Tarlov cyst surgery?
 

Hi,
Dr. F. recommended surgery for 5 Tarlov cysts at s1 to s3 due to compression of sacral nerve roots. He stated no guarantees. The nurse stated regarding success depending on what was damaged nerves before surgery. This is scary!
If decide no surgery, the nerves could get worse with damage due to the cysts.
Does anyone have any post op surgery results over 2 years with good or bad results?:confused: Thank you.
Kathryn1, 62 years old, but young in mind and heart!

I am 68 and in the same position. My surgery is scheduled for the 18th of Dec. Besides pain I have terrible internal itching. I would like to hear from anyone who has had success and has had this terrible knawing itch also.
Nonna

Nonna, and Kathryn,
I will at respond to the concerns that you both have. My surgery was on Nov. 30, 2010. I understand that not all patients have the perfect outcome that I experienced, but some of that could be explained by how severe the damage has been to the nerves and surrounding tissue. I am now nearly three years post-op, and I am able to do nearly everything I did prior to my accident. The damaged nerve(s) bothered me for some time after surgery, but I continued with my physical therapy and worked through that. I am 61 years old, and was disabled for nearly five years. I am willing to speak with anyone who has concerns or questions about Tarlov cysts, the surgery, or the recovery process. You can private message me with your phone # or I will give you mine if you want to speak by phone. Full disclosure: I will be serving on the board of directors for the Tarlov Cyst Disease Foundation beginning in 2014. It is one way that I can give back to those who restored my life.
David

Good Luck
 

Hi Nonna,
I am concerned also regarding surgery. Due to insurances change in Obamacare and being on Social Security Disability but not on Medicare til March, 2014 I am waiting til Medicare become effect. Can I ask you if Dr. F's office gave you what it will cost, your insurance, and if any balance you might have to pay? Where are you from? I am in MA. I do not have the internal itching but do have butt pain, burning, numbness and tingling down the legs, back of my thighs pain, cramping in feet, which prevents me from working. I wish you success in December and hope all goes well. Thank you for your support.
Kathryn1

Thank you
 

Hi David,
Thank you for your reply. I would appreciate more information of prior symptoms to surgery. It sounds like a long recovery but was worth it having the surgery. If you could email me with more information, then I can give you my telephone #. THank you again.
Kathryn1

I have tarlov cysts as well as fibro and a couple other things and I couldn't for the life of me figure out why I was itching soooooooo bad. I went to at least three different doctors and one a few times but nothing worked. Finally I tried my own thing and dropped sugar and any yeast breads for at least a couple of months. I also change my toilet paper. After almost two years, it went away. I occasionally eat sugar but not much and I definitely eat breads but I've stayed with the same new toilet paper as much as possible. I don't know which remedy worked or if this will help but it did me. I hope it will help you. It can be miserable.

Any response
 

Karhryn, I am also looking at surgery and wonder if you had any response to your question.

I guess everyone who had the surgery is better and not on here. I did get one woman tell me to check out Dr. William Welch in Pennsylvania. She said 2 people she knows both had good results including herself. I called today and was told he won't remove the cysts unless you have tried aspiration or fibrin glue without success first and referred me to Dr. Long in Maryland.

IF dr long says a letter that you want surgery, you don't have to have FGI first. I had a friend just went there yesterday with no FGI and he was willing to do surgery. JUST have dr long send a letter or send what papers dr long gave you in the past. My GF couldn't get hold of dr long so she sent them the info. I know people went to see him too with no FGI & he was will to do surgery. WHo ever said that, it is not true. Sorry that happened to you.

I am the one who had the successful surgery with him in 2011. I was back to work in 3 months. I had FGI because I wanted to try that first. Not because I had to do it.

:)

Better with surgery or worse?
 

