Re: Surgery to Remove Tarlov Cyst

Posted By Amy C. on April 27, 1999 at 10:45:40
Three weeks ago (4/5), I had surgery to remove a 3cm Tarlov cyst from S1/S2/S3.  The surgery was very tedious and lasted over 4 hours with a 4 day hospital stay.  Before the surgery, I had constant pain in my lower back and left leg (sciatica)for over 2 1/2 years.  The pain in my lower back is now gone, but I have some questions below for which I'd like your opinion.  
1.  I know this type of condition and surgery are rare.  Where can I find more information to become better educated as to why this happened and what to expect in the future?
2.  After surgery, I have an area of numbness between my legs (on my left side only) which extends behind to the middle of my left buttocks.  I get short stabbing pains in this area - does this mean the nerve is healing?  The NS said the cyst was really wrapped around S2&S3.  (I had to go back in to ER because my bladder stopped functioning but that is better now.)  Will I have permanent nerve loss?  Will this affect my ability to achieve orgasm?  (The left inside of my vagina is also numb.)
3.  My incision site where they did the laminectomy is only mildly painful.  However, three days ago, I had a terrible headache (like what I had after a myelogram) which lasted for two days.  Every time I stood up, I would feel pressure at the top and back of my head - when I laid back down it would get better.  I spoke to the doctor who said to stay in bed and call if it didn't get better.  It was better yesterday and today I have no headache; however, I'm afraid I may have had a CSF leak.  Can they happen at 3 weeks postop?  Can they be a slow leak where I will have good days and then bad days?  My NS said one of his concerns was getting a good seal on the surgery site to avoid this problem.  Also, he said there is a danger the cyst will reform.  Do you know of any history for this rare surgery?  What would tip me off that I have a CSF leak and/or reocurrence of the cyst?
4.  My biggest area of discomfort now is pain from the sciatic nerve in my left leg into my calf.  I have a difficult time sitting for more than 20 minutes.  It will hurt at a pain level of 7+ if I have been sitting, 5-6 if I have been standing, and a 3 if I lay or recline on my right side.  I am taking 2 Lortabs 3 times a day for pain which helps somewhat.  It will bring the 7+ pain down to a 4-5.  Is there anything that's more effective?
4.  Lastly, I am a 41 year old woman who is President of a new bank.  I have a tremendous amount of pressure to perform in this position but have the support of the owners of the bank to take as much time as I need to get back to 100%.  My NS is encouraging me to go back to work now after 3 weeks.  I've been getting my mail/messages/work on a daily basis and have been staying on top of things from home with a laptop/fax/phone.  I attended two social functions at the bank last week where I spent 2-3 hours on my feet and paid the price later.  With the level of activity and responsibility of my job, there is no way I can go in for just a few hours a day -- with customers, staff, and daily work, I'll be there at least 6 hours with a 1 hour commute on top.  I can't sit that long plus I can't think as clearly as a bank President needs to while I am on pain meds.  I am torn -- my NS thinks I can start back to work and encourages me to "push it".  If I had a non-public, low-responsibility job at a desk where I could leave after 4 hours, I could; but at my position and responsibility I can't.  Once I go back in, I'm there.  My boss said after major surgery, he doesn't expect me back until at least 6 weeks or more.  I feel if I don't go back, I'll disappoint my NS and he'll think I'm lazy.  What has your experience been with this type of surgery?  What is the normal time before resuming full responsibilities such as what I have?  Should I wait until my sciatic pain is improved before I return to work?  How long might that be?
I realize this is lengthy and apologize for that, but I value your opinion immensely.  Thank you so much for your response!

[CCF MD GS]

