Schwannoma and Tarlov Cyst

[bea]

Hello,

I'm new to this forum.  I have been coming to get helpful information since I was diagnosed approximately 1 month ago.  I would like to tell my story and see if anyone that has had a similar diagnosis has any suggestions.  
I've been having lower right back pain for approx. 5 years now.  I had attributed it to my profession.  I am a full time dental hygienist and it is very stressful on your lower back.  I also started getting electrical shock signals on my right knee for the last 3 to 4 years.  At the beginning it was maybe once a month if that and now they are everyday, sometime 3 to 4 times a day.  Then 2 to 3 years ago I developed a weird sensation at the back of my left thigh that radiates down to the back of my knee and then down to my heel, really strange.  When it gets to my heel, it is more like an electrical shock.  I'm not sure if it is sciatic pain because it never has affected my buttocks.  For the past 6 months I have also started having bad right knee pain.  It hurts all they time now and I cant bend my leg.  Around the same time I have been noticing an audible grinding on my right hip/groin area.  I'm not sure where exactly but it feels deep in.  The grinding is not painful and for what ever reason I notice is more when I walk barefooted.  
I finally decided to go to a spine center and have it checked out.  I saw the pain management Dr. and he gave me a lumbar cortisone injection that did nothing.  He stated he thought it was my facet joints and ordered an MRI.  The MRI report read that I had at the T12-L1 a heterogeneous-appearing 1/6 cm solid-appearing lesion noted within and widening the right neural foramen most consistent with schwannoma versus neurofibroma and at S2 a sacral nerve root sheath cyst with mild vertebral body scalloping without insufficiency fracture.  The report did not state the size.  Added to that I had disc desiccation and mild disc displacement at T12-L1, L2-3, L3-4, L4-5.  Mild to moderate facet arthropathy on L1-2, L2-3, L3-4, L4-5. Also on the L4-5, shallow broad-based protrusion eccentric to the left with mild facet arthropathy with capsulosynovitis and ligamentum flavum hypertorphy indents the thecal sac and results in narrowing of the lateral recesses left greater than right with mild to moderate biforaminal narrowing left greater than right and abutment of the descending L-5 nerve roots bilaterally also left greater than right.  
The pain management Dr.  stated the schwannoma is to far up the spine to be causing the right side pain and the cyst are mostly asymtomatic.  He continued to think it was the facet and wanted to do a lumbar block to locate which facet joint it was and than go in a deaden the nerve.  This he said would help for a period of 6 to 8 months if it was the facet joints. I insisted I wanted another MRI of the thorasic an lumbar spine with and without contrast as recommended by the radiologist that read my MRI. After my insistance, he ordered the second MRI and I had it done today.
Do to this forum, I will have Dr. Jollo review my MRI and get his opinion.  I am a little worried because I had no idea I had so many issues and am not sure where all of my pain and triggers are coming from.  I was not impressed with the Dr. I saw and will be going to a neurosurgeon for a second opinion after Dr. Jollo gives me his opinion.  I'm concern about the tarlov cyst due to its location.  I've read they never want to operate for this type of cyst.
I apologize for my lengthly message.  If anyone has been diagnosed with anything similar to mine please let me know your symptoms or suggestions.

Thanks

[michelle]

Hello bea, I had a 6 centimeter schwannoma located at T10 to T12 growing from nueral tube removed on June 16th, 2015. I also have Tarlov cyst located at s1. I have many of the same symptoms that you are describing and I was wondering if you had had surgery yet?

[Bea F.]

Hi Michelle,

I have not had surgery.  I did go see a neurosurgeon in Tampa, Florida, Dr. Uribe in July.  He believes my back pain is from the schwannoma and would like to operate but will leave the decision to when and if I'm ready.  I have decided to monitor it at this time.  He does believe my other symptoms are not related to the schwannoma though. He is also of the belief that the tarlov cyst does not cause symptoms and if it did,he said there is no treatment for it.   I will have another MRI in Jan. and see if it has grown. My symptoms are about the same and I am on a wait and see approach.  

How did your surgery go?  I hope you are recovering well.  The size of your tumor might make your case a little different than mine.  

Thanks so much for reaching out to me and I wish you the best on your recovery and hope you are out of pain!
Bea

[michelle]

Dear Bea, I'm glad to hear that you are getting other opinions from NS docs. I don't know how old you are but maybe that is why you have decided to wait for surgery. For myself,I first started noticing something was wrong almost 2 years ago,when I was 45. My right leg was going numb and my knee hurt and felt like it was going to give out when I walked. My right hip started to hurt deep inside and I had weird 'electrical' like shock going through the hip and groin area all the way down the leg and into the foot. Pain in my back began shortly after and got progressively worse. I was sent home with steroids, offered shots, physical therapy, etc.Nothing helped of course. I KNEW something was really wrong, even though the docs made me feel like I was crazy (I was even labeled as having a 'personality disorder' whatever that means,lol. It was at least 6 months of going back and complaining to my doctors before an MRI was finally ordered. They found the tumor and the Tarlov's cyst as well as syrinx (build up of spinal fluid due to tumor compressing my spine) The NS recommended surgery but couldn't do it for 4to 5 months. I got 3 different opinions as I was terrified of waiting any longer and choose Dr Keith Black at Cedar Sinai in LA. He got me in right away. I KNOW that if I had waited much longer that the tumor would continue to grow and I would end up losing bladder and bowel function and mobility. The surgery was successful as the tumor was completely removed, although some nerves had to be compromised as the tumor was growing from the neural tube. It has been 3 months and I am walking and have control of my bladder and bowel functions. But to be honest the symptoms I had before surgery are still there and Im in pain still with numbness a little worse. I do not regret having the surgery, it probably saved me from being paralyzed from the waist down. My biggest REGRET however is that the tumor was not removed when it was smaller. ....My opinion, for what it's worth, is that you should get it out asap, before it grows and compresses your cord....Im not trying to scare you, but damage done to the nerves from compression will most likely NOT get better and the tumor will continue to grow. All three of the NS docs I saw agreed that however you are prior to surgery is about how you can expect to feel after. Removing the tumor only stops the progression. I was a healthy and very active 47. I realize that I need to give it more time as the surgery was only a little over 3months ago, I just wish they would have found it when it was smaller, I would be in much better shape than I'm in now. ....Let me know how it's going for you.....I will be thinking of you. :-)

[omar43]

I have just been diagnosed with Migraine. To get permanent relief my friend is suggesting me to get acupuncture therapy. I wonder if anyone has experience with acupuncture for Migraine! Also recommend domestic acupuncture Mississauga clinic for it!

[Wendy]

Travol cyst to cause pain and all kinds of different problem. These drs and xray techs need to read more information before making assumptions.