[Cooze]

Hi there, I am a new member who has just last week found out that I have an 11cm Tarlov Cyst! For as long as I can remember I have had lower back pain but put this down to my scoliosis. However, when, 2 weeks ago my bladder started giving me trouble and then finally last week gave up all together, an MRI showed up a gigantic Tarlov Cyst. My neuologist, who has recently retired from full time practise has never seen anything like it! I am being referred to a neurosurgeon who might be able to help. Im a rarity here in Ireland, and with a cyst this size appears that I could be a rarity in the world too!! If anyone has any advice I'd be most grateful. If the neurosurgeon can not deal with it, I am willing to travel. I absolutely must get something done with it as do not want to be catheterised for the rest of my life, Im only just gone 29

I know there are many postings on Tarlov cysts so I hope you will pardon me starting a new thread?

Hoping someone can help.

Cheers
Rachel

[gitte]

Hello
My daughter Amanda was having a surgery this monday for 2 Tarlov cysts - the one was at least 8 cm. Very rare they are so big, and very rare in a child our doctor tells us. In the big cyst, a smaller one on 3 cm. has developed. The doctor stopped the leake with fat and musles. we hope he did a good job. We had no choice, a surgery was necessary with all her symptoms but off course we worries, there was only one surgeon here in Denmark - should we have taken abroad?
She is now in hospital recovery - having lot's of pain and have a strange feeling in her left leg. we hope she will be fine. Her symptoms before surgery was severe headace, back pain, leg pain and heat/cold intolerance.
We are anxious to know what she will be able to in her recovery, will she be able to walk the stairs, drive in a car and so on.
11 cm sounds as a big cyst! Are you going to have a surgery for it?
Good luck
Lot's of greetings
Gitte and Amanda from Denmark

[Cooze]

Hi Gitte,

Thank you for your message. How is Amanda doing following surgery? Was it successful? What age is Amanda?

I dont know yet how they are going to deal with my cyst, I go to see a neurosurgeon on 3rd June in hope he has done his research and knows what to do.

I currently have a swollen abdominal area as it is taking up the entire area! Get lower back pain, problems with both bladder and bowel, and get pain in left bottom at time when sitting in certain positions or on certain seats. The nerves to the left leg are slightly affected but dont ordinarily affect me.

Please let me know how Amandas surgery went.

Regards
Rachel

[gitte]

Hello Rachel

Amanda is 13 years old. She has been sick for at least the last 3 years.
Her surgery went well. The first four days without headache, but since then headache every day. We are anxious if the headache is because of a leak after the surgery, but the doctor doesn't think so.
Her bladder problems were better the first 2 weeks after the surgery, but now she have problems emptying her bladder again (
She is still in pain, but less than the first weeks.
She is depressed right now, she says : "Why should I go through this surgery, it didn't help at all"... yes we cross our fingers that time will make things better, but we fear that a new cyst already has returned.
She is going for the next MR scan in two months, but if her headache continues and her bladder problems also gets worse, then we will insist that she will have a MR scan soon.
She also mentioned that she have pain in her left bottom (never had before) like you. I'm sorry to hear that you are in so much pain.
Good luck when you shall meet your neurosurgeon...
Lots of greetings
Gitte

Originally Posted by Cooze

Hi Gitte,

Thank you for your message. How is Amanda doing following surgery? Was it successful? What age is Amanda?

I dont know yet how they are going to deal with my cyst, I go to see a neurosurgeon on 3rd June in hope he has done his research and knows what to do.

I currently have a swollen abdominal area as it is taking up the entire area! Get lower back pain, problems with both bladder and bowel, and get pain in left bottom at time when sitting in certain positions or on certain seats. The nerves to the left leg are slightly affected but dont ordinarily affect me.

Please let me know how Amandas surgery went.

Regards
Rachel

[bonniel]

Hi
I hope someone can help me with stats about Tarlov cyst surgery. I have suffered for over 30 years with back pain. Have do many symptoms related to Tarlov cyst including other surgeries, symptoms of which are related to what I have read about Tarlov's (including mention of possible connective tissue disease, Renaud's disease, ad infinitum). After many questionnable diagnoses (no doctor could give me reasons, although I do have a herniated disk, which is considered minor and various other symptoms such as paresthesis in leg and foot, odd sensations in legs, etc.) at my suggestion, because of pain in sacrum, they finally took an MRI of spine and found that I have a Tarlov cyst on S2. I have had all the symptoms all of these years, with increasing numbness, odd sensation in leg, pain in foot and knee, etc. and I match the "profile". It is becoming increasing more debilitating, I can do less and less physically and I am looking for relief from the constant pain. Have been through treatment such as TENS, physical therapy, elec. stim, etc. ad infinitum.

