My husband is scheduled to have brain surgery on July 13 at Norton Brownsboro Hospital in Louisville. He has had an accumulation of fluid in his brain, resulting in a loss of motor skills and loss of balance. Losing his balance has been humiliating, because he falls down and can't get up by himself. Some people think he has been drunk when he hasn't had anything to drink.
Doctors don't know the cause, but this is a rare condition developing in about 5% of people in their 60s and 70s. Inserting a shunt in his brain should give him at least 5 years without symptoms.
I suggested he shave his head, so he wouldn't look so weird with the haircut he would get at the hospital. He says that I just want to see how he looks with a bald head. I told him there's an upside to everything!
We have been stuck in Louisville since Easter, waiting for his doctors to decide what they will do. There is no cure, just a way to postpone the development of symptoms.
I am scared, but my husband is not because he feels he has nothing to lose. He DOES NOT WANT TO LIVE with the symptoms, which will kill him eventually. We have had a rough time.
We are scheduled for the Maine Rally. I am not ready to cancel, if the doctors will just let us get out of town. I will post later on the meetup thread.
Oh Leslie! I am praying that all will go well in surgery and that the shunt will bring him back to normal. I'm praying for peace for you, too. Joan & Gregg
This is terrible, terrible news. However, at least you have some sort of definitive information, and the ability to treat it to a fair extent. Of course you have all our support.
In the meanwhile, chin up. Do what you have to, fight it as long as you can and make the most of every day. Ain't none of us getting younger very quickly, either.
Tell Pete that I say go with the bald look, but get some sort of groovy tattoo while he has the hair off. Then it can grow back over the tattoo and be all even, and it will be the family secret.
Sent from my iPad using Tapatalk
Karen and I sending good wishes your way!
Thanks for posting the update. Jan and I sure hope things go well with the surgery and the 2 of you can enjoy travel again soon. We especially hope you can make it out to Maine meetup since we are looking forward to seeing you again.
I hope everything goes well, thank you for keeping us up to date.
We send you our best wishes
I have been sharing your messages with my husband. They warm our hearts.
He worked until he was 71 years old. I asked him if he wanted a retirement, or if he intended to work until his health gave out. He said he wanted a retirement. One year and five months after he retired, he started seeing doctors to find out what was going on.
If I can give some advice to those of you in the working world who want a retirement - plan, save, and don't wait too long because there are no guarantees in life.
Best wishes for skilled surgeons, a successful procedure, speedy recovery and a quick return to "normal" life and camping!
Although we have not met yet we feel from your posts we know you. We will pray for you both, and hope to meet you on the trail of life at a future gathering. God bless you!
Praying for you and your husband. My wife went through brain surgery to stop epileptic seizures. She had her whole head shaved since she figured it would be easier to just have it all grow back at once. Even though her surgery was 30 years ago in Philadelphia it was amazing what the doctors could do. It is even more advanced today. She had her right temporal lobe removed and it is amazing how resilient the brain is.
My husband had his head shaved today. He looks like Daddy Warbucks! The neurosurgeon nixed the tattoo idea due to concerns about infection.
Quote from: leslie on July 10, 2017, 07:31:59 PM
My husband had his head shaved today. He looks like Daddy Warbucks! The neurosurgeon nixed the tattoo idea due to concerns about infection.
Two words: Sharpie
Sent from my iPad using Tapatalk
Quote from: leslie on July 10, 2017, 07:31:59 PM
My husband had his head shaved today. He looks like Daddy Warbucks! The neurosurgeon nixed the tattoo idea due to concerns about infection.
Married to a guy that looks like a movie star! Very nice!
Joan
Leslie - Prayers for your husband and you tomorrow. Gregg & Joan
I sure hope all goes well tomorrow. Here's to a speedy recovery!
So - hubby is out of surgery and the neurosurgeon is very happy with the results. But... There is always a but... His doctors are in disagreement about the causes for some complications he is having - whether to blame them on the way he is handling coming out of anaesthesia or something else.
Actually he is happy that his motor skills are improving. But he is one sick puppy who has had two miserable days and one miserable night. I am exhausted. I stayed in the hospital last night and only got 3 hours of sleep because the staff were unable to make my husband comfortable. Our youngest son is staying in the hospital tonight so I can get some sleep. So that is where we are now.
I appreciate the update. I hope the doctors get their disagreement resolved quickly and your husband heals fast. I'll bet those first 48 hours post surgery were rough. You'll be back on the road enjoying the sights soon, I hope!
Thanks for the surgery report Leslie. Hope your husband is doing better now that he's had a few days to start recovering. Both of you are still in our prayers and we look forward to hearing the future updates and the day when the two of you can get back out on the road.
According to the brain surgeon, if things continue with his brain as they are going now, we should make it to the Maine meetup. That's the good news.
The bad news is that he has some complications which might keep him here. I am going to post the gory details in case someone has some ideas or experience to share. If you don't want the gory details, stop reading here.
He woke up from anaesthesia unable to pee. Not all that unusual. Catheterized and released him from the hospital. This AM he is peeing bright red blood and he's hurting. Replaced the catheter with a new one and the urologist is going to look inside with a tiny camera in 2 days to get a better idea of what is going on. Thank goodness for pain killers!
