http://www.tarlovcystfoundation.org/FindaDoctor.asp

http://tarlovdisease.populus.org/rub/2

Dr. Daniel Maitrot

FAX 011 33 388.12.76.16

Hi I am new here and am wondering if anyone has had any surgery or interactions with Dr. Henderson in the DC area. I have 2 TC on my S2 and have been in agony this last 14 months. was just dx with the cysts last month after many many DRs mostly obgyn types and pelvic pain specialists.

Thanks

Bravo, if you are living in the DC area, I would definitely make a point of trying to go and see Dr Donlin Long in Johns Hopkins in Baltimore. While he isnt operating any more, I saw him recently and got some good advice and he is a very well educated and knowledgeable man in the area of Tarlov Cysts. A lot of his peers also recommend him. He will be able to advice on what action to take with regard to the cyst and where to have surgery, if it is required.

Good luck and let us know.

This is my first post so hope that I do it correctly. My husband & I were involved in a automobile accident in Dec. 09. in which we were t-boned on my side by a person fleeing the law going 70mph. It caused my right eye to turn inward ( I'm having surgery next week to hopefully fix it). Since then I began having heat or what I call icy/hot feeling from my buttocks down my right leg to top of foot. The CTscan revealed the cysts but the doctor insisted that they wouldn't be the cause of this of my pain. I saw a neurosurgeon who said that the x-rays of my spine were not significate to cause this pain. When I asked about the tarlov cysts he just dismissed them compeletely. Today I saw a neurologist who did an EMG & said that absoultely the tarlov cysts are my problem. I am really scared because I've read where the pain is progressive. He mentioned surgery, but didn't know if the neurosurgeon here would do.
Did you have surgery & can you tell me who did it & did it help??
Thanks, Rita

Hi there,

Unfortunately, I havent yet had surgery, I am still waiting.

Remember that everyone is different and I wouldnt believe all stories that your pain will get worse, it may have for that person but that doesnt mean it will for you.

Where are you based Rita?

I have had Tarlov cyst surgery with Henderson and I would caution you that you are at great risk for worse pain post surgery with Dr. Henderson. While he states ** that only 10 percent get no improvement after surgery, post-surgery when I told him that my pain was much worse than pre-surgery and constant rather than somewhat intermittent as it was pre-surgery, he emailed to say that 20% get no improvement. I questioned him at a pre-surgery appointment to ascertain if anyone was worse after surgery and he said in only 1 case where his assistant had completed the surgery. He claimed to have done approximately 200 Tarlov cysts before my surgery and upped that figure to 300 in discussion post-surgery 3 months later, claiming at the same time he did 1 per month--none of it adds up. He has no outcome data for his Tarlov cysts surgeries. He is a poor communicator, is not transparent, and disingenuous in my experience. The hospital he is associated with Drs. Community Hospital in Lanham, Maryland is a nightmare--dirty, incompetent staff, fined in 2009 by Maryland Health Board for it's performance and bent more on covering up ongoing incompetence than in improving care. If you've already opted for surgery, which in iteself I would caution you against I hope you had a better experience than mine4.

Hello,
Thanks for providing this site. I have been dealing with extreme pain from a failed fusion surgery back in 2001.
L-4 to S-1 with cages, with rods and screws and a whole lot of anatomy removed! Loss of Bowel and Bladder function, lots of numbness in the rectum area, tail bone and right leg, ankle and foot.
It started with not being able to walk, to the ER and an MRI showing near complete compression of the thecal sac (L-4,5 area). Admitted to the Hospital - lost bladder control after day 2 and typical numbness from Cauda Equina Syndrome. No one told me what was going on but 5 days later I had the fusion and only after doing my own research on the internet about a month later when I was finally released from the hospital. OH! the stories I have!!!

A recent MRI shows, increasing in size from a 2 year old MRI, a cystic like structure on the L4-5 nerve root sheath showing a CSF signal, and new cystic structures at L-4 and S-1.

I have struggled in extreme pain over the years and have had nerve block galore and they have kept me going but they have been higher than L-4-5 as my PM doc is afraid of rupturing this sac/cyst at L-4-5. I have not had an MRI study of S-2 downward. That is my goal.

When I recently came across the "Doctors that treat Tarlov Cyst's " website, and putting a lot of other research together and my pain symptoms, I new I needed to find out more.

My worst pain is the pain I get in the rectum and the ankle, foot, heel and toes. I have been told that this pain stems from the herniated disc that nearly compressed my spinal cord for 5 days. Now I am not so sure.

Oddly, the pain I get in the rectum and ankle, foot and heel are the same and occur at the same time. Vise like pain clamping down, walking, standing or sitting on a rock or the feeling of sitting on my bones in the effected area.

It really hurts, off the charts until I get my Break thru pain meds in me.
I also have come to find that the pain in the tail bone area, the swelling, sitting on a rock and even laying down causes the tail bone to hurt.

So, I hope to get an S- series MRI to see if there are cysts below S-1 and find a doc to get rid of the other cyst or cysts that are there are growing.

I am going to use UC Davis for a second opinion and there is a doctor there who will look at all my files and then advise me on what he/they think.

Any Cauda Equina Syndrome people out there?
It seems that the definition and understanding of what was called scar tissue and then arachnoiditis is moving along to the formation of a type of Tarlov Cyst, mine stemming from a 3 level fusion.

I am off to educate my PM doc tomorrow and then later in August my surgeon who 2 years ago said the L-4-5 cyst, then called a dural ecstasia is not causing any of my pain.

Hope I didn't go too long.

Richard

Richard:
*edit*

I'm newly diagnosed with small tc's (S2) ... darn... ongoing sciatica ... etc.
Some relief some days ... but Do check out Tarlov Cyst Foundation as well.
They have list of NS for you to consider. Dr. Fiegenbaum in KC has some
great results .. many post their pre and post surgery experiences.

Good luck,
Jean K, NC