Community Network

1. • Yael
   • December 24, 2018

   Hi you all,
   So yesterday after 17 years from my last meeting with a neurosurgeon, I had a meeting with a new one. (I started developing symptoms since a year and a half ) He sent me to a Neuroftalmologist, ask for a new MRI and for a LP, and I`m really scared about the LP, I know its silly but I`m terrified about that test.

2. • Yael
   • December 10, 2018

   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.

3. • Laurie
   • September 15, 2018

   Hello everyone, Are there support groups in the Houston, or Katy Texas areas?

4. • Joan Bryant
   • September 15, 2018

   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.

5. • latrell jackson
   • September 3, 2018

   support groups in savannah ga area????

6. • Lai Keng
   • August 22, 2018

   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!

   • • Lakisha HA
     • August 22, 2018

     Hi Lai Keng. I am so sorry to hear about the experience you and your sister has had with the treating specialist. Please, can you email me at info@hydroassoc.org for further discussion/assistance?
     Thanks.

7. • Kevin
   • July 1, 2018

   I’m thinking of starting a support and social group in MS. I live in Hattiesburg and looking to contact people all over the state.

   Get in touch!

8. • Anita
   • June 24, 2018

   I had the surgery a year ago…my recovery has been hard in that I developed very itchy skin on my scalp …behind my right ear and down my back—as well as hearing phantom music…. I seem to be getting some of my memory back. I wondered if any of you who had the surgery had any of of these reactions.

9. • Olli Stålström
   • May 4, 2018

   Are you aware of any support groups in Finland or other Nordic countries?

   What worries me is that if I need a shunt, how will it be inserted. Do I have to undergo trepanation?

   I have seen somebody’s skull opened with a drill and an electrode inserted in the brain in an attempt to cure Parkinson’s. But this was long go, in 1969.

   What is the present method in brain surgery today?

10. • Bill Bennett
    • September 16, 2017

    Are there support groups in the Hampton Roads area?

11. • Maria luisa Munoz
    • July 31, 2017

    Alguien en Espanol que me pueda llamar?
    O agregar a grupos serca de aqui donde vivo?
    Visalia, California.

12. • Pat Papa
    • June 13, 2017

    I had shunt surgery in Dec, 2016 for hydrocephalus. I am interested in joining a support group. I live in Hunterdon County, NJ. Does anyone know of a support group in this area?

    • • Trish Bogucki
      • October 10, 2017

      Hi Pat: I had shunt surgery in May of 2015. I am not aware of any support groups in NJ but am looking into forming one – possibly online since NJ is so spread out. I have asked the HA team for information on next steps and hopefully will be in touch soon.

13. • Vera Kern
    • June 13, 2017

    Are there any groups in the Greater Toronto area of Ontario, Canada?

14. • Jan Lightfoot
    • June 2, 2017

    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.

    • • Trish Bogucki
      • October 10, 2017

      Jan: I just saw your post and hope you have gotten good direction from your loved one’s doctor. To answer your questions, I had a shunt implanted when I was 66. It is a Medtronic shunt with a programmable valve. Now it’s two+ years later and so far so good. I was able to return to working from home a few days after I was released from the hospital, and I was back in the office inside of two weeks. I am not aware of any supplements that would be helpful but do ask your doctor. I wish you luck on this journey!

15. • Anita LoCricchio
    • May 22, 2017

    Hi,
    It looks like there are no communities for Reno/Sparks NV area. Is there anyone or groups from this area with an adolescent that was born with Hydrocephaly and is shunted? He also had a TBI 7/31/16 and is experiencing different emotions and behaviors.
    Thanks!

    • • Tania Roth
      • August 17, 2017

      I have a shunt myself and live in Reno/Sparks.

    • • Tania Roth
      • August 17, 2017

      I have worked with children with emotional concerns, some with a shunt.

16. • Dodo
    • May 17, 2017

    I have a 15 month boy who’s diagnosed with hydrocephalus since 4 month old .he had two MRI done . His last one was when he turned a year . The water level is still th same .his head circumference as today is 53.5 inches. Still hasn’t gotten a shunt yet .dt said water will dried out but he is having crossed eye watery eyes n since may 6 he is eating less .so have anyone lived with it n the water dried out please

17. • veronica araujo salas
    • October 18, 2016

    hola vivo en mexico y tengo un bebe de 4 meses con hidrocefalia, nacio con este problema. lo operaron apocos dias de nacido le pusieron su valvula pero quisiera saber mas acerca de esta enfermedad, tengo tantas inquietudes.

    • • Monica
      • June 19, 2017

      Hi yo vivo en Nj tengo un niño que tiene 6 años cual quier pregunta estoy a la orden mi nombre es monica

18. • Mustapha Drammeh
    • September 14, 2016

    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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19. • Dr. Harry Lewis
    • August 9, 2016

    Both my wife and her brother were stricken with Hydrocephalus.There is a proven genetic connection of the disease. Both my brother in law and my wife were in nursing homes that were totally ignorant of hydrocephalus, and they did not get the treatment they needed.

20. • E.L. Ross
    • April 21, 2016

    Are there any groups in New Jersey?

    • • Mark Degenhart
      • March 16, 2017

      I’m in Red Bank area. My wife has shunt. Interested in starting a NJ group together?

      • • Trish Bogucki
        • October 3, 2017

        Mark and E.L.: I’m interested in joining or perhaps forming a NJ group. I live in northern NJ so Red Bank is rather far. Maybe we need a couple of local groups and then we could get a bigger group together once in a while? I’ll ask the HA team how we might get started.

        • • Pat Papa
          • February 13, 2018

          I live in Clinton Township, NJ. I would be interested in a support group. It’s a little far to Red Bank but maybe closer to you, Trish. Are you aware of any new groups being formed? I keep hoping that one of the neurologist at JFK hospital or another hospital will sponsor a support group.

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