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

34 replies

jane_morgan

Hi Maggie,

My understanding from what I have read and my doctor has told me that tarlov cyst location can cause bladder and bowel issues. I read where a female doctor had a tarlov cyst and went undiagnosised for years and had bladder infections and other complications once she had surgery to remove the cyst the bladder issues resolved.

I have bladder and bowel issues with my cyst which my doctor says a tarlov cyst is also a perineural cyst. My spine dura tore and the CSF leaked out and formed a cyst at the nerve levels that control bladder and bowel.

Hope this helps. Medicine changes and doctors knowledge change through experience with patient care. Remember when they said tarlov cyst cause no symptoms, they were worong it depends if the cyst is pressing on a nerve or not.

lauren2

I have constant bladder problems also. I have a fibroid in my uterus and may be going for surgery, hysterectomy. I am to have another ultrasound end of Jan. and will see dr. feb. what is a tarlov cyst. i am wondering if that is the same or another problem altogether. hoping to hear from you.

distressed

Hi,
My name is Debbie Goetz and I am going to send you sites where you can get the information on these problems.

INTERNET ADDRESSES

http://www.health.groups.yahoo.com/group/TarlovTalk.join?
http://tarlovcystfoundation.org/Home.asp
http://frankfeigenbaum.com/practice/
http://www.tarlovcyst.net

Feel Free to write me anytime for more information at distressed100@yahoo.com
I advise you to join the first site, it is a forum and the people there have tons of stories of their own and where to find help.

Prayers to you,

Debbie Goetz

distressed

Hi Lauren,
I don't know if you will see the comment I sent to the first question but I am also a Tarlov cyst sufferer and it took me almost 2 years to get a diagnosis by a doctor that specializes in this disease and finally have some real answers. I have lost most of the use of bowels and bladder and no one could really find out what was wrong. My PCP which is not at all familiar with Tarlov cyst disease found blood in my urine, some infection one time but I have found sites that help tremendousely and are very informative pluse a doctor that specializes in Tarlov Cyst disease. It is a very rare disease and most doctors have never even heard of it. I suffered for 2 yrs befoe getting an accurate diagnosis and will be having surgery with Dr. Feigenbuam soon. Pleae feel free to check these sites out especially the first address which is a forum for tarlov cyst sufferers and has tons of information and you can write in an ask about anything and someone will help you .
Please feel free to write me directly and ask questions. My email address is distressed100@yahoo.com

INTERNET ADDRESSES

http://www.health.groups.yahoo.com/group/TarlovTalk.join?
http://tarlovcystfoundation.org/Home.asp
http://frankfeigenbaum.com/practice/
http://spineuniverse.com
http://www.tarlovcyst.net

You are in my prayers and please remember to feel free to write me if you have additonal questions either before you check out the sites or after.

Debbie Goetz

distressed

Hi,
My name is Debbie Goetz and I'm including sites that will help you with answers to your questons. Join the first site and there is people who you can ask any questions to and they will answers or where to get answers. My email is distressed100@yahoo.com if you like to talk before or after you check these sites out.

INTERNET ADDRESSES

http://www.health.groups.yahoo.com/group/TarlovTalk.join?
http://tarlovcystfoundation.org/Home.asp
http://frankfeigenbaum.com/practice/
http://spineuniverse.com
http://www.tarlovcyst.net

There is answers to your questions and many of us suffer with bowel and bladder problems with Tarlov cyst disease but the number of doctors that even have heard of the disease have heard that it is asympromatic. Most peoples doesn't cause problems but then there are those of us who have sever problems.

Like I said feel free to write me at distressed100@yahoo.com
Good Luck and check these sites out they are a god send.

