MOMOFBOYZ
12-12-2008, 05:10 PM
Hi all I know it's been awhile. It has taken awhile to get any news back. My nuro sent my mri films to a learning hospital for a seconf opinion on a cyst or tumor in my cervical spine. C6-c7.
Today I learned they say it is a perinural or Tarov cyst. I was wondering if anyone out there has had any experience with this? I did some research and guess what? It is kind of rare, especially in the cervical spine. Aren't I lucky?
Anyway I have been sick for 3 yrs and no one knows exactly what is causing it. I am waiting for the nuerosurgeon to call me and see what the next step is. It is kind of complicated b/c I also have cervical stenosis that hurts and is causing symptoms at the same location as well. So he might want to do something about the Tarlov cyst and help the cervical spine at the same time???
Just seeing if anyone out there had any input. Thanks in advance!!!!
Deena
Today I learned they say it is a perinural or Tarov cyst. I was wondering if anyone out there has had any experience with this? I did some research and guess what? It is kind of rare, especially in the cervical spine. Aren't I lucky?
Anyway I have been sick for 3 yrs and no one knows exactly what is causing it. I am waiting for the nuerosurgeon to call me and see what the next step is. It is kind of complicated b/c I also have cervical stenosis that hurts and is causing symptoms at the same location as well. So he might want to do something about the Tarlov cyst and help the cervical spine at the same time???
Just seeing if anyone out there had any input. Thanks in advance!!!!
Deena
Sponsor
captnanny
12-16-2008, 04:40 AM
Hi,
I believe I have the same thing on my cervical spine at c-2. I have to have surgery this thursday because it grew into the fusing area and now I have screws loose. I am very scared because I am in so much pain and I could feel something swollen there I just didn't know what. It hurts so bad but they said if I didn't have surgery it would keep growing and possibly go into my spinal canal even more. The ct report did say I had spinal stenosis which I think means narrowing of the spinal cord. I am so scared because I just want a little relief so I can play with the children I nanny for two days a week. I want to feel able to walk or even lay down without pain. They said cysts in the neck are rare. DId your doc talk to you about options?
I believe I have the same thing on my cervical spine at c-2. I have to have surgery this thursday because it grew into the fusing area and now I have screws loose. I am very scared because I am in so much pain and I could feel something swollen there I just didn't know what. It hurts so bad but they said if I didn't have surgery it would keep growing and possibly go into my spinal canal even more. The ct report did say I had spinal stenosis which I think means narrowing of the spinal cord. I am so scared because I just want a little relief so I can play with the children I nanny for two days a week. I want to feel able to walk or even lay down without pain. They said cysts in the neck are rare. DId your doc talk to you about options?
MOMOFBOYZ
12-16-2008, 04:20 PM
Thanks for your reply! I actually meant Tarlov cyst. But I see you got the point. Also called a perinueral cyst. Unfortuately and this is totally my luck Loma Linda where we sent the films to look at lost the films. So the office is trying to be patient while they find them or the nurse is going to call in a favor to the radiologist to duplicate the films at no charge.
Apparently it is sort of an emergengy. They asked me when I want the surgery and I asked what kind she said an anterior cervical fusion. B/c like you I have stenosis in the c6-c7 area. I asked about the cyst and she, the nurse, said it was no big deal. But I have been doing a little research and apparently they are rare and take someone experienced to work with them.
I just said if the doc said it could wait a few weeks that I have two young boys and would rather not spend Christams in the hospital. So she is going to call me tomorrow the doc is in surgery all day today. I think we're looking at the first or second week of Janurary.
Now I have to look up this anterior cervical fusion. I have no idea how many nights after you have to stay in the hospital. Do you?
Tell me your story. How big is your Tarlov cyst? Mine started at 5mm in August and by October it was 8mm. I fear it is growing as I have a lot of pain. My shoulders hurt and it goes all the way around my waist like a tight rubber band. Also my arms are too heavy to lift, dizziness, muscle spams. feet hurt and are often too heavy to lift. The back of my legs can hurt soooo bad. I am hoping the surgery if successful can help me with some of these symptoms. Pls tell my what all your going through!!!!
