Primary angiitis

Need help,feeling very unsure.My neurologist wants me to have a LP.If inflammation is there he wants me to have angiogram and then possibly a brain biopsy.I have high wbc and have had visual loss in one eye among with pins and needles in hands and feet.Really scared.Have no idea what is in store next.

[Hidden]

 Are you under a great consultant?  If so, might be useful to consider yourself lucky to be able to access this vital investigation to have a possible conclusive answer (and the correct treatment plans). 

Be brave and good luck!!!   

[lfu2]

Male, 70 years old with Wegener's.

Hi Jan85uk, 

Treat it one step at a time. I have had a lumber puncture. it is nothing to write home about. The worst part is the coldness of the cleaning fluid on your back prior to the procedure. The LP takes about 15 minutes and is relatively painless. .. just a bit uncomfortable. One brief feeling of pressure while they position the needle to extract the fluid. And that's it. Get up, get dressed and go home.

I have 2 friends who have had angiograms... all they complained about was the small bruise in the groin where the catheter went in. And once again a relatively short procedure. They didn't feel any pain.

The brain biopsy.... sorry no help there at all. It is something that the consultant talked about but it never happened... but I think they mention it just to have all ends covered.

All the best.... the anticipation is usually 10 times worse that any procedure.

[woollysox]

Hi Jan, 

I had two lumbar punctures early last year after 3 strokes in 3 weeks. They were no problem at all, didn't hurt as the area was anaesthetised first. When the docs found inflammation I was sent for an angiogram (had to lie still for a long time but very interesting watching the screen) on analysis of which they diagnosed cerebral vasculitis. The important thing is to get a diagnosis and start treatment as quickly as possible before lasting damage occurs. 

I hope this helps, you're welcome to pm me for more info/details if you want.

[Hidden]

Thank you everyone for your reply. Very helpful.I do have just one more question.How long is the wait on the nhs for a lumbar punture?once the neurologist has requested one.Thanking you in advance.Also he has reffered me to a different hospital for it.Does this mean the consultant there will be sending out the results??as I have received another appointment to see the neurologist that requested it not till December.Bit confusing. ...

[Sima1952]

I would love to be able to help with regards to all of your issues - do you have Vasculitis - but l can't, having said that you mentioned about having to have a LP, l have had 4 now over a period of 3½ years; 1 in the first week after losing the sight in one eye, and l can assure you that, like you l was scared, as none of the doctors gave a good explanation as to why l needed the lumbar puncture!  Anyway l had a good doctor each time they were done - although l did have to mention about my lumbar region being a mess - and they just gave me more local.

If you do have Vasculitis or it's been hinted at then go to this website - its not American - vasculitis.org.uk the home page has various subjects plus there is a "Contact us" tab in the topleft-hand corner.  Best of luck.

Sally

[Sima1952]

Looks like l've been beaten to it with my response; that'll teach me to learn to type faster

[Hidden]

Hi Jan85uk, 

You shouldn't have to wait for investigations if they are querying a diagnosis of Central Nervous System Vasculitis ( CNSV ) especially if you have visual loss. As with other types of Vasculitis early detection and appropriate treatment by Dr's experienced in Vasculitis is the key. December is far too long to wait! 

You can phone or e mail the VUK helpline for advice

vasculitis.org.uk/helpline

Unfortunately as CNSV is so rare we find that treatment varies up and down the country and some patients are very poorly treated. 

[MiaTilehurst]

The lumbar puncture should not be problematic if you plan for a few quiet days after it. I experienced a bad headache after mine. I have CNSV and had visual disturbances, loss of hearing and pins and needles in hands and feet. I did not have a brain biopsy - my choice.  I was diagnosed using MRI and MRA scans instead. Much less invasive. Has this been suggested?

[BronteM]

Having a brain biopsy sounds very frightening, but perhaps you mean a temporal artery biopsy? They are done if there is a suspicion of large vessel Vasculitis or GIant Cell Arteritis (GCA). A small piece of artery is taken from your temple; as there are plenty in your skull it is one that won't be missed. I had one four years ago...under local anaesthetic so I was really scared about it. In fact it really wasn't too bad. I've just had a cataract operation and I would compare it to that as you have to lie still for quite a long time, and the most painful part is when they give you the anaesthetic. The rest is rather boring! 

I recovered from it very quickly and the scar is now hidden by my hair. Haven't missed the bit of artery as far as I know. Good luck, and I hope all the tests go well.