New Here!
 

Hi Gang! After 8 years of pain, MRI's out the ying yang, and MANY neuro appointments, I am finally on the road toward surgery. My symptoms include: extreme pain when walking...I now use a walker, left side weakness (nerve damage may be permanent), bladder incontinence, vision loss (lost my driving privileges November 13th), sciatica, headaches...to name a few. Dr Donlin Long has been following me and has sent all of my medical records to Dr Welch at Univ of Penn. Dr Welch will be removing the cyst because aspiration won't work. I am nervous about it because it's such a risky surgery, but anything is better than living like I am. My local neurologist is testing me for PPMS (found 5 lesions on my brain...which is nothing, unless they find lesions on my spinal cord) I am having the c-spine and t-spine MRI's done this Thursday to rule out PPMS (I truly believe they will find NO lesions on my spine and this is all from the Tarlov) Funny how different neuro's will have such different views! Makes for a crazy ride!!!! Nice to meet you all...looking forward to reading everyone's issues regarding the Tarlov. :grouphug:

Removing it? Have you checked with Dr. F?
 

Have you looked at Dr. Feigenbaum's website? He has the Dallas Texas Tarlov Cyst institute. You can find him on line easy. Also check with the Tarlov Cyst Foundation and Rita. I've been research various surgery procedures for four years and I've never heard of anyone removing a cyst. Dr. F wraps them so they can no longer put pressure on the prudential nerve. I would love to hear more about this surgery and keep in touch with you to see how it goes.

Do you have a sacral cyst? L cyst? T cyst? or ??:hug:

tarlov cyst mild spinal stenosis and bilateral facet joint hypertrophy disease
 

Its so nice to find somewhere to actually talk to other people that know what I am going through. I finally after a year got an MRI of my lumbar spine which showed L2-5 mild spinal stenosis, L5-S1 bilateral facet joint hypertrophy disease and a 12 mm tarlov cyst on S3. Ive had back pain on and off for years but over the last year the pain is tremendous and it goes down my left leg causing pins and needles and sometimes i feel like my leg and hip are just going give out. When i walk around i always stay close to something for fear my leg will just give out. I have also read that if you have 1 tarlov cyst there is probably others so now i have to wonder if that is what is causing my shoulder and arm pain they have taken an xray and a Mri of shoulder and elbow but said it is fine well it hurts sometimes terribly bad and one day i went to pick up my glass of soda and it fell right out of my hand not sure what is going happen I work 10 hour shift on my feet 4 days a week and in busy times 5 days it is getting more and more painful not sure how long i can keep it up take flexeril mobic gabepentin and ultracet but cant really take them when im working because they make me so tired. Not sure go to my doctor tomorrow so guess will see what he recommends he put in for cortisone shots couple months ago denied by my insurance and then put in for nerve block again denied by insurance. Anyone out there with any suggestions thank you

I'm new too
 

I'm not sure how to post but here goes. After many years of many symptoms, including mis-diagnosis of MS, I ended up in hospital last week. Severe nerve pain in Sacral area, loss of feeling in legs, headache, pins & needles, left side. I have Joint Hypermobility syndrome & some Osteopath Arthritis so assumed that was linked. However got an MRI (in an Osteo ward), junior Doctor comes with result tells me I have small Cysts on my spine, nothing they can do, sent me home with a letter for my GP and copy for me. I saw diagnosis was Tarlov Cysts. I'd never heard of this so, as you do, I hit Google! I'm now swimming in information but it's not helping because I don't know how I'm supposed to manage this condition. I live in Scotland and it seems that there are no specialists in the UK. I'm still in pain, my legs are weak, left hand shaking each time I lift anything and I have a constant blinding headache with nausea. It's really good to know that there are other people out there who can empathise because they're going through the same thing. I'm wondering if there's anybody else on the forum from my neck of the woods that has a bit more experience with the health profession. Also any tips on how to function as normally as possible. In one way I'm glad I can put a name to my symptoms but they seem to be getting worse and I'm damned if I'm lying down to them.

New Here Also
 

Hi everyone! Ive never joined a forum before but as they say there's a first time for everything right? :D After finally getting a DR to do an MRI on my lower back I was just diagnosed w a 1.9cm Tarlov cyst yesterday. Ive had severe back pain for years after a double fall back in 2010 and reading some of the symptoms things that have happened to me over the years are starting to make sense. My Dr is referring me to pain management for an epidural steroid injection. I have had cortisone shots and taken oral steroids but Im not sure about this epidural thing?? Ive watched the videos of Dr F in Dallas and I feel confident if I ever had to resort to surgery he is definitely the one for the job! My mom also has Neurofibromotosis so this new diagnosis makes me a lil nervous.....