Merry CHristmas,
Deena
Apparently it is sort of an emergengy. They asked me when I want the surgery and I asked what kind she said an anterior cervical fusion. B/c like you I have stenosis in the c6-c7 area. I asked about the cyst and she, the nurse, said it was no big deal. But I have been doing a little research and apparently they are rare and take someone experienced to work with them.
I just said if the doc said it could wait a few weeks that I have two young boys and would rather not spend Christams in the hospital. So she is going to call me tomorrow the doc is in surgery all day today. I think we're looking at the first or second week of Janurary.
Now I have to look up this anterior cervical fusion. I have no idea how many nights after you have to stay in the hospital. Do you?
Tell me your story. How big is your Tarlov cyst? Mine started at 5mm in August and by October it was 8mm. I fear it is growing as I have a lot of pain. My shoulders hurt and it goes all the way around my waist like a tight rubber band. Also my arms are too heavy to lift, dizziness, muscle spams. feet hurt and are often too heavy to lift. The back of my legs can hurt soooo bad. I am hoping the surgery if successful can help me with some of these symptoms. Pls tell my what all your going through!!!!
Merry CHristmas,
Deena
captnanny
12-16-2008, 06:37 PM
All I know is that they did not tell me what kind of cyst I have. I have already had an anterior approach so they are going through the back. There is too much scar tissue in the front. I do know that I have screws loose and am in too much pain. My shoulder and neck is numb. It is itchy, feels like someone is pulling my hair all the time or stabbing knife in the back of my neck (right side). I know I am scared to death, the hospital stay will be two to four days but I won't be able to do anything for two to four weeks.
I am a little apprehensive since some people here have had no relief from the second surgery. That really scares me. When the doctor pushed on the cyst it felt like an electrical current running through my head giving me intense, severe pain.
Any other surgeries for you?
I am a little apprehensive since some people here have had no relief from the second surgery. That really scares me. When the doctor pushed on the cyst it felt like an electrical current running through my head giving me intense, severe pain.
Any other surgeries for you?
MOMOFBOYZ
12-28-2008, 07:02 PM
When is your surgery???? I hope it all works out for you!
I haven't had any others. Just a lymph node biopsy.
The nurse told me I will only stay in the hospital for one night. But I am going and if he wants to leave the cyst I will be seeking a third opinion. Since it has slightly grown I do not need a second surgery later on.
My consult is Jan 12th.
Pls let me know how you are. I hope you had a nice CHristmas. It was hard doing things in so much pain, hu????? How old are you? Only asking b/c I am 43 and feel and move like an 80 ry old. Kind of degrating!
Pls let me know more.
Thanks,
Deena
I haven't had any others. Just a lymph node biopsy.
The nurse told me I will only stay in the hospital for one night. But I am going and if he wants to leave the cyst I will be seeking a third opinion. Since it has slightly grown I do not need a second surgery later on.
My consult is Jan 12th.
Pls let me know how you are. I hope you had a nice CHristmas. It was hard doing things in so much pain, hu????? How old are you? Only asking b/c I am 43 and feel and move like an 80 ry old. Kind of degrating!
Pls let me know more.
Thanks,
Deena
captnanny
12-29-2008, 06:06 AM
So sorry I have not been here lately. I had my surgery dec. 18th. I had a synovial cyst. They did it through the back not the front because of too much scar tissue from the last time. All I know is that it was worse than they thought. I don't know if the cyst caused the screws to come loose or if it happened simulaneously. All I know is any cyst in the neck is rare and most doctors prefer to take it out because it is more painful and there is nothing really they can do for it. It is very rare with someone like me who was 90% fused, then did too much physical labor and developed more sever degeneration, that is what caused the cyst. The neurosurgeon said just wear and tear in between the discs can cause it. I'm 10 days out, I won't lie it hurts real bad. I know it felt this bad last time and gradually got better. They did say I would have a lot more pain this time because it was worse than they thought. I had a laminectomy and what ever else at four levels with fixing the screws and possibly a titanium plate. I am not sure about that. I hope you have luck at your doctors. If it is just the cyst, I don't think the surgery will be as bad as mine. I don't want to scare you because we need to keep positive attitudes that this will work. My doctors felt secure enough to tell my mom they thought it would work and would eleviate my pain and movement. They also know she is a lawyer. Let me know how your counsult goes. It helps if you trust the person who is doing it. I had a neurosurgeon and ortho surgeon doing mine as well as someone monitoring my brain waves, I think.
