Hello from Ontario Tarlov Cyst Patient

[sherrijones]

HI,

My name is Sherri. I live in Ontario, Canada and I live with Symptomatic Tarlov Cyst Disease.

I have 3 three perineural cysts in my Cervical spine, and (had) one giant Tarlov Cyst in my Sacral Spine. Thankfully the sacral cyst is gone, but it's only been gone for almost two months and Tarlov Cyst Surgery recovery can go on for up to 2 years. 2 years is when the affected nerve roots, the roots that had been compressed and damaged by the cyst pressure, have achieved the most regeneration as they will ever reach. So it's a total of two years before I can truly gauge how successful the surgery actually was. So far I am thrilled... so far there are already major changes, but my limits and the ups and downs of recovery continue. This is the strangest surgical recovery I have ever experienced, or even heard of!<br><br>I have to admit though, I have never for one second regretted having surgery, and I am even more grateful for the support of AIMIS Spine and how they helped me achieve a goal that my own, Province and Country wouldn't.

It's strange how gifts can come from such strange places!!!
Are there any other Tarlov Patients on this site? Anyone know?

I look forward to talking and learning more.....

Sherri

Founder, writer and developer of Canadian Citizen Daily Battles
Canadian Living: We're good.. but not that good.

MVA July, 11, 2005 (Passenger)

MVA Jan 11, 2010, (Driver)

TARLOV CYST DISEASE SUFFERER

[lurch]

Hi Sherri,

I too have a Tarlov cyst in the sacral spine, however with the other issues I have we have not yet determined if it is symptomatic. Glad to hear you are gaining and that there are some answers for the problem. I may have to speak with you in the future about your procedure and Dr.. Hope you keep feeling better.

[Katie]

Hi Sherri! It is so good to see another Canadian on here, and especially one from Ontario.

they helped me achieve a goal that my own, Province and Country wouldn't.

Like everyone here, I share that sad story, and had to travel to Brazil for help with my ADR & fusion surgery.

I am not familiar with your condition, nor AIMIS Spine. Could you explain a bit more if you don't mind? I wrote a long note to you here yesterday, but just noticed that it didn't make it to 'print' . so I"m just sending along another until a better hour.

Looking forward to chatting more. Take care.

[sherrijones]

That seems to be another thing we all have in common.... multiple spine issues.
When I had my MRI's done last year for the first time, I had to sit and read the reports while sitting in front of the computer to know what each medical word meant. It was like reading another language and I had to translate it all into something I understood. Once I knew what each one meant I found it very odd that no matter who read the MRI report, or the CD itself, everyone, and I mean everyone in the medical field, responded like it was nothing... there was nothing wrong aside from typical aging. Again, I've learned otherwise through experience.

Canada is extremely conservative in their management of spine related issues, and it's unfortunate to see that many other countries have advanced their knowledge and treatment options while Canada keeps telling patients there's nothing wrong, or nothing they can do. We seem to be a country where pain medications, and pharmaceutical companies run the show, and instead of Canadian Surgeons learning how to make things better, treat the core issue, they just keep applying bandages to the wound in the form of addictive meds, and then add anti-depressants to the mix saying we just have to learn how to accept. Get counseling, psychiatric help, take your pills and the rest is up to you. How many times did I hear Dr's basically say, "it's your fault! You're over weight, you've let your physical condition deteriorate and there's nothing I can do, it's all in your hands now. Go to the gym, work through it! Take whatever pain meds you need... but suck it up... it's all up to you!" Funny considering my loss of strength and the weight gain all came from the initial pain that was never handled correctly to start with!

AIMIS Spine never said that. They never treated me like a whiner. While I was in Cyprus I was surrounded by people who took spine care for granted. Many of the people I met had spine surgery of their to address Herniations, Stenosis, Ruptured Discs, and here they were walking around without pain, exercising, swimming, jogging. All of them appeared to be some of the healthiest people I'd met in years! To them Spine Treatment is looked at the same way as we would look at seeing the dentist. In their minds, there's something wrong, so lets fix it. Like you're filling a cavity! Why is it different? It took me three weeks to figure out that it's because they have the access to care, the equipment and the specialists who know how to do it right. They take this care for granted, while I know in Canada it's viewed as impossible...

They and their specialists have worked with me, to teach me, help me learn, so I could help myself and in turn maybe help others. Some things in our backs are normal aging processes wearing down our spine's ability to adsorb the shocks of slips and falls, trauma from accidents,... and the list could go on and on. But as much as age can break us down I have to say, I'm only 41! I've been suffering from all of this pain since I was 35, and it's only increased since then. 35 is not old!!! It's not like I was 70, 80 years old.... I was 35 and healthy. But still I was in major pain.... and no one in Canada cared.... not even my own physician.... now I have new physician, and as much as she may care it doesn't change the system itself. She is being taught the same things as all of the Dr's in the past. In Medical School Professors are in many cases looked at like gods. They are rarely questioned. If the medical school tells you there's nothing that can be done, or that Tarlov Cysts do not cause pain then guess what? These Dr's come out into the field passing along the misinformation that their Instructors never questioned.... and it all remains unquestioned until someone teaches them otherwise..

I hope that when the time comes that you need Tarlov Cyst Treatment, if you need it, that it will be accessible to you than it was too me. Thanks to my Lawyer, Dr. Feigenbaum and AIMIS Spine, I got treatment, which is something most others only WISH they could access. And it isn't fair.... it's not fair at all!

I'm recovering from the sacral cyst.... and I'm doing really well. thank god... now we just have to fix the other issues that are holding me back. But I won't give up even if it means I have to keep going back to AIMIS Spine in Cyprus to get it fixed. Canada may not be able to do it, but other places, and specialists can...