Dear painintheazz,
The question is to have surgery or not? As you can see, not many replies after 2 years or more results from patients after having surgery: good or bad. There is limited information to find first hand experience from patients. THe other question: How much pain are you in? Can you still function doing normal routine activities? My opinion, as long as I am able to function with daily living activities without outside help than surgery right now is not the answer. Having surgery is very risky on the spine and doctors cannot guarantee results. There is always the possibility that you could be worse after surgery. If one is desperate, than go ahead and have surgery. If not, look into other ways to combat pain and to live a relatively normal life as much as possible. I live with nerve pain in the legs, feet, and muscle spasms in back daily, limited to walking 15 minutes and best in recline position when sitting but I can still enjoy life otherwise. I am on disability. Your brain is controlling the pain, program the brain differently and see what happens. Try yoga and meditation and massage. Best of luck to you.
Kathryn1

Dear painintheazz,
Did you try to contact Dr. Frank Feigenbaum in Dallas, TX? He is a renowned neurosurgeon that has had success with patients. He recommended me to have surgery due to the 5 Tarlov cysts. I opted out for now due to him saying to me there is no guarantees. I know doctors cannot guarantee the results due to prior nerve damage to surgery but, for now, my symptoms are not severe daily but off and on. WHen the symptoms do become severe daily, than I would reconsider surgery again. In the meantime, doing more research and trying to relieve the symptoms holistically. I hope this helps. Also contact the Tarlov Cyst Association for more information.
Kathryn1

To Have Surgery or Not
 

Did you meet with him in person? I am going through this now and I cannot deal with the 24/7 pain and am considering surgery.

Hi Katrina, where are your cysts and what are your symptoms? I am also trying to decide whether to contact Dr. F in Texas or Dr. Henderson in Maryland. I think Dr. F is supposed to be the best, but I live in the DC area so may see Dr. Henderson. Do you have other issues with your back that can complicate this?

Surgery or Not?
 

Hi Catrina,
I did not meet with Dr. F in person. It was a phone consultation. This made me leery also. He had all my files, MRI's, etc. but to recommend surgery without seeing me made me uncomfortable. Also he asked if sex relations were painful. I stated I was not sexually active. He writes on his report that sex relations are painful. This also made me leery. Dr. F. is considered an expert in the field regarding Tarlov cysts, but, as I stated before, I am not desperate at this time to relieve the off and on symptoms that are severe with surgery. If I was you, I would look into Dr. F's history of success with patients and see him in person. Do not do a phone consultation! Also, ask yourself if you will be better off having the surgery? How many cysts do you have and where are they? Have you been to a neurologist, pain education doctor, tried yoga and meditation, physical therapy. biofeedback? Operating on the spine is very invasive in which you could result with incontinence, bowel problems, nerve problems that could be worse than you have now. Try all options before considering surgery. If you are one of the lucky ones with good results after surgery, good for you!
Best of luck and I hope you find the right answer.
Kathryn1

Dr. Feigenbaum's office
 

Dr. Feigenbaum's office called me this week and asked how I am doing. I informed Laura, Office Manager that I was leery due to Dr. F's letter stated that sex was painful when it was not since I am not sexually active. Laura was very nice and stated will take this off my record. Also, that there must have been a miscommunication at the time. I was appreciative of her calling and probably was miscommunication. She stated if I had any questions or concerns to call her office anytime. Also, to reconsider surgery due to waiting could make my symptoms worse. I am seeing a different neurologist at the end of July for a second opinion and more information and maybe referral locally to a neurosurgeon for a second opinion. I am sure that Dr. F is highly qualified to operate on Tarlov cysts and I have confidence in him. I need more reassurance before proceeding to Tarlov surgery at this time. I am very scared!
Kathryn1

I have the itching also but the pain in my buttock,leg & thigh override the itching,also have lost holding my bladder.Can you tell me how your surgery went and was it worth going through,also the name of the DR.you used?
Thank you so much for reading this.I am in misery with so much pain.

Hello pattycake,

Welcome to the NeuroTalk Support groups.

I'm sorry that you're in so much pain. I also wanted to let you know that the person that you are asking hasn't posted here in a couple of years or more, so they may not ever see your post.

Hopefully someone else from this Tarlov Cyst forum will see your post and be able to respond to your questions.

take care there.

