Symptoms: Tarlov cyst(s)

I am a 56 year old very frustrated female. I am a mother of 3, including a son, who is a physician in residency who says Tarlov cysts are asymptomatic. When I read about other sufferers from Tarlov cysts, I know that our common symptoms are not coincidental. I would like to hear from others. I have a Tarlov cyst on S2 thecal sp? sac. I also have two herniated disks at T10 & T11. I previously received relief from back pain with epidural pain blocks done in the hospital while awake. A few months ago, my orthopedic surgeon referrred me to a new outpatient surgery center (which incidentally he is part owner). After being put to sleep on my stomach, I woke up on my back and my gurney was quickly sat straight up. I immediately had the worst headache of my life in my left brain and stroke symptoms on the right side of my body. I was flown to UAB in critical condition to the stroke center. I have recovered from most of the obvious physical symptoms except weakness in the right side of my body but the pain I have in my back and tailbone area are unbearable. Occasionally I get perineal pain that is best described as being in natural birth labor (awful!!!!!)Also, the pain is severe down the inside of my right leg from groin to below knee. I have chronic unexplainable UTIs. Depression and insomnia have become unbearable. My life has been changed forever. I, also have an 11 year old daughter (that is hard in itself). My doctor's only solution is to prescribe more Lortabs and tell me he is sorry. Has anyone had similar symptoms or experience(s)? Maggie

By irma09
Posted October 9, 2009 at 9:15 am
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To all of you who had good luck with your surgery, congratulations! You are so lucky. I still think Dr. Fiegeinbaum is a good Dr. My daughter just happens to be one of the unlucky ones who is taking longer to heal??? She now lies in a Rehab facility with three hours of Therapy everyday, and then down in bed again. Now they did a nerve study, this Dr. says she has a pinched nerve in the area where the surgery was. Her therapist however doesn't see it. But either way he feels he can help her. He has helped with this RARE diseas ( it is a rare disease) my pain is getting down to a 6 sometimes during the day. She was in the hospital for one week, home for two days, that was the worst two days of her life as well as mine. Then she we took her back to ER and she was admitted again until they found a home for her. She has been on her back in pain for over a month. The therapist told me & my husband yesterday after seeing the MRI after surgery that he thinks she should stay until the end of the month. So 2 months flat on her back, with a comode by her bedside. Dr. Frank no longer calls back before this he was always available, however he doesn't really know what to tell her or what to do. !!!! You tell me was this a good surgery????? I don't mean to belittle Dr. Frank, I do believe he is a good surgeon I just think Tammy is one of the not so luck ones. She had six TC's 4 were treated and two were left as they were not going into the nerves, rather the pubic bone.
Do a lot of research. I did see where someone went to Mexico and had good results.
My prayers are with all of you.
IRma09

By irma09
Posted October 8, 2009 at 9:22 am
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I willpray for you and your little girls. Be strong, have the surgery. Perhaps you haven't had it so long and you will recover completely. My daughter has had this for so long, then to make it worse in 2004 she had an MRI showing the cysts and the doctor said nothing to her. Lesson: Ask for copies of all tests they are yours. Praying in Iowa

By irma09
Posted October 8, 2009 at 9:16 am
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Dear Maggie, Of course the TC's are causing pain. Even though your son is a doctor, and I am sure a good one. Most doctors in the US don't know that they do cause symptoms (pain). We live in Iowa, we searched the internet looking for a surgeon. Ended up at Johns Hopkins first. He couldn't take Tammy for several months, and his health wasn';t goodl. (why did we do there?) Then found Dr. Frank. The pain you describe is just like tammys before surgery. She has different pain now, and it has switched legs. That explains the fact that she now has been diagnosed with a pinched nerve in S3. IS this because of the surgery? We don't know. We to hear all kinds of answers, so frustrating. Go to the Tarlov Cyst foundation web site. There is a list of doctors, maybe you can find one close to you?? My prayers are with all of you who suffer this horrible disease. I really will be surprised if my daughter is ever 100% again.
LOL Irma Iowa

By xtinap23
Posted July 30, 2009 at 2:07 pm
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Hello everyone...I hope everyone is doing well (considering the TC's) I was to have surgery with Dr.F in April until I found out 3 weeks prior that I was pregnant. I am now 27 weeks and my symptoms and pain have gotten ALOT worse. Of course my OB doesn't acknowledge that they are an issue...has anyone been in this situation or have any advice?

