Lumbar puncture - my next step in my journey

Hi @greg1956

I'm glad to hear you're doing well despite the challenges you've faced.

I understand your confusion about "lumbar puncture." It's a medical procedure used to collect cerebrospinal fluid (CSF) for testing. This is done to diagnose conditions affecting the brain, spinal cord, and nerves.

Your experience with the spinal cord injury is inspiring. It's wonderful that surgery has helped alleviate much of your pain and restore some of your mobility.

I'm also impressed by your positive attitude toward your TBI. It's clear that you've found ways to adapt and thrive despite the limitations. Your connection with your church community and online friends is a testament to your resilience and ability to find support.

I hope you continue to find joy and fulfillment in your life and stay positive.

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I too suffer from TBI and many other issues. Most of my injuries are related to my military service back in the early 2000s. I'm in my 30s now and some of these problems have started to really take a toll on my life.

I haven't been able to work in multiple years and I'm struggling to find meaning in life again.

I'll get there eventually, I hope. My wife works hard to keep me positive but being that I'm stuck in bed most of the time when I was once active, and loved to travel, it is hard to be positive for me.

I'm not good with people so I do not have friends. I used to have a lot but I suppose due to my TBI, severe PTSD and such I'm not great at talking and connecting. Guys here in my age group get scared of me and stop talking after a few interactions. My wife has tried to help with that but I continue to struggle.

Hopefully soon we'll have some medical answers and one day maybe I'll figure out how to be good with people again. I want to feel better and I work really hard at it but things just continue to get harder no matter what I do.

Oh, I got the lumbar puncture results back yesterday and they didn't find anything. So I guess good news for that but also bad news because I continue to have no answers and my neurologist keeps getting it wrong.

Take care and thanks for your reply and your story.

@mayoscout Thank you for your military service. I'm sorry you are suffering now, and I wanted to share a link to a music therapy retreat. This was started by a friend of mine, and they have helped many veterans deal with PTSD. Music heals, and this works because a person is paired with a professional song writer and together, you tell your story through a song that you create together and perform. Check it out. If this is something you could do, I would highly recommend it. I've known Mack a lot of years and doing this is very important to him in helping others to heal.

"Saving Lives with Songs"
https://musictherapyretreats.org/

You can have CIDP with a normal lumbar puncture result! I have it and mine was normal. They check for elevated protein levels in the spinal fluid but it isn’t always high. It’s unreasonable, IMO, to wait 4 months for a discussion when your neuropathy is rapidly progressing. I urge you to get into a neuromuscular specialist, different than a neurologist. That is the dr to see to evaluate you for CIDP. If that’s what you have, it can become very debilitating and early diagnosis and treatment is essential! Good luck and please don’t delay.

Thank you for this link. I checked it out and it's something I am interested in.

I used to be heavy into music before the Army. I was in pop group in high school, played guitar, sang, danced, etc.

I lost all desire for that after my deployments to the Mideast starting in 2005. And due to head trauma from injuries and just not touching anything due to PTSD and depression I've basically forgot how to play, sing, and I definitely can't dance because of injuries. It's hard to play instruments with neuropathy in my hands and arms now but I want to give it a shot again.

Music is an amazing thing but I've had trouble reestablishing happiness with it.

This retreat looks really cool.

I live in Texas. That could be a problem as I would like to do the retreat in Aspen as my primary choice or Nashville.

Do you think I should reach out to them?

Thanks for the reply.

Well he doesn't really know if it's CIDP. All of his previous guesses were wrong so he is probably wrong with this too.

I agree I shouldn't be waiting so long since this is progressing so quickly. I may give them a call tomorrow to see if I can come in sooner. I don't know why he wants to wait so long. Maybe he has a reason and it would be nice to know that if he does.

I'll have to see if the VA will approve a neuromuscular doc. They have a process so in order to approve I need to see what requirements they have to approve the referral.

@mayoscout Yes, please do reach out to the Music Therapy Retreats. They schedule retreats in different places. It used to be centered in Colorado, but because a lot of veterans with PTSD would cancel because they felt they couldn't travel, they started bringing the retreats to the veterans to help them attend. You will be in a safe welcoming place in attending this and you'll be working one on one with a professional musician.

The man who founded this program, Mack Bailey, is one of the best guys you could ever meet. It is his passion to help people recover from trauma through music. I have known him personally for over 20 years and this is really his calling in life to use his talents to help others. They will put a guitar in your hands and teach you how to play it. Many veterans come to this program having no musical experience at all. You'll be in good company. If you have already played guitar, you'll be ahead of the game here, and reconnecting with that part of yourself will help heal. Your feelings belong to you, and this is a way to find peace with all of that. Don't put pressure on yourself to be happy. It is a journey. Mack tells me that through music, you can rewire all the traumatic memory pathways in the brain. The brain holds onto and gives priority to the traumatic memories which gets in the way of other functions. It's a survival instinct that humans are this way, but you can "unlearn" those trauma connections, not forget, but to understand how to overcome them.

I have had some PTSD in my life too, but not the same as yours. I found a way to overcome it through creativity and using my art work as therapy to help myself. I also listened to music and I asked Mack about it at the time about using music as therapy and he told me that breathing slow and deep in time to the music will help. It did. I was learning to lower my anxiety and blood pressure by doing this, and that became a tool I used when I needed to cope with a scary situation. Since I am a visual person, I also added imagery to the mix, and I could do this all in my head anytime anywhere and play music I loved from my memory in my mind.

You can do this. It will be a journey of discovery. You've already shown your bravery with your military service and this experience will help you find yourself again. Go for it!

That sounds excellent. I can understand why vets were cancelling due to their PTSD. I have done the same but I am trying to change that. Physical health limits my ability to travel as well but I am about to suck it up and just do it. I started doing EMDR therapy a couple of years ago and that has been an extremely beneficial type of therapy that has allowed me to start communicating with some others again and have the desire to go out here and there.

The VA in my region has an arts and music program but I am too far out (mile wise) for them to care to try and bring it to this little area. They have told me on the phone that my are is like the step child for them and we really do not get thought about. So I have never been able to participate in that program.

Thanks for recommending this program and all of the other information. Mack seems like a pretty good person and thank him for all that he has done.

I will be reaching out to them in the near future.

@mayoscout I did some EMDR therapy and it is very helpful. It helps you process memories similar to when you are sleeping in the REM stage (rapid eye movements). That seems to be when the brain is processing memories and traumatic memories. I also did clinical hypnosis and that worked very well. That was centered around having a "safe place" in your mind that you design yourself, and the post hypnotic suggestions are things that you ask the therapist for. I think that empowers you to be able to cope even though you are experiencing something that is fearful, and the amazing part is you are really doing this yourself and your therapist is the facilitator. That is the power of the mind and you can focus your thoughts and feelings into overcoming adversity. For me it was a fear of surgery that was deep rooted. I did hypnosis and was able to be calm through my first surgery. That was a beginning point, and I knew if that was possible, that I could also learn more about how to keep myself calm in the future. It was after that I did the EMDR with same therapist.

I started this discussion about using creativity to overcome fear. Maybe this will interest you.

Just Want to Talk - "How can I defeat my anxiety about medical tests and surgery?"
https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/
I'm happy that you want to try the music retreat. What is the VA program with art and music? I know it's not in your area, but I'm curious about what they do.