Community Network

Hi you all, I was diagnosed at 18 with obstructive hydro. They were looking for the reason of my constant headaches but I was told that this wasn’t the cause, so I had no symptoms whatsoever. I’m now 44 and recently I started getting dizzy sometimes, I no longer can go down in electric stairs, feeling exhausted and started to forget things, but this doesn’t happen all the time, 3 or 4 times I have felt that my scull is smaller than it should.

I live in Bakersfield,Ca. my husband is rapidly declining needs shunt surgery broke foot and they don’t want to do anything until he has a spinal puncture to see if the shunt will do any good. mean time can’t have test until his foot heals to test his gait. I need a support system caring for him is harder all the time.

I am younger sister to my eldest sister who just had surgery (VP shunt) for NPH. Even my sis herself had experienced awful level of fears when she initially developed memory loss, then gait imbalance over a period of over 2 years. Initially her fear was she might have tumour in her brain. Because of fears, she did not shared her concerns with her daughter. Because I live 8hr air flight from her who lives alone. I had nil idea the significant change in her behaviour -depression, memory loss and gait im balance. On a recent home visit (8 weeks ago ), I mobilised investigations, although she was relieved that there was nil organic cause of her life changes, it was recommended that she has a magnetic valve programmed shunt. Sadly, the surgeon who performed the procedure had not been very helpful, we had to squeeze all the answers (ie does she require physical therapy to improve balance, does she need any cognitive therapy to help improve her memory. The only answer that was given was “the damage is there, memory effeciency will be the last to improve” He did not go further to suggest any help or support which and where we are able to source. He gained his neuro training in Canada, UK and Malaysia. I am really disappointed at his attitude of supporting patient and family given we had had numerous month of sleepless nigths and days worrying about my eldest sister. His only comment to my sister was”auntie, you are alright” This actually has done more harm than help to ny sis for she believes that she has been “cured”. We had not been given any info as to where to source info re aftercare. I am 71 and I am a retired RN, I am really disappointed at this neuro -surgeon, who spoke about dr and patient, so called bedside manner, etc. He had delivered bare minimum of what he ascribed himself to be. SO I need as much info resourcing support or advice about after care, all idea and advised are greatly appreciated. More important, we have an appointment to have her review in 3weeks, please anyone and everyone, help us to “frame”our question to obtain answer from him!

I do not see a Colorado Springs group. It took 1 decade, and 3 visits to different neurosurgeons, to have my loved one, get a primary diagnoses of NPH. The name seems i contrary to the problem of abnormal cfp pressure. I wonder which stunt is the best for a 66 year old?

I seek names of shuts in places and how they work. 719.4653454. Also how much time must be taken off of work after the procedure? and if their is medication or natural supplements that work, for nph? As a care giver, I would be grateful for Any first hand information on this topic.

My name is Mustapha Drammeh and I am writing on behalf of my sister Mariama Drammeh, born May 22, 1983.

Mariama was diagnosed with an undisclosed illness at the age of 12 years that ultimately impaired her vison and is in need for medical assistance. She is originally from The Gambia, West Africa, and is currently in the United States on visitor status.

She had two surgeries since December 1993 and June 1994 prior to loosing financial assistance to continue her treatment. Currently, her medical condition is developing new signs that are rapidly spreading all over her body.

Therefore, after several failed attempts to see a doctor via the UW Public Health system, I decided to drive her down to the Dean East Urgent Care Clinic this morning September 3, 2016 to further evaluate her condition.

The Physician Assistant who was unfamiliar with her medical condition made some recommendations to further evaluate her condition through qualified specialists. Given the intricacy of her medical condition and the kind of resources required to examine or treat her medical condition, she also gave us Dean Health’s Patient Relations contact to see what resources are available for help.

And so we are kindly seeking help in any shape or form to find treatment for Mariama as soon as possible. Her details are available on the Chart in case you need further information. We hope to hear from you soon.

Thank you!

Mustapha Drammeh
E:mdrammeh2@gmail.com
C: 1(608) 658-5426

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Are there any groups in New Jersey?