10.05.2018

Where I’ve been since July | Health update

I want to give you guys a quick health update because I’ve had several of you email or message me to ask about my absence from blogging. In late June, I began to have daily positional headaches. Basically I get a headache anytime I am upright for more than a few minutes. The longer I stay upright, the more intense the headache becomes, so I have been spending a great deal of my time for the past 3+ months lying on the sofa or in the bed.

Initially, my spine specialist thought these were tension headaches, caused by tight muscles in my neck and upper back, but when various forms of bodywork did not relieve the headaches, she referred me to neurology.

Since August, I’ve been shuffling around from doctor to doctor, trying to find out the cause of these headaches. Last month, after three days of imaging at my local hospital, my doctors finally confirmed I have a spinal fluid leak. We initially thought the leak was likely located at the site of the back surgery I’d had back in May, but it’s actually higher up on my spine at L2-L3. So, at this point, it’s considered to be a “spontaneous” leak, meaning there’s no obvious cause for it. I suspect the leak may be somehow Lyme related since a quick search of online support groups found numerous posts from others with Lyme who have had these leaks.

I had a blood patch last week to repair the leak. A blood patch is essentially how it sounds: Blood is taken from the arm and then injected near the site of the leak. If the patch works, then the blood forms a clot and plugs the hole, restoring pressure in the spinal sac and relieving the headaches.

My blood patch held for four days, but unfortunately, the patch failed, and the headaches returned. It’s not unusual for the first blood patch to fail, but obviously I’m disappointed that it didn’t hold. I have a second patch scheduled for later this month. Hopefully that one will work, and I will be able to return to blogging soon.

I have learned much during these past three months of being mostly bedbound and navigating the medical system, which I’m sure I’ll be writing about in the future. I love you guys and miss connecting with you.

These leaks can be difficult to treat so if you feel called to do so, please feel free to send your prayers or healing thoughts my way. I could definitely use them!

When I can, I’m still posting links to articles and sharing updates on my Facebook page for those who want to stay updated.

Comments

  1. Lisa Radelet says:

    Donna, you have been such a help to so many of us. I hope your doctors find a solution and you get some relief. Prayers for your healing.

  2. Georgene Girouard says:

    I continue to pray for you, my friend! You are so brave.

  3. Jennifer Craine says:

    Im so sorry about your condition.
    Im praying for you.
    May Gods hands provide you healing so you get past this and much better.
    I love you Donna.
    LYME definitely sucks!!

  4. Karen Oder says:

    Donna, you’re in my prayers as well. I hate to hear that you’re struggling, it just doesn’t feel fair as you have helped so many of us. I’ve found your blog to be the most useful as I’ve found some relief from your informative blog. Thank you for all you’ve done for us (probably a whole heck of a lot more than you can imagine)! If there’s something we can do for you, please let us know. Take care and hang in there!

  5. Joan Hayes says:

    Dear Donna,
    My heart goes out to you. I knew you were in trouble. My prayers are with you.
    I so much look forward to your blogs continuing -your writings are wonderful. You help so many people,
    For now just take special care of your special self. Lots of prayers are coming your way.
    God bless you

  6. Pam Collins says:

    Donna, I am praying for you during this challenging time. Thank you for your very informative blog and for using your medical issues to help others. The Word of God tells us that By MY stripes you are healed. I continue to speak that promise from God as I join you in the healing of our bodies.😘

  7. Molly says:

    I just read this and have already started praying for you. You have had to deal with this for so long! When I was delivering my son the epidural was put in the wrong spot and caused a spinal fluid leak. IT IS SO PAINFUL! So, to some extent I can understand what you must be going through. I’m sorry you have been dealing with this for so long. It really is another thing that shows how flawed the medical system is now. I wish the first doctor would be the leader of all the doctors and see it through so the individual wouldn’t feel so hopeless. It is really discouraging to have to continue to see doctor after doctor because they don’t have any answers. Hang in there! When the blood patch works after 48 hours you will have your old self back. You’re almost there. You will be in my thoughts and prayers. Feel free to connect anytime.