I would like to seek surgical intervention, the latest if possible - I am at my wit's end with the pain and progression of this "disease".

Is there any help? Has anyone become pain free from surgery? Who do you recommend? Help!

Many thanks

[gongshow22]

Originally Posted by bonniel

Hi
I hope someone can help me with stats about Tarlov cyst surgery. I have suffered for over 30 years with back pain. Have do many symptoms related to Tarlov cyst including other surgeries, symptoms of which are related to what I have read about Tarlov's (including mention of possible connective tissue disease, Renaud's disease, ad infinitum). After many questionnable diagnoses (no doctor could give me reasons, although I do have a herniated disk, which is considered minor and various other symptoms such as paresthesis in leg and foot, odd sensations in legs, etc.) at my suggestion, because of pain in sacrum, they finally took an MRI of spine and found that I have a Tarlov cyst on S2. I have had all the symptoms all of these years, with increasing numbness, odd sensation in leg, pain in foot and knee, etc. and I match the "profile". It is becoming increasing more debilitating, I can do less and less physically and I am looking for relief from the constant pain. Have been through treatment such as TENS, physical therapy, elec. stim, etc. ad infinitum.

I would like to seek surgical intervention, the latest if possible - I am at my wit's end with the pain and progression of this "disease".

Is there any help? Has anyone become pain free from surgery? Who do you recommend? Help!

Many thanks

Last month I had my Tarlov Cyst aspirated and filled with fibrin glue. I am now disabled by my pain. It got much worse. I've been told by my doctors to wait 3 months. It can get better. I find it depressing and I am losing hope with this procedure working.

[Cooze]

Originally Posted by gongshow22

Last month I had my Tarlov Cyst aspirated and filled with fibrin glue. I am now disabled by my pain. It got much worse. I've been told by my doctors to wait 3 months. It can get better. I find it depressing and I am losing hope with this procedure working.

Wow sorry to hear this. Well Ive had my CT Myelogram and it showed that a blood patch I had done for my CSF leaks in March has sealed the neck of the cyst. I am also told I have another cyst which is connected to the CSF.

They are going to aspirate the large, closed cyst.

What kind of pain are you experiencing? Did you have pain prior to the aspiration? Do they know what is causing the pain??

I havent got a date for the aspiration yet but am hoping it will be soon.

Looking forward to your reply.

Cheers
Rachel

[Cooze]

Hi all

Just to let you know I had my cyst aspirated 2 days ago and so far all seems ok. They drained 1200ml of fluid from the cyst! Ive a bit of a headache but not as bad as Ive had before from leaks. It appears that quite a few symptoms have improved, primarily my ability to pass water, and back pain. I wont be able to appreciate full benefits until Im back moving properly but so far all looks good

[gongshow22]

Originally Posted by Cooze

Wow sorry to hear this. Well Ive had my CT Myelogram and it showed that a blood patch I had done for my CSF leaks in March has sealed the neck of the cyst. I am also told I have another cyst which is connected to the CSF.

They are going to aspirate the large, closed cyst.

What kind of pain are you experiencing? Did you have pain prior to the aspiration? Do they know what is causing the pain??

I havent got a date for the aspiration yet but am hoping it will be soon.

Looking forward to your reply.

Cheers
Rachel

I had pain before surgery, but ever since the surgery my pain is much worse. I have severe pain in lower back, into buttocks and down both legs. I can't walk even the length of a parking lot. Johns Hopkins has been very unresponsive. They let weeks go by before getting back to you. It's been over 3 months.

[Cooze]

Hi all,

Unfortunately my aspiration didnt last. I had about 24hrs of noticable relief before feeling awful for a number of weeks, then having bladder issues again and following a CT scan discovered that the cyst had grown again but this time is bigger than before.

I am now awaiting a second aspiration and the neurosurgeon has instructed that an extra amount of fibrin is injected to try and help the cyst seal. If it is unsuccessful again Im in trouble as the surgeon has expressed his reservations to doing the surgery.

If anyone knows any surgeons confident and with a reasonable success rate in operating on TCs I would be very grateful to have their names. I need to be prepared in case this aspiration isnt successful. Locality of the surgeon is not an issue, we will deal with that once we know that someone would be willing to operate.

Thanks in advance.