[dizzy82]

Hi, I'm new here

I have suffered from a lot of weird things since an accident back in 1998. I had no idea that they might be related but doctors have been unable to find reasons for all of these things and have all simply dismissed me with apologies. Except for the lower back pain, that has been dismissed with subtle suggestions of the cause being mostly psychological. Which has probably kept me from insisting on HELP. The look in their eyes. In hindsight I should have demanded to be taken seriously but deep down I'm just not a person who enjoys attention. I'd rather be left alone than be subject to scrutiny, which has done me no good. Now I'm 31 years of age and very ready to be taken seriously because I have lost my ability to hold even a part-time job. Existence is physically painful. Emotionally I'm doing fine all things considered but whether or not that will last is hard to say if I have to continue to add another symptom to the list at least once a year

Here's a timelime (each thing is added to the list of problems, no issue mentioned has disappeared again):

1998
Car accident, lower back pain began and increases slowly during all the years to follow

2003
The headaches start

2005
Lower back pain developed to include legs, particularly the left

2006
Pains now include the neck and the area between the shoulder blades (burning, stinging, like bees caught under skin)

2007
The left foot, mostly the heel, is added to the list

2008
(stomach ulcer from NSAID)

2009
Symptoms that resembles Chlamydia (no cause found)

2010
Now both legs are equally affected

2011
Joint aches in arms and knees, legs feel heavy, heavy, heavy

2012
Dizzy spells, loss of sense of space, confusion, stomach cramps, diarrhoea (no cause found)

2013
Flu like symptoms complete with aching skin and fever symptoms (although no fever to measure) every 3 weeks for 4 months until I finally stopped working entirely.

At least once a year since 1998 I have been sitting in my GP's office saying that I am in too much pain to lead a normal life. In the beginning, it was "just" lower back pain, which no amount of physiotherapists, chiropractors, massage therapists and other manual practitioners have been able to anything but relieve for a short while. Over the years there have been so many issues added that just made no sense as they seemed to appear out of the blue and it seems I have tried everything and nothing has worked. I have been held under observation for Bechterew's disease and at some point even for depression for which I accepted treatment mostly to prove I wasn't crazy. I have been examined for parasites, hernias, cancer, STD's, deficiency diseases, arthritis and numerous other things - all tests have come back negative.

I've had 3 MRI's done. One in 2008, one in 2011 and then one in Dec 2013. The latter revealed that the cysts had increased in size and had eroded even more bone away. The cysts are in S1 and S2 and haven't been mentioned to me till Jan 2014.

Could all or at least some of these things be the related to the cysts?

I'm still waiting to hear what they'll recommend for me in terms of surgery or no surgery but I am definitely going to demand to see a neurosurgeon - hopefully an expert in Tarlov cysts.

[hevnw8s]

Originally Posted by dizzy82

Hi, I'm new here

I have suffered from a lot of weird things since an accident back in 1998. I had no idea that they might be related but doctors have been unable to find reasons for all of these things and have all simply dismissed me with apologies. Except for the lower back pain, that has been dismissed with subtle suggestions of the cause being mostly psychological. Which has probably kept me from insisting on HELP. The look in their eyes. In hindsight I should have demanded to be taken seriously but deep down I'm just not a person who enjoys attention. I'd rather be left alone than be subject to scrutiny, which has done me no good. Now I'm 31 years of age and very ready to be taken seriously because I have lost my ability to hold even a part-time job. Existence is physically painful. Emotionally I'm doing fine all things considered but whether or not that will last is hard to say if I have to continue to add another symptom to the list at least once a year

Here's a timelime (each thing is added to the list of problems, no issue mentioned has disappeared again):

1998
Car accident, lower back pain began and increases slowly during all the years to follow

2003
The headaches start

2005
Lower back pain developed to include legs, particularly the left

2006
Pains now include the neck and the area between the shoulder blades (burning, stinging, like bees caught under skin)

2007
The left foot, mostly the heel, is added to the list

2008
(stomach ulcer from NSAID)

2009
Symptoms that resembles Chlamydia (no cause found)

2010
Now both legs are equally affected

2011
Joint aches in arms and knees, legs feel heavy, heavy, heavy

2012
Dizzy spells, loss of sense of space, confusion, stomach cramps, diarrhoea (no cause found)

2013
Flu like symptoms complete with aching skin and fever symptoms (although no fever to measure) every 3 weeks for 4 months until I finally stopped working entirely.

