Arnold-Chiari Malformation Support Group
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.
My Mom/I had our 3-month check up today. Needless to say we were both very nervous about this; but things couldn't have gone any better.
We both had MRIs done to see how things were progressing. He said mine looked fine (which was very good news since as I stated, I felt some discomfort in the base of my skull). He said the syrinx hasn't changed, which is good; but he doesn't really expect any changes to occur until after 6 months. And he removed my 25lb weight restriction so that means no more Granny cart to carry my laptop and stuff to work...lol. He did say no rollercoasters and no contact sports for now. There goes my NFL career. Darn!!!
I asked about working out and he said as long as you're not doing anything to hyper-extend the neck (forward or back) and not doing anything that is jarring your body (jogging, jumping, hopping, etc.) then I should be fine. The nurse did warn me that some people have had their symptoms come back because of the type of exercising they were doing, etc. Dr. Di did give me a solu medrol pack for the swelling. He wants to stay on top of that.
Now for my Mom. This was the best news ever. As you know, he drained a large cyst that was above her cerebellum and was pushing down on the Chiari. The cyst hasn't come back and believe it or not, the cerebellum has moved back up. He stated her Chiar pre-surgery was worse than mine (13mm). Now, she has a mild case of Chiari and the best news...no surgery (decompression). He said she probably wouldn't even qualify for the decompression surgery right now.
So, that's the plan for her. She's going to do some physical therapy to help her with her walking. Dr. Di feels her symptoms should start to decrease over time. Of course Mom said it was OK if they didn't go away...she's lived with them for over 40 years...as long as it doesn't get worse, then she's fine with that.
It was a very long day...about 12 hours with travel and all the appointments, but it was worth it.
Sorry this post was so long, but it was a lot of news...and great news for once. We go back in about 8 months for our one-year checkup.
We both had MRIs done to see how things were progressing. He said mine looked fine (which was very good news since as I stated, I felt some discomfort in the base of my skull). He said the syrinx hasn't changed, which is good; but he doesn't really expect any changes to occur until after 6 months. And he removed my 25lb weight restriction so that means no more Granny cart to carry my laptop and stuff to work...lol. He did say no rollercoasters and no contact sports for now. There goes my NFL career. Darn!!!
I asked about working out and he said as long as you're not doing anything to hyper-extend the neck (forward or back) and not doing anything that is jarring your body (jogging, jumping, hopping, etc.) then I should be fine. The nurse did warn me that some people have had their symptoms come back because of the type of exercising they were doing, etc. Dr. Di did give me a solu medrol pack for the swelling. He wants to stay on top of that.
Now for my Mom. This was the best news ever. As you know, he drained a large cyst that was above her cerebellum and was pushing down on the Chiari. The cyst hasn't come back and believe it or not, the cerebellum has moved back up. He stated her Chiar pre-surgery was worse than mine (13mm). Now, she has a mild case of Chiari and the best news...no surgery (decompression). He said she probably wouldn't even qualify for the decompression surgery right now.
So, that's the plan for her. She's going to do some physical therapy to help her with her walking. Dr. Di feels her symptoms should start to decrease over time. Of course Mom said it was OK if they didn't go away...she's lived with them for over 40 years...as long as it doesn't get worse, then she's fine with that.
It was a very long day...about 12 hours with travel and all the appointments, but it was worth it.
Sorry this post was so long, but it was a lot of news...and great news for once. We go back in about 8 months for our one-year checkup.
deleted_user
Fantastic news Linda. Best wishes to you and your Mum.
deleted_user
You were so supportive to me when I first joined this site - I am SOOOOO happy to hear the positive news. =)
Join the Conversation
-
A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...
-
Today is my 25th birthday, to my somewhat lack of surprise I can see already no one really seems to care. I've always been the kinda person to make sure that everyone I Care about feels appreciated and knew somebody had their back. I can count 4 times this year when I Went out of my way to make sure a "friend" felt good on their birthday, especially if they got left hanging. Its early in the...