Lower Back Pain Near Tailbone

I called my neuro yesterday to ask about lower back pain. I’m expecting that since it’s the weekend I’ll receive a call by Monday. I’ve been having this pain for the past few days. The pain sits right on my tailbone and feels literally as if my tailbone is on fire. If I touch it it doesn’t hurt so the only way I can describe it is to say it feels like the pain is radiating from the inside. I’m trying not to mask the pain with my perscription pain meds (and they really don’t work for this) but I’m really curious as I haven’t experienced this type of pain since I had my bleed back in September "09. If anyone has experienced anything like this, or even if you haven’t, I’d appreciate any light you could possibly shed on this. Thanks in advance.

Hi Jessica
I too am experiencing that and I will let you know more after an mri I have scheduled on the 10th. I had gamma knife surgery last summer. My AVM was on my left side and in the motor center, and I did have a bleed/ mild stroke with it. I’ve had the back pain for a few months, and I can’t say that is related to the AVM or not. About a month ago I started to have problems walking - I don’t lift my right foot, even when I try. I can’t lift my leg to put pants on or tie my shoe. It could be related to the AVM, but it could also be side effects of radiation. I went through 30 treatments for anal cancer as soon as it was safe after the gamma knife procedure and they said I could possibly have some damage to my lower spine or hips.
Anyway, they said they will give me the results of the spine MRI the same day, so I’ll get back to you.
Let us know what your doctor has to say - I’m curious to know.
Thanks, Jane

Hello Jane and thank you so much for responding. I’m going to be receiving a call from my neurosurgeon and radiation oncologist about my scheduled date to come in for my gamma knife on either Monday or Tuesday. I’ll be sure and ask them about this and let you know the response. If you would like to get in contact with me please feel free to email me at fudgebear17@aol.com. I wish you the best and I hope we begin to find some answers soon.

Jane Morgan said:

Hi Jessica
I too am experiencing that and I will let you know more after an mri I have scheduled on the 10th. I had gamma knife surgery last summer. My AVM was on my left side and in the motor center, and I did have a bleed/ mild stroke with it. I’ve had the back pain for a few months, and I can’t say that is related to the AVM or not. About a month ago I started to have problems walking - I don’t lift my right foot, even when I try. I can’t lift my leg to put pants on or tie my shoe. It could be related to the AVM, but it could also be side effects of radiation. I went through 30 treatments for anal cancer as soon as it was safe after the gamma knife procedure and they said I could possibly have some damage to my lower spine or hips.
Anyway, they said they will give me the results of the spine MRI the same day, so I’ll get back to you.
Let us know what your doctor has to say - I’m curious to know.
Thanks, Jane

I was wondering about the kidneys.
i have an avm and they say that polycystic kidney disease can cause avms as well as be a cause for them being hereditary. I’m researching polycystic kidney disease.

When my daughter was pregnant she complained of her tailbone hurting when she got up in months, it was dismissed as a pregnancy symptom.
The baby is 4 months and she has a kidney stone, some say kidney stones are common with pregnancy.
She had it while she was pregnant and it was dismissed.

What I read so far about polycystic kidney disease is, there is not always a lot of symptoms. Back pain and kidney stones can be symptoms and polcystic kidney disease can cause avms in the brain and other parts of the body.

All doctors can do is a test to find out if you have the disease, if you don’t have a lot of symptoms. Some live their whole lives with polycystic kidney disease and don’t have any symptoms.

Peace,
Ameenah

Wow, that’s a new one. I was told that avm’s are congenital, meaning you are born with it, and not hereditary. Because of the nature of an avm, if it was caused by another syndrome or disease it would mean that the arteries and veins in the brain would somehow reroute into a tangled mass with some veins and arteries being conjoined as a part of it.
Having said that, I am no expert by any means and have gotten my information from the neurologists that discovered and treated my avm after a brain bleed.
Recently I went through testing for pain in my spine and radiating to both legs and I’ve been dragging my right foot.
The doctors dismiss the avm as the problem and I’ve been told it is due to a combination of deterioration of a few discs and advanced neuropathy due to diabetes ( I’m 52 yrs old and have been diabetic a long time)
The MRI of the brain reveals the AVM is for the most part obliterated…so that’s good news. Tomorrow I am having a sacra ileac injection to hopefully give me pain relief.
Ameena, there are many people on this site that are well versed on AVMs so hopefully you’ll get some feedback that will help you.
Be blessed,
Jane Morgan

i hear they are congenital too except if you have HHT or polycystic kidney disease.

my daughter that had he kidney stone does not want to be test for an avm, i was not thinking about polycystic kidney disease until she came up with the kidney stone. i know a week before my avm bled i had cramps so bad that they felt like labor pains. the
docs always act like i am not saying anything when i talk about the pain a week before i bled. i think i’m going to get the kidney test, hopfeully to rule out polycystic kidneys.
i’m 51, i bled at 49.
Jane Morgan said:

Wow, that’s a new one. I was told that avm’s are congenital, meaning you are born with it, and not hereditary. Because of the nature of an avm, if it was caused by another syndrome or disease it would mean that the arteries and veins in the brain would somehow reroute into a tangled mass with some veins and arteries being conjoined as a part of it.
Having said that, I am no expert by any means and have gotten my information from the neurologists that discovered and treated my avm after a brain bleed. Recently I went through testing for pain in my spine and radiating to both legs and I’ve been dragging my right foot.
The doctors dismiss the avm as the problem and I’ve been told it is due to a combination of deterioration of a few discs and advanced neuropathy due to diabetes ( I’m 52 yrs old and have been diabetic a long time)
The MRI of the brain reveals the AVM is for the most part obliterated…so that’s good news. Tomorrow I am having a sacra ileac injection to hopefully give me pain relief.
Ameena, there are many people on this site that are well versed on AVMs so hopefully you’ll get some feedback that will help you.
Be blessed,
Jane Morgan

Oh ok, no wonder it was new to me… like I said I’m no expert, lol. I thought avm’s were only in the brain and that is what I was referring to. Sorry for the confusion.
Be blessed,
Jane

Ameenah said:

i hear they are congenital too except if you have HHT or polycystic kidney disease.

my daughter that had he kidney stone does not want to be test for an avm, i was not thinking about polycystic kidney disease until she came up with the kidney stone. i know a week before my avm bled i had cramps so bad that they felt like labor pains. the
docs always act like i am not saying anything when i talk about the pain a week before i bled. i think i’m going to get the kidney test, hopfeully to rule out polycystic kidneys.
i’m 51, i bled at 49.
Jane Morgan said:
Wow, that’s a new one. I was told that avm’s are congenital, meaning you are born with it, and not hereditary. Because of the nature of an avm, if it was caused by another syndrome or disease it would mean that the arteries and veins in the brain would somehow reroute into a tangled mass with some veins and arteries being conjoined as a part of it.
Having said that, I am no expert by any means and have gotten my information from the neurologists that discovered and treated my avm after a brain bleed. Recently I went through testing for pain in my spine and radiating to both legs and I’ve been dragging my right foot. The doctors dismiss the avm as the problem and I’ve been told it is due to a combination of deterioration of a few discs and advanced neuropathy due to diabetes ( I’m 52 yrs old and have been diabetic a long time)
The MRI of the brain reveals the AVM is for the most part obliterated…so that’s good news. Tomorrow I am having a sacra ileac injection to hopefully give me pain relief.
Ameena, there are many people on this site that are well versed on AVMs so hopefully you’ll get some feedback that will help you.
Be blessed,
Jane Morgan