Continuing my series of blogs chronicling my battle thru nerve pain from neuromas. This blog begins four months after April 08 open surgery for 6 neuroma excissions. I was referred to pain management for continued pain despite taking neurontin, medrol dose paks, celebrex. When I got back in town, I had to find one in my area. That involved asking my PT to ask one of the OSs in the medical building who did his Fellowship with Dr Noyes, who he would recommend. Had to wait for him to get back from vacation. Finally got a name and good feed back from another kneegeek who used him. Went to make appointment and found I needed a letter of referral from Dr N. Finally the letter came thru. I was finally able to make an appointment for PM. This whole process has taken a month to do. I was told to bring a driver incase I got an injection in the knee.
This PM doc is an anesthesiologist who has nerve experience, which is what I was told to find. He'll have to do alot of explaining before he thinks of doing that. I have noticed the nerve pain increases when the leg is bent and I can now feel a lump in the area of the most sensitive pain, highly tender to touch, which leads me to think I have another neuroma forming.
burning area has continued to get worse and I now feel it is another neuroma. Not only is the burning and sensitivity worse but the needle sticks have returned more frequently and there is a pinpoint/trigger area . I had the first major nerve flare-up from this, just like the areas that were removed in April's surgery. This was the horrendous nerve pain, toothache throb, intense burning, needle sticks and extreme sensitivity, heat and swelling, that I was up all night with. I took pain meds hydrocodone and tried a percoset, extra celebrex, ice, extra benedryl and finally dozed off at 5am. This is why I am pretty sure this has become another neuroma. When ultra sound is performed it is very sensitive to have the wand go over it, just like before.
I had my first pain management appt. He spent 45 min with me. He was really amazed I had 6 neuromas. From my description of pain and progression, he also felt it was probably another neuroma. I asked if this could happen again at this point in time post-op and he said yes. He laid out several options of treatment for the nerve. They ranged from medications, surgery again, to cryo treatment,spinal stimulator. Medication is where I am at right now. He is increasing my Neurontn to 1800mg/day if I can tolerate it, if not, then I can adjust down to where I can tolerate., adding lidocaine patch which I can wear all the time and taking hydrocodone on a regular basis. If I need to progress on narcotics he will send me to a MD Pharmacist who specializes in medication combinations with narcotics. If I am to go to cryo treatment he will send me to that doc. Cryo would help at first but nerve could regenerate again after a couple months. Surgery to remove it was probably a better way to remove the problem. Then there is a spinal stimulator which I think is more invasive than surgery. It sounded like it is much like the TENS unit in that it delivers a current and causes the brain not to process the nerve pain. One way is to place the wires in the knee on the nerve and connected to pacemaker size unit in ABD or back. The other way is to place wire in spine. I told him I've used a TENS unit and that basically distracts you with the current but only good as long as you have it on and would need to have it on all the time. I am not too keen on this stimulator and feel it is just too invasive and could come with it's own problems. This would be a last resort for me. They will call me in a week to see how I am doing on the meds. Injection wise , he only does cortisone and local in the knee. he felt cortisone would not do much at all for me.
At first I did not think I would like this doc because his nurse came in first and asked if I had thought of using a spinal stimulator. I was pretty taken back by this and said isn't that a bit too invasive for this problem !!!!! I thought OK, this doc is out to promote this stimulator, on to another PM doc and opinion. Doc came in and spent 45 min and I felt better about his treatment plan and his understanding of nerve problems, especially mine and listened to me. I did not have to sign any contracts and he said if Noyes has any additional meds or treatments to add, then great. Probably if I have to go to the special pharmacy doc then I would be signing contracts since that would involve more intensive narcotic use.
It's now been 2 weeks since I saw my PM doc. I have been using the lidoderm patches, taking hydrocodones and increased the neurontin to 1800mg/day from 900mg. The lidoderm patches have helped with the day to day burning. The neurontin hasn't made much of a noticeable difference and I don't like the side affects. The hydrocodone has not helped as I told PM doc it has lost it's effectiveness since I have taken it so long. All of these things are ineffective during a flare up where the burning is very intense. The PM doc has decided to send me to the other doc who does more of the narcotic combinations but also mentioned Dr N will need to see if this nerve needs to be removed. My PT has heard of this doc and said he is a Physiatrist. They faxed over the referral and I see this doc Sept 17th.
I had my appointment and Dr N was not happy with PM doc's management of me. I told him PM doc only did neurontin, lidoderm patch and hydrocodones, then was really pushing a spinal stimulator on me. After 2 weeks when I reported the increase in Neurontin did not show much results and lidoderm patch helped some but still had a bad flare up, PM doc said that was all he could do for me and passed me on to the physiatrist, since I did not want a spinal stimulator. Noyes said absolutely No on the spinal stimulator and No to being referred to the physiatrist. He said he wanted pain management and that I needed to be managed chemically. In fact he said he wanted me to see a PM doc in Cinci and went out to the desk to have his med sec start calling his PM doc up but I said I can't do this living in KC !!!! He told me I have intractable nerve pain and there is nothing more that can be done. They had marked 3 trigger points on the knee. The patella
is still being watched because of tightness and restriction in the motion and it is a little low. He also feels I have quad wasting despite being in PT. He wrote me a script for a medrol dose pak to take at the start of my next bad nerve flare-up. While I had PT there, I was talking to one of the therapist about this nerve problem and other patients with nerve problems and how they did. She said I was the worst they had come thru.
This appointment marked my 6th yr of a new Fellows class starting and the one I saw was very competent. He gave me the name of a plastic surgeon he worked with in St Louis , that did nerve work on peripheral nerves and pain management. He thought I could call this person and possibly get a referral on a PM doc to see in KC or travel 3 1/2 hrs to see her. We have a neurosurgeon friend at home who we called to get a referral for pain management. Our NS friend said my case was way too complex and he sends his difficult ortho cases down to Alabama.I'll find out who he uses. I have a feeling it is Dr Andrews in Burmingham. I called to make an appointment with PM doc and needed to get referral letter from Cinci, so called today to tell them who I am seeing.
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, so chalk one more rarity up on the ole knee.