Shunt catheter, pain, nerves, infection?...

[mjb1966uk]

Further to my recent posting "reassurance needed" regarding the pain / soreness at a point over the catheter, just under the clavicle.

I've now been to see my GP. She was unsure about the cause, but said it could be a locallised infection and has given me an antibiotic (flucloxacillin). She also suggested it could be that the catheter is irritating nearby nerves in the upper chest.

What I thought was a "gap" in my catheter, I think is just lumpiness due to scar tissue.

Does anyone know: is it possible to have a local infection (ie one that doesn't affect the whole shunt? Also, does anyone have experience of the distal catheter irritating nearby nerve endings?

I still (fingers crossed) have no obvious shunt malfunction symptoms.

My GP says she'll refer me for a consultation with my NS if a combination of antibiotics and anti-inflammatories (diclofenac) doesn't work.

What scared me is that she said if the shunt tubing is causing nerve pain, it may have to be moved!!!

Mark.

[gill105]

Mark, im glad you went to your dr and got seen to. As im still new to all of this i dont have much advice but hope the antibiotic works

gillian

[mjb1966uk]

Hello everyone

Sorry to go on about this, but as you can appreciate, I'm still a little concerned.

I really don't think my pain is anything to do with infection. I doubt you can get a local infection next to the shunt without it spreading and necessitating a revision. I'm still taking the course of antibiotics though.

Yesterday there was no apparent pain at all. Today it's back.

I sit in front of a PC all day at work (posting here mainly, work's a little quiet at the moment :))

So every now and then I have a stretch (arched back, hands behind head, that sort of thing, to loosen up.) I did that when the pain originally came on a couple of weeks ago, and the same happened today.

My shunt catheter is a lot "stiffer" than it used to be, and bumpy, no doubt due to scar tissue and calcification.

What I'm thinking is that these stretches, or any major movement that causes the catheter to move slightly, might be affecting the scar tissue and causing the soreness.

I know there are many posting on this subject, but just so I can relate these to my own problem, could anyone who has had scar tissue problems / pain, please let me know what the pain was like, how it was affected by movement, and what was done about it.

By the way, apart from this soreness I feel just great, so no symptoms of shunt malfunction (touch wood, cross fingers etc. :))

I'd really appreciate any help.

Mark

[jadiee-x]

hi, i had my shunt revised a month ago now, 5 days later i had mytube reinserted into my peritoneal cavity as it had coiled out, this didnt work and the tube just coiled out again, so had the surgery had to be redone again the next morning in a different incision by my belly button, which is about 2 inches lower that the previous site of incision. since that night of the surgery i have had these horrible groin, abdominal and rectal pains. and when i come to think of it after reading these posts, my collarbone and my shoulders ache quite a bit. that might just be me reading into it a bit.
anyone experienced these pains from the distal end of the catheter? and does anyone have any suggestions as what may be causing it?

[hydromom]

Hi

Sorry about the pain. Google the word SHUNTALGIA. It may help.
Good Luck
Marilou

[CathyE]

Hi Mark,

Since you described the stretch causing the pain, I decided to re-post about my Osteopath "releasing" my scar tissue to stop scar related pains.

Surprisingly it is in my reply in "toe curling" :D

I'm not so sure it's the best explanation I've given, so feel free to ask me some questions. And good luck!

Cathy

I decided to copy it here for simplicity sake!



Well, since I think I have the same problem and think I have a solution for it, I will explain.

I was very fortunate to have a co-worker who had osteoarthritis, told me about her fantastic massage therapist. That was early 2001. Since then he has completed to Osteopathy training, so he also does cranial therapy and has excellent knowledge about the brain body connection.

My incision for my shunt crosses my diaphragm, apparently a bad spot for the surgeon to use!

Our scars can pull on “everything and anything” In our body. He explained it’s like pulling up in the middle of a tablecloth, you can see the affect radiate out all over the tablecloth.

