L4/L5

[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

[Laramarie]

Hi Christine
I read over your post so many times but I don't understand what you are asking? So did you have pudendal nerve decompression? And your L4 L5 are acting up or you had L4 L5 decompression? Anyways..... If your surgeon said to water walk, that is exacting what I did post op (once my incision line was completely healed)! If it isn't you are at risk of getting a post op infection. I waited until 8 weeks post op as per Dr Hibner then I got into the pool 3x week. It helps the muscles heal greatly. I was not able to walk forward for some reason but could walk backwards with no problems in the pool. If your surgeon cleared you for the pool then I would look for a warmer therapy pool to start at and start as soon as possible. Or since it's summer, the pools are so warm right now. Just watch that nobody comes close to your back area. Always have somebody with you watching your back so you don't bump it or kids don't bump into you.... I know you are weak and tired but the surgeon knows what is best for your recovery. Start slow and see how you do.

I hope this helps you.

Lara

[Karyn]

Hi Christine,
I'm sorry you're still struggling, but welcome back!
I'm a bit confused by your post, too. Perhaps you can clarify some things for us?

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.

What nerves were entrapped and what part of the body? When did you have this surgery? Who was your surgeon?

There was a lot of damage on the right side so my right leg hurts

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.

Again, I'm not sure what you're recovering from. If it was a PN decompression, perhaps this will be helpful?:
http://www.pudendalhope.info/forum/view ... f=3&t=5644

Also, there is an overview of pudendal neuralgia flyer located on the home page.

Kind regards,
Karyn

[Ccannon]

Im sorry for my confusing post, at times im so over whelmed that i dont take time to think about what im doing. I had PNE decompression nerve surgery by Dr. Antolack last Nov. 2013. My pudendal nerves on my right side, left side and in the coccyx were trapped by ligiments. My right side had the nerves trapped in many more places then my left side did. I had a particial hys. on Oct 26, 2012, which i believe caused my PNE, then a bladder dystention in March 2013 to check bladder damage & remove scar tissue that had wrapped around my small intestines pulling them up on my bladder then wrapping around my appendix. That Nov 2013 was my PNE surgery. Dr. Antolack said I had not fully recovered from the last two surgeries so my body will take a long time to heal. He wanted me to get into a pool and walk after the first of this year. He has retired so i do not have a doctor i can call and ask questions too. Before my PNE surgery i had to get injections in my L4/L5 to bring down the swelling of a disk. After my surgery i have had to get the injections again as my L4/L5 hurts like a knief is turning in them. Im down on my back for a week before i can start to feel better, but i have to wait 6 months between the round of shots i get from mybpain management doctor. He gives me one injection 3 weeks in a row. I just finished myblast round last month and i have moved/twisted wrong somehow and the knief feeling is back. It is keeping me from getting in the pool, from everything as it is so painful. I dont know if this will just heal over time with my nerves healing or if i may need another procedure? Im visiting family as they are helping me take care of myself as at times its too hard to do on my own. I get tired so easy, stairs are a nightmare and i feel so out of shape. Dr.Antolack said it will take 12-24 months before i will see a big improvement. Does anyone else get this tired? I still cant sit & dont know if i should try to even though it is very uncomfortable for the first few minutes before the pain starts? Im at such a loss without my surgeon. I have no idea when i will be able to work again, full time as im single so i have no other income to depend on. I hope i didnt ramble to much and explained myself a little better. Any advise is surely apperciated. Best wishes to everyone.
CC

[Laramarie]

Ok Chistine.... I understand a little better! I too am in the same boat as you. I had decompression in Dec 2013 with Dr Hibner. I developed PNE after a Gynecology surgery in 2011. I was very badly entrapped with scar tissue at the SS, ST ligaments and PN and pudendal vein. I still have a lot of pain most days but it is getting better (slowly). I did need to have a nerve block in June.
I always have days where I am extremely tired and spend hours on my couch watching tv and resting. I do try to swim a few times a week. Have you started back to physio?
It must be so difficult that Dr Antolack is now retired? Is there anyone that took over his practise that you can call for medical advise?
I was told by Dr Hibner to take things slow and recovery can take up to 18-24 months! Especially because we had a true entrapment that was caused by a previous Gynecology surgery that produced tons of scar tissue......
I was even told by a few veteran PNE gals that it took them a few years to fully recover so don't feel down. You will get there!
How soon do you need to return to work? I had to apply for disability, only bc I am an RN and I would not be able to do that type of work. I really hope that you will be able to get into a pool and do some slow walking to help with the pain you are feeling. Good luck and keep in touch.

Lara

[Karyn]

Hi Christine,
I owe you a huge apology. After responding to this post; I noticed that you had already explained your surgery details in another post. I'm very sorry for putting you in the position to explain everything all over again!

I understand how upsetting it can be to not have Dr. Antolak available to you anymore. But it appears he's done everything he can for you, in regards to the PN. Was he also overseeing your lumbar pathology? Was he helping you with pain management?

My pudendal nerves on my right side, left side and in the coccyx were trapped by ligiments.

I'm also a bilateral who had multiple areas of entrapments. I'm concerned and confused about your statement regarding the coccygeal nerves being entrapped. Did Dr. Antolak address that area? How?

Regarding your L4/L5 pathology: It appears you're in the first steps of having this treated. Typically, they do injections first, then assess. Has anyone discussed with you what the next steps would be?

There was a lot of damage on the right side so my right leg hurts the most.

Where exactly on your leg does it hurt? Are you experiencing any foot pain? Motor dysfunction? It's possible your leg pain is coming from L4/L5. Could be the sacral/coccygeal nerves or both. The leg pain is a separate issue from your PN, which does not innervate the lower extremities.

