Praying for no shunt

[KerriC1]

Not so much a question. Just an update. As I said earlier my leak was found and I had a targeted blood patch done on Friday. They had to go in through the lumbar and run a cath up to the thoracic and inject the blood that way. Not very comfortable but they made me as pain free as possible

He noticed prior to this that I didn’t have the spontaneous venous pulsations in either eye so it’s assumed that the leak was from the high pressure and it forced its way out.

I’m also on diamox to help lessen the pressure and I’m hoping this works. Next step will be a shunt and I sure don’t want that.....

[KerriC1]

Thank you Selma. This procedure is hopefully gonna fix the high pressure/papilledema and to avoid the shunt. It’s apparently not done very commonly and don’t have many long term studies so it makes me a little nervous. Also having to take aspirin and plavix from now till who knows when to avoid clotting in the brain. Yuck

And I must give you credit. You have a heart of gold and are a wonderful sister n law to do what you’re doing to help them through all this. Being a caregiver is hard work as is but with the heartbreaking situation they’ve been dealt I imagine it’s ten fold.... and still trying to make time to help those of us who reach out here. You have your hands so full and are stretched thin I’m sure. Just know that there is a special place in heaven for people like you. Your family is in my prayers through this difficult time

I will keep you posted on how things went and here’s to getting some of my life back!

[selmaS]

Aww thanks Kerri....it's just been overwhelming.....and I am sure that is how you are feeling as well...it's just Life....and we have to roll with it or we get rolled over. lol....

I am married into this  family for 42 years.....so my sister in law with Downs was 7 or 8 when we started dating....I've watched her grow up....it's sad to see the changes, but we are close and she responds well to me....so that is a positive, and I enjoy my time with her.

The family I have here is very important to me as well....they got me through my surgery and I  want to help anyone going through it too..

[KerriC1]

Overwhelming for sure. Seems as though I just can’t catch a break! But I look around and am thankful for the life I have and grateful for the little things I’ve learned to appreciate throughout this, so in that aspect I feel blessed

Wishing you all the best

[selmaS]

I feel the same way Kerri....very Blessed!!

Continued prayers sent your way <3

[selmaS]

Hi KerriC...prayers this works and a shunt is not needed.

Keep us posted.

[KerriC1]

Well had a follow up with neurologist. It’s progressed to grade 2 papilledema so he upped the diamox and hoping that relieves some of this pressure. Just sure not feeling so well. Thank you for your prayers!

[selmaS]

KerriC1,
I am so sorry that it is progressing and you are still dealing with the pain and pressure. I will continue to send prayers your way....and I hope the increase of Diamox will give you some relief.

[KerriC1]

Well I am scheduled June 18th to have venous sinus stenting done as they believe I have transverse sinus stenosis and that is either a cause or consequence of the very high pressure.

The pressure still causing papilledema and also forced another spinal leak so I’m a mixed bag of tricks right now. Hoping and praying for the end of this rather difficult part of my journey.

I feel like I’m a test dummy for some of these things! I don’t think I will ever be close to my normal self again and I’ve accepted that but I imagine what it used to be like prior to the onset of it all. 2 brain surgeries, LP’s, many blood patches and painful testings later here’s to hoping this will be the last part!

Hope you’re doing alright Selma! Sorry it’s been a while since I’ve been on here

[selmaS]

Hi Kerry,

Wow, so sorry you will be having yet another surgical procedure....praying this will help you feel a lot better.....and you will not need any more surgical interventions!!!

I hope you are able to update after your procedure to let us know how you are doing....I know it may take a while, I know when I had surgery I was not up to using the computer....but when you are ready, I hope you let us know <3

I am doing ok...but I do have a lot of issues going on around me.....my one sister in law is in the hospital since Good Friday and was told she will be placed in Hospice.....my mother in law is 90, and my other sister in law has Downs Syndrome and early onset dementia....and I am her care giver, just don't know  how we are going to inform her if/when  something happens to her sister. All the while I am trying to hire additional care givers for the one with dementia....and it has been very difficult....we didn't have enough hours to offer, now we have emergency hours and I still can not fill the hours since I do not know if they will continue to give us these hours once the new fiscal year starts for her waiver on July first.....it's just frustrating to get her the care she needs, and now her sister needs help too....it's hear breaking....but I am fine....just lost as to how to help this all go smoother.