Hubby is SO frustrated. Urologist not very worried over blood.
Thanks for the update Leslie. Maybe it's a good sign that the Urologist isn't all that concerned about it. Maybe it's something that happens sometimes after surgery. Glad to hear that the complications aren't brain-related! Prayers for continued healing. Gregg & Joan
Some bleeding isn't uncommon after being cathed, if they were terribly worried they wouldn't be giving it 2 days to see if it clears/is healing. There could be something else going on, but most likely is varying degree of trauma from the cath procedure itself.
Sent from my iPad using Tapatalk
I'm going with the good news part and run with that. See you in Maine!
Update:
Thanks so much for the emails and encouraging comments! Sorry I have not been able to keep up with everything. I am pretty well worn out from caring for my husband and he is certainly tired of being sick and tired!
Here is where we are - his brain surgery has been a success. His miserable symptoms are going away and healing is going well. We are very hopeful that he will have some years of retirement to enjoy before we have to deal with these symptoms again. The most troublesome was the loss of balance, and he hasn't fallen once since he had his surgery on July 13.
Not so well with the prostate surgery - he has not healed following surgery on August 4, and his urologist is stumped as to why. He says there is no cancer. I have been insisting that my husband be tested for an infection. Finally he was - I was right, but it doesn't make me happy about that. Every morning, I have to drive him to a hospital for an antibiotic injection and this is going to last for another week. We have to hang around for 20 minutes following the injection to make sure he doesn't have a bad reaction. :P
So, while my husband is sleeping a lot, I am busy, busy, busy. I don't have the energy to shop, prepare food, and clean up after I take care of my husband and work to keep everything super clean. If he doesn't feel well enough to go out to eat, then takeout and delivery have been my salvation.
Again, thanks for the words of encouragement and emails and messages. I will update again when I have something new to report.
Leslie
Thanks for the update. I'm glad there is at least some good news and I hope the infection clears up right away. It will sure be nice when you can start planning your next camping trip! Where are you?
Thanks for the update Leslie. Glad that your husband is doing better but sorry that it has been wearing you out. It sounds like there is light at the end of the tunnel! You both continue to be in our thoughts and prayers. Gregg & Joan
Quote from: Merlin on September 04, 2017, 09:28:16 PM
Thanks for the update. I'm glad there is at least some good news and I hope the infection clears up right away. It will sure be nice when you can start planning your next camping trip! Where are you?
Hi Merlin - We are in Louisville. We wintered in Florida, and when we found out my husband needed brain surgery, we headed home. We thought he would have the surgery, hang around for post-lumbarcare checks and be able to enjoy at least part of the summer RVing, including meeting up with you and your wife in Maine. Well!
We have been here since Easter weekend, seeing different specialists while the doctors decided what to do. Our neurologist here in Louisville says my husband is the first patient with this build-up of brain fluid in an elderly (!) person that he has seen - that is how rare this condition is.
We have weathered all of this while moving from campground to campground in our Camplite 21BHS. We can only stay in one state park for 14 days in any 30 day time period.
The antibiotic is working! I have more energy today! Hubby is feeling better! Thank goodness! It has been a long haul.
Leslie, I hope you know that we all love you and Pete, and are all hoping for news (good news !) all the time. We just can't bring ourselves to be constantly asking; we know how hard this time is for you. You are never far from our thoughts.
We really appreciate all the caring messages we have received. This is really tough what we are going through.
Hubby has been constantly bleeding ever since his prostate surgery Aug. 4. At the end of the antibiotic injections, the nurse said he should have another round of antibiotics. I said no - because he doesn't have fever and there are no symptoms of infection. Nurse said perhaps cranberry juice.
He is feeling better, relatively speaking. We have left Louisville and all the specialists to go to Branson MO to meet up with friends. 2 days ago he stopped bleeding. Now we feel that healing will begin.
Leaving Louisville or cranberry juice? Which did the trick? We are just SO glad the bleeding has stopped.
The trip isn't easy. I do everything from driving, hitching up, unhitching, dump stations, etc., plus taking care of hubby. However, we are so happy to be free of doctors for a while. October means more of the Dr appointments, but we look forward to November.
About our Florida home - 3 friends have inspected it and say there is no damage. 500 yards away, 6 mobile homes were destroyed. Much relief for us - much sadness for those who lost their homes.
Out of time now - thanks for the encouragement. Hopefully, we can put this miserable year behind us and not look back.
Thanks for the update Leslie. We are so glad that your husband is doing better and that you were able to hit the road again! Take care and you have our prayers for continued healing and rejuvenation! Gregg & Joan
This would make a good joke if it weren't true. My husband went into a grocery store to buy Huggies Baby Wipes. The young male clerk checking him out said - oh, these are for your grandchildren. Hubby said no. Young clerk - these are for your own child. Hubby said no. Young clerk asked then, who are these for? Hubby said for me. Clerk - ??? Hubby said he had prostate surgery. Clerk - what is prostate?
Hi Leslie. We haven't heard from you in quite a while and we miss you on the forum. Hope that you and your husband (Pete) are doing well.