Ned Newguy needs help
 

Hello all. I've just discovered this forum in my attempt to take charge of my physical condition and get the best use of local caregivers and maybe even find someone who knows what is going on.
I am a male, 64 years old. I have been very healthy until recently. I have bicycled 100 to 150 miles and hiked 10 to 20 miles per week for many years until recently.
Well, in January I developed pain in my right calf that progressed to full blown right sciatica in March. I now can only walk 50 feet without having to sit down because of the pain. I've followed my doctor's advice and had X-rays and an MRI. A neuro surgeon advised that I had no condition that warrented surgery. The MRI did show a cyct of Tarlov on the right sciatic. I am now in PT with little or no improvement.
I am searching for help. Exercize? Diet? What.
Thank you for allowing me to introduce myself.

JIM

Hello & Welcome!!
 

Hello Jim!
 

Welcome to NT! :hug:

You've found a great place for support and lots of caring people. I'm sorry about this condition you are faced with.
We have a forum here specific to Tarlov Cyst. Here's the link that takes you there...
http://neurotalk.psychcentral.com/fo...aysprune=&f=73

Make yourself right at home, you're among friends!

Caring,
Rae
:grouphug:

Hi Jim, I'm curious if the doctors said your pain could be from your tarlov. Also how large is your cyst?
I am new here also. I was diagnosed with a tarlov cyst about 8 years ago after 3 orthopedic doctors said they couldn't find anything wrong with me. I was having an expeirience where I felt like hot water was runny down my lower back and I went right into the doctors office and told him what was happening. He was a new doctor and thank God he knew what a tarlov cyst was and he sent me right away for an exray. When he looked at the results he said I had a large mass in my lower sciatica area and I need to have an MRI to see what it was. I was really scared when I heard that. After the MRI I was diagnosed with the cyst.
I was just like you and in ver good physical health I had managed a heath spa for years and then here I was in a position of not being able to do anything. I started searching on line and found a message board where I met many people who were going through the same as I was and some were a lot worse. I did learn that my diet is very important when it comes to living with a tarlov cyst, we really have to watch our PH. I started eating and drinking only good PH food and drinks and after a couple of months my pain was gone but the numbness and tingling never went away I just learned to live with them. Everything was doable until now. Just last week I started with the numbness and tingling in my other leg so now it's in both legs and feet. I think it has happened because the cyst has filled again and is sitting on more nerves.
I was quite sick for a few months this year and had to take many antibiotics and nexium. I believe these drugs have thrown my PH out of order and my cyst is now symtomatic again.
I saw my GP today and she has ordered a nerve conduction test and a MRI to see what's going on. I have the nerve test on Friday. In the meantime I am being very careful with my diet and hoping this gets better.
It's been many years since I had to deal with this cyst and I found this site yesterday and it looks like a pretty nice board to get information and the people here seem very concerned and helpful. Maybe we can try to help eachother. If you hear anything new about treatment for these cyst please let me know and I will do the same.
I would be careful when exercising. I had to stop the last time I had mine because bending from the waist seemed to agravate my cyst and cause more pain.
There aren't too many doctors that treat or operate on tarlovs' because of the sensitivity of the area near the spinal colum. Eight years ago there were only about 7 doctors in the US that operated on the cyst. I'm still searching for someone in my area. The newer doctors know about them but don't have enough knowledge to treat them.
Hope I answered some of your questions and hopefully someone here might have some information we can use.
Hope all goes well for you.
Katt

Hello
 

Hi Jim

Don't let a person (DR) dictate how you should proceed with finding the cause for your issue. I too was told by many and a neuro surgeon what they thought. With a Tarlov Cyst sometimes PT and exercise makes them more symptomatic.
I recently had surgery on five sacral cysts. I did some research and found a Doctor that specialized in these Dr. Fiegenbaum. I would recommend him to review your MRI and give his opinion on yours. He does practice out of Dallas Texas but still does surgery in Kansas City.

Update after surgery
 

After now about 4 months of inactivity, I've found relief. June 20 I underwent orthoscopic surgery to remove a small synovial cyst and a great deal of other material impinging on the right exiting nerve between L4 & L5. This was performed at the Scottsdale branch of Laser Spine Institute. A full review with me present of my MRI showed the severe narrowing of this nerve. I also was shown a similar, but not as severe, condition between L5 & S1. I elected to just wait and see on this one. Any way, I am now without pain and walking several miles a day. The next step will to get back on the bike. I recommend Laser Spine Institute to anyone with similar problems.

JIM

Hello Jaybea
 

Welcome to Neuro Talk. I hope alot of others come by to say hello too. Sorry to hear you have sciatica. I understand that is due to the nerve root compression in the lumbar area. Have you tried acupuncture?. If surgery isn't an option for you, maybe some therapy outside the box could be tried. Have you seen multipal neruologists? You may also try a physiosist. They try to control the pain and give suppliments to help at a cellular level. That is the kind of physician I am seeing. I have spinal pain also, and PN in the ankles.
If you arn't having much luck in getting resolution and this condition isn't tolerable, don't stop seeking the medical help. Nobody likes pain of kind. I do hope you find some doctor, or therapy that can help you. ginnie

Jim