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Tue, Aug 6 3:31pm · Pain in the butt - Can't sit down in Chronic Pain

@ecalderman

Your situation sounds very much like mine. You probably don't have the same thing but it would be worth asking your doctor about. I can't sit on my right butt cheek and it's quickly spreading into my left side. It comes up from the bottom of both butt cheeks. I was told that it's part of the pudendal (sp?) nerve. Is that what you're experiencing? Have you ever had a pudendal nerve block? My diagnosis is Tarlov cysts (perinerual cysts). They come out of the spinal cord and are innervated so they cannot be removed. There is a surgery available for them though. They drain the CSF out of them and fill them with another substance. There are only a few doctors in the U.S. that specialize in these.

Tarlov cysts are considered an incidental finding on MRIs, CTs, etc. The radiologist may or may not even document them. It has taken me 16 years to find a doctor that questioned what was seen on my MRI. The cysts were present back in 2003 after my accident. I've found that most doctors won't even acknowledge them and say they don't cause any issues. When they grow bigger they DO cause issues. Most times they are in the sacral area and push on the nerves at the end of the spinal cord and cause cauda equina syndrome.Do you have any of the cauda equina symptoms? It would be a really good idea to request all of your images on discs and the reports that go with them. From now on when you go in for any kind of imaging ask for a disk and that a copy of the report be mailed to you. They will give you a disc before you leave. Read through all of your reports and ask about the things you aren't familiar with. Also, I've found that talking to the tech. that asks you all the questions before your scan helps. Tell them you want all incidental findings documented because they haven't been able to pinpoint exactly what is causing your issue. That's what I had to do anyway.

I hope you find out what the problem is. I absolutely understand the agony that comes with not being able to sit! Best of luck to you:)

Thu, Jul 18 4:16pm · Living with Neuropathy - Welcome to the group in Neuropathy

@feeties
So happy for you that you found something that helps with the pain! May I ask what brand of CBD you're taking. Does it contain THC? I'm from Wisconsin and THC is still illegal. There are so many different brands I've looked at online. I just get confused and frustrated and give up. I don't know which brands are the best.

Fri, Jun 14 8:33pm · Living with Neuropathy - Welcome to the group in Neuropathy

@cocodab

You are not alone! There are many helpful people on here so you're in the right place! Sometimes it just feels good to chat with someone that is going through the same things you are. Here is my advice to you.

Your team of doctors will probably need to include a PCP that supports your issues and strives to find treatment for you, a pain management doctor, a neurologist, and a physical therapist. Integrative/holistic providers will do a world of wonders for you as well. You may also want to consider a mental health provider if your symptoms are causing depression or anxiety. Find a good physical therapist that is up to date on new procedures, and continues to take classes to learn more. The right one will help with the neuropathy & muscle pain. Also, maybe it's just time to look for a new doctor. Research them online and read their reviews. In my area I've found that the good ones are booked out a couple months but probably worth the wait. I'm currently looking for a neurologist. Ask all questions you have and don't settle for a doctor that ignores your concerns! You are your own best advocate! The more research you do, the more questions you ask, the more answers you'll get. Hang in there & take care!

Fri, Jun 14 8:11pm · Living with Neuropathy - Welcome to the group in Neuropathy

@mictim

I absolutely agree with your view on natural vs synthetic and supporting big pharma. There are several shows on Netflix that everyone in the world really need watch. These include What The Health, Forks Over Knives, Cowspiracy, and a couple others (can't think of the titles right now but will look for them if anyone is interested) that shows how the healthcare system and big pharma work together all for the sake of the American dollar (not so much for helping patients). If everyone was more educated in these areas lives would change and disease and death tolls would plummet just to name a couple of the many changes we would see.

I am fairly new to the integrative/holistic approach as I found an integrative pain specialist that has her own personal experience with the Tarlov cysts that I have. I'm learning and slowly switching over as we find things that are helping me.

