TARLOV CYSTS

Hi Im 30 years old and live in the uk. Its been about 9 months since I was diagnosed with tarlov cysts and meningeoceles on my lower spine. I am struggling to cope with how my life has changed and how many limitations I am faced with. Simple things such as standing and sitting become an ordeal and extremely painful. I can't cope with this anymore, my GP and physio believe there is nothing wrong with me and these cysts cannot be causing my pain. Im hoping there is someone out there that will understand what I am going through as right now Iv never felt so alone

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Sophiea, my dear, you ARE NOT alone! I've been dealing with Tarlov Cysts for over 4 years. I only recieved the diagnosis in Oct.'11. THIS after I went to so many doctors and "specialists" who all told me different things. Some of these "doctors" have TOTALLY broken their pledge to "do no harm." I won't get started on doctors because my opinion of a lot of them isn't very good and I don't think the language would be tolerated here...My pain started after my car ran off the road and I basically landed on my butt at 45 mph. The pain and symptoms only increased from that day. I now spend most of my days at home, sitting (walking and stretching when,and IF, I can). I used to garden, dance ballet and run a business. I found out yesterday that my "insurance" isn't going to cover the surgery with Dr. Feigenbaum. God Bless him, he's done his best to keep me comfortable with medication. He's been prescribing 2-10/325mg of hydrocodone every 6 hours, and that helps tremendously, but the pain never completely goes away. My primaray doctor (I THINK I've FINALLY found a good one, only had one appt. with her so far) prescribes 800mg of Neurontin 3x a day for the burning that's in both legs. Nothing for the numbness in 1/2 of my left foot, which just come about in the last 2 months and very scarey to me. I hear Dr. Feigenbaum is moving to Texas in April which I'm saddened by because I myself live just a couple of hours from him right now. If this doesn't get done by April, I don't know how I'm going to get to Texas. My heart is with you. I feel so alone through this, heartbroken and VERY angry at some very specific docs who could've told me that I had these cysts. as they're on the MRI from 2009!!! You're NOT alone. There are others going through their own personal hell with these horrible things. Find a good primary physician, that in itself CAN be a challenge, but it's important. Someone who recognizes these Tarlov Cysts and the very painful symptoms that come with them. At least then maybe you can get the pain under control to some degree. I've NEVER had ANY luck with these "pain management clinics." They are a joke and nothing but a moneymaker. In fact, I got a very nasty staph infection in my lower back from one of them. And I suspect, some of the nerve damage could've been caused by them jabbing needles into that space (this was before I knew I had Tarlov Cyst Disease). But I believe walking around for 4 years with these things growing hasn't helped either. Sorry for the book :} Just wanted you to know that you ARE NOT alone, sweetheart. Every person that's going through this is in my thoughts and prayers every day. God Bless and DON'T give up!!

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I have Tarlov cysts, bulging discs, and heamanginomas on my spine with spondylosis and scoliosis......I do understand. Spinal changes are no fun and can be very painful......very sorry....try to go see a spinal specialist to better help diagnose you properly.

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Sophie,

You are not alone. There are so many people here who are diagnosed with Tarlov cysts. The level and type of pain depends on where the cysts are located, but if your cysts are not too big, you can try the things that I am trying. Few weeks ago, I felt really hopeless. But, today my pain level is at 0 level. I also work for living and drive at least 3 hours per day to get to work and back to home.

First of all, know that stress increases any kind of pain. Thus, try relaxing your muscles throughout the day with meditation or simply breathing.

As soon as I wake up, I drink at least 2 to 3 (8 oz.) glasses of water together with fenugreek seeds water. I then walk on treadmill at lower speed for 10 minutes to warm up my muscles. I fast on every Mondays with fruits, raw vegetables, nuts, dates, figs, and low fat milk (NO MEAT). This cleanses my system and I feel very light. My diet in general is more vegetables, grains, fruits, nuts, little of chicken and eggs, but NO BEEF and PORK.

I walk daily for 45 minutes after lunch.

Hope this helps! Let us know how you're feeling if you decide to follow this remedy.

HT

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Thank you so much guys its a relief to know that someone finally understands what I'm going through. I'm a therapy radiographer myself and I had my scans done privately I saw the Tarlov cysts before I had my report through. What frustrated me the most was that they were ignored by the radiologist! even though I presented will all the symptoms of tarlov cysts. I'm finding this extremely difficult as I'm so used to looking after other people in my personal life and work life, its difficult to accept that occasionally I need looking after. My faith is keeping me strong and I believe god will not place a burden on me greater than I can bare.

