Anyone treated Tarlov Cysts naturally?

[Wewillgetbetter]

I have tried Serrapeptase to no avail. Any tips? I would appreciate any reccomendations for shrinking cysts in general. I have quite a few.

[Godsgurl]

Want to follow this.Trying to avoid TC surgery and have a huge cyst at S2 about 3 cm. Experiencing severe rectal pain and pressure plus sacral hypersensivity.

[Wewillgetbetter in reply to Godsgurl]

I understand. It’s a very difficult illness. So far I am taking Vitamin C (slow release) and I am experiencing changes in my body. A lot of strange changes, but still unable to walk properly or sit down. I actually feel like my head is going to burst sometimes; does anyone get brain/head vibrations with their cysts?

[Wewillgetbetter in reply to Wewillgetbetter]

I most certainly believe that this illness just like all other illnesses can be treated in a non-surgical fashion.

[Godsgurl in reply to Wewillgetbetter]

Depends on how debilitated you are. I've been mostly in bed for 7 months. Only can lay on side with pillow between legs. Cannot sit at all. Trying to take a half hour walk a day but some days impossible. Taking Dilaudid for pain. I would rather try a stimulator than surgery.

[Wirral47 in reply to Wewillgetbetter]

HI there,

I have four cysts at S2 which are giving me agonizing pain but I haven't had anything wrong with my head. I do go off balance and my walking is getting less and less but I make myself do as much as I can.

[Wirral47 in reply to Godsgurl]

Hi Godsgurl, I@ve been suffering from Tarlov cyst pain for over four years. Mine are four on S2, exactly where I sit down and the pain is getting unbearable. I have seen the whole range of surgeons for advice but know Frank Feigenbaum in Texas or Cyprus is the only one to help. I've had a phone consultation with him and he could operate but I am now on blood thinners and everything has changed. I haven't had any useful help from anyone apart from lovely well-wishers on this site. If you want to keep in touch, I would be happy to hear from you. I live on the Wirral.

[Godsgurl in reply to Wirral47]

Thanks for writing. Keep pressing on as I have 5 cysts in sacrum. I am scheduled for TC surgery with Dr. F on November 20th in Dallas. Its been hard to choose between the surgeons.

[Wirral47 in reply to Godsgurl]

Thanks for replying so quickly. I would love to know how everything goes, as was scheduled for an op in CYprus but was n't well enough to travel and now i don't think he will operate. Good luck with everything! barbara

[Wirral47 in reply to Godsgurl]

Can you let me know how the operation went with Dr F and what the situation is in Texas? I am in massive pain and am still considering the op but I am now on blood thinners, which makes it difficult.

[Godsgurl in reply to Wirral47]

Hi Barbara, I am 8 weeks post-op and starting to see improvement. I spent a month in Dallas after the surgery staying in a nursing facility and then a hotel before I took a 48 hour Amtrak trip to L.A. in a sleeper car. Then took a Lyft home to San Diego. I was driven to Dallas by a caregiver lying in the back seat of a SUV. It took 3 days and we stayed at night in hotels. I hear you say you aren't well enough to travel and I felt exactly the same way, but at 67, with God's help, I found a way to make this happen on my own without a loved one to come with me. You can do it too!!

Immediately after the surgery, I was in tremendous pain plus lots of leg pain and aching which I never had before. The leg cramping is from the position they put you in during surgery and also your nerves have been messed with and handled during surgery. I was kept fairly comfortable taking Dilaudid and muscle relaxers. I am still taking opioids but see some reduction in the last couple weeks. Each day is totally different.

My operative report revealed how badly I needed the surgery. There were 6 cysts, one of which was conjoined on left S2 & S3 nerve roots. My sacral bone was translucent and the cysts had completely eroded through in some areas. Major nerve compression that only could be dealt with surgically. Recovery is no easy process after this surgery, more like a roller coaster, and it takes 1-3 years for the nerves to recover and regenerate. You can end up with some permanent nerve damage from the cysts. But the one thing you can be confident in is that you have stopped the progression of the disease by having surgery. Everyone who has the surgery reacts differently so you cannot judge your reaction from someone else.

