Continuing from my blog on pain management, I am now making my way to see pain management doctor #2. I haven't heard back yet from new PM doc's office but they need the referral letter. Have had some bad nerve pain last couple nights so I've been hooked up to my TENS for several hours each evening.
I FINALLY got an appointment with the new PM doc. They have set me up as a consult for the first appointment and they block off 1 1/2 hrs to spend with the doc. I hope this guy can handle the job. I came across an interesting "booklet" on intractable pain, since I have now been diagnosed with intractable nerve pain. This booklet describes what is it, what it does, how treated and affects on the body as a whole. Very interesting read. Here is the link for those interested
According to this booklet having intractable pain is rare
I saw the new PM doc today. What a difference between this doc and the first PM doc I saw. This clinic is part of a hospital. Very professional. Prior to appointment , I filled out 6 pages of health/pain assessment. First I had all my vital signs taken. Then I went thru an interview covering my history and pain with the nurse. Then I went thru an interview with the nurse practitioner. Her interview was more in depth concerning the pain, characteristics, etc and discussed different pain treatment,medication options. The Doctor came in and said I have been thru the wringer on pain for the last 8 yrs with so much trauma and 13 surgeries. He said nerve pain is a whole different animal and requires several combinations of meds and finding the right combo. He said I will never be pain free. His goal is to get my pain rating down to a 2-3 consistently. He says I actually have 2 types of pain, the nerve pain and somatic pain. He also knew all about arthrofibrosis
and what I've been thru with that. He is taking the treatment process up slowly to see what med will work rather than start many and wonder which one helped or didn;t. He explained very in depth the chemical receptors in the brain, spinal chord and on the nerves how they work and how and which meds work on them, almost too technical. For starters I am staying on everything I am already doing which consists of
Hydrocodones every 4 hrs.
Neurontin 300mg three times day
Lidoderm patch 12hrs per day
Celebrex 200mg per day
Benedryl 25-50 mg for sleep
Medrol dose pak for flare ups
For now he is adding
Cymbalta 30mg per day for one week, then 60mg per day , this is supposed to work well for neuropathic pain
Volteran gel applied 4x's day to the knee.
I go back in 2 weeks where they will consider adding
Neurontin xtra 300mg at night
Long acting morphine plus break thru pain med.
These meds are to start with.He also wants me to see the pain psychologist for at least one visit since I have suffered with high levels of pain for 8 yrs.I did have to sign a contract with this pain med doc.This doctor was very nice , very informative, and fully understood the pain I have been dealing with and the arthrofibrosis too. He held the same viewpoint on the spinal stimulator as me.
Why is it that medicines that are supposed to make you feel better and help , make you feel like CRAP !!!!!!
I am only on day 3 of cymbalta and the constant nausea, stomach pain is incredible, almost to the point of unbearable . I am going to ask the pharmacist if I can take dramamine with this med ....I hate having to take drug to combat the affects of a drug, to combat the affects of a drug, etc,etc..........it never ends
After that 3rd horrible day on cymbalta, day 4 was so much better.The cymbalta combined with the neurontin and lidoderm patch, has helped cut down the burning and needle sticks. I am still having the deep toothache throb. I go back to PM on Friday so I'll see if they are going to add to it to help with this throbbing. I am up to 60mg/day on Cymbalta. I have days when I feel kind of drunk on it. It's hard to get 4 doses of Volteren gel applied to the knee. I can usually just get 2 done per day.
Had 2nd PM appointment 2 weeks ago. Always have to fill out a pain sheet labeling pain, assessing quality, duration, and rating on the pain scale. Saw nurse practitioner and she wanted the PM doc working that day to see me. My doc was over at the hospital. I told them the cymbalta was easing some of the burning and needle sticks but was not liking the drunk feeling. I also said I could not sleep. The hydrocodones were not doing much for me and I reiterated the fact I have been taking them for 8 yrs. Doc examined my knee and located those nasty trigger points and made me jump. He discussed doing an injection next time with a long acting anesthetic. He also discussed doing cryo-ablation to the trigger points. He could feel knots on the trigger points. He is having me take cymbalta in the eve instead of morn to see if it helps me sleep and to help with that drunk feeling. He is also changing my pain med to percoset for the throbbing nerve pain. They want to see me in 4 weeks .
Today was my appointment with the PM psychologist. He wants 4-6 sessions ( $$) and will give me some ways to deal with pain. I'm not really keen on seeing these psychologist people, even though he seemed to be a very nice person, but I'll give it a shot...I can always say "pass" if I don;t agree with something.
Thursday I see pain management doc to see if there will be any adjustments or additions to meds and report the newest AF member of my body. I also will see if he will be doing an injection in the knee like he talked about last time. I think taking the cymbalta at night has helped to make me more sleepy but is causing several muscle twitches/spasms when I am getting in the relaxed phase before falling asleep. Very annoying when you are suddenly jarred awake a couple times from your leg , foot,shoulder, or head jerking. When I am asleep, I have started something totally brand new.....talking in my sleep according to DH. Never did this before in my life.