I'm allergic to most pain killers and can currently only take paracetamol. I would greatly appreciate any other tips people have to offer. At the moment I'm using a TENS machine, aloe vera heat lotion from forever living which is fab. I'v also brought a coccyx wedge enables me to sit for longer periods of time.

The most frustrating thing about this condition is the lack understanding and acknowledgement that they can actually be symptomatic!

Thank you so much for you replies, Iv finally found my life line...

x

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Hi Sophiea, I also live in the Uk which in itself is unfortunate for us because there is no decent specialist of this condition in this country.I became aware of a problem in 2004 but it took 2 years of going round different hospital departments before someone decided to send me for an MRI. I was then seen by a neurosurgeon who informed me that I had a cyst on my lower spine and I could have an operation to remove it if I wished. By this time I was climbing the walls with pain and my life had been turned upsidedown by the limitations to my life. Of course I opted for surgery. It was the worst mistake of my life. He hadnt a clue what he was dealing with and I had yet to learn what a Tarlov cyst was. He performed a sacral laminectomy and fenestration of my cyst . He had gone in and discovered that it was not possible to cut it out because it was intertwined with nerves so" he just cut a piece of bone out of the spine to", as he put it, "allow the cyst to grow" which was not exactly what I wanted. With each passing year my pain becomes more intense and the medication less effective. I would dearly wish to be in a position to afford top go to America to see Dr. Feigenbaum who is the world renowned expert on this condition. I have sent him my MRIS and medical records but I hace a nasty suspicion that my previous surgery may have caused too much damage. My best advice is do NOT allow anyone else to operate on you. Ask your GP to refer you to your nearest pain management clinic.If he refuses then find another GP. Also go to the Tarlov Cyst Foundation site . Read up on the condition. Print off some facts and hand them to your GP and physio. Ignorance is no excuse for how they are treating you.Also there are other sites like yahoo Tarlov cyst survival or Tarlov Talk. You are definately not alone and I fully appreciate what you are going through because I'm going through it too and I have felt such despair but there are others like us and we get such support from sites like this. Regards Patricia.

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Hi Patricia

Thank you for your advice. I'm so sorry to hear what your going through. Its a relief to know there are people who actually understand the pain I go through but at the same time it saddens me that there are people who suffer like I do. When I was first diagnosed I so desperately wanted them to operate as it was a way out of this condition but Iv come to accept that there is no way out , you learn to live with it.

I am currently under pain management and they provide electro acupuncture. This helps a great deal as I have early degenerative changes in my neck, the treatment means that I am pain free for at least 3 months. The treatment works by blocking pain signals to the brain, in a way you may be in pain but your brain won't let your body feel that pain. Iv found that this treatment needs to be combined with other treatments such as seeing a chiropractor as you can over do it and end up damaging your body further. Pain can sometimes be a good thing. For this reason I'm unsure if it will benefit with the cysts as I'm concerned that I will over do it and causing the cysts to fill and me not realising that I need to rest. If this is something that your interested in please message me and I shall pass the details on to you, as far as I know there are currently only 2 clinics in the UK, Birmingham and Newcastle.

x

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HELLO TO ALL THAT SUFFER FROM THIS RARE DISEASE - I HAVE TWO TARLOV CYSTS S1 AND S2 LOCATIONS - LUMBAR BULGING DISCS AS WELL....... DENEGERATIVE DISC DISEASE ALSO (LUMBAR) - HAVE SLIGHT SCOLIOSIS (LEFT SIDE SPINE)...

I HAD A SPINE DECOMPRESSION DONE TO HELP WITH DISC ISSUES - DID NOT KNOW ABOUT THE TARLOV CYSTS AT THE TIME - OLD MRI SHOWED ONE..... I FELT LIKE I WAS 20 YEARS OLD AGAIN AFTER THAT PROCEDURE! MEDICAL INSURANCE WILL NOT PAY FOR IT THOUGH.....

THEN - THREE WEEKS AFTER MY LAST SPINE DECOMPRESSION - I WAS IN AN AUTO ACCIDENT - IT CHANGED MY LIFE! TO LOOK A A PERSON WITH TARLOV CYSTS - THEY LOOK LIKE THEY FEEL FINE - BUT, THE CHRONIC PAIN CAN BE OVERWHELMING! I HAVE GONE TO DOCTOR AFTER DOCTOR - THEY MAKE IT OUT TO BE EMOTIONAL! SOME OF THE MEDS THAT HAD ME ON CAN CAUSE YOU TO BE MORE "EMOTIONAL" TOO..... I AM ONLY TAKING TWO PAIN MEDS A DAY - WORRY ABOUT MY LIVER NOW..........