I telecommute for a Christian TV network. It was a total miracle I made all the arrangements once I got home plus be present at our exhibit booth for 4 days last week for a large correctional tradeshow at the San Diego Convention Center with the help of a friend we paid to assist me. I could have NEVER pulled that off before surgery.

One thing is for certain. When you overdo it on any level, you pay for days and even weeks afterwards. But I can tell I am getting better and no longer depressed like I was. My expectations are realistic and understand pain is part of the process to heal.. It will probably take a long time but at least I am moving in the right direction now.

I have home health come and give me both Toradol and methylated B injections 3 times a week. Toradol is a very powerful anti inflammatory to reduce neuroinflammation. Highly recommend it. They gave it to me in the hospital and nursing home too. I am going to learn how to do the injections myself as an ongoing therapy.

Dr. Feigenbaum is an outstanding surgeon and his nursing staff are very professional and knowledgeable. It sounds like your quality of life is very poor like mine was. I do wish I had moved ahead with the surgery sooner but I had to exhaust my resources before making that scary decision. I recommend you join the Tarlov Cyst Support for Cysters and Mysters group on Facebook to get valuable information and support you need to make your decision before and after surgery. God bless you and feel free to ask me questions.

Amy

[RayB]

Look up Arnold Ehret,, you can down load his books for free!

[Wirral47 in reply to RayB]

thank you for the information Ray. I will certainly follow this up as my pain is off the scale. Barbara

[RayB in reply to Wirral47]

Barbra,, if you look on utube,, it will give you a good idea,, you will find many either following on from Ehret or doing it.

Some will recomend herbs as very benificial but I think diet is key,, even so if you choose to egnore the herbs as being necessary the information the provide will give a good grounding in what is required,,it's really not that difficult once you commit to doing it and your not hungery. It is only when you start eating stodge that you start craving other foods.

It took me about 6 mths to get my urine filtering properly and that's quite and amazing thing to see once it starts happening,, sometimes an inch of heavy sediment in mine,,,, it stops and starts but my filtering has become more regular which pleases me no end.

Just keep looking and listening the philosiphy is simple once you get a propper handle on the concept.,,, the lymphatic system becomes clogged due to an acid forming diet.

Best Wishes, Ray

[Hidden in reply to Wirral47]

Hi Barbara

Just reading your post.

I have similar problem to you. Live in Southport. Have you had any luck with easing your symptoms please?

K

[Wirral47 in reply to Hidden]

DearK,

Sorry to say there is absolutely nothing that will help because, as soon as I sit down or put any weight on my bottom, the pain is excruciating. The doctor gave me pregabelin and gabapentin, both maximum dosage 300x2, which are for nerve pain but they just make me go off balance or fall asleep. There is amitriptaline but I have glaucoma in one eye and it sends pressures up, which i can't risk. I have spent a small fortune on special cushions and take one with me when I know I am going to be sitting on a hard seat. I'm sick to death of being told by top specialists that they are not causing me pain, when I'm doubled up! I was offered sixteen days of Pain Management at Aintree Pain clinic but turned it down as it wasn't offering anything worthwhile---just group activities, some physio and counselling to forget pain!! Just going there in a taxi from the Wirral for an interview nearly crippled me but they didn't seem to be listening.

I did start plans to go to Cyprus for the operation a year ago---sent my MRis, spoke to Debbie, Dr Feigenbaum's nurse and Dr F himself rang me and explained matters. Then in May, i ended up with a clot in a lung and two in a leg and was put on blood thinners for life so i don't think he would operate now. The cost of the op n , including hotel and friend was about 39 thousand. As the euro is down now, I think it would be more.

Sorry this is all gloom and doom but I've been battling the NHS for over four years and nobody will listen------as they don't know much about Tarlovs. I really feel for you if you have pain like sitting on broken glass and nothing relieves it. Please feel free to ask me anything and keep in touch,if you want. I would really like that'

B

[Hidden in reply to Wirral47]

Thank you so much for replying. I'm really truly sorry to hear your story.

