I would like to share some update on my daughter who is 17 years old and has undergone a duroplasty…Some of you here have been very helpful in advising me in my trying moments…specially Dr Tumble…week Aneesha is better now aparantly…going to college, though fatigued due to her 80 degree scoliosis and O.I…her complains of numbness in hands n feet, headaches,dizziness blurred vision,swallowing issues and cracking voice have gone now…accept for the sleep apnea…the Hydrocephallus that cropped up after d surgery is still d same though…but d syrinx is gradually becoming less…so what should be my concern now? As we are due to meet her surgeon on the 5th of March and discuss all this with him…any thing you guys feel that I need to ask him , please your suggestions will be a great help for me…The main reason for this surgery was so that Aneesha can have her spinal surgery…the occipital surgery could not take place with d duroplasty as d surgeon had already shaved of some bone fron the C1,C2 and C3 …thinking that this would help d syrinx to dissipate when he did a surgery prior to this duroplasty…but since it didn’t work he had to do d duroplasty, so there is no way he can do the occipital fusion…so what I would like to know is that If the Hydrocephallus stays d way it is and doesn’t increase or bother Aneesha…do we still need to deal with it …like shunting etc…or let it sit…she has already had 15 surgeries of her femurs and 2 now for her syrinx…plus d scoliosis surgery will be d next one…please ,please guide me…hoping to hear from you,
Regards,
Ambareen
Hey Bump; Have any of the doctors said anything about putting in a shunt to relieve the hydrocephalus? I would think it would be much less evasive for your daughter, and the shunt has brought me a lot of relief. I do not know if it is an option for her or not, but it may pay to ask.
Dee
my neurosurgeon (howard Morgan , UTsw, zale lipshy inst.) warned me off of shunts unless there were no other options, mine has been flushed replaced or revised 5 times and counting. having had the laminectomy, duraplasty and decompression all at the same time and the neck fusion 7 years later(C3,4,5), my hands are STILL numb and my balance is precarious. also i have leg drag if i overtax my limits... as for the scoliosis, mine is 28 degrees, and they are "watching it"... stability counts. brain fog, yes. light sensivity , yes( i live in sunglasses) i have to encourage regularity, because the pressure can be be VERY painful otherwise.
i found some exercises that are not too taxing on my legs and lower back, and work on my core muscles,because of the walking/lifting stairs issues. waterwalking is encouraged. weight gain is not.
i would seek a second opinion, and SOON. some doctors are better suited to listen, while others have BIG opinions of THEMSELVES.
Ambardeen, was happy to see your post! And that aneesha seems to be much better in so many ways. I do not know enough about high intercranial pressure to know when the right time is for a shunt. That’s something I have been able to avoid. I do know that several members have had an eye exam to check for pressure on the optical nerve - this is a sign that the pressure may be too high. As for the apnea…did ever talk to her NS about wearing a cervical collar, especially at night? Does she use a C-pap at night?
Aneesha starting back to college with all of this going on shows how strong her spirit is. Please give her hugs from us, we are proud. And hugs for you too 
Jenn
What an amazing daughter you have. I guess my biggest concern for Aneesha would be making her college experience as successful as possible, Forgive me if all this has been done, but at my university, how often it isn't.... I would assume she had a 501 plan in school. That same plan can follow her to college and the school disability service will help update it. There is all kinds of accommodations available and even special technologies so even the most intensive classes can have a large online component. Sometimes just getting to classes is a hassle. The student health service usually has some great group stuff going on to help lower the stress for theses kids. It is also a great mixer to develop friendships etc. Its a tough period for any kid especially one dealing with health issues.
yes…you are so right TJ1…In our country Pakistan, we don’t have special colleges to cater to kids with physical difficulties…But my daughter is very adament by nature…she has taken pre medical as her subject as she wants to be a doctor…it’s very tough for her…with her walking issues…the college was kind enough to shift her classroom to the ground floor though but last year she had to climb 2 stories every to to attend the lectures…she is indeed very brave and I am so proud of her perseverance.I just hope she gets to fulfill her dream in becoming a doctor…but her scoliosis is tiring her down with the pressure in her back…there is not a single moment I am not worried for her…the schools here have no disability plans…I am not aware of the 501 plan you have mentioned…what is it? I wish Aneesha had the oppertunity to study abroad where it would be easy for her to commute in college…well all one can do is hope for the best…she is my one and only daughter and all I can do is pray for her to be blessed…
TJ1 said:
What an amazing daughter you have. I guess my bigwould be making her college experience as successful as possible, Forgive me if all this has been done, but at my university, how often it isn’t… I would assume she had a 501 plan in school. That same plan can follow her to college and the school disability service will help update it. There is all kinds of accommodations available and even special technologies so even the most intensive classes can have a large online component. Sometimes just getting to classes is a hassle. The student health service usually has some great group stuff going on to help lower the stress for theses kids. It is also a great mixer to develop friendships etc. Its a tough period for any kid especially one dealing with health issues.
In the US, kids with disabilities have whats called a 504 plan (not 501 my mistake) Its an extension of the American Disabilities act.. While it doesn't provide for special treatment, it does provide for equal access. Many college students are unware that the plan follows them to University.
I have daughter (actually a grandaughter) with multiple disabilities that we are raising because her parents are deceased. As she gets older she gets more "stubborn" While her I'm going to do it attitude is great (something we can all learn from these kids) she refuses to ask for help or even accommodation when it would serve her best. Helping our kids to "do" while taking care of themselves and still doing our job of getting them to do their best is tough balance.
Has Aneesha pursued any opportunities to study abroad?