JUST KEEP TRYING - LIKE I AM DOING - IT IS FRUSTRATING WHEN YOU HAVE LOGICAL - TRUE PAIN - BUT LICENSED DOCTORS REFUSE TO EDUCATE THEMSELVES FURTHER ABOUT TARLOV CYST DISEASE! IT IS HORRIBLE! THEY TAKE AN OATH TO HELP SICK PEOPLE - BUT, SINCE THEY DO NOT KNOW MUCH ABOUT THIS DISEASE - IT IS EASIER TO MAKE IT LOOK LIKE IT IS ALL IN YOUR HEAD!

GOD BLESS YOU AND PLEASE KNOW WE ARE ALL HEAR TO LISTEN AND SUPPORT - THANK GOD FOR THIS SITE! CAH

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Sophia .. (didn't spell that right)
go to Yahoo Groups and for me the warmth and welcoming feel that you get from the collection
of lovely people who have this same diagnosis ...its a blessing....
tarlovcystsurvival...look it up under Yahoo Groups ... you will hear pretty quickly with a welcoming email ... come on .. get over there .... you will not be alone anymore...we're available
24/7 ...I was diagnosed 4/21/11 .... am about to venture out to Kansas City and find out what
Dr. F has to say. THEN I'll tackle the insurance company. Please God.
Hugs,
Jean fr NC

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Sophiea

I see you are from the UK, I have seen others post that I think it is Mr Casey the NS in the UK that know about Tarlov cysts and has helped others with this, maybe look him up. I am in Australia and it is the same we have no one that knows or wants to know about them here either.

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Hi guys

Jean thank you so much for the support group details I have just joined. Maggie I can' thank you enough I shall be calling Dr Casey first thing in the morning.

Thank you to everyone for the advice and support. Iv managed to pick myself up again and will be seeing my GP Monday and will be demanding acknowledgment of my pain and possible treatment options.

x

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Hi everyone

Iv had another MRI today, full spine and brain... I now have multiple TC's on my thoracic spine. Yet still Drs are telling me that these cannot be causing my pain. There is physically nothing wrong with my spine apart for all these TC's. Mentally and emotionally I have given up as I can't keep banging my head against a brick wall. As a health professional my self I am truly disgusted with the way that the pain of a patient is dismissed.

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Sophie ... its unreal huh.

I'm sorry for the amount of pain you have. I am so very blessed.
I did have another MRI last week (Mon) and then Fri had an xray of a
'cystic lesion' on (in) right hip (near ilium - part of the hipbone I learned);
not illeum as in intestine ... so ...they are sending me to a spine surgeon?
(we both know I'm not letting him DO anything ... he can take a look at my
tests tho ... I value that ...and will hear him out ....

Praying you get some results ... for your pain - and someone to WAKE up and
listen.
Hug
Jean
** I must have missed you so far on tarlov cyst survival?

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i am sorry, i have bechet's and marfans so. i can understand although mine are ulcers inside and out. good luck to you and take care! numerous dr's thought it was all in my head until i went to see the countries best bechet's dr. and he was like yep, would be bechet's but, i have hope everyday maybe a cure.

