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Tarlov disease

ferny
1 Recommendation

I would like to hear from anyone who has Tarlov disease. I have had this now for more than a year. I have been hospitalised 3 times and have been told there is nothing wrong with me and that I sleep too heavily. As this was not getting any better and I was getting very frustrated with the New Zealand health system I paid for an MRI scan which highlighted a Tarlov Cyst. Now I am waiting to see a neurologist to hopefully decide if they will operate. It seems to be a condition that very few doctors know about or believe in.

Explore topics in this discussion:

Surgery Meningitis Back pain Pregnancy Asthma Sciatica Miscarriage Tarlov cysts Lortab Physical therapy Ultram Constipation Pain Weakness Neurontin Lyrica Depression

58 replies

JPMorgan

Hi Sonya,

I too have Tarlov cysts Dr Feigenbaum in Kansas CIty did my second surgery. He had to fix what the first surgeon at Cleveland Clinic in Ohio screwed up the yr. before. If you can get to Knasas CIty or send your MRI films to him Dr F he will tell you if he can helpyou or not. He is great so is his nurse Debbie West. Want anymore info. please email me at parkins.morgan@gamil.ocm . My cyst went from L4 thru S4. Very painful, I have less pain now. The procedure where Dr Long would drain the cyst and then fill with a fibrin glue from my readings only holds up for 1-3yrs. Dr F. does a better procedure in hope the cyst will not return, no guaentee but his success rate is good.

Maggie2300

Yes please don't give up, why can't you send your reports etc to Dr F to at least get an opinion from someone that believes you. I know what it feels like to be told they are not your problem and it sucks, but don't let them win, at least there is a Dr out there that really cares for us. Bless him

Maggie

Maggie2300

Hi Mary
That is so good to hear, thanks and I pray that you continue feeling so good. Your recovery is a real inspiration to me to keep trying to see Dr F, as I have had surgery,in 2000 but the good effects only lasted 1 day and then I was and am worse then before

Thanks so much

Maggie

mbooth

Hi Maggie,

I have only had 1 surgery. I meant that if I ever need another one, I will go back to Dr. F.

Love, Hugs and Prayers,
Mary B

Jorja

To Everyone with TC disease

Yes it seems we are all born with these cyst but some tramatic thing seems to happen that triggers their growth. My own (3) cyst were triggered by a very bad fall I started going down hill almost simultaneously. I was in the place all the people talk about being hopeless and helpless. DR. FRANK FEIGENBAUM at Research Medical Center in Kansas City is one of the few doctors that know that your pain is real. Please don't give up on your quest for help. My surgery was in Oct. 2007 and I have made a remarkable recovery I am slightly older than most of the people who are having the surgery I am now 66 and feeling good I'm able to do water aerobics, chair yoga, cycle at the fitness center or do the elliptical machine. I want to see all who have this problem back to living their life you are all in my prayers. Jorja

formercampbell

I have given up completely. My doctors have put me on antidepressants and I refuse to be seen anymore. No more poking or questioning. I have decided to live my life full of pain and limitations. I wish I could go see this Dr. that everyone talks about but I don't have the resources to go there. Thanks for the support.

Maggie2300

Hi Mary

Do you mind telling my why you had the two surgeries, as I would have to come from Australia and didn't realise I might need more than one.

Thanks

Maggie

mbooth

I had my surgery in October of 2007 and by May of 2008, I was able to climb a mountain!!! Yes, I still have some pain, but no where near what I had before the surgery. Also, my bowel and bladder problems went away overnight with the surgery. I was 42 at the time and had to wear depends because of leakage, now I am back to being able to go and do without the depends. That in itself was enough to make me feel the surgery was successful, but I got so much more than that. I was crawling to the bathroom before the surgery and after, I could climb that mountain!! In every way possible, it was worth it for me to go get the surgery and I would go again in a heartbeat if I need to.

Love, Hugs and Prayers,
Mary B

Maggie2300

Hi, When did you have your surgery? I have just sent my details to Dr F so have my fingers crossed too

Maggie

mbooth

I would have to say that I am 75 - 80% back to normal. He did a phenominal job with me!!!!