  8. I’m so sorry about your difficulties. I hope you’re feeling better soon.

  9. Maureen Mollico says:

    Hi Donna,
    So good to hear from you. I have missed you and have been wondering what may have happened to you but assumed you had taken the summer off.
    Just this past week I thought I ought to send you an email to check in though.
    So, I am very sorry to hear of all that you have been going through. 🙁
    I had spinal fluid leak and subsequent blood patch after one of my spine surgeries therefore I know how awful those headaches can be!
    I cannot imagine suffering from them as long as you have had to! I am sorry that you have to wait so long now
    for the 2nd patch but I trust that this will be fixed and you will be much better.
    Stay focused on yourself and heal well. Keep strong buckaroo! I will surely be praying for your recovery.

  10. Jana Pendragon says:

    Taking care of you is setting a good example for all of us and the world…carry on. Be well in all things.

  11. Elizabeth Bolton says:

    Thank you for sharing your issues with us. I’m so sorry to hear about the headaches and the cause for them. Surrounding you in love and light and sending all hope for a permanent fix. I join with the others in thanking you for your enormously helpful blog and for your ongoing kindness.

  12. Kim Kosmack says:

    Prayers and healing thoughts on the way! I really hope your next procedure is a success! I don’t post much but you are such an inspiration to me and provide such valuable information!! Thank you so much! Take care of yourself ♥️♥️

  13. Sending prayers your way! Thanks for letting us know what it is up with you. I love your web site and blog. Your blog and web site have been a great educational reference and encouragement to me.

  14. Thinking of you,get better soon..jeanxx

  15. Kathy Vincent says:

    So sorry to hear about your current health issue. I was wondering why we hadn’t heard from you.

    . I don’t know you personally but what I do know is, you’re one strong woman. We who endure so much pain everyday of our lives for years on end are brave and strong.
    I will pray that relief comes soon.
    Get well and feel better,
    Sending you sunshine from the beaches of California.
    Kathy Vincent

  16. Antonina Menza says:

    Donna, I am so sorry you had to go through such pain, and I think we all know the pain and stress that comes from not knowing what the problem is, so I’m glad at least that you know what is causing your headaches, and I’m sending you prayer, love and positivity and wishes that the second blood patch works. Please take care of yourself and believe that you will sitting and standing upright and be pain free of headaches.
    You are missed and loved. Thank you for sharing your struggles with us. Much love sent your way.

  17. Donna,
    I’m so sorry to learn of what you have been dealing with. I’m so glad you are on the right track in dealing with this condition. My prayers are with you and hoping you are feeling much better soon. I truly appreciate all the helpful information you provide for us in your blog. I have found out many things I hadn’t heard about. Take care and God Bless. Looking forward to your return.

  18. Leslie Pope says:

    I am so sorry to hear of your latest medical problems. I am sending Love, Light & Positive Energy your way. Hoping the second patch holds.

  19. Linda Teeple says:

    You are in my prayers. Thank you for all the helpful information you provide.

  20. Jan Kane says:

    You were, indeed, GREATLY missed. Having you on our radar is a gift. You have helped me and so many others. We will return our favors by keeping you in our thoughts and prayers. God bless you.

  21. Susanne Smith says:

    Thanks for the update – I have thought of you many times since I last read something in which you mentioned that you were not doing well.
    Glad you got to the bottom of it and hope some things will continue to improve. I often mention you and what a wonderful resource you are. So caring and willing to share. Thanks you.
    Susanne

  22. Rebecca Rivas says:

    Heavenly Father,
    Heal Donna in the special way that only you can, Lord. There are thousands of us who depend on the great information she so lovingly shares with us.
    Lord, give Donna peace that you are working on her, and it’s on your timeline. We have to wait on you, Lord.
    In Jesus Holy Name AMEN!
    Love you girl!! Stay Positive!

  23. Glad you at least found the right doctor and the proper diagnosis. That is half the battle.
    Prayers that the next patch will work

  24. Germaine Cabe says:

    Donna, I am so very, very sorry to hear of such suffering. Have you been checked for Postural orthostatic tachycardia syndrome (POTS)? A friend of mine had it in her senior year of high school and had all of your treatments. It took many doctors to find the right diagnosis and with treatment she is doing much better, attending college now. Don’t give up…I will pray to the Angel of Healing for grace and mercy to come your way.