At least once a year since 1998 I have been sitting in my GP's office saying that I am in too much pain to lead a normal life. In the beginning, it was "just" lower back pain, which no amount of physiotherapists, chiropractors, massage therapists and other manual practitioners have been able to anything but relieve for a short while. Over the years there have been so many issues added that just made no sense as they seemed to appear out of the blue and it seems I have tried everything and nothing has worked. I have been held under observation for Bechterew's disease and at some point even for depression for which I accepted treatment mostly to prove I wasn't crazy. I have been examined for parasites, hernias, cancer, STD's, deficiency diseases, arthritis and numerous other things - all tests have come back negative.

I've had 3 MRI's done. One in 2008, one in 2011 and then one in Dec 2013. The latter revealed that the cysts had increased in size and had eroded even more bone away. The cysts are in S1 and S2 and haven't been mentioned to me till Jan 2014.

Could all or at least some of these things be the related to the cysts?

I'm still waiting to hear what they'll recommend for me in terms of surgery or no surgery but I am definitely going to demand to see a neurosurgeon - hopefully an expert in Tarlov cysts.

Hi Dizzy82.

I am 3 months post-op from Tarlov Cyst surgery. Dr. Feigenbaum in Dallas performed my surgery and I am thankful for him. I can tell you the I had lower back pain for years. I then started to get a tingling sensation in my hands and face. My legs started to ache and had a heavy feeling. It felt like I had cement blocks attached to them when I walked. Then came the pain in my tailbone when I sat down...not to mention trying to stand up. That's when the shooting pain would happen.

It sounds like you have a lot of damage happening to your sacrum area and nerves. I would call Dr. Feigenbaum's office and talk to them about a consultation. In the meantime, you need to be your own best advocate with the doctors!!! They will continue to dismiss you until you talk with a Tarlov Cyst Specialist.

Also, do not do physical therapy or go to a chiropractor!!! That will only agitate the cysts and cause them to flare-up. We all know how bad the pain can get when they flare-up.

The information I gave you is from experience, research and instructions from Dr. F after my consultation and surgery.

Hope that helps
Kim

[dizzy82]

Originally Posted by hevnw8s

Hi Dizzy82.

I am 3 months post-op from Tarlov Cyst surgery. Dr. Feigenbaum in Dallas performed my surgery and I am thankful for him. I can tell you the I had lower back pain for years. I then started to get a tingling sensation in my hands and face. My legs started to ache and had a heavy feeling. It felt like I had cement blocks attached to them when I walked. Then came the pain in my tailbone when I sat down...not to mention trying to stand up. That's when the shooting pain would happen.

It sounds like you have a lot of damage happening to your sacrum area and nerves. I would call Dr. Feigenbaum's office and talk to them about a consultation. In the meantime, you need to be your own best advocate with the doctors!!! They will continue to dismiss you until you talk with a Tarlov Cyst Specialist.

Also, do not do physical therapy or go to a chiropractor!!! That will only agitate the cysts and cause them to flare-up. We all know how bad the pain can get when they flare-up.

The information I gave you is from experience, research and instructions from Dr. F after my consultation and surgery.

Hope that helps
Kim

Thanks for your reply, Kim If I was in the states, I'd contact Dr. F right away –but I am in Europe. And anxiously awaiting judgement from the doctors at the hospital.

[dizzy82]

Just wanted to share some updates.. I spoke to an expert who reviewed my MRI and interviewed me cleverly about my symptoms. I was told that I am a text book Tarlov cyst case and a prime candidate for an operation, which potentially could relieve almost all of my symptoms - perhaps not the dizziness. I am now waiting for the operation to be arranged. Mixed feelings about it, it's nice to be taken seriously, finally. But I can't believe it had to take 15 years when I'm apparently a textbook case. Two of the cysts (symmetrical in S2) have reached the size of golf balls and have eroded the bone away completely at their position. The cysts in S1 are smaller. So I'm scared and excited and angry and bitter and cautiously hopeful.

[Kathryn1]

Originally Posted by dizzy82

Thanks for your reply, Kim If I was in the states, I'd contact Dr. F right away –but I am in Europe. And anxiously awaiting judgement from the doctors at the hospital.

Hi,
Dr. Feigenbaum is also associated with the AIMIS Spine Institute where they do take patients from other countries. Look on the website under AIMIS and send your MRI to Dr. Feigenbaum. He is the expert in Tarlov cysts and can give you advice whether to have surgery or not. Best of Luck. I am sorry for your frustrations and pain!
Kathryn1