I thought mine was pudendal nerve to start with but MRI showed Tarlov Cysts at S1 and S2. I'm positive they are causing my symptoms but Aintree said they are no cause for concern.

I have an appointment on Thursday with Dr Greenslade in Bristol.

Only a month in and I am already losing hope. I can't live like this!

Yes, please, please keep in touch. We are near one another so hopefully we stand some chance of supporting one another.

Best wishes from Korin

[Wirral47 in reply to Hidden]

Thanks so much for replying---I see you have had the Aintree experience too. I was interviewed three times there---one top specialist rudely told me to get it out of my mind as they weren't causing any trouble---while the tears were rolling down my face after sitting for more than half an hour. What is the doctor in Bristol going to do? If it is inject the pirriformis through the vagina don't do it---I think that's how my cysts started as I had that done at s2 at Wythenshawe Pain clinic. I had two injections, which just caused pain so I didn't go for the third. The only Tarlov Cyst man I know of in Britain is Adrian Casey, in London. I've read about people waiting for appointments with him but nobody who has had an operation.

Let me know how you get on,if this is a new doctor who will give us hope. I live at Upton on the Wirral and it's nice to know I'm no longer alone in trying to get help.

Best wishes,

Barbara

[Wirral47 in reply to Hidden]

Dear K,

I just found DR Greenslade and he does exactly the same as Dr Winston de Mello at Wythenshawe Pain Clinic, which I was sent to by a doctor at Spire, wirral. As I said, he injects through the vagina for pain relief but it didn't help me. I wouldn't have it again. I don't think a simple epidural for pain would be of any use with these cysts. I didn't have to pay at Wythenshawe. Let me know how you get on. Dr De Mello is the expert in pudendal nerve pain but it wasn't that in the end,although he was lovely and caring.

[Hidden in reply to Wirral47]

Thank you.

Some seem to have bad experience with Dr De Mello. Read something on here. Glad yours was better experience but sorry it didn't work.

I chose Dr Greenslade as I have Impression he works as part of a team. I'm going to see what he says.i have coped with vaginal and utethral issues for 30 years. Gave up on medical profession. The new symptoms are of rectum and I cannot cope with them.

I considered going to see Dr Possover in Switzerland but reas last night he has some bad reviews.

I will let you know how it goes with Dr Greenslade. A heartfelt thank you to you for all your information.

Hoping today is a better day. My prayers are with you.

Korin

[Wirral47 in reply to Hidden]

Thank Korin. Hope all goes well in Bristol. My four cysts, so far are on the nerves of S2, in the coccyx and it's agony to sit down, I also have discs out in my back so my legs are numb to the knees. I just try to get on with life b=ut it isn't easy. I think Dr Feigenbaum is the only solution. Have you read Godsgurl on this site? She is an American with six cysts who e]was operated on in November in Texas. She seems to be doing well but was in hospital and a hotel for a month after the op. If I went to Cyprus, I couldn't afford more than the given paid time. Have all the CYprus info if you want it. I couldn't do the technical disc transfer so they sent me a postal address.

Regards,

Barbara

[Hidden in reply to Wirral47]

Hello Barbara

Yes, that would be very helpful please. The more information the better.

Thank you too for information on other contributors. I will have a look.

I notice that you have tried serrspetase. I'm getting a little relief from traditional Chinese acupuncture in Birkdale, Southport. Birkdale Acupuncture Clinic. Have had acupuncture for many years but for migraine and it's been very successful for that and it's early days but helping a bit with pain and numbness now. I'm also taking MSM - a natural anti inflammatory. Have to take for longer to see if any difference. MSM with Chondroitin and Glucosamine combined might be a possibility for your back if nothing else.

I just wanted to share in case might be of help to you.

God bless you Barbara.

Will be in touch.

Korin

[Wirral47 in reply to Hidden]

Thanks Korin It wasn't me taking serspetase---I don't even know what it is! Will try th e MSm combine but have to check everything out with blood thinners, which is a pain. Will put all the other info together for you. Good luck on Thursday!

