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

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

Hello @marinelastef

I'm so sorry to hear of the problems you are experiencing from this "occipital nerve blocks go wrong." Your symptoms sound so uncomfortable.

As this seems like a rather complicated medical situation, I would urge you to go to a large medical university or other research center (like Mayo Clinic) where you can find a team of specialists who can make a good diagnosis and examine your options. You do not mention where you live, however, there are Mayo facilities in Minnesota, Florida and Arizona. Here is the way to get an appointment, https://www.mayoclinic.org/appointments

If you are near a large research and/or medical school that would also be a good option (these types of complex problems might not be able to be handled by your local community hospital).

Please keep in touch, I look forward to hearing from you again. I wish you well as you go through the process of finding some medical help.

Teresa

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?

Hello Teresa, thank you for reaching out to me in such short time. As I read your message tears filled up my eyes, you have no idea how much I fought to get another appointment at Mayo in Minnesota and was denied due to the fact that about 4 years ago, right after the deviated septum surgery with turbines cleaned and cut and tissue removed,( at that time no occipital nerve blocks performed ), I was seen at the Mayo Clinic, but I had no idea that my nose surgery can cause breathing, weakness and numbness problems, therefore no images revealed anything until a few years later. They sent me to a psychiatrist instead because a deared to cry for being undiagnosed and not knowing where the symptoms came from, they said I am depressed. I knew that was a vague thing to say and not accurate enough for what I was feeling. I don’t know how to make my voice heard and be able to find a doctor who’s willing to repair what damaged was done to me. I did not make a complaint, I’m not looking for a legal way to solve this issue, the only thing I ask is to be helped and re-evaluated to get some relief from my ordeal. It’s not fare to agonize like this and be so desperate and breathless 24/7 due to these blocks. I have to hide from a 13 year old daughter not to see me every day going through so much pain and horrible symptoms because I don’t want to break her fragil heart. I feel helpless and hopeless for not being able to handle this situation. If you have any ideas what to do next I would greatly appreciate it. May God bless you for your encouraging words and that you care.
Best regards,

So sorry you go through so much pain. Hope you’ll find a relief soon . May God be with you in every decision you take !!

Hello @marinelastef. I am sorry to hear about your complications as well. If you had your surgery at Mayo Clinic and do not feel as if things went the way they should or that you are getting the attention you should via getting an appointment, you may find it worth your time to contact the office of patient experience. Mayo Clinic values the input of its patients both when things go well or when they don't go so well because it helps the Clinic improve. Here is that information if you feel this is something that you would like to talk with someone about:

Office of Patient Experience
Mayo Building, lobby level
8 a.m. to 5 p.m., Monday–Friday
507-284-4988

Staff are available to discuss comments or concerns you may have regarding your medical care or privacy at Mayo Clinic.

Hello Justin. The deviated septum surgery with turbines cleaned and cut and tissue removed, 2 nostril nerve blocks, 3 left occipital nerve blocks were done home. However, in order to correct such surgery and blocks my doctors sent me to Mayo. 4 years ago right after surgery I was evaluated by them, but no one realized that some of these symptoms could come from complications like tissue and nerve damaged during surgery. Now, here I’m stuck with severe breathing numbness burning stinging weakness problems without given a second chance to explain myself. I’m desperate because I feel like I’m running out of time. It’s sadder for my 13 year old daughter who has to see me every day in pain. I try as much as possible to hide my ordeal from her but my face says it all . Thank you for taking the time to write to me. May God bless you with lots of strength and health to continue the good work. Best wishes.

Hi, @so4tune8 -- I can imagine that would be discouraging to be only 3 weeks out from your nerve block and your headaches are back.

What you've posted here about your nerve block and your headaches would be great as a follow-up post here: https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/. I think you will find the most headache sufferers there who might have some insights for you.

I doubt I will ever allow surgery on me after all the messy surgeries.

Isn’t it interesting how different we all are and how differently we react to similar treatments. I first had Botox for my head Pain. It didn’t work at all for me. Then I had nerve blocks. They work for about 3 months and then I have them done again; I get 3 blocks done at the same time. Now after about 3 years of nerve blocks they are losing their effectiveness. I go to Mayo in Rochester the end of August for a different type of injection to block my head neuralgia. I sure hope Botox works for you and you find relief from your pain.