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Finally had surgery with Dr.Feigenbaum this week. I thought I'd be in the hospital longer, but only had to stay 2 nights! From my previous MRIs, we thought we were only dealing with 3 TCs. But when Dr.Feigenbaum actually got in there, he discovered I had SEVEN!! BUT, he treated them all! I must say, the pain from the incision is a bit painful, but that's to be expected when you consider what's been done. Honestly? I could tell a difference the minute I woke up after surgery!! I know they had me on drugs BUT I have yet to feel ANY of the burning down my legs or that "pressure" I've had for so long. He didn't say anything about the TC that showed on my MRI to be invading into my pelvic area. And I was so emotional (happy emotional) about how much better I feel that I simply forgot to even ask him. It will be something for sure that I'll discuss with him at the follow-up in April. A second surgery from the front may be required down the road. And I was made aware of that at my initial consultation last year. But I'll cross that bridge when I get to it, if it's even an issue. Despite incisional pain and some numbness in my butt and privates (again, something I knew would occur), I feel pretty darn good :-) Now comes the recovery and the realization of something that I believe I knew all along. Time after time, through all of this, I asked "Why?!?" I do want to get back into the occupation that I went to school for. That WILL take some time. But going through everything Tarlov Cyst related...my goodness, just getting a diagnosis!! Finding a doctor who will take you seriously! Finding a doctor who will help you with pain control!! It's ALL so messed up. And people continue to suffer. There are people who've not yet begun this nightmarish journey. Something HAS to be done. I don't know where it should start...maybe medical schools teaching CORRECT and TRUTHFUL information? Maybe doctors and these so-called "experts in pain management?" The misinformation HAS to stop. People are and will continue to suffer needlessly because some ignorant doctor doesn't want to or simply WON'T take the time to educate himself about a disease that is VERY real with very horrible symptoms. To me, that is just unacceptable. My last primary said, through his nurse of course because he's a coward, that I needed to go to drug rehab because I needed pain medication...Oh yes, I WILL be paying him a visit and he better get ready for an earful from me. He was completely out of line on that one! I'm going to chill out right now because I don't want to offend anyone with the language I want to use. I'll save it for all the doctors that have dismissed me and attempted to label me something I'm not. I believe they need to be called out on their rediculous actions. Boy, do I have stories I could share!! LOL! But for now I'm want to make a promise to all my fellow Tarlov sufferers...I will continue to pray daily for each and every one of us. For us to have the strength to continue on, no matter what ANYONE says. We know what we're feeling, we KNOW something is going on in our bodies. We feel it everyday! My daughter told me that she wants to be a surgeon. I don't know how much of that has to do with the fact that she has seen firsthand what a very misunderstood disease can do to a person physically, emotionally and otherwise...it doesn't matter, really. I just tell her to NOT go into medicine simply to have the title of "doctor." No. She says she wants to really make a difference. She makes me proud just being the sweet girl that she is :-) Sorry for the book. I just wanted to share...and vent :-) God Bless~

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Nikole,
C O N G R A T U L A T I O N S to you! Hooray ...what a huge blessing and many answers to
prayers!

Shall be praying for an smooth healing transition for you. All aspects.

Heal and THEN make yourself 'heard' and I know that you WILL.

Come see us at tarlov cyst survival and share your story. ENCOURAGE your cysters!
If you are already a member ..sorry ... we grow in numbers weekly. (sadly)

Hugs,
Jean in NC

yahoo group: tarlov cyst survival (many pre op and more post op stories there)

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Hi Maggie

Thank you so much for the suggestion of seeing Dr Cassey. He was wonderful I actually broke down and cried as it was such a relief for someone to actually acknowledge my pain. I am now being referred to other specialists who can assess the damage done but hopefully also a solution

xx

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Sophiea

I am so glad he helped you and you finally got someone who believes in what is causing your pain and is willing to help you, glad to be of help anytime if I can. xxx

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Hi everyone

Thought I would update you guys on whats been happening...

Thank you so much to Maggie who introduced me to Dr Cassey. I saw him in London a few months ago. He reviewed my scans and agreed that the tarlov cysts are causing my pain. There are 2 in particular which are compressing the nerves which run in between them. He was appalled with the way I had been treated up until him.

He has referred me to a wonderful lady, Dr Suzy Elneil. She is a neuro urologist. She believes that the cysts have caused some damage to my bladder and I now have to learn how to catherise myself! She also wants to temporarily stop my periods to help with my pain relief.

I was also referred by Dr Cassey to see another neurosurgeon, he told me that I have cysts at every level from the top of my spine to the bottom and the only way to fix me is to give me a new spine. :(

Its been a very long journey just to have a health professional agree that these cysts are causing my pain. I am very angry at all the specialists that dismissed my pain and other symptoms. I know feel strong enough to seek legal advice for their negligence, not because I want compensation but to ensure that this does not happen to anyone else!

The numbness in my left leg and foot is getting worse and I am currently awaiting nerve conduction tests to determine the severity of the damage caused. I am also waiting to see a neurologist who may be able to explain why I have so many and the cause.

My current treatment is from my chiropractor who continues to manipulate my spine and also needle acupuncture which is helping me get back some of the lost sensation in my left leg and foot. I am also using magnet patches on my bladder pressure points which help with my bladder function. I am also starting on devils claw and tumeric tablets, anything herbal that is an anti inflammatory.

I have also come to terms with the fact that my job within the NHS is not helping the condition due to me standing for very long periods of time and lifting heavy patients.

I feel a little broken right now as there isn't much anyone can do to fix me, but to all those people who are trying I am so very grateful.

x

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