Prayers,

Debbie Goetz

vclee

Hi Lauren

I have had TC's for along time, not many doctors believe they cause problems. I was lucky to have a pcp that listened to me and read all the information I gave him on this. I did have surgery done on Dec 6th and I went through hell for awhile, but as of today I am doing really well so far, still have some pain but not much. Just get really tired. I listen to my body when its time to rest I rest, ect.
I too had bladder problems, numbness in my vagina area ect.
I am very glad I went through with the surgery and I don't think I would have changed anything.
I have been on all these sights you are being told about. I just felt cause I used another physician from boston that they don't want to have a connection with me, as everyone else on the sites have alot in common cause they used the same doctor. Dr. F. If you have any other questions write back I will help in anyway I can.

Vicki

Maggie2300

Hi Jane

Thanks for your imput. I have already had two operations to help with the cyst compression, which is also a preineural cyst,

First was to decompress the cysts, and the second was to reduce the size of the cysts, but these have not helped wth the bladder problems, they just seem to be getting worse.

I think I might make an appointment with my neurosurgeon that did the last surgery and see if there is more thay can do now as the last surgery was in 2000

Maggie

jane_morgan

Hi Maggie,

I am interested in your situation it sounds like you could help me. I was dx. in 2/07 and had surgery 11/07. The neurosurgeon did a decompression and drained the 6.5cm cyst and folded the cyst onto itself and stiched it. He also did hernation repair.

Why did you have your first surgery, decompression to manage symptons? Why was the cyst done at a later date? What size was yours? If they do not close the leak of CSF how do they stop the cyst from getting bigger and increasing your symptoms?

Where do you live?

I am 6 weeks post op and most of my symptoms are back, I do not know if I was so numb in the lower back, perineum and buttock I could not feel the pain/symptoms untill I started being more active. Like running my sweeper, moping etc. I was told once I hit week 6 I could drive and do anything I wanted eexcept not to lift over 30lbs. I do not have full use of my right foot since surgery so I am not driving right now. I hope they will order PT and get me back to driving real soon, so I can go back to work.

Are you working? What makes you worse?

I am straight cathing myself every 4 hrs since surgery, I would be incontinet prior to surgery 1-3 times a week, now I can not urinate on my own. The bladder is a muscle and it is just not ready to work on its own I am told. It may take time. My bowel issue is also a concern since post op. And waiting to see a colorectal doctor

Maggie2300

Hi Jane
Good to hear from you.

I had the first surgery in Sept, 92 and have had to look this up as it is so long ago now, I had about5 cysts in the S1 L5 area one about 5 cm and an enlarged scarum, It seems he did a decompression on the S1 sacral nerve root cyst, as he thought this was giving me the sciatica, but mentioned in his letter to my GP that he didn't want to make an excision of the cyst as it may cause worsening symptoms. Life was so simple back then, and there was only one book in the medical library that I could find to read about TC and one doctor who knew what they were.

After this about 2 years later when I was still in pain I had a discogram and they discovered I had a ruptured disk, so I had to had a spinal fusion (wont go on about this except to say it made things worse)
Finally found a new nerosurgeon who specialised in TC and he agreed to try to reduce the size of the cysts. (Now realise I really don't know exactly what he did,) but I was wonderful after the op until the physio had me do hamstring stretchs and the pain was back and I couldn't straighten my leg because of the pain involved. Have since been living on Opiods and had bladder problems getting worse and worse. Also haven't been able to sit for longer than 10 minutes .

I live in Australia just out of Sydney, were do you live?

I would take it easier wih the house work and such for much longer, as I think this is were I went wrong after the op. Think if I had done less for longer I might have recovered. I also don't have much feeling in my right foot, this is the leg with the bad sciaticia.

You have a good point about the size growing, I haven't had an MRI since 2000 so this is on my to do list when I make an ap. with the neurosurgeon

I haven't been back to work full time since 92 as I can't sit or stand for long and driving makes me worse

I have been cathing for the past 6 months every night, but I recently had surgery for a vaginal repair, as this was also pulling on nerves and thought it might help with the bladder, but at the moment I am much worse (4 weeks on) Hope the feeling comes back as now I need to cath every 4 hours.

marywithtcs

Hi Maggie,
My name is Mary, I also have had bladder issues ever since I started having TC symptoms.... I have had two surgeries for them, one in 2005 and the second this year, I feel like I can't completely empty my bladder most of the time....I had a lot of scar tissue from the first surgery that the doctor had to remove to get to the cysts....I don't know if that has anything to fo with it or not?
I would suggest you first talk to your doctor and also check the web site www.tarlovcystfoundation.org because they have been doing research for years and have the best information available to date....including available Dr's that are willing to take you on as a patient.
if you would like to email me please feel free to do so at: cwemje@sbcglobal.net
please know that you are not alone and since you have had this surgery long before most of us you are an asset to all of us. Hope this helps?

