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Tarlov cyst causing bladder problems

Maggie2300
0 Recommendations

Hi

I am new to the group and wondered if anyone has had problems with bladder infections that turn out to be not an infection, as I keep getting these and my doctor has no idea what to do about it. I am continually on antibotics and am now getting to the stage where there is only one left that works for me as I have built up an imunity to them all.

Has anyone else got this problem and have any ideas on a solution as I am at my wits end and trying to solve this on my own is becoming just too much.

Thanks
Maggie 2300

Explore topics in this discussion:

Exercise Amitriptyline Sciatica Surgery Hysterectomy Tarlov cysts Interstitial cystitis Spinal fusion Pain Pacemaker Lyrica Urinary tract infections Stress

36 replies

cyndiloo67

hi lauren, please contact me ...i was told i had a fibroid and they waant to do surgery but i declined wondering if i might have a tarlov cyst, i too have bladder &bowel problems having scopes done on both and finding nothing wrong .please let me know if you had the surgery and how jt went.

TNACgal

Christine....
Go to www.TarlovCystFoundation.org if you have not already. You will find a lot of information there. They also list many support groups that are more closely monitored than the Inspire site so you will find a lot more encouragement and support with those.
Good luck!

Christine45

Vicki - I read your post. I have been diagnosed with a cyst of my spinal fluid sac and a cust on my sacral nerve. They are located in the same general area are are pressing aginast each other. I have been told that this is non-operable. These were discovered after a really painful 8 months. They put me on Lyrica to help with the numbness that I get. Right now I am in a rough period, but sometimes it is fine. When I set an unusally lot seems to be worse. I would appreciate any support you can give me. How did you find your surgeon. I have read that the results from this type of surgery are unpredictable at this point. Hope you will write back. Thanks. Glad you are doing better.

Maggie2300

Hi Sydney

I have Tarlov cysts in my lower spine and have the same symptoms that you have with the pain. Yes I have had MRI,s and it is a nerve problem. I had a proplase fixed about 18 months ago and since then it as gotten much worse and I can't pass urine at all without a catherer, so please be careful who you see as it is very easy to do more damage to the nerves

Maggie

Sydney1

Hi Maggie.

I'm having this same problem, but also have a weird pain in my lower back, buttocks and down my legs. I have been taking medication as it seems I am constantly getting bladder infections.

This doesn't make sense and I'm thinking this might be a neurological problem. Have you had any neurological tests, or an mri?

irma09

Hi This is Diane from Ia. My daughter just had TC surgery done by Dr. Frank Fiegenbaum this past Tuesday. Today we brought her home to the hotel" She seems to be doing better today than ever. Terrible surgical pain. But, she came down here to K City with nerve damage already. She has been dealing with all the same problems that almost every TC patient has for 20 years. However, the last year and half, it got so bad I was working less. i would go to nerosurgeons in the Quad City area, the first one looked at her several TC on her sacrum, and said I wouldn't touch them with a 10 foot pole, and we never saw him again. He wouldn't even try to find someone who may know possibly more than he did???? She went to Johns Hopkins last fall to see Dr. Long, who was ill at the time, and really wasn't ready to perform surgery due to his health, and the fact that he was perfecting his surgery. Well, he better, Dr. Frank has a much better techniche, we think,,,,,, it is early yet. I would be happy to chat with anyone who has this horrible disease. Diane from IOWA

Maggie2300

Hi

Do you have tarlov cysts??? If so I would not rule out this as a cause. I have had the same problems and am slowly starting to sort things out, without a dr I might add, they just don't get it.

Margaret

Fayya1

I am new to this forum and I have some bladder problems which are new to me. In 2007 I was diagnosed with a prolapsed uterus and had subsequently at hysterectomy. Three months later another prolaps was diagnosed. I switched to a urogynecologist because I was sure I was previously misdiagnosed. October 2007 I had usccessful surgery for prolapsed bladder, vault suspension, rectocyle. I was doing real great for 7 months when I started one, two bladder infections. Every time I was off antibiotics I started the same sympthoms again but the last urine test showed negative of UTI. So what causes my problems. I am off antibiotics for two days and started pain again especially when I sit. I called my doctor who runs out of answers. Anyone out there who experienced similar problems. It certainly is not replated to Tarlov cyst.
Thank you.

Maggie2300

Hi Jane

I have been thinking about you and how you are going. I went to see 2 neuro who treat tarlov cysts, one the first dr who operated on me before. He told me that the cysts have now joined and taken up the whole sacrum and there is nothing else he can do for me. Also since I had the op for a prolapse last Nov I now have to catherise most of the time as I have lost any feeling in the nerves. This dr told me maybe the nerves might regrow and heal and I should wait.
The other new neuro I saw just wanted to fit me with a spinal cord stimulator for pain even though it will not help me with sitting for any longer. I just don't know what to do now as it seems everything makes things worse. The trouble with drs is they don't know what they are doing with our cysts in the picture and the nerve damage we already have. How are you now?

Margaret

lzima

Dear Debbie,I hope that your surgery went well,I haven't been on here for a while.I'm going on April 22nd for surgery to Dr.feigenbaum.

Maggie2300

Hi Jane

Just wondered how you are doing now. I am still in the same mess.

kenn101

Sorry about the other contact I thought I used this botton and it didn't work but I mustn't have ( the side effects of trying to relieve pain ) now I know for next time.
Ken

Maggie2300

Hi Ken

Are you referring to the Spinal Cord Stimulator? if so funny you bring this up as I saw the neurosurgeon on Monday and he mentioned that maybe I need to have this implanted to treat the nerve pain. (Don't know what help it would do for all the other symptons though) Interesting that you say it didn't help the pain that is what I have heard from a lot of people who have had it done and wish they didn't

Maggie

kenn101

PS: I have tried the trial version of the north american machine (made by Medtronics) that gives electrical impulses into the S3 nerves and it didn't work for me as pain is my greatest problem. If you would like to share information you can contact me in a private message thank you.