Posted By CCF MD GS on April 28, 1999 at 13:42:26
Thanks for your question. Tarlov cysts are also referred to as perineural cysts. They are small collections of fliud wrapped in and around typically a single nerve root as it exits the spinal cord. They may cause pain, numbness and weakness referable to that particular level. They are thought to be benign. Some surgeons advocate surgery for these lesiosn though often the results are less than encouraging for all patients. At times nerves may be sacrificed at surgery which can cause problems in the long run. The area of your surgery provides innervation to the pelvis area so it is not surprising that you have had some problem with your bladder and some numbness inside your perineal area. The fact that the bladder function has returned is good but only time will tell with the numbness. It is possible that your ability to achieve orgasm could be affected but again time will tell. I am concerned about the amount of discomfort you are having and the number of pain pills you are taking. It may be reasonable to have a post op MRI to make sure everything looks okay. There are a number of medications that can be used to treat the pain you are currently having and a referral to a pain specialist may be a good idea. One choice would be neurontin which you can discuss with your doctor. Some of the headache symptoms you descibe do sound like low pressure headache which can result from spinal fluid leaks. They can be present at weeks after surgery. If the positional headache persists you will need to folowup with your NS. It sounds to me that you are not yet ready to go back to work in your own mind. The time to return to work varies for each patient but I would say 6 weeks is a common number. If you are not involved in physical therapy it may also be a good idea. It sounds to me like you need to sit down with your NS for a heart to heart regarding the concerns you have because you still sound debilitated to me. Good luck
This information is provided for general medical education purposes only. Please consult your doctor regarding diagnostic and treatment options.

[Amy-C]

Posted By Amy C. on April 28, 1999 at 15:06:15
Thanks, Dr. GS for your comments.  Sounds like my surgery may have solved the pain I had pre-op but may result in other long-term concerns.  I didn't go into all of the other things I had done prior to the surgery and want you to know I didn't just jump into this with my eyes closed.  I had gone to PT and then a pain clinic prior to this for a year and a half.  The only thing the dr. there wanted to do was RFN.  I had about 10 nerve roots lesioned.  It never did relieve my pain -- he'd do one and after that didn't resolve the pain, he'd say "well, let's try this one."  This dr. didn't find the cyst through two MRI's he ordered.  Why didn't the cyst show up then?  The dr. at the pain clinic got into an argument with the hospital and left suddenly.  It was only after my next dr. (the NS) ordered a CT myleogram that it was found.  
I appreciate your frank comments but can't help feeling discouraged, though.  Please explain your comment about being concerned about my level of pain and the number of pain pills I'm taking.  The rx is for 1-2 tablets every 4 to 6 hours.  
Two last questions, what is the rate of reocurrence of these cysts and where can I find meaningful information about them?  All I've been able to find on the web is one or two paragraphs about what they are but nothing about studies of actual cases, surgeries and outcomes.
Thank you so much for your help!

[CCF MD GS]

Posted By CCF MD GS on April 29, 1999 at 10:56:22
In terms of more information that you can get to read about I'm not sure where you can obtain it. You can always do medline searches through the library but I'm not sure how much information you would beable to glean from the scientific journals but that is one options. In terms of cysts coming back, as with most cysts it is dependant of whether the cyst cavity was removed or not and your surgeon could help answer that. I know that the pain medication you take is prescribed and you are only taking it as directed but it is still alot of narcotic and not the best medication for someone at a high fuctioning job like yourself. Other medications may be better in the long term as well as PT. All tests have limitations and not test can detect all abnormalites 100% of the time. In your case the CT myelogram was more sensative. I hope you can find some relief from your pain. Good luck

[Becky__0__0]

Posted By Becky on June 10, 1999 at 21:06:49
Amy,  Hi, when I read about your condition and that you had surgery to correct it I thought there might be hope for me yet.  I also have a tarlov cyst in my L4/5, I was diagnosed at the Mayo Clinic but they did not want to remove it. So I live with the pain which started in April of '97.  I went to a chiropractor, physical therapy, pain clinic & took pain meds. Nothing worked. I don't know what city or state you live in but would like to know how you are doing?  If you feel it was worth having the surgery.  Also the name & phone number of your neurosurgeon.  I have been on the internet trying to find out more about this type of condition but can't find much.  I am also 41 years old & tired of living like this.  I work as a pharmacy tech & stand on my feet for 9 hours a day 4 to 5 days a week.  Standing and sitting for long periods of time are the worst.  If you can give me any information it would be greatly appreciated.                                                              Thank you,                                                                           Becky                         P. S.  I live in the Upper Penisula of Michigan.            

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on June 27, 1999 at 18:05:16
Becky,
Hope you got your question answered.
CCF Neuro MD










Follow Ups:


Surgery to Remove Tarlov Cyst lynne 7/10/1999
(1)

Re: Surgery to Remove Tarlov Cyst CCF Neuro[P] MD, RPS 7/11/1999
(0)