By mbooth
Posted July 21, 2009 at 9:30 am
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Hi BetsyN,

You are close to Dr. F and that is a good thing. I had surgery with him in October of 2007 and by May of 2008, I was able to climb to the top of Chimney Rock in the Smoky Mountains. That is the waterfall that was used in the filming of the move "Last of the Mohekans(sp)". I was at the very top of it from the very bottom. There is no way I would have been able to do that before the surgery.

I mentioned the group Straight_Talk_Tarlov, I am a member and there is a lot of good information to be had there. I don't know if anyone is 100% better, but I do know that most of us that have had the surgery are vastly improved from before the surgery. I also know that the earlier you get something done with these cysts, the better your chances of healing are. The problem for some of us is the nerve damage caused by the cysts before we were able to do anything about them.

I definitely feel that my surgery was a success and if I ever need to, I will definitely go back to Dr. F. He and Debbie are wonderful!!

Love, Hugs and Prayers,
Mary B

By BetsyN
Posted July 21, 2009 at 1:24 am
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Hi - I also was recently diagnosed as having a 5.3 cm TC, I had an MRI for lower back pain. I saw a N/S, who said that the pain wasn't from the TC, I am going to see another NS at Barnes in St. Louis and also have sent my films to Dr. F in KC, MO. My question to anyone that has had surgery with Dr. F, has anybody made a 100% recovery, can do things as if before they started having TC pain. I am very depressed over this disease and how my life has change. I have 2 little girls and can't play with them. I really just want my life back and to go back to how things used to be (before TC pain).

By mbooth
Posted June 17, 2009 at 9:10 am
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You can contact Dr. Feigenbaum at 816-363-2500. He has a website that will tell you what he needs to see. WWW.frankfeigenbaum.com You can get everything you need right there. There are testimonials on there also. There is another Tarlov group Straight_Talk_Tarlovcysts. They are wonderful there and loaded with information.

As I said before, I am about 75 - 80% better than I was before the surgery. He and Debbie West are the best!!! You will be in very good hands if you decide to go this route.

Just know that you are not alone!!

Love, Hugs and Prayers,
Mary B

By lwagner
Posted June 17, 2009 at 8:18 am
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mass general told me the same thing ,i live in albany ny can you imagine 5 hospitals later and still no answers.........ive been told this is every common to this is very rare..sooo much suffering i am looking into a new product called spinecor brace ..because of spinal pressure pain will keep in touch take good care !

By Belgiumom
Posted June 16, 2009 at 2:45 pm
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Hi everybody,

I'm a 42 year young mother from Belgium and this is my story so far.
Since a couple of months, I think march, I had severe back pain after doing some little springjobs at home. The pain didn't got away and as I'm not a person that can sit still so did this pain in my back. My doctor recommended that I should take an MRi of the lower back. On the 12th of juin I had an appointement at the hospital. If I wanted quicker answers I had to collect my scan myself and bring it immediatly to my doctor. Before seeing my doc I opend the attached letter to see what is wrong with me.
There I saw for the first time this strange name of a disseas that probally will change my life for the rest of my days, "Tarlov-cyste". Not knowing what it was I surfed the net and what I found didn't make me happy. Pain, wheelchair, etc.... this was my future.
So apperantly I'm at the begining of the pain stage. Maybe if helped quickly this illness can be overwon. I hope so.
@Tammera, I'm from Belgium so Kansas is really far away but acceptable. All the other doctors from Europe that can be found at the Tarlov-cyste foundation are maybe great too, but I can't find any possitive input that would make me choose that one doctor close to my home. So flying over is a choise I wanna really think about.
Can you help me with more info about Dr. Feigenbaum? Tx.
This thursday I'm going to see a neuro, see what this dude will tell me. And then decide what to do.

Love, hugs and kisses from Belgium.
Veerle.

By mbooth
Posted June 12, 2009 at 10:33 am
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You should both contact Dr. Feigenbaum in Kansas City! I heard the same things over and over and over. 5 different doctors told me my pain was in my head. I'm so greatful that I found Dr. F!! He truly helped me to get my life back!!!