Mary

jane_morgan

Hi Maggie,

Good to hear from you. I am from Ohio. All my problems occured after an injury at work/lifting a patient back in 2/07. I had to fight Workers Comp and won, PT made me worse but they made me stay in it to keep muscle tone up. Workers Comp and employer strung out the time so surgery was done 9 mos after the injury which did not help maters. I worked on light duty until my boss told me he was paying me nursing wages and was not getting nursing work from me that was in 7/07. I have been off work since 7/14/07, I am going nuts.

I am sorry to hear about your situation. Will they let you do any abdominal exercises to increase your abdnormal muscles thus working on your bladder which is a muscle. What about Kegel exercises? I admit I can not exercise at this time, and kegel exercises have not worked so far.

Have they talked about a bladder suspension or an implant that is like a pacemaker that has electrodes placed on your bladder that is set up to stimulate the bladder muscle to contract and tell you to urinate?

I love to walk on my treadmill and told I could start at 6 weeks I am afraid to get on the thing. I do not want to cause more harm than good. I will take your advisement underconsideration and cut back on activity.

I had 4 laminectomy/4 vertebrae removed from my spine to repair herniation and tears, I was told this had to be done to release the cyst. I was told before surgery they were going to explore and remove the cyst and fill it with fat so it did not come back. The doctor changed his mind and folded the cyst on itself after draining it. My sacrum is very very thin and eroided also from it.

I use to be very active and a physical labor kind of person. I like to work. I know I sound nutty. But I truly like helping others and look forward to going to work. I have been very healthy prior to this.

I can not sit more than 20-30min at times other times 10-15 tops. I walk on the right side of my right foot, due to numbness/tingling and pain when foot is flat. I feel like a freak. My husband keeps asking me why do you walk like that, you are walking on the side of your foot etc. I wonder if he knows how this makes me feel.

I had a foley for a 4 wks then went to straight cathing myself. I was told it would resolve in 3-4 weeks and it will be 8 weeks 1/12.

Do you get a hot/heat sensation when sitting or your back is in contact with something and you are in pain?

I provide the health insurance in our house and will loose it 1/13 if not back to work. I see surgeon on 1/3.

distressed

Vicki,
I would love to talk to you for a little bit. I am trying to compile a list of the different drs that do tc's. No everyone can get to one specific dr. If you would be willing will you email me at distressed100@yahoo.com to give me the name of the Dr. that helped you with your cysts.
You are very right when you say the forums tend to recommend only 2 specific Dr.s. I personally have chosen Dr. F but that is my personal decision with the condtion and complications of my back and he is going to other surgery on my back to correct the othe problems that are also causing me so much pan. There are so many people out there suffering and I thought that an updated list and a site to go to to find the different drs throughout the country would be of great help for many of us who do not have the finances to just hop a plane to anywhere and have something done. Distance and travel is an additional worry and stress on those of us who doesn't have those mean or who insurance will not cover those drs or hospital. I'd love to hear from you and your story and especially your Dr. name in Boston that does this type of work. I look forward to hearing from you and really would appreciate your help as well as any others that may know of other drs. who have helped them.

A fellow TC sufferer,

Debbie Goetz

Maggie2300

Hi Jane

I have not heard of Kegels could you please explain this to me?

