Continued from Pain management Doctor #2

     Yesterday was my appointment with Dr N.  I hadn't been there since last September ,so there was alot of catching up on all my orthopeadic problems,,esp the ankle fusion. We discussed my pain management program and went over the Dr's progress notes. I told him I did not want to be on these meds for life..I don''t want the side affects and I don't want the high blood pressure . We discussed the cryoablation technique. Dr N said he used that on me and it did not work...lhe said it would last about 4 months at the longest. He feels I need to go to a specialist in peripheral nerve surgery. He wants me to see a Dr in Baltimore at Johns Hopkins hospital. His name is Dr A. Lee Dellon, he is a plastic surgeon and neurosurgeon. He specializes in denervation procedures where the nerve(s) is totaly removed leaving a numb area. He pioneered the procedure. His wedsite is 

http://www.dellon.com/      They gave me a lot of literature on it. I just need to make the appointment and he will send of the letter of referral.  After talking to Dr N and spending time on the computer researching this, I feel I will probably go this route and hopefully be pain free..

Then he proceeded with the exam and my other questions. I told him about the increasing pain ,tenderness and feeling full around the patella tendon, particularly on the medial side. He felt around the area ,which was very tender. He said I had anteromedial scar tissue on the fat pad. He gave me a cortisone shot in that area to calm the inflammation and help with the pain. we are hoping this will not develope any further. I have been having extension problem with full extension where I feel my patella is hitting the bottom. My previous xray showed some baja of the patella. I went to PT where they gave me a new program that I can do myself and one that will be compatable to do with my ankle fusion and to accomodate the patella so I won't be locking in full extension from my patella.I'm not really looking forward to traveling so far away, but feel good with the recommendation coming from Dr Noyes. Now I'll have to check with my insurance on this.

    I've been in contact with Dr Dellon with the peripheral nerve surgery institute at John's Hopkins about the Dennervation surgery. I got pretty excited talking to him thru emails, he said I had been thru so much and he felt he could help me.  He said I would need an office consult to isolate thru local nerve blocks , which nerves were involved. Once they were identified, then I would come back for surgery. He said even though Dr Noyes cut out the neuromas and cauterized and buried the ends, the ends might have come out and/or new neuromas developed on other nerves besides the infrapatellar branch. He also said he wrote the chapter on nerves and pain in Dr Noyes new book.
    It sounds too good to be true and it is......someone informed me he does not take any insurance, cash only. I emailed the Dr and said this drastically changed things , but I still asked how much. He said He would like me to come to see what nerves are affected because he felt he could really help me. He said he would do everything he could to make the surgery possible. My husband wants me to at least go for the eval and see what he says. This doctor has been on the Best Doctors in the US every year since i992.I told him I would probably come see him as soon as my finances allow.
        Still working with Dr Dellon thru emails to get this all to work out. He wants to see me in August and has named some dates for me.

    Went to PM doc....the clonidine patch is not providing adequate control for the high blood pressure and I have had increased burning flare ups , so I'm back on the pills. My BP has not been below 150/85 and as high as 180/84 in over a week. I did not receive any injections today, although I could really use them, because if I see Dr Dellon, I want to have full pain so he can locate the nerves easier.

    Well, unfortunately my schedule could not meet with Dr Dellon's scheduling for the month of August, or September nor most of Oct, so I have an appointment scheduled with him on Oct 27th. This is only for the consult and nerve block testing. Any surgery would be at another date/ If anyone is interested, you can down load off his website, all or part of his book called, Pain Solutions. It is only $6.00 per chapter to do. He suggested i download the chapter on Joint pain. I downloaded the First chapter and the 3 Chapter. It is very good. The more I read about him, the more I am impressed with his knowledge and skill with peripheral nerve problems and techniques to resolve them. He investigates to find the pain problem when other Drs give up.
    Today was another appointment with PM doc. I've been looking forward to this because my pain levels have been higher since I did not have the nerve blocks done last time. They weren't done because I thought I was going to go to Baltimore to see the peripheral nerve surgeon, but our schedules did not permit it until Oct 27th. 

