MAYO CLINIC VISIT FOR TARLOV

I just returned from 9 days in Rochester, Minnesota at the Mayo Clinic. I had my sacrum re-built and 7 LARGE (size of potatoe) operated on in Nov 2011 by Dr F. Since then the cysts have spread to my lumbar and thoracic spine and my health has deteriorated rapidly.
The dr did not say what i WANTED to hear but did say what i NEEDED to hear...basically said that at this time they have no surgical treatment to offer me. They recommended the nerve stimulator implant. He thinks that a lot of pain is coming from scar tissue and nerve injury and operating on the area would only cause more scar tissue to form. He drained 20cc of spinal fluid out of my spine to see if that would relieve some of the pressure ... I was able to EMPTY my bladder for the 1st time since I got sick. He was/is considering doing a shunt but it is VERY experimental and would be a last case thing to consider. He said "I am chasing a magic bullet that does not exist" He does not believe that any of my health issues are connected or can be linked together to one disease. I also DO have a rare form of spinal bifida what I was born with but he does not think that was the cause of the Tarlov Cyst Disease. He said I really need to go home to my children and come to term with the fact that there is no cure for the disease and live the best life I can

He will look at all of my future MRIs and CT Scans to see if at any point he thinks he can help me. Even gave me his personal email add to contact him even when I'm just having a bad day. He also recommended that I do traction, massage therapy, acupuncture...whatever reduces the pain.
Being that I am only 38 yrs old and the mother of 4 children this was a very hard pill to swallow. My records were reviewed by the board and also the Presindent of the Neurosurgery Dept so i COMPLETELY trust there is no "magic bullet" to fix me which takes alot of stress off of me to continuously consume my life with getting answers. I am trying very hard to accept this bc I have such a strong fear of the unknown. I like my life planned out..and not knowing if I will end up in a wheelchair does not allow me to plan out my future. There were so many things that I wanted to do w my children like white water rafting that I now know I can't scratch off my bucket list but I will have to put my faith in God although I am struggling to have a relationship w him (God) right now bc of not only my health but my pending divorce bc my husband believes that I am using my disease as an excuse to be lazy and not take care of my young twins. But I know that I can not get through all this without believing that everything happens for a reason.

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I truly believe your very last statement. There are no coincidences, things do happen for a reason. I sure hope your husband seeks counseling to understand what you are going through. It's important that he not blame you. There's nobody to blame but it's our nature to want to. Even if he's not wanting to be in your life, he's still the father and plays an important role along side you as a parent. Sometimes men are quite selfish in a relationship, they are hardwired to fix things but when they can't they fall apart and tend to point fingers.

One thing that will help is if you live for the day, don't take too much time looking into and planning the future. We aren't guaranteed tomorrow. If you want to make plans that your children have money to go to college, that sort of thing, that's wise. It's just so easy to sit and worry about what we may not be able to do while we could be actually doing something now.

We hope to be able as an older person to not be dependent on others, then we find ourselves in a disability far too young to accept that we may be dependent on someone else. Thankfully, there are many ways to keep our independence. Devices, home health care and our faith that God will never leave nor forsake us.

You know, most animals live "in the now", guided by instinct, they survive. Our instinct often is to place so much faith in the people around us that we fail to put our faith in God. We all have times where we falter. I can tell you will gain much strength through your faith and pass it along to your children. That's a wonderful gift of example.

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Have you considered a second opinion with another doctor?

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Hi

I have heard that the Mayo don't have any experience with Tarlov so I agree you should get a second opinion. I would try Dr Long who has retired but still does consults, he will usually give you a phone consult if you send in your MRI's and other particulars. I would ring his office and see what they have to say as there are not many doctors who know much about our condition. I am surprised that Dr F didn't help you further.

Good luck hope you can get some help.

Margaret

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Dr. Fraser Henderson is listed as one of the doctors in the country/world who treats Tarlov cysts. If you go to the Tarlov cyst foundation website and look at "find doctor", you will see his contact information. Look at his curriculum vitae. My surgery was for both a tethered spinal cord and tarlov cysts which turned out to be a more complicated meningocele... sure was glad I was in his hands.

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I am so sorry to hear this. Did you contact Dr. F at all? What symptoms did you have? I would definately pursue a 2nd opinion.

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have you checked w/ dr. schrot in sacramento i have read about him and he does some of the "impossible" surgeries

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Angie,
I don't want to put doubt in your mind, but I don't believe Mayo. I went there with an excruciating tarlov cyst at T9 with rib swelling, atelectasis from not being able to take a breath and couldn't eat more than a few bites or drink a glass of water. I had an MRI and they didn't even tell me about it. I found out 3 years and a couple hundred thousand dollars in tests and procedures as well as all the stuff they put me through. They refused even to let me see a neurosurgeon. I had surgery with dr F in December and although its not perfect, I can at least live my life, exercise, wear a bra, button my pants eat, drink, breathe. I don't know how extensive your cysts are but EVERY neurosurgeon says that. They don't know. Please don't give up just yet. I had a surgeon in Chicago, well known, tell me they aren't symptomatic and no dr in the world would touch it. He was 100% wrong and I am 80% better. No, there is no magic bullet. But is there some way to reduce the csf pressure? Don't give up! Mayo is not the be all end all and even the top neurosurgeons say they can't help you. It's true, they can't. But somebody can! Praying for you! God is bigger!

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Angie,

I had surgery with Dr. Fiegenbaum in July 2012 and now I have two more cyst 3.5 and 2.5cm each I have an appointment with him in August to see what he has to say. I was wondering if I contacted him about the return of your cyst?? The way he explains he is going to wrap and stitch them they can never refill. I had three that he repaired but when I read my post operative report he only stitched and wrapped one of the three so what I want to know now is the two I have are they the two he did not wrap and stitch did they fill back up even larger. I am trying to get a radiologist look at the before and after MRI's and the present day one. I would love to know what dr f had to say to you.

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