Post-Intensive Care Syndrome (PICS) - Let's talk

Have you heard of Post-Intensive Care Syndrome? Sometimes it's called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.

On Connect we would like to bring together people who have been affected by critical illness, and hopefully lighten the burden you bear. Patients and family members welcome.

Grab a cup of tea, or beverage of your choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.

@so4tune8

After my Nerve block, I thought I’d found my solution to my headaches. It has only been 3 weeks since my block and my headaches are back. I guess Botox is my next step. Anyone know where this might lead?

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Yes, we are very different. The blocks I got melted my tissue, muscles and sensitized the nerves . I can bearly breathe and walk now. Remember, they kill your nerve and by doing that you can kill all the other things around it .Or, if the injection is done too far in can damaged the main structure of your body and cause complications.

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@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

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It was 1 yr ago today and I am OK. Hard to believe but I am staying busy and feeling grateful.

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@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn't even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

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@beitel, I am happy to hear that you are doing ok today. You and your loved ones have had a difficult year. Gratitude is the perfect attitude to take forward into your next year.
Are you at work? Or 'doing your own thing' today?

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@marinelastef

Hello ! I’m looking for other patients who had occipital nerve blocks go wrong, I also had deviated septum surgery with turbines cleaned and cut, tissue removed, 2 nostril nerve blocks and left ear damaged. Since all this happened I go through severe burning, numbness, stinging, spasms, breathing and walking problems. It’s horrible what symptoms you can experience after so many procedures that did more harm than good. I know doctors had theirs best intentions to help my spasms but unfortunately I’v got worse as years passed by . Can someone give me an idea where to go and what can I do to alleviate these excruciating symptoms ? Please help , thank you so much !!

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Hello Justin !!
I would like to be linked with other patients that went through pain rehab center at Mayo in Rochester. Could you help me find them ? I would like some info regarding their experience and outcome form the program.

Thank you !!

Best regards!!

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@johnbishop

Hello @marinelastef -- Welcome to Connect. I did a search of Connect on occipital nerve blocks and found a few members who have discussed the occipital nerve or nerve block. I'm tagging the members to see if they may be able to offer some suggestions for you.

@bonnieh218, @ajgray, @maddy32, @sun711, @247headache, @so4tune8 do you have any suggestions on occipital nerve blocks that you can share with @marinelastef ?

@marinelastef have you seen or been examined by a neurologist? or does your doctor have any recommendations?

John

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Hello John !!
Sorry if I dare to ask for help again. I was accepted to go through the pain rehab center program at Mayo in Rochester. May I ask to be connected with others that went through that path ? I would like to find out what was their outcome and how much help they got .

Thank you again for your care !!

Best wishes !!

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@johnbishop

Hello @marinelastef -- Welcome to Connect. I did a search of Connect on occipital nerve blocks and found a few members who have discussed the occipital nerve or nerve block. I'm tagging the members to see if they may be able to offer some suggestions for you.

@bonnieh218, @ajgray, @maddy32, @sun711, @247headache, @so4tune8 do you have any suggestions on occipital nerve blocks that you can share with @marinelastef ?

@marinelastef have you seen or been examined by a neurologist? or does your doctor have any recommendations?

John

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Hello @marinelastef,

Justin @JustinMcClanahan probably did not see your previous question about the pain rehab center. To make sure a member sees your post just include their Connect member name with the @ sign. Then they will receive an email notification that their name was mentioned.

There is an older discussion from 2015 about the pain rehab center but there were only 2 posts.
Groups > Bones, Joints & Muscles > I tore my rotator cuff beyond repair. I've lost so much that I loved.
-- https://connect.mayoclinic.org/discussion/hi-im-new-to-the-discussions-i-have-been-in-severe-pain/

Here are some patient stories from the Pain Rehabilitation Center that may be helpful:
-- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/patient-stories

John

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@johnbishop

Hello @marinelastef -- Welcome to Connect. I did a search of Connect on occipital nerve blocks and found a few members who have discussed the occipital nerve or nerve block. I'm tagging the members to see if they may be able to offer some suggestions for you.

@bonnieh218, @ajgray, @maddy32, @sun711, @247headache, @so4tune8 do you have any suggestions on occipital nerve blocks that you can share with @marinelastef ?

@marinelastef have you seen or been examined by a neurologist? or does your doctor have any recommendations?

John

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Thank you John for pinging me.

@marinelastef, here are a few discussions where members previously discussed the pain clinic at Mayo Clinic. One of them is titled "Cognitive behavior class," but was centered around pain therapy as well:

- https://connect.mayoclinic.org/discussion/cognitive-behavior-class/
- https://connect.mayoclinic.org/discussion/pain-clinic/

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@johnbishop

Hello @marinelastef -- Welcome to Connect. I did a search of Connect on occipital nerve blocks and found a few members who have discussed the occipital nerve or nerve block. I'm tagging the members to see if they may be able to offer some suggestions for you.

@bonnieh218, @ajgray, @maddy32, @sun711, @247headache, @so4tune8 do you have any suggestions on occipital nerve blocks that you can share with @marinelastef ?

@marinelastef have you seen or been examined by a neurologist? or does your doctor have any recommendations?

John

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Thank you @JustinMcClanahan , i can’t wait to see what they can do for me since my pain is always 10, and if they can solve the septum surgery so I can breathe and not feel the stinging and burning in my entire head, ears, chest and so forth . I have a lot of hope, Mayo Clinic is the best in the country, maybe they can figure some out so I can deal with this ordeal.

So appreciative for your information !!

Thanks John for helping Justin find my message ! You are both amazing helpers !!

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@johnbishop

Hello @marinelastef -- Welcome to Connect. I did a search of Connect on occipital nerve blocks and found a few members who have discussed the occipital nerve or nerve block. I'm tagging the members to see if they may be able to offer some suggestions for you.

@bonnieh218, @ajgray, @maddy32, @sun711, @247headache, @so4tune8 do you have any suggestions on occipital nerve blocks that you can share with @marinelastef ?

@marinelastef have you seen or been examined by a neurologist? or does your doctor have any recommendations?

John

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I got the hang of it know. Thank you @johnbishop , and I’m so sorry for taking all your Sunday, hope you have a great night !

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@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more 'normal' fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest... and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

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@hopeful33250. Sorry so long to get back to you but was hospitalized with another episode. I’m not sure about your tests and adrenal problems but I recognize them as measuring hormones in the body that help with basic functioning. Sorry I can’t be more helpful. Definitely ask your endocrinologist. Also FYI, Mayo trip postponed until September for me. I’m medically too unstable to travel safely. So nice to hear from you. Hope all is as well as can be expected. Rhoda

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