Anyone with Tarlov cysts

[Wirral47]

would like to speak with anyone who has this debilitating pain

[DorsetLady PMRGCAuk volunteer]

Don’t think you’ll get anybody from this particular forum - sorry to say. But if you are in such pain I send you my sympathies.

[Wirral47 in reply to DorsetLady]

thank you for your sympathetic reply--really appreciate that someone is thinking of me---barbara from Wirral

[Daisychain12]

You poor thing. Is it awful? Have you browsed the other HealthUnlocked communities? Xx

[Wirral47 in reply to Daisychain12]

thank you for your sympathetic reply----so glad someone is thinking of me. Have a connection with an American doctor but wondered if anyone is experiencing the same as me. The pain is draining but no-one in Britain will help.

[Daisychain12 in reply to Wirral47]

Darling I’ve never heard of it. I will google and at least you won’t feel alone 😭😭

[Daisychain12 in reply to Wirral47]

So sorry I am out of my depth. Have you tried Facebook? I think there is a Facebook page for everything under the sun. If there are treatments overseas why not set up a GO FUND ME page for yourself??? Very good wishes to you xxxxx

[Wirral47 in reply to Daisychain12]

you are a real tonic! Thank you so much for your interest---I've done all the research myself and know I have to decide on going to the American doctor---not an easy decision but coping with the pain is awful. The worst is being told by neurologists here that they don't cause any problems! Their only answer is pain management clinics! I just feel so frustrated when I have paid into the NHS for so long. Love and best wishes, B

[Ciar]

I am sad to join you here. In 2009 I began having strange symptoms...not being able to sit, sciatica, bowel and bladder. Issues, pelvic pain, etc. after 6 months of physical therapy I had an MRI of my lower back. Fortunately, the radiology tech spotted something unusual and kept going lower to the sacrum. She found a giant cyst 11x5x3 cm. It had compressed 10 nerve roots and my sacral bone eroded to paper thin and holes in many places. I had surgery to remove it with the top US surgeon, Frank Feigenbaum in 2010. He is amazing, but my situation was extremely rare and very severe. I have a lot of nerve damage, but I’m doing well in spite of it...can’t sit or drive very long, but a good walker and can do a lot. Ask me anything, I’ve been through the ringer.

[Wirral47 in reply to Ciar]

thank you so much for your concern. I have four cysts on s2 and have been in severe pain for three years---have contacted Frank Feigenbaum and was prepared to see him this month but am not at all well. Did you go to Cyprus or America? Did you have problems with numb legs which then went to freezing cold? I have disc problems a s well and can't get any sense out of anyone except for wanting to send me to pain relief clinics, which won't solve the problem. They can't even understand that just sitting in transport to go there is crippling. How long after the op were you able to get about? I'm interested in all that happened and the outcome. Love, B

[Ciar in reply to Wirral47]

My giant meningeal cyst also was from the S2, but it was so big it was all over my sacrum. Fortunately for me, my lumbar spine was in great shape so there was no confusion about what was causing my trouble. It hadn’t progressed to numbness in my legs. I had only some sciatic pain in the left leg. Most of my symptoms were pelvic pain and weird sensations in the area, and lots of pain in my privates and seat area. Also lots of pain in the sacroiliac area. I was not able to sit much, but never had trouble walking or moving, in fact I felt better moving all the time than being still. There was a fantastic group on Yahoo back then, which is sadly gone now, but from that I know that everyone has lots of different symptoms, and recovery from the surgery was highly variable. It’s a long recovery and I still have plenty of trouble from that nerve damage. PMR is so much different because it wants me rest. I know from 2 MRIs that I have unusual patches of variable amounts of inflammation on my spine and I think that there’s now a lot of it in my sacral spine but no doctor will talk to me about it due to the giant cyst and my surgery to remove it. The nerve pain is resistant to prednisone, though, and the PMR pain is helped. It is confusing for me to deal with PMR on top of the cyst damage.