MOMOFBOYZ
12-30-2008, 03:43 PM
Wow! How brave to do the surgery so close to Christmas! I wished I could have done mine this week to recoup a tiny bit before my kids started back to school. DO you have any kids? I am sorry that this surgery was so much worse and was so painful. I will keep you in my prayers.
A laminectomy hu? I will look that up. My pending surgery is mostly about cervical spinal stenosis that is almost impending on my spine. Which I believe that means paralized if not corrected but I don't know.
Then I believe he is not sure about the cyst. A Tarlov cyst is very rare as well. Aren't we lucky! ANd I am afraid he'll want to leave the cyst. Resulting in a future surgery b/c it is growing.
I guess you have to play the waiting game.
My next appt is Jan 12th. I'll let you know.
I hope you heal as quickly as you can be sure and take it easy. Cyber hugs!!!!
Deena
A laminectomy hu? I will look that up. My pending surgery is mostly about cervical spinal stenosis that is almost impending on my spine. Which I believe that means paralized if not corrected but I don't know.
Then I believe he is not sure about the cyst. A Tarlov cyst is very rare as well. Aren't we lucky! ANd I am afraid he'll want to leave the cyst. Resulting in a future surgery b/c it is growing.
I guess you have to play the waiting game.
My next appt is Jan 12th. I'll let you know.
I hope you heal as quickly as you can be sure and take it easy. Cyber hugs!!!!
Deena
captnanny
12-31-2008, 07:47 AM
Hi,
I do know that the surgery does help fix the stenosis. That is why most of the time they go in. I also know from looking up the cysts in the cervical area that they are so rare and everyone has had them taken out surgically. I read somewhere that there are only like 27 documented cases. My doctor told me that if he didn't take it out it would grow slowly or fast, it didn't matter but it would cause more degeneration and stenosis. I think and I may be wrong that stenosis is narrowing of the spinal canal. I would assume they would take it out. Please ask them to on your next appointment.
I do know that the surgery does help fix the stenosis. That is why most of the time they go in. I also know from looking up the cysts in the cervical area that they are so rare and everyone has had them taken out surgically. I read somewhere that there are only like 27 documented cases. My doctor told me that if he didn't take it out it would grow slowly or fast, it didn't matter but it would cause more degeneration and stenosis. I think and I may be wrong that stenosis is narrowing of the spinal canal. I would assume they would take it out. Please ask them to on your next appointment.
MOMOFBOYZ
01-02-2009, 07:29 PM
Hi Captnanny!
I was just checking up on you. How are you healing? Is your pain level at least bearable? I have been thinking of you. I think at least to me the hardest part would be not being able to do as much. Hope your taking it easy!
I will ask the ns in 2 weeks about that cyst. If he in any way is going to leave it I will seek another opinion. Like your doc said mine grew 2mm in a two month window. I realize thats tiny but after time who knows how much.
I will keep you in my prayers.
Deena
I was just checking up on you. How are you healing? Is your pain level at least bearable? I have been thinking of you. I think at least to me the hardest part would be not being able to do as much. Hope your taking it easy!
I will ask the ns in 2 weeks about that cyst. If he in any way is going to leave it I will seek another opinion. Like your doc said mine grew 2mm in a two month window. I realize thats tiny but after time who knows how much.
I will keep you in my prayers.
Deena