I thought Dr. Tennant retired?? Do they charge to do the phone consult after reviewing your MRI?
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Thank you, I sincerely appreciate that. I will fight as long as I need to. I do understand your thoughts about "where you don't want to go". I think everyone in a predicament like this has those thoughts. I will exhaust all options to avoid going there.
There are quite a few people on the Facebcook group Tarlov Cyst Society that share their surgery experiences. I was even more afraid after reading what other people said but there were plenty of people with positive experiences as well. What you need to keep in mind is that everyone is "wired" differently so the extent of the success of the surgery is individualized. No two outcomes will be the same. There are various factors to consider as well such as how long you have had symptoms and how extensive your nerve damage is prior to surgery. Also whether you do your post surgery exercises like you're supposed to. These are just a couple of the factors. Just like with any surgery that involves the spine and nerves, the outcome varies. I don't think it's fair for those that had negative experiences to blame the surgeon because there is no guarantee and this is talked about extensively prior to surgery.I went to see Dr. Feigenbaum and I asked which technique is the best, titanium or mesh. He said the decision on which to use depends on the anatomy of the cysts, locations, etc. For me, my decision is based on my own opinion of risk vs reward. I am currently basically bedridden because I can't stand, walk, or sit for more than a few minutes and I can't sit on my right butt cheek at all. I'm stuck just laying down 95% of the time. I have numerous other symptoms as well. I can't imagine things getting worse for me so I am choosing surgery but have been fighting with my insurance co. to approve it. You just need to do your own assessment and weigh it all out. Don't let someone else's negative experience interfere with your decision. I hope this helps you a little bit. Take care!
I apologize for the mistake with the link to 'Eliminate Nerve Pain Naturally'. Here is the correct one…
I'm sorry to hear that you have this horrible condition and haven't been able to find any relief. I urge you to try an integrative pain specialist because they apply both rx medications and natural therapies. Maybe call a handful of offices and explain your situation and ask if they treat this. Make a list of questions to ask ahead of time and don't worry about having too many. I've learned that wasting your money jumping from place to place just isn't worth it, not to mention all the bills adding up. My integrative pain specialist has agreed to work with my pain management doctor, PT, and PCP. I hope the information below helps you and anyone else that checks it out.
Dr. Tennant – http://www.arachnoiditishope.com Under 'Medical Care Guides' you will find the medical guide for care and self-help guide. I urge anyone that has neuropathy, Tarlov cysts, arachnoiditis, and any other nerve pain disorders to do some general reading on this site. All nerve realated diseases/conditions have similar symptoms and some of these treatments may help you. After I started reading I could't stop. I think I read everything on the site. One important thing they recommend is to print some of the guides and other info. out and bring it to your doctors for consideration. maybe if they are willing to take a look they will be open to other treatments.
Eliminate Nerve Pain Naturally:
Alpha Lipolic Acid 300mg 2x per day
Acetyl-L-Carnitine 2000 mg per day
Inosistol 500-1000 mg per day
Vitamin B6 50-100 mg per day
Vitamin B12 500-5000 mcg per day
Take care and let us know if you find the info. informative and if you try any of the treatments.
Anita, I'm so sorry to hear that you haven't seen any improvement yet and are still suffering. You know, recovery is going to be different for all of us. There are numerous factors that affect the outcome of surgery. How long did you have the symptoms prior to surgery? How badly the cysts are compressing the nerves, possibly where they are located, etc. As soon as my insurance co. gives in I am going to have surgery with Dr. Feigenbaum in Dallas, TX. I'm pretty much bedridden with all these symptoms. I've been fighting them via the grievance and appeals process. May I ask who your surgeon is? I would think they should have given you post-op instructions and talked to you about the recovery process. Aside from reading about other people's experiences, I have found the info. on Dr. Feigenbaum's website to be most helpful. https://www.frankfeigenbaum.com/post-op-information/tarlovmeningeal-cyst-post-operative-instructions Unfortunately, recovery can take up to 2 years and sometimes more. This is because nerves heal and regenerate very slowly. As with any back/nerve surgery there is no way to guarantee a great recovery. You will probably never be 100% again but there should be some improvement. It seems like there are many more positive outcomes than not. Also, arachnoiditis goes hand in hand with Tarlov cysts. I found extremely valuable information at http://www.arachnoiditishope.com I urge anyone with Tarlov cysts to go to that site and do some reading. Please note that I am not a medical professional and my suggestions come purely from my experience and opinion. I wish for your recovery to start going a bit faster for you. If there are any other questions you have don't hesitate to ask. There are many members on here that have excellent advice for you. Take care!
Your pain sounds awfully familiar. Do you have a copy of all your MRIs, CT scans, etc.? If so, take a look to see if they mention anything about Tarlov cysts. If you do, chances are that when you mention it to your doctors they will tell you they don't cause any symptoms. Actually they do and if you have them you will need to seek a doctor that is willing to acknowledge the cysts, learn more about them, and work with you. Just an idea for you.