Tarlov cyst might as well be a pimple

• By distressed (Inactive)
• Reply 4626
• October 18, 2007 at 7:18 pm
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Hi,
Your tarlov cyst is in no way shape or form just a pimple. There are several excellent sites that will lead you to support, information and help.
1) tarlovcyst.net
2) http://health.groups.yahoo.com/group/Straight_Talk_Tarlovcysts/
3)http://www.tarlovcystfoundation.org/Home.asp

These sites will give you all the information on tarlov cysts, the struggles we go through for a diagnosis, most Neurosurgeons consider them asymptomatic and most are but there is definite proof that some are very symptomatic. There are lists of doctors on the sites, forums to talk to people with tarlov cyst disease, support.
I am being scheduled for surgery at a specialist in Kansas City, MO,
Dr. Frank Feigenbaum phone # 816-363-2500 and ask for extension 130 to Debbie West who is his nurse, assistant, surgery assistant if you would like to talk directly to a doctors office. No referral is necessary.
There is also a Neurosurgeon at John Hopkins Hospital -- Dr. Donlin Long in Baltimore, MD
who operates on tarlov cysts.
If you go to these sites you will find all the information and help you need. I put the Dr.'s I have contacted personally and gave you the phone # which is also on the sites I've given you.
You have my sincerest empathy as a tarlov cyst sufferer 18 mos ago I worked on my feet 10 - 12 hrs a day as a deli manager with lots of heavy lifting and hard work. I am now housebound and disabled. As the cyst grew and I went to 9 different Neurosurgeons and while waiting to get into the last referral to on at a very large training hospital, I remember the very first thing the first NS said to me. "Your lower back is covered with Tarlov cysts". I was elated until he told me they meant nothing and never,ever hurt anyone. Almost a year later sitting at home in severe pain one evening this popped into my mind and I started looking it up on the internet and found tarlov cysts so when I went to my appt with the new NS and he told me to basically get off my butt and get moving and he wouldn't operate on the other problems in my back because if he did he was afraid it would make it worse, same as all the others. I ask as he was putting my films back into their envelope "Do I have Tarlov Cysts?" He calmly said "Yes" and they never cause pain or problems of any kind they are totally asymptomatic. I gracefully thanked him, I had my answer and determined to pursue it till I found out what could be done and got the support and information from the groups I gave you. I am trying my best to reclaim my life. I know that right now I can't do anything but wait and that even after my surgery it isn't an instant fix because nerves heal very slowly and there is no guarantee to what degree I might recover. The longer you wait the more the nerves can be damaged. I hope this has helped, If you have questions feel free to contact me at distressed100@yahoo.com
I wish you the best and urge you to go to these sites and start learning and getting the help you need. Prayer are going up for your help and recovery.
A sister Tarlov cyst sufferer,
Debbie

• By reneea
• Reply 4627 · In reply to 4626 by distressed
• November 25, 2007 at 12:21 am
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Hey Distressed!! I too am going to Dr. Feigenbaum for my surgery. Mine is sceduled for 12/18. How about yours? Do you have bone eroding due to your cyst? I just got another MRI for Dr. Feigenbaum and the radiologist informed me that I had bone eroding. It's been a long hard road. I know what you mean about the stupid doctors who don't want to take the time to even listen. I've taken in info and they've flat out told me they aren't interested in learning about it. It is soooo frustrating. I would love to keep in contact with you to see how things go. I know you're scared, me too. Sometimes I feel alone although I have a husband and 2 kids. I wonder if we'll ever be able to go back to work, etc. What is your understanding of the surgery? Do you have the pressure in your ears and sometimes shake real bad? I asked Debbie about that and she said she wasn't aware that the Tarlov cyst caused that but I had my primary care doctor check my ears and she said everything looked great. I think I found a pal lol

