Pudendal decompression nerve surgery

[Christinercannon]

What should be expected the first year after having this surgery? I'm not sure when people can tell when they are ready to get back to work, etc. I've had this surgery and it is still painfully to sit. I spoke to someone who went through this and she said the first year is a roller coaster. This is the 3rd surgery in a year I've had and I find myself sleeping a lot!!!! I can start reading, watching tv, etc and bamb I'm out for 2-3 hours. Then I can lay back down and sleep all day and night. My body feels to heavy to get up. Is this a sign of the distress I've gone through this past year? Should I sleep when my body tells me to which has been all the time lately? Any advise on the first year of recovery and when I get complete control of my bowls and bladder control back? Thank you

CC

[janetm2]

Welcome CC,
Wow, you are a trooper, 3 surgeries in a year especially with PNE as one of them. I do hope eventually things sort out though I did not have bowl bladder issues so I cannot give a timeframe for recovery of those. Also my PNE was not from hysterectomy per your other post but I can give you my PNE recovery info which may be only partially applicable as the 3 surgeries may have wiped out your body's reserves and take more to recover. I will say my surgeon was overly optimistic when he said I could drive and go back to work in 4 weeks. I think I went 2 miles and trying to stayed leaned back was honestly too scary. Work was also a daunting idea. My surgery was May 2011, by August I thought maybe 2 hours a day and was very slow to get up to 6 hours a day by Christmas. I got Family Medical Leave Act leave without pay to cover the missing hours of the 8 hour day I should work and wanted to try to enjoy the holidays so did not get to 8 hours until 2012. I so went with many kinds of therapy so 8 hour days were rare and given my 2 years left to retirement and still can afford the LWOP I do not want to risk relapse and work only up tp 7.5 hours probaly average 6 hours with still seeing psychologist and acupuncture (PT finally ended last year but I also did water therapy for 6-7 months) and of course pain management for both the residual PN and my chronic foot pain, all of which shorten my work day. I got a custom Roho cushion for my old wheelchair and use that at work to sit most of the work hours. I guess the advise mostly is to not overdue things if it hurts slack off that activity. I did got to PT starting 6 or 8 weeks post surgery with nerve glides to avoid scar tissue build up per surgeon reccommendation and PT amd acupuncture were remarkable healers. Janet

[Violet M]

CC,

I was able to start sitting and to count on a decent day after 18 months post-op. I can sit for quite a few hours now -- for instance if I attend a conference I can sit all day without any difficulty but I do have to be careful what type of chair and I can't sit all day every day. I don't know what your job is but when you go back to work would depend on how much you have to sit.

If sleeping gets you away from the pain I don't think it's such a bad thing to sleep as long as you are moving around some during the day. I can't answer your question about bowel and bladder control since PNE and surgery didn't really affect that in my case -- it just caused urinary frequency. Did you get that as a result of surgery and if so, how long has it been since your surgery?

Violet

[Ccannon]

I had decompression nerve surgery last November. I thought my depression would get better after the surgery but it has gotten worse. One of my doctors put me on a higher dose but it takes awhile to get going. I don't have most of the pain I did before my surgery so it was successful but now I still can't and I have so much pain at the end of my spine, where the pudendal nerve starts. At times I can't get off the couch. I don't know why it hurts so bad and Dr. Antolak has retired so I really don't know who to call. Has anyone been battling severe depression? Mine has gotten worse and my family is tired of hearing of it as they don't understand it. Any idea what would be good to print out to help them understand how this condition works? I've tried sending them copies of info but they jut say they don't care how other people are doing because everyone heals differently & why am I not back to work??????? HELP....The nerves are so sensitive and takes for ever to heal, Dr. Antolak said it will take 12-24 months to start feeling a difference. Any advice would be great esp. on what they can read that is some what short but sums it up. Thanks everyone

Christine

[blightcp]

Christine, I am sorry that you are in pain. I have be battling PN since 2008 and have had two surgeries. We all have dealt with people not understanding how all injuries are not healed instantly by surgery. I also get asked when my back is getting better, because most people don't want to think about the level and type of pain you are in.

