NPH

Sorry to hear you're having such a worrying and frustrating time. Is your husband in pain or suffering at all?

Lumbar infusion carried out on August 20th and follow up clinic appointment changed to September 21st after I rang the consultant's secretary to ask why we had to wait 8 weeks for results of tests to determine treatment of a degenerative condition. Results now 4 weeks rather than 8 after the infusion test and only 13 more days to go. The secretary also said that, if DH is offered the shunt operation, it would not be too long to wait as it is regarded as urgent. It is now 6 months since we went to our GP so I guess the NHS definition of urgent is not the same as ours......

Phone call from Addenbrookes yesterday - clinic appointment in mid October to discuss findings of lumbar puncture which will be done in the next six weeks.
So progress, but another 3 months until we know whether DH is a suitable case for treatment with a shunt.
That will then be 5 months from our first GP visit, with tests but no treatment to relieve the symptoms and an unknown further wait if a shunt is recommended. What happened to the "18 weeks" promised by the government?

Oh yes indeed Willow500 but I have had several over the years and I have always been made to lie completely flat (no pillow) afterwards and raised very slowly over a period of several hours. You certainly can't just get up and walk about after it.

I'm sorry I don't have any information on how long your DH will have to wait for his treatment but just wanted to say someone I know has recently had several lumbar punctures due to encephalitis and has always been ok after them. Gillybob unfortunately you must have some kind of adverse reaction - hopefully it won't be the same for the OP's husband.

Oh do ask lots of questions when your DH does get his appointment, as from experiences I have never been able to even sit up for many hours after a LP.

Dilemma - I hope they prove helpful. Just being given time parameters should help although I hope the wait is not too long for the sake of both of you

Suziewoozie - thank you; I have sent an email to PALS at Addenbrookes.
Gillybob - I will keep your experiences from my DH; the LP is supposed to relieve the NPH symptoms temporarily so that he would be able to walk normally and think logically for about 24 hours.

Sorry Dilemma

I don’t know how long the wait will be for your DH* Dilemma* be couldn’t just read and run without saying that I have had a few LP’s in my time . Please don’t frighten your DH by repeating this but I have always been quite poorly afterwards . Last time it took me days before I could even sit up without being extremely sick and the headache is like something I can’t describe. Please tell DH to do everything ( even sitting up) very gradually ( I mean a tiny bit at a time) and not ty to rush anything . I wish him the very best of luck for a speedy recovery .

Dilemma - you must be so worried. If I were you I’d email the PALS at Addenbrooks with this question and ask them if they can find out or at least tell you who might be able to give you that information. Good luck