• By distressed (Inactive)
• Reply 4628 · In reply to 4627 by reneea
• November 25, 2007 at 1:24 am
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Hi Reneea,
I was so happy to see your post and you are so lucky you are in Mo already. I'm in Pa. Before I can get my surgery I have to get my backpay on my disability and pay for the trip and the room and food. and incidentials. My email address directly to me is distressed100@yahoo.com I would love to have yours and also your phone # if you would like to exchange them. I have unlimited long distance so it doesn't matter how much I talk long distance and sometimes it is just nice to have a person at the end of the line to ask and answer without all the writing. don't get me wrong I love writing too, but sometimes it is nice to have that voice at the other end. If you want to call me unlblock your number so your name comes up and let it ring 2 times completlely and then hang up. I am ususally here all the time, Since I am house bound and only leave to go to the dr which is 2 hrs away. My number is *82-1- 814-542-8854 is the number to call to get through to me and let ring 2 full rings. Waiting to either hear from you by email or by phone.
Love and Prayers for you and your family, this is truly a family disease. It affects everyone around you and is a very difficult disease to deal with. You'll have to let me know what Dr. Feigenbaum said about your cysts. I'm anxious to hear. and hope you all had a great thanksgiving.

Prayers for you all,

Debbie Goetz

• By IMNRN
• Reply 4629 · In reply to 4627 by reneea
• November 26, 2007 at 7:49 am
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Hi Reneea,

Congrats on your upcoming surgery!! Dr. Feigenbaum operated on me on August 21, and it was definitely a turning point in my life!! I hope all goes well for you!!

Linda

• By reneea
• Reply 4630 · In reply to 4629 by IMNRN
• November 27, 2007 at 9:44 am
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Hi Linda. Thank you for your incouragement. So Dr. Feigenbaum did your surgery and it helped?? How is your life today? How was recovery? What can I expect?

• By reneea
• Reply 4631 · In reply to 4629 by IMNRN
• November 27, 2007 at 10:03 am
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I have one more question. I am taking Norco which is the strongest vicodin there is and it doesn't seem to help alot. It also makes me sick to my stomach and makes me feel yucky. I am talking to Debbie " distressed". She said she takes oxycontin and that Dr. Feigenbaum will prescribe it. Is this true. What did he give you for the pain?

• By IMNRN
• Reply 4632 · In reply to 4631 by reneea
• November 27, 2007 at 10:12 am
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Reneea,

To set the record straight, I doubt that Dr. Feigenbaum will prescribe pain meds for you before he does surgery!! I know of no one from out of state who he has prescibed meds for pre-op. However, if you live close to him and are seeing him in the office on a regular basis for Tarlov cysts prior to surgery, that may be a different story--he may prescribe meds, in that case.

I know who "distressed" Debbie is...a lovely person. I don't think she's getting her oxycontin from Dr. Feigenbaum. What Dr. Feigenbaum will do is prescribe pain meds for you POST-OP. I started out taking Percocet and have gradually tapered down to the lowest dose of hydrocodone 5/500.

Linda

• By IMNRN
• Reply 4633 · In reply to 4630 by reneea
• November 27, 2007 at 10:46 am
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Absolutely, YES!! it has helped tremendously!!!! Today, I pretty much have my former life back! I still have to take pain pills, but it's about the lowest dose out there and I am slowly but surely increasing the time between doses. The big difference now is that I can get my pain level to a 0 and go about my life, doing almost everything I'd done before. I still have to be careful with heavy lifting, but it will all resolve in time. Before my surgery, I did very little except lay on the sofa all day long, often spending a good part of the day crying in pain.

The recovery is a long, slow process--no matter how much you want it to be speedy!! It's slow and gradual, and lots of times you'll need to look back and remember where you were before your surgery to see how far you've come. You can expect to have to take it easy for quite some time, regardless of the expectations of others. My husband thought that 6 weeks was supposed to be the magical number, somehow, and when I wasn't 100% by then, he reverted back to his pre-surgery behavior of pretty much ignoring what I was going through. Every once in a while, I force him to discuss it & that gives me the opportunity to point out to him how far I've come--and he agrees!

I think you'll be very glad you chose to go to Dr. Feigenbaum. He and his nurse are the most caring, compassionate people I've ever come across in the medical field!!!

If there are any other questions I can answer for you, please don't hesitate to ask.

Linda

• By reneea
• Reply 4634 · In reply to 4632 by IMNRN
• November 27, 2007 at 7:47 pm
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I went and saw Dr. Feigenbaum yesterday. My Mom drove the 5 hour drive because I was having such a hard time getting doctors to listen to me here in st. louis. I went to a pain management doctor who treated me for a very slight bulging disc and said that my little cyst couldn't be causing the problem. He is prescribing my meds for me he gave me 500mg vicodin and darvocet. I just think i'm expecting to much when I want to be completly pain free. it would just be nice to have an hour a day with no pain or to be able to cook or clean. I'm on the couch all day also, even with pain meds.

