[LESLEY]

Having had a trial dose for intrathecal baclofen over a year ago now, i was having second thoughts of going ahead - there have been funding issues which are still not cleared up, and also i had to undergo a test via cardiology which has held things up somewhat.

However, since discovering this site, i have decided that i may well take the option of surgery up.

Thank you to the contributors to this site, you have all assisted me in making a decision which i hope will prove beneficial to both myself and my family.


LESLEY X

[juls]

Good luck with the surgery, LESLEY....I hope it all goes well and you're not in hospital for to long

[cvelusc]

Best wishes Lesley!

[davebahm]

Hi Lesley,
I wish you the best of luck... I truly do. Apparently this surgery affects each of us differently, but if I had known six months ago what I know now, I probably wouldn't have done it. It's been over five months, and the bad effects continue to FAR outweigh the good effects. I'm just angry and frustrated, and wonder if I'm just kidding myself that I'm going to improve substancially beyond where I am now. Muscle weakness all over (especially the first hour or so after waking up), minor bowel and urinary troubles, can't dress myself anymore, no problem getting and staying aroused when making love with my wife but extreme difficulty having an orgasm, and still tight muscles all over! I rarely had trouble in these areas before this stupid surgery, except of course the tight muscles. At least the spasticity is a lot less and my wife can stretch me without my legs fighting her. That's the ONLY good thing this damn pump has done for me, and many times a day I question if that small improvement was worth all the hell I'm going through.

Maybe the next several months will see improvement in my functionality. I will continue to work at my job, drive, create art, love my wife and stay active, and I'll continue to portray a determined attitude to those around me as much as possible (most have told me they see nothing but positive vibes from me). But I'm just not sure how much more strength I can muster up to combat all the negative this baclofen pump has caused.

I apologize for ranting...hope you understand.

Dave

[meme]

[size=5]hi keep on going it took my pct 8months to sort it out so keep asking them when they will sort it out WERE R U HAVING YOUR PUMP DONE
MEME

[LESLEY]

Thanks for your honest account, and apologies for not replying sooner, have been busy as usual. Have appt with dr on 26/1/07 to discuss before surgery which is scheduled for 14/2/07. I also have my misgivings for all the reasons you were "ranting" about, i rant about them too on a regular basis!! Would you have rather stuck with the oral muscle relaxants in tablet form if you were honest or do you think you went into it with too high an expectation of what the pump could do for you? This is not a criticism, but something i am trying to weigh up. It would just be hell for me if i lost my independence, i am fiercely going to protect that at all costs!!!!

I watched your video clips and read your accounts regularly, very interesting, thanks for your time.

Look forward to hearing from you.

LES X DO I OR DON'T I? THAT IS THE QUESTION!!!!

[LESLEY]

Thanks for your message surgery in oswestry shropshire on 14/2/07 hopefully, have plenty of reservations though, any tips or sound advice to share from you guys here however large, small or indifferent would be very much appreciated.

LES X

[meme]

[size=4] HI i am just 5 weeks after havin it done it was the best thing ever. i hav a great doc who will alter my pump when i ask The op was not to bad you will have a lovley scar on your belly(haha) and if the pump is working right you may even gat a little flabbi due to the spasms stoppping (THATS WHAT I GOT SO I AM ON A DIET TO GET RID OF IT) I hope i goes ok it is a good idea to keep a record of how you legs are when u hav it so u can look back to when things are good or bad meme

LESLEY, on Jan 4 2007, 02:28 PM, said:

THANKS FOR YOUR MESSAGE SURGERY IN OSWESTRY SHROPSHIRE ON 14/2/07 HOPEFULLY, HAVE PLENTY OF RESERVATIONS THOUGH, ANY TIPS OR SOUND ADVICE TO SHARE FROM YOU GUYS HERE HOWEVER LARGE, SMALL OR INDIFFERENT WOULD BE VERY MUCH APPRECIATED.

LES X

[LESLEY]

Thanks for the words of encouragement!!! Will keep you posted, send me your diet tips just in case!!!!

Take care, keep in touch

LES XX

[DAWN]

meme, on Jan 13 2007, 05:59 PM, said:

[size=4] HI i am just 5 weeks after havin it done it was the best thing ever. i hav a great doc who will alter my pump when i ask The op was not to bad you will have a lovley scar on your belly(haha) and if the pump is working right you may even gat a little flabbi due to the spasms stoppping (THATS WHAT I GOT SO I AM ON A DIET TO GET RID OF IT) I hope i goes ok it is a good idea to keep a record of how you legs are when u hav it so u can look back to when things are good or bad meme

LESLEY, on Jan 4 2007, 02:28 PM, said:

THANKS FOR YOUR MESSAGE SURGERY IN OSWESTRY SHROPSHIRE ON 14/2/07 HOPEFULLY, HAVE PLENTY OF RESERVATIONS THOUGH, ANY TIPS OR SOUND ADVICE TO SHARE FROM YOU GUYS HERE HOWEVER LARGE, SMALL OR INDIFFERENT WOULD BE VERY MUCH APPRECIATED.

LES X

Hi Lesley,
A few words.........do you know how strong you are underneath your spasticity??? The stronger your muscles are, the better it will be for you once you get your pump. My doc was pleasantly surprised at how strong my muscles still were. I didn't rely solely on my spasticity to walk before my pump, I did use my muscles, but for the past 8 -10 years walking had gotten so difficult for me due to lower back pain-due to tight muscles-due to spasticity (I'm sure you can relate) that I was hardly walking anymore because it was too painful. I could hardly even sit up. For me, the pump has been a life saver as far as the pain goes. I am completely off all meds now - both muscle relaxers and pain narcotics. This is a biggie for me. Oral baclofen just doesn't work as well as the pump, not for me anyway. I had a horrible time with the orals. Many years ago I was taking large doses of baclofen and became extremely depressed. Ended up at a psychiatrist and the whole nine yards. NIGHTMARE!!! Since that happened I had shied away from baclofen all these years - I was also fearful of the pump for many many years because of the depression. I was told of the pump as long ago as 1994 - I wouldn't hear a word of it. Then last February I found myself at a new doc actually discussing the pump because I just couldn't bear to exist in that shape anymore. The trial made me feel as if I could conquer the world. This is one of the problems with the massive dose we get for our trials. If your muscles are as tight and spastic as mine were the last few years, then you too experienced a great trial, I'm sure. I felt really loose and very different after my pump surgery also. I was in the hospital for 18 days, during which time I had therapy on a daily basis. I hadn't felt so GREAT in years. It is now 11 months later - I am still working on getting to my optimum dose and I continue to remain tight. I am again in therapy on an outpatient basis this time and working with a wonderful, innovative therapist who I think is going to help me make a big difference in my body/walking. I say the benefits of the pump well outweigh the downfalls of the orals. I wish you good luck with your surgery and your outcome.

Take care

Dawn

[LESLEY]

Dawn, thank you so much for your message. It was everything i needed to hear. Our symptoms in relation to both spasticity and depression are frighteningly similar! I noticed a marked deterioration in my condition shortly after the birth of my daughter in 2000, probably not helped i must stay by post natal depression too. However, after several "bad episodes" and the loss somewhat of my independence - i am now using a wheelchair more often than not, something i vowed i would never do at this stage - i'm 39, however, needs must at the moment. I am looking forward to being able to go out and about my business without needing to have someone with me. I am afraid i am not very compatible with a five o'clock shadow with me all of the time!!! It drives me nuts!!!

However, onwards and upwards!!! Will keep you posted, seeing doc on 26/2 and then surgery still scheduled for the 14/2.

Thanks once again, keep in touch,

LES