Love, Hugs and Prayers,
Mary B

By bren_q
Posted June 11, 2009 at 11:07 pm
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well after MRI's of the lumbar and thoracic area, I saw a neurosurgeon who ordered a cervical and rt shoulder MRI and some electrical condution test in my arms and hands.
the neurosurgeon does not recommed removal of my TC because of the attachment to the spinal cord, he is afraid that should it not seal properly then I would have much worse pain.sometimes I ask myself if it can possibly get worse. I feel like I co-exist in a body that tells me what to do even if I don't like it. My life has changed so much, that I don't even recognize me as a person anymore, and to be honest I just don't want to live like this. I feel like I am punishing my family because they do not do things that they want to do because I can't participate. I often don't tell them of the pain and just tell them I don't want to go, that I have plans for myself and send them on their way. I really don't think they would understand me if I told them how bad I feel and you know how people are when they hear you complain all the time, they don't want to be around you anymore. I've lost alot of friends because I cannot do the things I use to do with them and they just think I don't want to or I am a hypochondriac. Right now darvocet and loratab are the only pain meds my doc will give me. He doesn't believe that I have as much pain as I do and he says if I put you on them now I don't have anywhere to go when it gets worse, which i GUESS IS TRUE, BUT I sure would like him to walk in my shoes for a couple of days. I am so glad I found this site and others who share my pain. My prayers are with you all,, Brenda

By formercampbell
Posted June 11, 2009 at 10:40 pm
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Today I visited Mass General Hospital. After an exam with the doctor I was told that the two tarlov cysts I have I probably was born with and that wasn't the cause of my pain. He chalked my pain to a sprained back. I have had sprained muscles before but none that have lasted over 3 years and never heal. I was prepared for that diagnosis because of other peoples experiences. He wants me to take antidepressants and go on a vigorous exercise routine. This doctor is a "so called expert" in tarlov cysts. I left the office more confused than when I went in. I was also told that a 4 cm by 3.5 cm tarlov cyst was quite small even though it has started to erode my bone. Anyone in this group have any suggestions as to what my next move should be or have had similar experiences with doctors who believe this.

By formercampbell
Posted June 10, 2009 at 10:03 pm
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I feel your pain. I am on 160 mg of oxycontin a day plus 20 mg of valium and 40 mg of flexeril and I still feel horrible. I will be going to mass general hospital tomorrow with the probability of them telling me they can't help. My only advice is to try to stay positive and don't let this disease get you down. I'm sure all of us who suffer from this disease want to crawl into a space and die but everyday we get up and attempt to live our lives.

By mbooth
Posted June 2, 2009 at 11:30 am
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Don't be surprised if he tells you that the pain is all in your head and that the TC's can't possibly be your problem. Very few doctors will acknowledge that these things cause problems.

I also had my surgery in October 2007 and have about 75% of my life back. I had it with Dr. Feigenbaum also. There is Dr. Long in Maryland, Dr. Mendez in Minnesota (or someplace up near there), Dr. Feigenbaum in Kansas City and Dr. Khoo in California. Those are the only doctors I know of that treat these monsters here in the US. Check the Tarlov Cyst Foundation to see if there are any others.

Good Luck!!

Love, Hugs and Prayers,
Mary B

By formercampbell
Posted June 1, 2009 at 9:13 pm
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Thanks everyone for the advice. Unfortunately, Kansas City is very far away from where I live. I wish more doctors were educated in this disease. I am preparing myself for more disappointment on the 11th when I go to Mass General. I have done alot of research on this disease and am certain I will have to inform him.

By Jorja
Posted June 1, 2009 at 3:39 pm
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Hi, I had TC surgery in Oct. 2007, done by Dr Frank Feigenbaum @ Research Med Center in Kansas City also. I have made a very good recovery and recommend him to anyone who is going through this painful disease. His phone number is 816-363-2500. He trained at Georgetown University before he came to KC.

By Tammera
Posted June 1, 2009 at 12:13 pm
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Please look into Dr.Feigenbaum in Kansas City.Or look on the Tarlov Foundation website to find a doctor closer.Please take care,Tammera

By lwagner
Posted May 31, 2009 at 10:24 am
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hello , my name is laura ,i have gone to mass general they told me they are not operating on tarlov cysts any more because of risk they sent me to nyc hosp of special surgery and they couldnt help so i was sent to albany med center and the list goes on the pain makes you go on to try to find treatments ,i truly wish you all the best of luck!

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