update spinal leak relative

[irish]

Hi folks, Just a note to let you know that my daughter-in-laws sister and her hubby were here late PM so the hubby could lie down and rest. He was on his way back to Rochester where he has been going through the Mayo Clinic again. This is the brother-in-law that was so bad this summer and spent so much time in and out of the hospital.

I have been just beside myself at times because I was so sure he was having autoimmune issues because he has been having "flares" for so many years and muscle weakness and a multitude of other problems without any other findings. Anyway, he has been having problems again and had blood patches on the leaks again and missing work. It has been so rough on them and especially on the two little girls.

He had to go back and he was sent to another doc who happens to specialize in repairing spinal cord leaks. This doc spent 1 1/2 hours going over his chart and then spent 3 hours examing and talking with the couple. It turns out that this doc does surgery which is very specialized and has people come to him from all over the world. Now, if you are wondering why they were not sent to this doc in the first place (which is what all of us have been wondering) my DIL told me that he had "fallen through the cracks".

That is entirely a problem that happens to all of us. This doc told Jer that he has an autoimmune connective tissue disease. I told muy DIL "I knew it"!!!!!! I have been so concerned as to why no doc has put him on prednisone, etc. Anyway, there will be an upcoming surgery to repair the largest leaks. Doc told Jer he has the most spinal fluid leaks or outpouochings on his spinal cord that he has ever seen. Following the surgery they will put him on prednisone. Imagine they don't want to hit him too hard with steroids until after the surgery because of the increased chance of infection.

This is going to be a very rough row ahead and there are a lot of things that could happen such an aneurysms, blood vessel outpouchings, etc. Jer has to have a radioactive uptake in spinal fluid tomorrow and they will be taking films for 4 days to check out things. The last time he had this done he had leaked so much spinal fluid in 2 days they could not get a good test result. Would appreciate more prayers for Jer and his family as they go through this ordeal. Thanks a lot. Irish

[eyeamdry]

Jer and the family have my prayers for a good outcome to this situation.  Lucy

[Scottietottie]

Hi Irish 

I'm so glad he's finally got to see someone who spcialises. Just a pity he wasn't seen a lot earlier.

Fingers crossed and best wishes that things go well. It's a terrible situation.

Take care - Scottie 

[genko_b]

Thanks for the update, Irish.

Our thoughts and prayers are with you and your family.

Genko

[Chickpea]

Hi Irish

Thanks for letting us know what's happening in your family.  That's such a tough situation, especially for the two little girls seeing their Daddy so sick.

Thinking about you all - Chickpea x

[Katybarstool]

Hi Irish

I'm sorry to hear that Jer is suffering again. I will keep him in my prayers.

Kathyx