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Tue, Mar 10 3:26pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

@cake

Pain management doctors normally do all the nerve blocks and other injections. I would recommend Advanced Pain Management

Mon, Mar 9 2:58am · Perineural or Tarlov cysts in Spine Health

@anita1940

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!

Sun, Mar 8 2:19pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

@cake
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.

Sun, Mar 8 1:57pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

@cake
I am in Lakewood, WI which is about 1.5 hours straight north of Green Bay. A pain management doctor should be able to help with the PN pain. You may also want to add an integrative pain specialist to your team of providers and ask that they work together. This is what I've done and it has helped tremendously. Good luck to you, take care!

Sun, Mar 8 1:53pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

@bkruppa

I'm sorry to hear about your wife's pain. It is very common for Tarlov cysts symptoms to come & go and for the pain level to go up and down. Dr. Feigenbaum in Dallas, TX told me this. I also have the pudendal nerve pain like your wife. I've been having a bunch of nerve blocks done in the hips, sciatic, pudendal, the muscles that go across your back from hip to hip, etc. The other day I came across http://www.arachnoiditishope.com and am now questioning whether I should even have any more nerve blocks. Since Tarlov cysts and arachnoiditis go hand in hand (I didn't know that) it seems as though the nerve blocks will help momentarily but will most likely make the arachnoiditis worse. Since it's something you will have for the rest of your life and is a progressive disease I think I'm going to choose not to have any more nerve blocks. The site for arachnoiditis was extremely informative and helpful. I urge anyone with Tarlov cysts to do some reading on that site. My husband also found a couple Facebook groups: Tarlov Cyst Society and Arachnoiditis Society for Awareness and Prevention. Hopefully this helps you out. Hoping for a low level pain day for everyone! Take care!

Sun, Mar 8 1:32pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

@stephpez
I went to see Dr. Feigenbaum in Dallas, TX. I am currently fighting with my insurance co. to approve the surgery. There is another in CA and his name is Dr. Shrot. You can find all of their info. and a ton more very helpful info. at http://www.tarlovcystfoundation.com Also, there is a Facebook group called Tarlov Cyst Society where I see quite a few people talk about their experiences with the 2 doctors I just mentioned. Since arachnoiditis goes hand in hand with Tarlov Cysts you will find extremely helpful info at http://www.arachnoiditishope.com and there is a Facebook group called Arachnoiditis Society For Awareness And Prevention. Another thing you can do is go to http://www.frankfeigenbaum.com There is a section on there that tells you step by step what to expect on surgery day and recovery. If there is any other info. I can help you out with please let me know. Take care!

Fri, Feb 28 10:06am · Living with Neuropathy - Welcome to the group in Neuropathy

@catro
I have the same issue but only sometimes at night. I have it several times throughout the day and at times it's fairly constant. My doctor has said that she thinks it may be that my nervous system is overloaded with the worsening of the Tarlov cysts. It's also a symptom of arachnoiditis. I haven't been diagnosed yet but I sure check most of the boxes. There is very interesting reading if anyone wants to check it out at http://www.arachnoiditishope.com Arachnoiditis seems to go hand in hand with Tarlov cysts, injections, nerve blocks, epidurals, spinal cord injuries, trauma, etc. I wish you the best!

Tue, Feb 25 11:29pm · Has anyone been diagnosed with Abdominal Wall Pain in Chronic Pain

@rritam

I was also turned away by Mayo Clinic but it was the neurology dept. I have Tarlov cysts pushing on numerous nerves in the sacral area. I called and asked if there was a provider that treats them. They told me they have done a few of the surgeries in the past but no longer do them. I also asked if any of the neurologists and/or neurosurgeons would be able to recommend what direction I should go or possibly a referral to another provider that has experience with them. There was no answer for me. I'm not badmouthing Mayo Clinic by any means because I did see Dr. Fealy back in 2003 (before I was diagnosed). He was fantastic and showed initiative in figuring out what was going on but I never got to follow up with him. I was very disappointed to find out that he retired.