My surgery was in the US, in Kansas before Dr Feigenbaum moved to Dallas.

[polymy]

The daughter of one of my friends has Tarlov cysts. She has been travelling to London for various procedures. The consultant neurologist she sees was trained by the expert doctor in America. She has been trying to get some help for well over a year now. I am so sorry you have this rare condition. I doubt very much if there is a forum to be found.

Liz.

[Wirral47 in reply to polymy]

thank you so much for thinking of me---do you know whether the doctor in London is Adrian Casey? I have heard of him and would love to hear something positive.

[polymy in reply to Wirral47]

Yes the doctor is Dr Casey. The difficulty has been getting all the necessary tests done. Dr Casey wanted her to have all the necessary tests done in London but NHS said she would have to have some done locally. She only sawDr Casey for the first appointment which she paid for. She has had further appointments in London but has seen one of his team. It’s a question of funding whether or not she gets the treatment she needs. Nobody seems to coordinate things and she is waiting ages for appointments. My friend is so despondent about her daughter. There seems to be a lack of interest here.

Liz.

[Wirral47 in reply to polymy]

again, thank you for the information. I've contacted Frank Feigenbaum ---he operates at the American hospital in Nicosia three/four times a year and the whole transaction seems easy. I know the NHS won't pay for a thing and Beatrice Viviani has lobbeyed Parliament for change but it hasn't been listened to. If your friend's daughter hasn't seen the video of Beatrice in Cyprus, it is on U Tube under Tarlov Cysts and there's another one of Dr Feigenbaum talking about them. I was interested in hearing something about the London doctor, as there seem to be negative comments. The American hospital is known as AIMIS if she wants to look it up. I've had to pay for three separate MRI scans on my sacrum,which I am really annoyed about, as .we pay so much into the NHS. I'd love to know how she gets on in London and I'll keep in touch .I just have to make an enormous decision as to what to do.Best wishes, B.

[polymy in reply to Wirral47]

Wirral,

My friends daughter has definitely had her MRI scans paid for by the NHS.

[Wirral47 in reply to polymy]

thank you for your reply. Unfortunately,here in the north west there was nothing on the NHS screen my doctor could bring up to MRI the sacrum---it only goes to the bottom of the spine so I had to pay at our local private hospital. Hope she is helped quickly. B

[Chihuahua1]

Hello Wirral47. I have a cyst at the base of my spine, which has started to cause some issues and when I looked up the symptoms many of them match; but it would seem that even if my cyst is a Tarlov cyst the NHS does not recognise them and according to the literature I have found on line it would seem that they won't be treated on the NHS. I have copied this from one website, which does give details of a doctor in London that may be able to help.

_____________________________________________________________________________________

First of all there is a support group on facebook that you may consider joining: m.facebook.com/groups/27065...

_____________________________________________________________________________________

TREATMENT IN THE UK

There are few surgeons in the world that can operate a Tarlov Cyst. The world’s specialist is Dr Feigenbuan from Dallas, Texas, USA.

Dr. Feigenbaum's practice routinely treats patients with giant meningeal cysts from all over the United States and other countries(Cyprus).

DR Casey from London uses a similar technique to Dr Feigenbuam and that this is available in the UK.

Dr. Dorte Clemmensen is available in Denmark for treatments.

The treatment is not available under the NHS, either routinely or through specialised commissioning and they do not routinely commission the treatment because of a lack of evidence for its effectiveness. The NHS’s responsible commissioner. (mytarlovcysts.com/documents...

This is the reason Ms Beathrice Viviani, from Bournemouth, was given when her application for a state founded treatment in another European Economic Area (S2),was rejected by the Border Healthcare Team (NHS England) after travelling to Cyprus to have her Tarlov Cyst treated privately by Dr Feigenbaum at the AIMIS Spine Centre.

Ms Viviani had to use all her savings (£30.000) to pay for the surgery that saved her from being bed ridden and on a wheel chair for the rest of her live.