Well, yesterday I had him “release” my incision/scar tissue again as I hadn’t seen him for quite awhile for this. We had been focusing on cranial/sacral therapy.

When I told him that often when I’m feeling poorly, when I swallow my food, my stomach spasms and it is quite painful!
My pain actually radiates up to my forehead and right ear. And that endds my meal!

It is his Osteopathic training for this technique.
I warn you not to see someone who has taken a few “mini” courses! He studied for 5 to 7 years? (not all day as he was still pracicing as a Massage therapist)

Anyway, his treatment really settles it down after 1 or 2 treatments. Yesterday he was applying pressure to a spot & I told him it was probably the most painful spot he had touched. He said the bottom of the Esophagus is just above where he was pressing. Now I understand more that ever. Oh, it’s not so much the incision, but the scar tissue. Some people “grow” more than others.

An osteopath can be VERY expensive and is often not covered by health plans. I am lucky he is such a caring individual he only charges $75 for an hour and $40 for a half hour. Since I need to see him on a fairly regular basis, he suggests 30 minutes is enough for me, so it is affordable for me (plus I have coverage from my health plan from the company I worked for even though I am on LTD, and have been since Jan/01. So, the first $500 is free for me! (but I distribute my claims so I pay a bit from the beginning, not all at the end!)

Sorry this is so long, but I tend to over explain things!

Good luck,
Cathy
PS He also resolved 2 bad situations of my peritoneum not absorbing the CSF! The first time I actually looked pregnant! He is excellent and so caring!

[darren]

I say ditto as your description of your problems sound a lot like mine. I've had ongoing abdominal pain for 7 years, there were gaps in the early years of no pain, but it's been with me every day now for the last 3 years.

The pain I have is just below my ribcage at the bottom of the shunt at one side and then where it ends over at my other side. The pain can be moderate to extremley severe where I struggle to get a breath - when my lungs inflate it appears there is less room for the shunt and the nerves press the shunt and cause blinding pain. I often have problems after a large meal, as the same thing occurs.

I too have congenital hydro, was shunted at 6 months old, then had no problems until 8 years ago, I had a revision 7 years ago then a few more just after that. My abominal pain began then. When I got home from hospital I collapsed with the worst pain of my life, was taken back to hospital and they thought it was an infection -it wasn't. I've tried everything I know to try and get rid of the pain including, mri, ultrasound, many drugs most of which were for neuropathic problems similar to what epilepsy are for, I don't have epilepsy but they said the drugs would help - they didn't. I was reffered to a general surgeon, homeopathic hospital, various pain clinics and nothing has worked.

It was suggested in the beginning (when I was constantly fobbed off by the neurosurgeon) that it was scar tissue and that it would heal, it never did. It was then suggested it was in fact nerve damage. It's never been diagnosed through an actual operation with someone seeing damage - not sure if this is even possible but it's what I would have liked so that I knew for sure what the problem was. The neurosurgeon didn't want to do further surgery on my abdominal end as he was concerned that further nerve damage and or scar tissue would occur. He said he will only do it if it's life threatening.


I recently got in touch with a good pain clinic and have had two opeations/procedures on my nerves that are causing the problem, it wasn't a pleasant procedure as I had to be awake during it, to tell them where the problem was.

I'm telling you all this as I would urge you to fight this until you get a resolve, I truly hope you don't end up like me and hope that whatever is causing your problem it's a quicker fix. I don't really think your gp should be helping you with this it's not his area, if you have a shunt problem or at least a suspected shunt problem then ask to see your neurosurgeon asap and tell them you can't wait if the pain is that bad, as they will end up adding you to their clinic list which could take a while.

Sorry my post is not the reassurance you were looking for. I wanted to tell you that pain like this can occur with shunts and it needs looked into. It may well be that yours could be moved and the pain would stop. The neuro would probably only do a lower end revision, but sometimes they can't and need to do a full revision and they would only do this if they really had to and there were no other options.

I hope you get something sorted soon.
Darren