    • Donna Gregory/FedUpwithFatigue.com says:

      No, this isn’t POTS. I have an actual tear in the sac that holds the fluid that surrounds my spine and brain. Although in my research, I learned that some people diagnosed w/ POTS actually have spinal fluid leaks and don’t know it. If they get their leak fixed, then they no longer have POTS.

      • Sheila says:

        Hi Donna, sending prayers your way and thankful for your openness to share your experiences with us. Would you mind sharing how they diagnosed the csf leak? What tests did they have to do to confirm it? I am wondering if that’s what I have, been diagnosed with POTS, but my blood pressure has improved and no improvement to the headaches and dizziness. God bless you and heal you.

        • Donna Gregory/FedUpwithFatigue.com says:

          Initially I had MRIs on the brain and spine with contrast but nothing showed up on those. However, MRI is usually the first test ordered b/c it’s the most noninvasive. Then I had a cisternogram, which is what actually found the leak. That involves a spinal tap so it’s more invasive. Stanford has found a link between POTS and CSF leaks. I would seuggest watching YouTub videos from Dr. Ian Carroll about POTS and CSF leaks. He’s found that some people w/ POTS are misdiagnosed when they actually have a fully curable spinal leak.

  25. Hannah says:

    Please be wary of POTS (postural orthostatic tachycardia syndrome). I have been treating my Lyme disease for a year, but it is the POTS symptoms that really have me down. Lyme disease can often cause POTS and being off your feet for an extended amount of time can make it worse because your heart can shrink. It takes a lot of medication and hard work to recover from it if you ever do recover and it can literally leave you bed ridden. Please look into they symptoms and be wary.

    Good to hear from you!

    • Donna Gregory/FedUpwithFatigue.com says:

      This isn’t POTS. I have an actual tear in the sac that holds the fluid that surrounds my spine and brain. In my research, I learned that people are often misdiagnosed w/ POTS when they actually have a spinal fluid leak. Not many doctors know about spinal fluid leaks so it’s often overlooked. Stanford has done some research on the connection btw POTS and spinal fluid leaks. Once the leak is fixed, then they no longer have POTS.

  26. Janzel kelly says:

    Donna,
    I am so sorry to hear you are having such a trying difficult time…you are such a caring and thoughtful person…you have done more with sharing your thoughts, research and help than any doctor ever has for me. I am praying for your quick recovery and you will be sharing again soon…gentle hugs

  27. Rita J Stringfield says:

    I’m so sorry to hear this Donna! I have thought of you & hoping that you were doing well. Take good care! Sending caring thoughts & prayers, Rita

  28. Marianne Haakonsen says:

    Dear Donna
    All the best wishes from me!
    I have followed you since I was diagnosed and you have helped me a lot when I feel lonely in my fighting. I’m trying out a new job right now but the tiny little bit of energy lfeft is yours!
    I do hope that you will be better soon!
    Hugs and thoughts
    Marianne from Denmark

  29. Kathleen says:

    So sorry to hear of your significant health issues, but wanted to thank you for letting us know what is happening to you and how you are valiantly fighting your way through the medical system. Sending love and strength as you continue your battle and sincerely hoping you will shortly find some relief from the pain.

  30. Donna, sending strength, compassion, peace, and love to you now from Regina SK Canada. May you receive all that you need.
    May the days ahead unfold
    with small blessings
    being found
    in gentle nooks of grace.

  31. Heidi ketz says:

    Hope you start feeling better very soon and that the second patch holds. I know about spending time finding Drs ,I still haven’t found one that I feel actually listens to me I get that “look they have when they think your just complaining to get attention.
    Praying fotr you

  32. Dianne says:

    I am so very sorry to hear of your medical problems. Please take good care of yourself so that you may continue to give us valuable information about our various conditions. I will be thinking positive thoughts and sending them your way!

  33. Margaret says:

    Oh Donna, I am heartbroken to read this. You’re in my thoughts often, and I’ve wondered what’s been going on since the blood patch procedure. Thank you for updating us. Sending you love and light, and wishing that were enough to actually help you in a tangible way. We miss you.

  34. Pamela Craft-Jenewein says:

    Prayers coming your way from Michigan… to guide your physicians and to give you some peace of mind and relief from pain.

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