• By reneea
• Reply 4635 · In reply to 4628 by distressed
• November 27, 2007 at 7:49 pm
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hey Debbie, sorry about earlier... my cell died. I hope you feel better. Keep your spirits up. Don't let this win.

• By IMNRN
• Reply 4636 · In reply to 4634 by reneea
• November 27, 2007 at 8:11 pm
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I'm sorry you had to drive for 5 hours. I know how difficult it is to ride for that length of time! Fortunately, I was able to do everything by mail/fax/e mail until I actually had to fly to Kansas City for my surgery.

As much as we'd love to have a pain free day, I think they seldom happen without surgical intervention. On a rare occasion I'd have a day with less pain (NOT pain free) and would take advantage of it and do housework or whatever, then pay dearly for days or weeks afterwards. What is the strength of the hydrocodone in the Vicodin you're taking?

When I was making our flight & hotel arrangements for my surgery, I was more excited about that than I ever was about any vacation I've gone on. What a sad commentary on what my life had become!

Hang in there & know that I am counting down the days along with you. I am owner/moderator of a Tarlov Cyst support forum, if you are interested in more support. There are at least 8 of us who have had surgery by Dr. Feigenbaum this year and are members of that forum. If you are interested in joining us, send your e mail address to me at luvmycorvette@yahoo.com and I will send you an invitation to join us. There are about 34 members, mostly women, and it's a wonderful group of people. We'd love to have you be a part of us.

Hope you have a decent evening.

Linda

• By gongshow22
• Reply 194717
• November 24, 2009 at 8:40 am
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I went to Dr. Long at Johns Hopkins hospital. I had my procedure done in July. I was hoping for relief, but my pain got worse. I'm in more pain now then before. I found that Dr. Long's staff made things worse by not responding to any of my concerns. I could get no post op help. I'm in the process of re-evaluating my situation and deciding whether to continue following the Tarlov Cyst path or looking at other possible causes. I have four children and it affects all of them and my husband. I just want it over with.

• By dancewithlight (Inactive)
• Reply 195130
• November 25, 2009 at 8:38 am
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wow, it is great to hear such encouraging news post surgery. I am flying to KC this weekend for surgery Dec 1 and am looking forward to getting my life back. I am a PT by background and self treated my pain for years as muscle then finally went to a PT and after months decided it was not muscle and did an MRI and behold, Tarlov cysts. I did the fibrin glue procedure at Hopkins and it failed after three days of relief, pain steadily increased. I am so glad to hear of positive outcomes and my experience so far with Dr F and his team has been wonderful. I am looking forward to meeting them. I'll post when I get home; I won't have e-mail access out there. happy holidays.

• By Maggie2300
• Reply 195693 · In reply to 195172 by tarlovian
• November 27, 2009 at 12:51 am
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Hi tarlovian

Maybe it is the same people because they are the ones who have had the surgery or have the condition and would like to help others, this is a rare disease, therefore I would not expect there to be many different people out there to give advice or offer help. I understand that you had a bad outcome with your surgery, but you must not become bitter if others have had success and are trying to help

• By Maggie2300
• Reply 195706 · In reply to 195699 by tarlovian
• November 27, 2009 at 4:21 am
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Unfortunately I am one of the long term patients with problems as I first had surgery in '92 and then 2000, so I suppose consider my surgeon did a good job,that I had the best surgeon's and they were very careful, I was considering a 3rd surgery in the US, but like you I am also knowledgeable in medical studies and don't think like what I see at the moment as I have been also studying the forums and watching for long term outcomes, not just the good but all of them. That is why I was so concerned by the lady from Mexico who said she was totally cured in 6 weeks, this I thought was a danger to let people think they could be cured so easliy

• By pml
• Reply 260505
• April 16, 2010 at 2:27 pm
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I have 4 tarlov cysts on both sides of sacral canal at S2.I spent three months trying to find out what was wrong with me.I was in a rear-end collision October 10,2009 and the pain and bladder and bowel problems started immediately.I went to several doctors,a spine specialist,physical therapy and a chiropractor.I also have tried several pain pills to no avail.I was finally diagnosed and have seen one of the best tarlov cyst surgeons in the country.I am going to try the surgery because I am too young to live with the pain .There is no promise of any relief because there has already been nerve damage but I am optomistic and try to keep positive.