My gyno has a machine that I tested for bladder incontince, (I don't have this problem I get the sensation but then just dribbles and doesn't empty comletely) it sends out electrical pluses of some kind I think he had to import the machine from Europe, and they are curing people all the time with this. He has a web address www.drbruce.com.au if you want to look them up. I have an appointment with him on the 14th and will ask if you like about any in the US, as he is very up to date and made up the op I have had. So this would be a good to try before any implants they are suggesting. (Am sick of surgeons suggesting surgery)

I also get a very hot feeling in my butt and back when I sit or walk too much, and find a hot pack and lying dow helps.

Also had pain right down under my foot like you but it was fixed with my first op which was to decompress the cyst only, not touch it at all.

Maggie

Maggie2300

Hi Mary

Sorry to hear you are having the same problems. Have you had infections all the time or are some or your tests coming back negetive like mine. Did you have surgery for the cysts or the bladder and what were they. Would you prefer I email you personally?

Maggie

Maggie2300

Dear Debbie

I have tried to find the first site that you recommended each time you list it, but there must be something wrong with the address as it can't find it.

Have tried the other and don' t find them very helpful for my problems

distressed

Maggie,
You're right I copied it wrong so sorry.
INTERNET ADDRESSES

http://www.health.groups.yahoo.com/group/TarlovTalk/join
http://tarlovcystfoundation.org/Home.asp
http://frankfeigenbaum.com/practice/
http://spineuniverse.com
http://www.tarlovcyst.net

Maggie if you could be a little more specific as to what you are looking for maybe I could help with some other sites. Tarlov cysts and bladder problems are very common. Depending on where your cyst is located it can be causing pressure on the nerves that control the bladder function. I have had various problems with my bladder. Not being able to start the stream, not being able to feel when it is flowing or has stopped flowing, pain like a knife in my urethra area, My dr explained sypmtoms can change if the cyst shifts. Please let me know if there is anything else I can do to help.

Debbie Goetz

marywithtcs

Maggie,
you can email me privately and I'll answer your questions....yes I did have UTI's often but not since surgery for the TC's, and some of the tests were negative and some were actually Diverticular problems....my guts are a mess, but the TC's are gone! I still have pain from the surgeries I've had.

Mary

jane_morgan

Hi Maggie,

Kegel exercises are where you start to urinate then you stop your urination for a few seconds then then restart your urination, you do this on and off. This to done to strengthen the perineal muscles for females. It involves resisting increased abdominal pressure during forced urination or resisting the passage of urine.

It is usually encouraged to help strength the muscles. Yes I agree I am not for any implant.

I contacted tarlovcystfoundation.org/Home.asp yesterday and she as very helpful!, I really know I am not alone. Please go to her site and ask her to email you she responds within 24hrs. I was at the verge of giving up, and she gave me HOPE. I am tired of it all. It will soon be one year since I was injured. Go to libraries and read letter to family and friends it says everything that has gone thru my head over and over again.

Good Luck on your appointment 1/14. I have one tomorrow with surgeon 7 wk check up. I see the urologist 1/15.


Take Care, you can email me at morgan.652@osu.edu if you like

Jane

Maggie2300

HiDebbie

I wondered if you or anyone have had a lot of ITU what treatment doctors have used, as I have been on antibotics so long that I am becoming immune to them and there is only one left to take. It really worries me because if I get symptoms of an ITU and don't treat them my pain level goes up to a 20 and also if it happens to be the one time that it really is an infection it will travel to my kidneys and then I have another problem. I read somewhere that you should ask your doctor if the result of the test is a subclinical infection, but don't know how this would be handled anyway.

This has happened already and I ended up in hospital for a week and nearly died.

So I really need other things that might help???

Maggie

Celtic_Mary

Hi Maggie,

I also have a Tarlov cyst, and also get frequent bladder infections. I have the same problem with frequent / over-use of anti-biotics and I'm sorry I do not have a solution right now. I just wanted to let you know you are not alone!

I'm sure you have heard that cranberry juice and cherry juice are supposed to help bladder and urinary tract infections. However, you need to be cautious of elevated blood sugar. Good Luck, and I will be very interested to know how widespread this problem is and if anyone has found successful treatment.

Have you found a knowledgeable doctor to treat the Tarlov cyst?

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