Ken

kenn101

Hi Maggie

Have you been tested for Interstitial Cystitis. They can do a simple instillation of potassium Chloride solution into your bladder to see if you have it. Here is a web address to the ic network it will explain everything better than I can.
http://www.ic-network.com/

My wisdom to you is get off the antibiotics as soon as possible and if you have IC do not let them give you a DMSO treatment the best is the rescue treatment which is lidocaine sodium bicarbonate and heparin for the pain and amitriptyline helps for urine flow as it numbs my urinary tract so I don't stop prematurely that often.

My story is I had herniated disks in 1999 and as they are the L4-L5 L5-S disks the doctors do not believe that has anything to bladder problem as those nerves are in the L3-L4 disk . My bladder or Chronic Pelvic Pain Syndrome started Nov. 12 2002 I was hit with a testicular pain like I had just been kick there and the pain just kept on with no relief and I needed to pee about every 2 hours night and day and still feeling like I needed to go right after I finished. Once they started me on antibiotics and being on them for a week the pain diminished but after about three days after finishing the antibiotics the pain started again which was a vicious circle for over a year never finding any bacteria and as he didn’t look for any the first time there was no telling if there was every any at least until they started cathaturing me. In Dec. 2003 he suggested I had IC so I had a second bladder Cystoscopy with Hydrodistention but this time with a DMSO treatment My GP was my anesthesiologist so I started to receive proper pain treatment after over a year of agony also have found a medication that has helped my urinary problems so I only get up once at night an can have up to 5 hour between voidings . The following DMSO instillations where not fun in the least I found out that my urethra was smaller than a 12 French so with the pain of the DMSO there was 100mls of blood and I bleed on 4 out of 6 treatments . My Uro sent me to the leading expert in the province and the second best in Canada he started on the recue treatment and 10 French speedy caths which worked good but I needed the treatment too often 3 times a week and the nurses in my town wouldn’t treat me so often. I found other treatments but none where the magic bullet. I now find myself just being treated for the pain and urinary flow problems.
I hope and Pray that you find something that helps you to live a normal life.

Ken Kermack

emicate

he is my doctor!! its great to know that he is so well known. but my dad still wants to get a second opinion. my cyst was found after getting sever leg pain during my cross country season last fall.

i was passed around several doctors before being refered to dr. F we are hoping to have the surgery this summer at the lastest. we would have it during the school year but due to the extensive leave that is required i wouldn't easily get through the end of the school year w/ finals.

jane_morgan

Emily,

Have your parents take you to see Dr. Feigenbaum in Kansas City, MO. He is internationalyknown for treating sacral cyst of all kinds!!!!!!!! He is great and so is his staff.

My cyst is 6.9 now was 6.5cm. You are so young, I am sorry you have to deal with this. How was your cyst discovered? Have you seen any doctors for this?

Most doctors do not know what it is and just passed me around, which does not fix me medically. I can not URGE YOU ENOUGH TO HAVE YOUR PARENTS TAKE YOU TO SEE DR. FEIGENBAUM, he is a neurosurgeon.

PLEASE EMAIL ME AT parkins.morgan@gmail.com, I check this everyday.

Take care I hope you find relief as well.

Jane

emicate

Hi my name is emily and i am 16 years old. i have a 7.8 cm long talov cyst in my sacrum. I don't hav any solutions for you but i want to let you know that i understand what you are going through. My symptoms are starting to get unbearable, and part of it is having the urge that i need to go to the restroom on a moment's notice. Its really hard for me too considering that i am still in school, i had to talk to all my teachers about my urges and have had to stand up and leave the class at the most inappropriate times because of it. Its pretty embarrassing, but at least my teachers understand.

Hope you find some relief-

Emily

IMNRN

Maggie,

I'm so glad you contacted tarlovcystfoundation.org! Mary is right...they are the most up-to-date, comprehensive site out there, and certainly, if you give them a physician to add to the list, Reta will move on it, although I don't think she will just arbitrarily add a name. I believe she contacts the physician first, to determine their willingness to be listed on the site. Some physicians may not want to have their name associated with treating Tarlov cysts. When that happens, sometimes the folks who were treated by those physician then say that people don't care about them or their surgery, and that's unfortunate.

The Foundation's website is a result of years of research and work that has been done by their caring & knokwledgeable board of directors, and is not to be confused with sites who might be lifting the information from their site and claiming they have done the work. The Foundation has, and has had all along, the input and support of physicians.

I'm sorry you didn't find the Straight_Talk_TC forum to be helpful to you. We try to be as helpful as possible, but we understand that we don't have all the answers and and can't be the support group that makes everyone happy. I wish you the best in your search for your cure!

Linda

Maggie2300

Hi Mary

I was using the cranberry juice and cranberry tablets but saw a few sites on tarlov cysts that all said TC were made worse if the body was too acidic which is what they do and warned about them, so I have gone off them for a while. Think they only help wth ITC's

Yes I have two great doctors, the first did my op in 92 and the second did my of in 2000. Both are in Sydney.. I wrote to tarlovfoundation.org about the last as he is a Prof and they don't have him listed for Australia and they are waiting for my reply as to whether I would recommend him and add him to the list.

Maggie

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