I saw my PM doc last wed. I told him the daily burning was better but I still was going thru several periods of a burning flare thru the day and I was also getting muscle spasms all over when I sleep. He has added another med to the ones I already take. It is called Baclofen. It is a muscle relaxer and has qualities to help with neuropathic pain. It works by blocking certain pain receptors in the brain. I started on 5 mg/ 3 times day and now on 10 mg/3 times day . It has helped with the burning flares and the muscle spasms. It has taken time to get used to this med.
Last Friday was another appointment with pain management doc. Another pain assessment sheet and visit with nurse, nurse practitioner and the doctor. Since I lasted posted , I had a scary heart episode ( I have a history of heart arrhythmias ) after taking the 10mg dose of the muscle relaxer for the second day. I thought I was going to have to go to the ER. I had to call PM and cardiologist. Cardio doc wanted me on lower dose which did not work as well and as the month went on it lost it's effectiveness. PM doc is changing the muscle relaxer after getting cardiac doc's approval. PM doc examined my knee again and felt the neuromas. He decided to do some injections using a very strong anesthetic. He used Bipuvicaine , the one used in spinals. They don;t even keep it in the clinic and had to go over to the hospital to get it.. I had to sign a permission form. My knee was all prepped with a pad that is antiseptic and topical anesthetic then my knee was sprayed with cold spray. I would help the PM doc locate the neuromas again. He can feel the small knot it makes, plus it is painful. He then proceeded to inject it with the Bipuvicaine. He located 4 neuromas and did 4 injections to the medial
side of the knee. There is a possible 5 neuroma
closer to the patella
. He said sometimes you can "kill" a nerve by injecting it with a strong anesthetic besides making it numb. It was pure heaven to enjoy total numbness for 12 hours. After 12 hours some burning returned. It lasted 2 hours. The next day I only had 1 major burning flare up and a couple smaller ones. Same thing on Sunday. Today the neuromas are becoming tender to touch. I don't know how long this will last but every moment with less pain is enjoyed.
PM doc is also talking about increasing my Cymbalta by 30 mg and has mentioned the cryoneuro ablation as a future treatment. So far I have been pretty impressed with this pain management doctor. He seems very knowledgeable about nerve pain and has many ways to go after nerve pain. He takes the time to LISTEN to me, allows more than enough time to ask questions and values my input.
Nerve pain aside, the patellar tendon pain has returned along with increasing scar tissue crepitis and tightness. Sent an email to Cincinnati for my OS with an update. They want to see me after the first of the year.Wed is my 2nd appointment with PM psychologist. PM doc called and they have switched my muscle relaxant from Baclofen to Flexeril.
I saw PM doc and PM psychologist last Thursday. PM doc did not think my night episode was related as a side effect of Cymbalta and neither did the Psychologist. The later thought it was from getting in a very deep sleep and in a trans state. He said I've been on the Cymbalta too long to be from it. He explained some insight on what he feels it is and we discussed this angle stemming from my horse accident and key medical events afterward. Just as you get into a good discussion, the time is up !!! lol
PM doc wanted to inject my knee again so I had 5 injections of bipuvicaine to 5 neuromas. I had 12 hours of total pain relief I can tell as each day passes the pain is increasing but I am enjoying any time I don't have it. No changes were made to my meds.
Had a meeting with my PM shrink and he feels that I have been dealing with way too much pain and orthopaedic
problems for almost a decade now and says I am showing signs of post traumatic stress syndrome
. Had another episode during the night where I wake up , but I'm not really awake and grabbed DH arm with a death grip and acting very upset . Hmmm...this is scary, I have no idea I am doing this.
Today was another appointment with the pain management doctor. We discussed knee pain
We also went over the night time episodes and muscle spasms. He is going to increase the Cymbalta from 60mg to 90 mg every night. If this does not help then he is thinking of trying amyltriptalene. I am still on flexeril.
Something else they wanted me to look at was a new TENS unit and delivery system. A distributor came to the office with this product and they thought it would be something beneficial for me. It is a tens unit the utilizes a conduction garment, in this case, a knee sleeve. This can be used all day and under my knee brace. I'll probably give the distributor a call and get some more info.
Here is the website for this tens unit:
What was interesting about this one, is what I read in the literature they gave me. They talked about different frequency settings and the affect it has on the nerve and bringing about pain control. All I know is my EMPI, which provided a constant buzz to over ride my brain from feeling pain....... different frequencies, such as a low frequency, endorphins are released, which provide slow acting,long lasting opioids for long lasting pain relief..at a higher setting enkephalins are released that are fast acting, short term natural opioids for pain relief. Edema
reduction is done thru muscle fibrillation which causes fluid to move thru the muscles. I've never read an explaination about the release of these natural occurring opioids before.