Fri, Jun 14 7:58pm · Perineural or Tarlov cysts in Chronic Pain

@jenapower

I have also been diagnosed with Tarlov cysts. I have 5 or 6 of them that cover my whole tailbone/sacral area. The doctor you are speaking of is Dr. Frank Feigenbaum https://www.frankfeigenbaum.com/ . I made the trip to see him and it was so worth it. Just the validation that I'm not some kind of hypochondriac or crazy person made me have a meltodwn. I'm sure probably have meltdowns too caused by trying to endure the symptoms. Currently my insurance is denying my surgery and I'm in the grievance process.

If you don't get the surgery then the symptoms just continue to get worse. I have nerve pain from my lower back all the way down to my toes and have developed peripheral neuropathy on my right side. I have lost control of my bowels at this point and am having issues with my bladder. I'm with you on the headaches cuz I have the sames ones!! I am basically bedridden because of all this. The headache is always there but the intensity just goes up &n down. As soon as I sit up all the pain and pressure woosh up from where the head meets the spine and is mostly across the whole back of my head. I get blurry vision, pressure & shooting pain in my right ear, and extreme nausea. It makes it really hard to evto res. I can't concentrate on anything (makes trying to watch a TV show impossible), have a hard time finishing a sentence because I can't think of simple words, keep asking the same questions over & over, and can't remember anything.

The best website to refer to is https://www.tarlovcystfoundation.org/ . Go into the Survey/Research and fill out the survey. Also go into the Library. There is so much information there that will explain so much more for you than just reading the home page.

Best of luck to you and know that you're not alone. I am willing to try answering any questions you may have. If I take a while to respond it's because I can't keep my head up long enough and not because I'm ignoring you. Take care!

Fri, Jun 14 7:41pm · Perineural or Tarlov cysts in Chronic Pain

@cookiegirl
Forgot to give you the link to Dr. Feigenbaum… https://www.frankfeigenbaum.com/

Fri, Jun 14 7:39pm · Perineural or Tarlov cysts in Chronic Pain

@cookiegirl
I have been fighting these symptoms for 15 years and it wasn't until June 2018 when something triggered the cysts to compress nerves and kick into high gear. I researched for the best neurosurgeon that specializes in Tarlov cysts and went to see him. Looking back he could see that the cysts appeared on the very first MRI after my accident. They were ignored all these years because they are an "incidental finding". After having to learn about the healthcare system the hard way over the years I have a few pointers for you. I hope that you don't have to go through what I've been through!

Make sure you tell the radiology tech more about the cysts and what kind of symptoms you are experiencing. Tell them that you want ALL findings, including the incidental ones documented on the report. It's a crap shoot as to whether they decide to note the cysts. Some do & some don't. Giving them all the info. you can will definitely help in the outcome of most testing. This goes for all tests you are sent for.

You are your own best advocate. Don't settle for unanswered or ignored questions, concerns, symptoms, etc. Don't settle for doctors that refuse to acknowledge the cysts (most of them won't). I've read that Tarlov cysts are merely just mentioned in medical school and skipped over so most doctors don't know anything about them. They figure if the cysts could cause issues they would have learned about them. Don't just see doctors, also see physical therapists, and integrative/holistic providers as well. Explore all your options.

The most helpful website is https://www.tarlovcystfoundation.org/. The best neurosurgeon that specializes in Tarlov cysts is Dr. Frank Feigenbaum in Dallas,TX. It's worth the trip, trust me! I wish you the best of luck and if have any questions I'll answer to the best of my ability.

Thu, Jun 13 3:08am · Living with Neuropathy - Welcome to the group in Neuropathy

@mictim
The doctor that prescribes your medications should address the constipation issues. I recommend getting a bottle of Miralax. My doctor told me to take 75mg every other day and if that doesn't work you can take it once per day. For extreme issues grab a $1 bottle of magnesium citrate from Wal Mart and drink that. You may want to refrigerate it first so it doesn't take quite as bad. That stuff will do the trick but make sure you don't have to leave the house for 10-12 hours. My doctors never mentioned this to me for 15 years. It wasn't until about a year ago that my new doctor addressed it.