Contacts:

Dr Frank Feigenbaum, USA: frankfeigenbaum.com/

Dr Frank Feigenbaum at AIMIS Spine (Cyprus): aimisspine.com/surgeon/dr-f...

AIMIS Spine Cyprus - Tarlov Cyst: aimisspine.com/condition/ta...

Dr Adrian Casey, London:rnoh.nhs.uk/health-professi...

Dr Dorte Clemmensen in Denmark: phvarde.com/en/

neurokirurgen.dk/tarlov-cyste/

facebook.com/Tarlovcystcenter/

I hope this is of some use to you. Chihuahua1

[Daisychain12 in reply to Chihuahua1]

How absolutely lovely of you. I hope she sees it xxxx

[Wirral47 in reply to Chihuahua1]

thank you for all the trouble you went to for me---it is hugely appreciated! I already knew about the choice of doctors and know I have to come to a decision myself, as I'm tired of specialists trying to fob me off with their ideas and not offering anything constructive. I really hope your cyst is not a Tarlov------I think mine may have started from injections for the pirriformis muscle, which was the original diagnosis---but completely wrong! Do let me know if I can help you, as you have been so kind. Love and best wishes, B

[Wirral47 in reply to Chihuahua1]

I can't remember whether I thanked you but a huge thanks for doing all that research for me. I did know a lot of it but it makes me feel good to know you are thinking of me. Frank Feigenbaum comes to Cyprus three times a year to operate in the American hospital in Nicosia. I've had to pay for my own MRIs as the NHs wouldn't go further than the lower spine so will be sending them off. I sincerely hope yours sin't a Tarlov cyst, as doctors here don't want to know anything about them. A top neurosurgeon actually laughed at me and told me the extreme pain was bursitis in my buttocks, which it definitely isn't.Anyway, let me know how you go on and i'll do the same. Much love, B

[Spicer21 in reply to Wirral47]

Hi Wirral47,

I've got two suspected Tarlov cysts on the left side of my sacrum at S3. They were found when I had a pelvic MRI on the NHS as I was being investigated for anorectal pain, which radiates into my left buttock and down my left thigh. My pain is like yours - very debilitating. I cannot sit without a lot of pain.

The radiologist's report on my MRI didn't mention the Tarlov cysts at all, but I got a copy of my MRI and saw them for myself.

I'm going to get a further MRI done privately to send off to Dr Feigenbaum for his opinion. I was advised by AIMIS in Cyprus to get a T2 weighted MRI of the whole of my sacrum in a fully enclosed scanner. When you organised your own MRIs of your sacrum was that what you asked for? Or were you given more detailed instructions as to what to get? I'm planning to get the scan done through a company that will organise scans for people who want to self-refer.

I'm also wondering why you had to get 3 separate MRIs done. Did Dr Feigenbaum ask for all three?

It's scandalous that the Tarlov's are generally considered by the vast majority of the medical profession as always being asymptomatic (when that's clearly not the case) and we can't get treatment - or even MRI scans done for this - on the NHS.

I hope you will see this reply and then perhaps we could keep in contact regarding our respective 'Tarlov Cysts journeys'.

Wishing you all the best.

[Wirral47 in reply to Spicer21]

