Konagirl60]

Im waiting to have my MRI on the 15th and after the results i will contact my doctor and tell her i need pain management. I have noticed that sitting up with my legs also up is causing me more pain if im sat for too long. I am 30 years old. I dont think she understands how painful it can be. I have a husband and a 13 year old son. I am trying my best to cope. I can get very down specially with having a mental illness. Thank you for your reply

[Konagirl60 in reply to Stacenkev]

No worries. Fight for your right to proper medical care. Women are dismissed and it’s so unfair,

Would your husband or son go with you to see the doctor and advocate for you? They could explain how debilitating this has become for you.

Keep me posted. Praying you get proper pain control soon and answers.