Because of all the trauma your body has been through - still going through; I agree with Dr. Antolak that recovery is going to take a long time. Please be kind and patient with yourself. Yes, it's completely normal to feel tired and overwhelmed. You've got unspeakable pain coming at you from many different angles and it's exhausting just to try to rationalize it, let alone try to work around it.

Also, the financial stress truly is horrible. Is applying for SSDI an option for you? I'm sorry you live by yourself, but am glad you have your brother close by to help out.

Kind regards,
Karyn

[Ccannon]

Thanks Karen & Laura for your replies. It is very hard since my surgeon has retired to get to speak to any doctor as the surgeon who he sent my file to keeps wanting me to come in for a visit but i live in Ky and they are in Minnesota and another surgeon is in Denver, he split his cases and i believe left it up to me to pick but i have no idea. Ive called both and they say they need to see me, etc. Anyway he was not helping me with my L4/L5 as my pain management doctor gave me injections before my PNE decompression surgery to take the swelling down and after the surgery the pain is back even stronger. I had another round of injections by my pain management doctor last month and i have to wait 6 months before i can get more shots but i moved wrong or did something wrong as the pain is back stronger then ever and im now at my brothers house in another state so he and his wife can help me take care of myself and try to do my therapy in the pool. I cant afford my home any more or my utitlies due to no pay check for over a year and half. Ive applied for SSD and have been turned down twice, going for my thrid try with an attorney who is also fighting with my Long Term Disability insurance through my work who turned me down for LTD benefits when i clearly should have been approved. My job consist of me sitting most of the day and i can not sit, havent been able to since my HYS. Laura did Dr.Hibner acknowledge that your condition was from your previous surgery? My doctors know my condition is from my HYS but will not come right out and say it. I was very healthy and out going, even worked all day before my HYS but that was the last day of the life i used to have. I tell my family it may take months to years to recover and they understand but also tell me to stay off the internet. I have showed them info from this site which has helped out but its so hard for them to imagine me not working for another year or more. As far as my pain in my right leg i believe due to having more entrapment areas on my right side it affects my leg with more pain during the healing and my L4/L5 effects it too. I had to go on Medicaid in Ky but now i need to transfer to Va Medicaid to see some doctors but it will take time so i have no medical care at this time. Well you all hang in there. When are you all hoping to be back at work? I know i shouldn't feel this way but i feel as im standing still, have been cor a year and half while watching everyone else move along in their lives. Its a horrible feeling. Take care

[Karyn]

Christine,
I realize you're still in the first steps with conservative treatments for your lumbar pathology. But ... it seems like you've been traveling down that road for a very long time.
Have you been evaluated by a spinal surgeon? From what I'm hearing from you, this particular problem is continuing to progress.

I'm so very sorry about your LTD and SSDI denials. I hope your attorney is able to resolve this for you, quickly!

Hugs,
Karyn

[Laramarie]

Hi Christine
Yes Dr Hibner did acknowledge that my previous gyne surgery was the cause of my PNE. There was no doubt. I woke up in that recovery room in 2011 in extreme pain and have been the same since...... My post op TG Decompression pain has also been pretty rough and I also had to have post op nerve blocks to help me with some pain issues. These were given by Dr Hibner. As per your question about going back to work: I am not from the USA but from Canada and we have a similar system like SSDI. I got approved for this based on the fact I had the severe mesh injury from my Gynecology surgery and then the PN damage. I also am on long term disability from my employer. I'm sure you will see results with your case now that you have a lawyer helping you. I really hope this work out for you. It must be so difficult for you right now. I am so sorry you are going through this. It's enough to have pain everyday!
I understand what it's like to have been told it a routine gynaecological surgery and then wake up in pure hell! I don't understand how this happens? How these gynaecologists get so close to our pudendal nerves to damage them so much? Anyways.... We need to recover now and I will pray for you to heal and get the financial stability you need. Please stay strong!
My PN surgery was December 9th 2013 and I am still having a lot of pain as well, don't feel alone. It takes time! We were very injured Christine. We need to rest and let out bodies heal. I know it's depressing at times but we have to have hope and look at people like Violet and Karyn and Catherine and see that they are all doing so well! We will get there and have our lives back some day as well too. We have to keep positive...... Baby steps day by day. I will be here with you if need a friend. Thinking of you......

Take care,

Lara

[Ccannon]

Thanks Lara for the encouragement. It is so hard not to fall into a deeper depression then im already in for losing my life amd everything i worked so hard for, i try not to go down that dark road but its hard to keep fighting. I think its good you get SSD and LTD from your work as i can only draw one or the other which ever is highest. Im not getting either nor have I yet but hopefuly soon. That just adds to the depression. I may be stepping out of bounds here by saying this on here but these surgeons know how we get this way but yet none of my doctors would put it on paper just so i could settle out of court with my first doctor. I know she didnt mean too but my life is gone and this is happening more then people know and untill there is a case brought to the courts then the medical boards will keep turning their heads and not make this priority! Doctors dont want to get into lawsuites i know but they took an oath to take care of their patients, not each other and all we need is for a few cases to be heard then they can look at a group of us this has happened to and figure out why it is happening. I think its the way we are positioned. It can be fixed I believe or at least more doctors aware of it. Im having a hard time getting over that part of it. So many of us damaged for the rest of our lives, yes some get better, some dont but how many more women need to go through this before it is brought out into the open? I believe this can be prevented during HYS. I dont think thats to much to ask. Sorry im venting. Karyn if you are reading this then the answer to your question about my L4/L5 is yes I do need to see a spine specialist but i cant see anyone until i get on Medicaid here in Va. It is really hurting me today. I hope you all and everyone has a very blessed day