Barbara

[Hidden in reply to Wirral47]

Yes, of course. I was forgetting about the blood thinners. Another thing to cope with. If it helps, Carol at Nature's Remedies in Southport was a nurse and could give you some idea if ok but I know you'll need to check it out more formally.

Thank you for good wishes my friend .

Korin

[Hidden in reply to Wirral47]

Hello Barbara

Just wondering how you are doing?

My appointment with Dr Greenslade was very disappointing. He prescribed lots of pain meds and pain clinic.

I am seeing spinal neurosurgeon on 24th for opinion re Pudendal Nerve problems and Tarlov Cysts.

Please keep in touch

Korin

[Wirral47 in reply to Hidden]

Dear Korin,

You must be disappointed that Bristol didn't help. I have been trying to get back to you but couldn't find you on the site. Where did you find the new surgeon? I'm in the most awful pain but I think this weather isn't helping my arthritis and adding to the pain. If you s ee postings from Spicer 21 she is in contact with me and has Tarlovs too. Let me know how you get on at the next appointment. There must be someone beside America, Cyprus and Denmark who can help. The London surgeon has some adverse comments and Denmark isn't insured for non-Danish nationals if anything goes wrong. I'm thinking of you and hope you strike lucky. Did you read the posting from Godsgurl? She is American , was operated on in Texas in November and is slowly recovering but she was in hospital and a hotel for five weeks after, if I remember. That would make it very expensive for me, on top of the nearly 40 thousand pounds quoted for the basic week. Anyway, let me know what happens---will be thinking of you!

Barbara

[Hidden in reply to Wirral47]

Hi Barbara

Great to be in touch. Thank you.

The man I'm seeing is really just a stab in the dark. He's a spinal neurosurgeon called Professor Andrew King. I phoned his secretary and she said he does operate on Tarlov Cysts. My appointment is 24th February. Might be useful. Might not. But worth a go.

Yes I did read those posts and also more on the famous Dr F. Amazing stuff.

Will keep you posted.

God bless and heal you.

Korin x

[Wirral47 in reply to Hidden]

Dear Korin,

So pleased to hear you have found a new person and let me know how it goes. My only worry is there are many surgeons who operate on tarlovs but they fill up again within the hour. Dr Feigenbaum has his own technique. I sincerely hope this man is able to help. I saw his picture on line and he looks really nice. Are you going to Cheadle or Salford?

Barbara

[Wirral47 in reply to Wirral47]

How did you get on with the new specialist ?

[paine321 in reply to Hidden]

Hi Korin

I'm a male and i suffer from PNE

I realise how painful must be your condition in my case I have been through very difficult episodes during my experience I'm in my second year since my accident.

I've lately been searching the internet for some answers to my pain and couple of months ago I came across an osteopath from Spain that has been working on the PNE for quite awhile and he has had a number of successful cases.

He has just published a book "sindrome de atrapamiento del nervio pudendo" (pudendal nerve entrapment syndrome PNES).

Which is a book explaining and assessing the PNE from different aspects involved in this condition.

His name is José Enrique García González. He is from Madrid.

He is an osteopath (osteópata)

If you want to have a go on osteopathy it might help you.

Anything is better but an excruciating pain god knows what I'm talking about.

The best of luck for you and hoping this information will be helpful.

[Hidden in reply to paine321]

Hello

Thank you very much for your kind message.

I am sorry to hear of your accident and suffering. I pray that you find some answers soon.

PNE is particularly difficult for males I think especially as it seems to fall under gynaecology in the UK.

I will indeed look up this osteopath and the book.

Many thanks again.

Best wishes from Korin

[paine321 in reply to Hidden]

Hi Korin

About the book do not expect any English because is in Spanish .

Google translator can be you best friend and can do the job.

Regards and good luck.

Paine321.

[paine321 in reply to paine321]

Hi korin

Let me know how it goes with book.

That book is unique of its kind from the osteopathic point of view,i think in this blog not much reference has been made to osteopathy. It might unfold a different avenue .

Paine321.