Gabriel's Life » General

advice


(8 posts)

  1. betty
    Member

    hi

    simple question - well not simple to me!!!

    is raised intercranial pressure the same as hydrocephauls - are the 2 things the same?

    i was told i had hydrocephalus - now i am being told i dont.....but i have a shunt so im pretty confused about what it all means! why would i have the shunt if i didnt have hydro??!!!! i have had very high raised pressure last year - so i am very confused as to what is really wrong iwth me - i feel like i keep getting told different things and getting very fed up of it!

    Posted 11 months ago #

  2. ledmom
    Member

    I am not a doctor. My son has hydrocephalus. I believe that hydrocephalus causes raised pressure. Hydrocpehalus occurs when the spinal fluid does not flow as it should- lots of different reasons. They can be born with or acquired. My son's was acquired due to blockage by a cyst. You might want to check out the hydrocephalus association website for moe reasons. Increased spinal fluid built up in the ventricles of the brain causes increased pressure. A shunt causes the spinal fluid to drain and not build up and will hopefully keep pressure in a "normal" range. As to your specifics, I can not answer...but hydrocephalus can cause increased pressure (along with all of the side effects of the increased pressure--- headaches, vommitinf, disorientation, confusion, gait and behavior changes, and others)

    I am just trying to give you some quick feedback. Verify my information by checking the HA website.

    Posted 11 months ago #

  3. betty
    Member

    thank you

    i feel like everyone is telling me something different - im getting fed up now!!! i started last june when i was told i had raised pressure - then i had a lp shunt fitted as the pressure was still high

    i have a letter from about septemeber where the hospital doctor said i had hydrocephalus in jan they said i had raised pressure and the lp shunt wasnt working which is when i had the vp shunt fitted - i was under the impression that i had hydro - then i got this letter saying that it wasnt hydro - i have asked someoe but they dont seem to be able to give me an answer for it! mmy last scan before christmas said that the fluid wasnt draining properly.

    im the sort of person who can cope with things better if they have a name to them so when i wwas told it was hydrocephalus - i didnt like it and still dont but at least it had a name so i could try and make sense of it - does that make sense??!!

    Posted 11 months ago #

  4. ledmom
    Member

    I can understand the need to get a diagnosis, get information and react. Could you ask your neurosurgeon for a written disgnosis?

    We email our son's neurosurgeon's office physican assistant and get very complete answers. Maybe your office's receptionist can recommend to you someone in the practice who could completely and patiently discuss your diagnosis. Also, our children's hospital has a social worker who will explain hospitasl records to the patients/parents.

    Posted 11 months ago #

  5. mp327
    Member

    Betty--

    I would suggest scheduling an appointment with your neurosurgeon for a consultation, allowing time for you to explain all of your confusion and concerns over the differing diagnoses. This will give him an opportunity to understand your frustration and to give you a very clear and detailed explanation of what your diagnosis is. I realize this means another office visit and charge for his time, but if it clears up all your questions, I believe it would be worth it. When you go for a regular appt., which is for exam only, the doctors have a tendency to rush in and rush out and we forget to ask all our questions. Go with a list of questions and don't let the appt. end until you have answers to all of them!

    Martha

    Posted 10 months ago #

  6. betty
    Member

    i had an appointment with him a few weeks ago and he explained alot of the things i had been through last year - then he sent this letter that said i had a high pressure disorder but didnt develope hydrocephalus!!!

    it just all confused me! im am tire of going back to the hospital and coming away more confused! he did diagnose me with hydro a few months back! i feel he has to actually sit me down and tell me exactly what i have!i find that i dont get told what i have - for example i was told originally i had a kink in my spinal cord and a cyst in my spinal cord - when ive done further research i found out this is chiari and syringomyelia though ive never actually been told this!!!

    i just give up with teh doctors really!

    Posted 10 months ago #

  7. mp327
    Member

    Betty--

    If your current physician is not giving you clarity on your issues, then if I were you, I'd pursue a second opinion from another doctor. If you do this, make sure you take any films of studies you have had, along with copies of all impressions, lab work or any other studies that you have had to prevent unneccesary repetition. Also the operative reports from your surgery or surgeries, so that the new doctor will know exactly what has been done previously. I wish you the best in your efforts to seek answers to all your questions.

    Martha

    Posted 10 months ago #

  8. betty
    Member

    thank you - this is something i have thought abuot alot - i feel so confused and pretty fed up with it all - i do like my surgeon alot but then i have a right not to be so confused and to have the answers!

    at the moment i have asked other people i know but they cannot seem to give me any answers either - i have all my hospital notes and scans but at the moment they are with a solcitor so i dont have direct access to them. i do really want to see my hospital notes for the vp surgery though as i was told it was very difficult to fit so i want to know exacctly what happened to me when in theatre!

    another question if anyone can answer - i wear glasses and the area right above my ear is getting more and more painful from the glasses - even twhen i dont have the glasses on it is very painful-i am going to try get my glasses changed but i presume they are lying on the shunt causing me pain - has anyone heard of this - is it normal- i dont go back to the hospital for a few months and really do need my glasses but the pain is getting realy uncomfortable for me!

    Posted 10 months ago #

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