Surgery update

[Barb]

I am almost 9 months post-op and I am doing so well. I haven't had a nerve flare for a month or more. I can't believe how much better I feel. I am still battling trigger points in my Gluteus Maximus, but I can treat that with physical therapy. She found a trigger point medial to the ischial tuberosity, so sitting is still tender, but I have been driving without my cushion.....that is a big victory! I also still have sensitivity in the gluteal fold and down my leg. I think that is irritation of the posterior femoral cutaneous nerve from the surgery, but that is getting better.

My message for everyone is don't give up! I was so miserable this time last year. I laid on the couch all the time with an ice pack. Now I am out all the time. I am walking about a mile a day and doing activities I thought I would never do again.

I am still being careful with exercising and bending over. I am still sore so it is going to take awhile to get everything back.....plus I am no spring chicken, so some of this I have to calk up to my age, but I am thrilled at how far I have come.

Don't give up! There is help. You may have to go through a lot before you get there, but there is help.

Barb

[Laramarie]

Hi Barb
That is great!!!! I am so happy for you! I am now 6 months post op and still suffering badly. Just returned from 2 nerve blocks with Dr Hibner. I'm trying to stay positive but it's very difficult. You have given me some hope..... Please keep posting!

Take care....

Lara

[nyt]

Fantastic news!

[river133]

Certainly wish I could say that surgery has helped. I had 3 decompression nerve surgeries. I am now coming off of the nasty opiots. I just decided did not want to expose my body any longer to that crap. It is difficult. My nerves are irreversibly damaged. They will never heal, they were damaged much too long. I am coming off of oxycontin with soboxone. The Dr.that administers this to me, said that we would keep increasing the dose. Oh, soboxone is what is used to help one come down off of narcotics. I put my self into treatment but only lasted two days, my pain was so horrific once they cut me off. I signed myself out. I am home now and am going through withdrawls. I will do this, there is no doubt in my mind. Pray that the saboxone works. Lord just take some of this pain away.

[Barb]

Hi river133,

I am so sorry you are suffering so much. I hope the soboxone works for you. This is an insidious condition. I certainly don't have my life back to where I was before all this started, but I am better since the surgery. I still take 1/2 of a tramadol a day (25mg), but I think I can stop this without having much problem. I am also cutting back on the neurontin. The sad thing, probably for most of us, is I never took anything before all this started.

I wish you all the best with getting through this and that your pain will lessen.

Regards,
Barb

[Barb]

Hi Lara,
In what area did Dr. Hibner do the nerve blocks? Does it take a while for the nerve blocks to kick in? I hope you get some relief soon. I got an email a few days ago from Dr. Aszmann. I had written to him a while back to ask him a question about the residual tenderness in the ischial tuberosity and down my leg, but before I got the answer from him, my physical therapist found the trigger point next to the ischial tuberosity. It obviously has been there a long time, so it is going to take a while to work it out.......and boy does it hurt!

Dr. Aszmann did say the other sensitivity is probably the posterior femoral cutaneous nerve and that a nerve block would probably help. I think I am going to wait because it is already starting to get better. I am sure that nerve was probably disturbed during surgery and we know how long it takes for nerves to heal.

I really didn't start feeling a lot better until 7 or 8 months after surgery. The changes are so subtle, it really is hard to tell. I started doing more and not suffering excruciating pain at the end of the day. I still have to be careful though........I don't want to overdo.

Please let me know how you are doing. I really hope and pray you see some improvement soon.

Take care,
Barb

[Laramarie]

Hi Barb
Dr Hibner did a left perineal nerve block because I had a "broken glass" type of feeling in that one area that was numb but all of a sudden that came back to life! It was excruciating 24/7! He have me a General anesthetic and did the block with ultrasound guidance. I was numb for 24- 30 hours (all the way back to Canada I was numb) and now I have absolutely no pain at all in that area).... That was on June 5th! Yah!!!! My other block was on the same day but was a pudendal block and Dr Hibner was convinced this was not nerve related pain but muscle spasm..... But since I was already in Phoenix we decided to do the block anyways. I got the same amount of numbness but I still had the rectal twisting type pain afterwards and couldn't sit..... So I am going to start back to a well known PN aware physio to help me get out of this mess with my rectal muscle pain. I have been waiting for this PT for 4 months already!!!!! She is supposed to be good! Loretta gave me some stretching to do in the mean time and it is helping a little. It is still pretty much 8/10 most days though in that area but I am hopeful still.
I am so happy for you Barb..... Please keep posting!!!!
((((Hugs)))))

Lara

[Barb]

Hi Lara,

Glad the "broken glass" feeling has calmed down...... Ouch! The other thing I was going to tell you is I have also had some rectal spasms which the PT is also helping. She is treating the Levator Ani muscle on the other side from the surgery where I had the remaining mesh removed 2 weeks before I went to Vienna, so those muscles are a mess. The treatments have helped a lot, but everything takes time.

Hang in there. I hope things keep getting better

Hugs,
Barb

[Violet M]

Hey Barb, soooo glad to hear you are doing better! Take it easy and don't try to do too much.

Violet

[Barb]

Hi Violet,
Thanks. I'm glad I am doing better too. I would really like this sensitivity and soreness in the gluteal fold to go away, but I hope that is just an irritated PFCN and it will calm down over time.

I have had a couple of days that my left side (opposite side from surgery) has really been angry......no nerve pain, thankfully, but it seems like the levator ani muscle, or piriformis or SI joint have really gone into overdrive......very painful. Did you have any trouble after your surgery on the opposite side from your surgery? I go to PT this week, so I hope she can pinpoint the exact problem.

I am still feeling happy that the pudendal nerve seems to healing and I have a chance to get some of my life back.

Take care.
Barb