There is a post discussing how to communicate with other about PN here http://www.pudendalhope.info/forum/view ... ter#p42730


Dr. Antolak was correct that nerves take a long time to heal, insurance really wants to see 24 months before they feel that a recovery has peaked when it comes to nerve issues.

I see Dr. Conway in NH and he has worked with Dr. Antolak closely, I knew he was retiring, but you are the first patient to confirm it that I have heard of.

If his office is still open I would call them and ask if they can reefer you to someone.

One other thought I have is, have you tried a TENS unit? It sends electrical signals onto the spine to scramble the nerve's pain signals. I was in extreme pain after my second surgery and it was helpful after surgery for about 3 months and it did help in both the immediate and long term reduce some of the "screaming" that the nerves were doing. A physical therapist can use it to see if it helps without purchasing one. Mine even let me borrow one until the paperwork went through.

If you could, PM Violet and let her know that Dr. Antolak has retired. That way the listings can be updated.

Take Care

Carl

[Ccannon]

Good evening everyone, its Christine again. It's been a while since ive been on here as so much has gone on. When i had my decompression nerve surgery i had nerves traped on the right, left and in the back area which is not very common per the surgeon to have trapment innall three places. He told me to get into a pool and walk or paddle to get my legs muscles moving. Before my decompression nerve surgery i had to get spine injections in the L4 and L5 of my lower back due to a buldging disk that was putting so much pressure on my spine. They say it got that way from me trying to compensate sitting sense incant sit straight down. After my nerve surgery the L4/L5 still feels like a knief is being put through it and turning. I just went through my second round of shots to bring down the swelling.( 1 shot 3 weeks in a row) But if i turn or bend just the slightest wrong way it goes out again and the pain is so excruciating im in bed for a week. Has this happen to anyone else? My surgoen retired so even though he sent my chart to another surgeon they never call me back so i have no one to talk to about this. I dont know if this is normal and i will have to wait till the nerves improve before the L4/L5 improves or if it needs to be surgically fixed.
Im also having a hard time losing everything as since i cant work im losing my home, alreadybmy independence, etc. im staying at my brothers for now so i can get into a pool and start walking, but at times it doesnt take much for me to collapse & get so tired so fast. There was a lot of damage on the right side so my right leg hurts the most. I use a tens unit and have a back brace my pain management gave me to wear. I also need information if anyone can tell me where to find it to show my brother and his wife how long this recovery could take, how much of a mental toll it takes on someone, etc. anything to help them understand this process. I already showed them the letter that Amanda wrote to help explain. If anyone has any good advice please let me know. Thanks and bless you all. C C

[janetm2]

Hi Christine,
Gosh you have a complicated case and that would seem to put you at a longer time for recovery. Sorry you have the back and all three braches of nerve pain, etc. There is a pargraph at the bottom of the FAQs off the home page to answer why it takes so long to recover from surgery. For now that is all I had time to research but if see something else I will post and good luck.
Janet

[Violet M]

Christine, it is hard for people who haven't experienced pain to understand it. Maybe you can also check the emotional aspects page http://www.pudendalhope.info/node/12 and at the bottom of it there is a link to my article about Taking the Shame Out of Pudendal Neuralgia.

There is information on this page http://www.pudendalhope.info/node/23 about the length of time it takes to recover from surgery and also on that page there is a link to my article on Taking the Myths Out of Pudendal Nerve Entrapment Surgery. In that article I referenced a scientific article http://www.ncbi.nlm.nih.gov/pubmed/15174821. If you can get the full text of that article that would explain how long it takes peripheral nerves to heal. I'm sorry, I don't currently have access to the full article. You can probably do google searches online to other articles that discuss nerve regeneration.

Have you done any PT to address your musculoskeletal issues?

Violet

[Ccannon]

I was doing PT before my PNE surgery but i have not been back since as my insurance changed and the PT i was going to was fantastic but doesnt take my new insurance which is now Medicaid since im not working any more. With no income it has been impossible to get the care and treatment i need as none of the specialty doctors take Medicaid. I need a few nerve blocks desperately but no one can give me the blocks while im on Medicaid. I need to see a spine specialist but im still looking for one. With Dr. Antolack retiring and no other doctors take my insurance that know and understand PNE my health care has really gone down. Not sure what else to do. Thanks