BetsyN

Anyone that has had surgery with Dr. Feigenbaum, what has been your outcome, 100% back to normal? Please let me know. I can't live my life with TC anymore and I have only been diagnosed a few weeks ago, in pain for 2 months, I can't imagine being in pain for years like this.

mbooth

Please get in touch with Dr. Feigenbaum in Kansas City. If anyone can help you, he can. Go to WWW.frankfeigenbaum.com to get the information on how to get your films, etc to him for a diagnosis and possible help. I had surgery with him and he is fantastic!!!! I truly believe he can help!!!!!!!!!!!!!!!!

soraya

I know it's easy to say don't give up,because I am right there with you. Please try Dr. Frank Feigenbaum In Kanas City,Mo. There is also Frasher Henderson in Maryland.

soraya

I wish you the best of luck. I know how frustrating it can be to get some one to believe you. Please let me know how you are doing.
Soraya

formercampbell

I posted my story a few weeks ago. I have a 3.5 by 2.5 by 1.8 cm tarlov cyst between L5 and S1. After one failed neurosurgeon appointment, my doctor sent me to Mass General Hospital to meet with Dr. Wilkinson. When I arrived at my appointment, I was prepared for him to tell me that my pain couldn't possibly be caused by the cyst. I was told by the secretaries at his office that he was "an expert" in Tarlov Cysts. He looked at my mri and said to me that this wasn't my problem. Tarlov Cysts don't cause pain and he went even further to say that I was born with this cyst. I was shocked and began to cry because I know in my heart this isn't true. I asked him how rare these things were and he told me that "everyone" has one. It's not a rare thing. He then said I had a smaller growing on the left side of my spinal cord but he diagnosed me as having a back sprain. A THREE AND 1/2 YEAR BACK SPRAIN. He stated he's going to send a recommendation to my doctor that I undergo physical therapy and injections. I told this idiot that I underwent 2 rounds of physical therapy and 1 1/2 years of injections in my lower back. He didn't want to hear me and said that was his final diagnosis. I called my doctor on friday afternoon crying hysterically because I can't take anymore. I don't want to see anymore "specialists", don't want to undergo anymore tests. I told her I just want to crawl into bed and not get out anymore. She's going to try me on some antidepressants. I realize mostly everyone who suffers from these has the same problem but it's so frustrating to know you're ill and that this is causing life altering pain, but these doctors could care less. Hopefully someone from this group could give me some hope and let me know that I'm not crazy and at least someone else out there has had the same experience.

Massmatter

My 17-year-old son had a TC. It was removed in May 08 at Children's Hospital in Columbus by Dr. Kosnik. The surgery was successful as for removing the cyst. The Dr. even re-routed the spinal fluid back into the spine so that the cavity would not fill back up. I read that recovery is 12-18 months... I believe it. Jordan, my son, is still in pain and has a hard time sitting. His cyst was on the S2-S3 and was almost 5cm. His pain went away from before the surgery, but he was left with a new one. The new one is at the surgery site and is worse than the old one that went from the base of his skull to his thighs. 6-15-09, he is going back into Children's to see if we can block the pain. He has been on meds a long time. However, when he went off of them became depressed because of the pain. This is a kid who has never talked about "ending it" I watched him go from Mr. Responsibility to Mr. Hopeless. I refuse to lose him to this disease and let the pain consume his young life... or anyone else if I can help it.

Massmatter

Good luck with your surgery.... Please keep us posted.

Massmatter

I have seen 2 neurosurgeons and they both tell me that the Tarlov cyst is not the problem

I'm thinking from everything that I have read....it probably is and you just need to find the right Neurosurgeon.

deeryjo

I know that the neuroradiologist that once worked with Dr. Long recently moved to Canada, Dr. Murphy. I don't know his first name but maybe John's Hopkins neurosurgery department might know.
Good luck.

Tammera

Hi this is Tammera.I had surgery with Dr.F last Oct .16,2008.He is such a wonderful doctor.His staff is so nice and his nurse Debbie is incredible.I did not go back to work until Jan.1 and that was a part-time basis.Recovery is slow but well worth it for me.If you have any questions you can ask me at shamera@prodigy.net.We will be gone for a week at Walt Disney World soon.So if I do not get back to you that is the reason.May God guide your journey,Tammera

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