Now, it sounds good but, I am always skeptical, because I have an EMPI nmes/tens unit already. I'll give them a call next week
I had another appointment with PM doc. Since I last saw him, my BP is still high despite the fact I take Lisinopril , so he is adding Clonidine. Clonidine will take care of 2 areas, it will help lower the BP more, and with the jerky movements , which he calls myoclonic muscle movement. I'll start out with one and will go to 2 pills if BP does not go too low. He also may increase the neurontin by 300mg at night.
I got in touch via email with the rep for the conduction garment. I am very interested with this way to do TENS. It will cost me $225. She will give me the control unit for free. My only problem will be if it will work with my knee brace. She will meet with me at the PM clinic to see if it will work with the brace , unfortunately, I have to put it on hold, til I meet my $3000.00 deductable.
Today was another appointment with PM doc. He is increasing my Neurontin from 900mg /day to 1800mg/day . I am not thrilled in the least bit about this. I've tried 2 times in the past to get to that dose ( different Drs) and did not tolerate it, but I'll give it one more try. I am to start with the night dose for 3 days, then add 2 pills to the morning dose, then go to 2 pills on the afternoon dose. I'll do this for a month and see them again.
I'm going to talk to PM doc next week about going back to just 900 mg Neurontin. I experienced weight gain on this dose, more than I want. The small amount of improvement does not justify the weight gain. The weight gain is bad for the TKR
and BP issues.
Last Thursday I had an appt with the PM doc. I had a difficult 4 weeks of pain in the knee, from the last time I saw him. I also told him I did not notice much improvement with the Neurontin doubled from 900mg to 1800mg/day. What I DID notice was about a 10lb weight gain
. I told him I wanted back down to 900 mg. I said the extra weight was not worth it, given little change in pain , but also bad for the implant and my BP. I had seen my PCP
4 days before and blood pressure was still high. I had a reading 2 weeks prior at 196/124. She has me taking Lisinapril 20mg twice a day. My pressures were still high with visit to PM doc and pain levels too. He has changed my Clonidine from 0.1 to 0.2/ twice a day. The clonidine also has qualities to help with the pain, according to PM doc. He has added the Flector Patch for pain. I will wear this patch for 12 hours then wear the Lidoderm patch 12 hours. He consulted with one of the other PM docs about possibly doing an ablation or cryoablation to all these neuromas. I had asked if I was going to have these forever and if that was the case, I would rather see about getting them removed again. Because I was having so much pain, he did 5 nerve blocks , injecting all the neuromas. I was actually looking forward to getting them and had wished many times I could have had them done during the last 4 weeks. I go back in 4 weeks where they have scheduled another 5 nerve blocks, for that time. I'll find out more about this ablation procedure too.
I just tried to get my Flector patch script filled and ins won't pay. The price
is $194.00 /per 30. I'm going to get back to PM doc and tell them ins won't do....but we will try and get an appeal. I don't think they will totally treat me with samples.
The high BP was caused from the intractable nerve pain. When you have that type of chronic
pain, it causes changes in Heart rate and BP. That's why I have to take BP meds. I am checking into researching persuing the removal of these neuromas gain. I just don't want to be medicated the rest of my life. I see my PM doc this week and will discuss this and possibly from a plastic surgeons skill with peripheral nerve experience.
Today was my appt with PM doc. Dr did 6 injections of bupivicaine again. We locate the 6 neuromas and mark them , then he injects them. You can feel the balled up tissue, it is very tender to touch. They like to roll around while he injects them. Most of the time he can get the injection right in the neuroma and boy do I know it. It will make me jump in pain. These injections provide me with 12 hours of no pain, then a gradual return of burning, needle sticks and throbbing over a 2 week period. Since I have been more active moving about this has caused pulling on the scar tissue neuromas, increasing the pain. The PM doc said next appointment would be either radio frequency ablation or cryoablation to the neuromas.
Yesterday was my monthly appointment with pain management. My Dr discussed the cryoablation with me. It turns out the hospital does not have the cryo machine anymore and I will have to travel to do this procedure. He told me that the University of Iowa med center pain management unit has a cryo unit. He is still on staff at this hospital and would be there in October if I wanted to go there for this. Cryoablation brings the best results when treating neuromas. I'll be finding out more info. I see Dr N on July 14th and PM doc wants me to discuss this with him I just want off the meds. He wrote a script for the clonidine ( catapres) patch. If the cost is affordable, he wants me to try this to see if some of the sleepiness during the day is cut back. We will also try going off Neurontin if the clonidine does not do it. Hopefully the cost will not be too much. The doctor did the injections to my knee. He injected 6 neuromas with the spinal marcaine. Unfortunately , when he is successful placing the needle in the neuroma, it is extremely painful to go thru, much less 6 times.
NEXT IS MY EXPERIENCE WITH DR LEE DELLON, PERIPHERAL NERVE SURGEON