Since my repair on 10/2/2020, actually the day after, when I woke up my feet were numb. Since then I have had Cerebral spinal fluid leak out of my right eye just below where they put the plate in after the repair, for numbness has moved up both legs bilaterally all the way to my knees to the point where I can barely walk unless I watch my feet move. I was re-hospitalized on 11/22/ 2020 and just got out of the hospital a few days ago. While I was there they did an electro stimulus exam where they stick 22 gauge needles all over your lower body connected to electricity and check to see what your reaction is both of my legs below my knees did not react. During my whole stay at the hospital my surgeon did not come and visit me or weigh in on anything that was occurring, that was his stance and behavior even though I complained of the numbness in the fluid for a month and a half, no answer no comments from him.
The neurological team then decided to try a treatment called plasma pheresis. It was a five treatment That lasted three hours a treatment. They would do it one day and then give me a day off because it makes you feel like junk after they do it basically they’re separating the blood in the plasma and then giving you human albumin with hopes that it regenerates the myelin layer around your nerve endings.
So far there have been no improvements and I have numbness in the areas that I’m embarrassed to talk about. My neurosurgeon did not come and visit me during my last stent in the hospital it was well over 20 days and we unfortunately had to report him because the neurologist I met at the hospital said he thinks there was something wrong with my surgery.
I know things could be a lot worse and I saw my mother with her ruptured aneurysm and what it’s done to her so I am very grateful that I’m still able to walk and live somewhat of a normal life even though I am unable to work until all of this gets worked out.
I guess what I’m asking for from all of you or if there are any other medical doctors watching our posts so please let me know if this is normal or if I need to look into other aspects of my health. My blood counts and all my labs came back normal even after they did a spinal tap that showed that it had proteins in it which was abnormal apparently.
Again I don’t want to complain but I’m just looking for answers I look at all of you as a family as we share something very sacred and I’m looking for any type of answer or thought or process or prayer as always I’m grateful to be here and I think all of you for always supporting me I will get back to all the emails I missed but I’ve been in the hospital for a long time I think we counted but I’ve been home for four weeks since June. Thank you everyone.
Much Care and love,
It saddens me that such a vibrant, active, important man such as yourself is having difficulties. The importance of being an EMT rates quite high in my book!
While we do have medical doctors and other highly educated members in the medical field as members, one of the rules is that no one is allowed to give medical advice. These members cannot access your medical records to give a decent opinion. That being said, we can all share personal experiences and suggestions. Our “family” has a vast array of experiences and they’re not short on suggestions! It’s what helps us so much.
I don’t see your post as complaining at all. What I read is a man trying to get answers. I cannot for the life of me remember if you went to UCSF or Sac for your surgery, I apologize. Perhaps reaching out to another specialist can help. You can always send your medical record to them for a second opinion. I wonder if your surgeon didn’t respond to you while in hospital because you have a neurology team. I’ve learned that they are two completely different fields and my neurosurgeon’s team and the neurosurgeon herself, will refer me to my neurologist. It gets confusing to say the least. I also wonder if the hospital is trying to protect their surgeons from exposure due to the pandemic. I just got out of hospital Saturday after having a stent put in, my Neurosurgeon did come by to share great news in that she is very confident the new stent will work. But the Residents did not come by as often as they have in the three previous coilings. Maybe I shouldn’t count the rupture as I think they came by a dozen times a day, morning and night.
What is the Neurology team saying? One of our members told me that they(Neurology) specializes in different fields. I didn’t know that before. Perhaps if you can find a Pain Neurologist they can help.
I will continue to keep you in my thoughts and heartfelt prayers. I truly hope you can get back to leading your EMTs sooner rather than later. Helping others is so very important. I hope other members who have had craniotomies will share their experiences and suggestions as they will know more than I.
All the best,
Thank you my friend it really means a lot. Actually today we fired my neurosurgeon and I was paired with a outstanding man that listen to me for two hours today. She is friends with one of the best neurologist in the state and his writing a personal letter to get me in right after the new year. They truly don’t know what’s going on but they’re going to get to the bottom of it I just know it. I went to UC Davis for my surgery they did a great job in the ICU but there are some things that occurred that we read in the documentation that reeks of gross negligence and malpractice. Regardless I’m keeping my spirits high my chin up and I know that this is going to be OK I still have four months before I can go back to the fire station and resume my job as a captain and a paramedic I hope and pray for the day and if it takes a little longer that’s OK to buy no means do I want to sound like a Debbie downer I’m not I just needed to voice my emotions and feelings to my family that understands me thank you for being such a good friend and guide.
You are not now, nor have ever been a “Debbie Downer”. I had to laugh about that, it’s been years since I heard it and we used to tease my big sister all the time when we were kids. Yep, her name is Debbie, well really Deborah, but she goes by Debbie.
Glad to hear you have a better doctor! It sounds as if you have a great care team now and that makes me do a happy dance for you.
My Neuro ICU RNs were the best. I always think they’re the best of the best, and they really are. I had to be moved to the trauma ICU and they sorta let the ball drop. I had taken off my BP cusp and no one noticed for 4-5 hours. They hadn’t come in to check on me after shift change. The night RN was there every hour as was Neuro. My discharge papers failed horribly with the only instructions to pick up aspirin which I already have. Nothing on weight limit, nor wound site care. Had to make my own follow up appointment. The Resident said 1-2 weeks and it’s out six weeks. We will take it up when I see my Neurosurgeon’s team in February. My guess is she won’t be happy.
Better news is that neither one of us has to work through the holidays! I always worked On Call on Christmas Eve and New Years Eve and Day. Since I can’t work anymore, I’m always grateful I don’t have to deal with the drunks and drug addicts this time of year. Especially when parents would go ballistic when they started getting the bills for the presents realizing the toys were broken and they were in debt to their eyeballs. I really wish parents could stay within their budget, perhaps teaching their children to make gifts or even limiting the gifts to say 3 a child. With the Pandemic and so many folks having lost their jobs, I fear it’s going to be a busy season for EMTs and CPS.
Sorry, I was ranting. You will be back in the Captain’s seat soon enough. Meanwhile, enjoy your family and this holiday season. We sure have a lot to be grateful for!
Big hugs Captain Rich to you and yours!