Lurch? What's your current status? What is that you're dealing with outside the cyst? What is causing your problems? I'd love to know more.... talk soon, and thanks for the "hi"....
Sherri

Hi Sherri,

I too have a Tarlov cyst in the sacral spine, however with the other issues I have we have not yet determined if it is symptomatic. Glad to hear you are gaining and that there are some answers for the problem. I may have to speak with you in the future about your procedure and Dr.. Hope you keep feeling better.

[sherrijones]

life is good...

Hi Katie,
I'm sorry to hear that you too have been let down by your home Province. But I am curious about is the trip to Brazil and how you managed to find your surgeon?
I had researched alot before I found Dr. Feigenbaum and the many other Surgeons treating Tarlov Cysts.

I joined some of the Tarlov Cyts, international support groups to find out half of the things I now feel grateful to know. I love that I was able to find that support, but at the same time I was very disappointed to learn when I began my search there was nothing, and I mean NOTHING about Tarlov Cysts from a Canadian perspective. That's actually what made me start my blog. I was so lost when I was first diagnosed and I wanted to do my little bit to make sure no one was stuck in that same position.

I would however love to expand the blog into stories about other Spine surgeries, and other Canadian limitations like you've experienced.

There are so many people out there who experience the same things we did, and I want to add to the blog to help prevent that.

My blog began as a Tarlov Blog,but I've been learning how it needs to be expanded for all Canadian Spine Patients. So if you'd like to share your story, and if you know of others who may be willing to share their stories, I would love to share them with my readers. My blog is pretty busy as is, and I want this information added to the conversation.

How did you manage to get the surgeon to accept and work with your metals allergy? That sounds like it might have made things even harder when searching for treatment. I am happy that you are feeling well and life is good...

Hope to talk soon!
Sherri

[Katie]

Hi Sherri,

I think we were trying to write at the same time I just went to your blog and read a bit of it; good stuff there. I have often thought of hitting the media myself to inform others of both this site and their options and lack thereof here in Canada.

I did find a couple of decent spine surgeons in other areas of Canada, but in the end they couldn't help me for various reasons. But at least they were willing to try, more than I can say about Ontario. I fought full time for almost five years to get some help either here or out of country, without success of course. And it took a long time to find the answers. A great deal of help came from this very forum...one other patient from Australia had gone to see Dr. Pimenta, with high recommendations. I also found out about sending my blood work off to Chicago for metal allergy testing from another member here as well. This site is priceless.

How did you manage to get the surgeon to accept and work with your metals allergy? That sounds like it might have made things even harder when searching for treatment.

It certainly was a panic to find something/someone who could treat me. I already had surgery booked in Quebec when I got the allergy results and had to cancel....there weren't any devices available in Canada, of course.

The allergies were not an issue with Dr. P. He only took a short time to find the right metal free device and offer me surgery a couple of months before I was ready to even go! I didn't expect to have a date just a few weeks after him seeing my images. Imagine that....and it took a year to get my first appointment with a spine surgeon here, only to be told that they don't operate just for pain, and to go home and take more drugs....as you already know

I went through the Access to Information Board, the Gov't Privacy Commission to find out just how many ADRs had been done here (~100), after being told by OHIP (the provincial government medical board) that NONE were ever done. But you know the story already....I would love to share it and save others the pain and misery.

I am so pleased that you were able to find the right doctor. It is probably a dead-end question, but did you ever get the Province to help? Even a little bit?

I'd love to compare war stories in depth a bit later. Anytime after the first of October would be good, time wise for me.

[lurch]

Lurch? What's your current status? What is that you're dealing with outside the cyst? What is causing your problems? I'd love to know more.... talk soon, and thanks for the "hi"....
Sherri

I just want to say again thanks for joining the site. You seem to be a very caring person and knowledgable in an area that is, as you said, commonly overlooked or passed off by Drs..

As for issues, my signature is an outline and I will try to be brief about the rest. I had a fusion L3/4 2009, but it is now really looking like there are many more problems that should have been addressed at that time. I was told nothing else was wrong with my back, specifically nothing wrong in lumbar or sacral below fusion (other Drs. now say that L4-S2 clearly needed addressing based on 2009 images and that I have an L6 or that S1 is somewhat lumbarized), that the Tarlov cyst was something everyone had and could not be causing pain, that the grinding in my thorasic spine was normal and there was no way I had any damage there due to thorasic spines general stability, and that the shoulder, arm and neck pain/numbness/tingling was nothing to worry about. It turns out that so far every aspect is causing symptoms, with the possible exception of the cyst. I do not have a clear idea of its size and location yet.

Aside from that, I have had numerous other surgeries including 8 herinas (3 operations), L ankle broken requiring screws, L knee x 4 (only option left now is new one), R shoulder x 2. I have a significant leg length diparity (over an inch), which I feel has contributed to my back problems and I have discovered is a predictive factor for the knee problems I have had (R knee is now awaiting diagnosis).

On the up side of things, I am scheduled for an evaluation of my entire spine 9/8, by the local "spine team". I am also working on getting a plan from Dr. Bertagnoli. I do not want end up fused from my butt to my ears!!!! That is likely where I will end up if they fuse 4 in my neck, 1-4 thorasic and 3 more in lumbar..... leading rapidly to adj. level problems. I am really stuck on funding the out of county repair which I firmly believe will be my best most logical choice.

Anyway, alot of information coming my way this month and decisions to make. I want to thank you for giving me an opportunity to vent. Will try to keep you posted.

Larry