When my problems started I had itching but it was outside not inside. It felt like a yeast infection if you've ever had one of those. I had surgery with dr f on November 11, 2015. I am 3 months post op. I do not feel better, most days I feel worse than I originally was. As of right now I wish I hadn't had the surgery but am hoping that changes. They will always tell you it takes time. I think people who have suffered a long time just quit posting we have accepted our situation and are not trying to find answers anymore just trying to find peace and comfort each day.
My surgical experience was not pleasant. I know a few that feel the same way. My prior opinion was if a person had surgery sooner rather than later it would give a better outcome. This started 3 years ago for me I had 7cysts s1-s4. I know someone who hasn't hit the year mark of finding out she had cysts and had surgery 6 weeks after me and she's still in a lot of pain. So, I don't know if surgery as soon as possible is the answer either. For me, if I had to do it over as of right now, I would have waited longer to have the surgery.
The recovery and healing process is very hard. You need to have a lot of support and help. I took 3 months off work and mentally was ready to go back but physically it's hard. I'm hoping to build up my endurance and muscle strength. Feel free to ask me anything. Take care

Dear David. Sorry to bother you, but this is my story. Two and a half years ago I saw Dr. FF. He suggested the surgery, but I was scared to death. Now, I hardly tolerate pain and ready to take the risk.
I am 61 work in the office sitting all day long and taken at leas 6 pills to survive until the end of the working day.
To make a living, I need to work at least for four more years before I can retire.
I have an insurance through my work. Not the best, but it's better than nothing.
I live is St. Louis. I have to start the whole process with tests again according to Dr. F's assistant.
How long did you wait before they took you for the surgery?
How it could work to fly to Dallas? Where to stay after the surgery? How long will it take before I can take the plane to go back home? Should somebody stay with me? What the average price for the surgery, of course it varies.. I understand.
So many other questions, but do not want to overwhelm you.

Thank you!
Toma.

Toma,
I understand your initial fear....having someone expose your spinal nerves is not
easy to accept. In my case, I was willing to accept the risks, as I could no longer bear the near constant muscle spasms, combined with existing in a "drugged-out state" every day.
It was nearly one year from my first contact with Dr. Feigenbaum until the day of my surgery. During that time I underwent a series of tests at Oregon Health and Sciences University in Portland, Oregon. The final test was a temporary nerve block, which confirmed the source of the muscle spasms.
As for travel and lodging in Dallas, I know nothing about that, as my surgery was performed in Kansas City when Dr. Feigenbaum practiced at the Research Medical Center there. I would suggest you contact the staff at Dr. Feigenbaum's office and request information from them regarding hosing recommendations while in Dallas.
If you would like to speak directly with me, Private Message me and we can exchange phone numbers. I'm here to help.
David

Hi Toma, assistant in Dr. F's office should give you all the info you need. Surgery is done in Pine Creek Medical center in Dallas, one of the best. In surgery info I got was everything you need to stay in Dallas, names of hotels, restaurants etc. They will help you with all that. And yes, somebody should stay with you. There is a lot o restrictions after your surgery, you will need somebody around. My husband stayed home with me for 2 weeks. And I had to stay home for 90 days before returning to work.
How long wait before surgery is scheduled depends also on your insurance.
Price is also on your insurance, deductibles and your out of packet. Pine Creek Medical will work with you on payments. I can tell you this much, this surgery is not cheap, in my case it was worth every penny.
I hope everything is going to work out for you. Take care.

Hello David.. I am scheduled for surgery on December 20. I would love to talk with you, as I am getting a little nervous and I have questions... thank you!

Sometimes I have that internal rectal/vaginal "itch" too. My symptoms come and go and are almost always different when they return. I wonder if that is normal? But yes... internal itching... I can relate to that!

David... I hope this is how I contact you.. I am new to this site. I am having surgery with Dr. F on December 20... and I am nervous. I am one of those people whose symptoms come and go.. and are not as severe as some I have seen on here. I wonder if I am doing the right thing to have surgery when I am not as bad as some people.. and nervous that if I don't do it now insurance will not pay for it later, as I am only approved through the end of the year. I would really love to talk to you... but I don't know how the site works and I am not sure how I can reach you. I can give you my phone number if you get this... thanks