dear Spicer 21, thank you so much for writing. I have four cysts on S2 and am in agonizing pain so know what you are going through. I had three MRIs because there was a big gap in time---my pain has been more than three years----but you only need one. just one showing the full sacrum but I think the wording you have is the right thing. I spoke to Debbie, Dr Fs nurse via e-mail and she said just send mine for them to look at --and it was fine. My problem was having to send the paperwork in a computer file, as I had to get a friend to do it for me---the instructions are on the AIMIS forms. The MRi had to be on a disc, which we couldn't work out how to send on a computer so I ended up posting it. The contact address if you have to post anything is Stanislava Surgova, AIMIS P.O. Box 52252, CY-4062 Limassol, Cyprus. I sent off all my stuff, Debbie skyped me and my Skype wasn't working so she phoned me and checked my symptoms. She arranged for DR F to ring me on a Friday night at 5pm and he rang dead on the dot. I couldn't believe "Hi B, this is Frank!" He discussed my paperwork---my problem is I'm 78 so it's a risk, as all operations. He was happy to go ahead last June but I suddenly had stomach problems which went on for ages. They set me a quote for something like 40 thousand pounds---operation, ten days in a top hotel with physio visiting every day and complete transport on the island. It's an awful lot of money---I believe the lady in Denmark is cheaper and does the same thing. Anyway, I wasn't in any state to travel so it's all on hold. Dr F was in Cyprus two weeks ago---not sure if the next time is April or June. I'm now have tests for irregular heart beat so everything seems to be conspiring against me! I've changed GPs three times and nobody knows anything about Tarlov cysts. I know Beathrice Viviani, who is on U tube relating her experience in Cyprus has had a group lobbying Parliament but has got nowhere. I sent her an e-mail and she sent her phone number, offering to help with any advice. I'm not on Facebook but I know they have a site. I don't know where you live but I had my scans at the local Spire private hospital----think the two were £450 and the last £390. Hope this some kind of help-----I@m on my own so the decision is a really big one and I have to take the big step! I saw a top neur surgeon in Liverpool who told me not to waste my money as he'd done the op in New Zealand and the cysts just fill up again. He wasn't happy when I told him "Not if it's done properly!" Let me know how you get on and keep in touch---we need each other as nobody else wants to know!

[Spicer21]

Hi Wirral47,

Thank you for all the information. I made an enquiry this afternoon about getting a sacrum MRI and what you paid for your scans is circa what I'll be paying too. Via the scanning company that I contacted on the Internet, I can choose which private hospital to go to and one of them is a Spire hospital, so I might go there as it's pretty close to where I live. They didn't have a 'sacrum scan' option listed on their website, but they've advised me that if I order a 'lumbar region' scan they will instruct the radiographer that it should be a 'dedicated sacrum' scan so, hopefully, that will all work out okay.

One of the things that I meant to comment on before is about you being mistakenly diagnosed as having piriformis syndrome and being given injections for it; I've read that that, unfortunately, happens a lot with symptomatic Tarlov's! I've had injections elsewhere in my spine, which didn't help me either.

I'm going to carry on this reply in a private message to you, so that I can say a bit more about myself and my situation, rather than talking about it all in open forum. I'll try and do that tomorrow...So, see you then.

[Wirral47 in reply to Spicer21]

DearAnne,

hope I'm writing to the right person as have lost contact details. I've been having a rough time so haven't made any progress with my Tarlov cysts, which are now agonizingly painful. I had a red sore patch on my right calf, decided to call in at the local Walk in and found myself in hospital for twelve days with two DVTs in that leg and a pulmonary thrombosis in one lung!! That meant going on to blood thinners, which now makes any operation difficult. Two days after coming out of the dementia ward where they had found me a bed---yes, a fun time with dear old ladies and me virtually looking after them-------two days later I had to go back to emergency and have pneumonia!! As you can guess, I'm feeling pretty rough and frustrated because I'm stuck at home and need to do so many things.

Hope you have made some progress and will keep in touch. Love, Barbara

[Constance13 in reply to Wirral47]

You poor thing! You are going through it, aren't you?

Sorry, can't help, just wanted to sympathise.

Not relevant I know, but sometimes we PMRers get "down" and really we are "lucky" we have an illness which is 'understood' at least and 'at best' limited.

[Wirral47 in reply to Constance13]

thank you so much for thinking of me. It means a lot to know there is someone who really cares. Love, barbara

[Constance13 in reply to Wirral47]

Although this forum is for PMR/GCA and we are not allowed to go "off topic" too long, or too often, you can always private message anyone to "chat" to.