Today I had 8 nerve blocks done with spinal bupivicaine to the knee. I now have 8 neuromas in my knee, all to the medial side. My PM doc has never seen anything like this. I can't wait til I see Dr Dellon , Oct 27th. One neuroma is painful enough, 8 is unreal.

    This afternoon was PM doc. Discussed neuroma pain and 2 more new neuromas right by the patella. The new neuromas feel like bee stings compared to the older ones that feel like horrible toothache pain . This explains new burning and pain more anteriorly and rimming the patella and swelling. When they were all located there were 9 , so he injected all  9 with spinal bupivicaine. He will see me back after my trip to Baltimore Oct  28th, to see Dr Dellon, the peripheral nerve surgeon, Dr Noyes wanted me to see
    I leave next Tuesday the 27th to fly out to Baltimore to see Dr Dellon. My appointment is Wed. One of the things he is going to do is a series of nerve blocks to map out the nerves involved. I would go back another time for surgery. We will go back home on Thursday. I am staying at a Sheridan Hotel very close to the office with a discounted rate and it has a skywalk to a Mall , hahaha.  My DH is able to go to a business meeting while we are there. Thank goodness for my DH frequent flyer miles.
    Today was my appointment with Dr Dellon at the Dellon Institue of Peripheral Nerve Surgery, in Baltimore or rather Towson Md. All I can say is WOW! I was really impressed with his knowledge, easy explaination,and amount of time spent with me. I was there 5 hours , the first hour spent waiting, paperwork, ( reading his textbooks) and the next 4 hours undergoing time with Dr concerning history and exam, series of nerve blocks, anatomy of nerves in the knee and treatment plan. I had all sorts of ink marks on my knee and leg , plus he took pictures.  I found out I also have peroneal nerve damage on the lateral side from my TKR dislocation in 2006 and shattered proximal fibula 2000 and deep peroneal nerve and sinus tarsi nerve from my broken ankle and surgery in 2000, besides all the medial knee pain. I've had pain in those areas for a long time and he knew just where to hit the nerve. He did several nerve blocks. He says I am one of the worst cases he's seen and he will need to do 6 procedures that involve each, their own incision. I will have some major nerve work done to the saphenous nerve at the adductor canal and 3 incisions with nerve resection on the medial side of the patella and down near the mcl. On the lateral side he will be going in near the fibular head to the peroneal nerve to decompress that nerve and halfway down from there will be at the deep peroneal nerve and further down to the sinus tarsi. He won't know til he sees the area whether it will be a resection or a decompression.  This is an outpatient procedure, so I will go back to the hotel afterwards. I asked about potential for redevelopement with scar tissue. He says there are no guarentees but did say with plastic surgery techniques, they are very precise and done in a way as to not inflict collateral tissue damage unlike orthopaedic surgery so recovery takes less time . I will be able to walk around soon after. He did say that about 10% of patients will need an additional procedure to other nerves.  He was very eager to teach about the nerves and use visuals to show me. There were other patients there from other countries and states. He feels very confidant he can help me become nerve pain free and to get off PM meds. These are sensory nerves and will not affect ROM. I will not lose the ability to feel if I developed a mechanical problem . I was concerned since I have scar tissue anteromedial to the patella that we are watching.

    The earliest I can be scheduled is Nov 12th and that's if a patient from Dubi, can't make it. Otherwise I can do it on one of the first 3 Thursdays in Dec. The surgery is all micro surgery and will take about 3 hours .  He will call me at the hotel that night and will stop by the hotel  the next morining to see me, before he gets to the office. I will go back at 3mos post op for a checkThere's really no rehab other than they want me to do pool walking everyday working up to one hour to help my brain adjust to the denervation.

    It was a lot to take in today. I'll probably remember other bits of info and additional questions to email the Dr. Tomorrrow we fly back home

   We stayed at the Doubletree Inn at the Colonade and got a hospital discount of $99/nite. The hotel was very nice. The next morning was surgery at Union Memorial Hospital. This hospital was about 3 blocks from the hotel right next to John's Hopkins. This was a very clean hospital and I will have to say the most friendly hospital I have been in. Everyone from the housekeeping, security, nurses ,techs and all people greeted you with good morning , how are you and so forth.The care was that way the whole time. The pre-op routine there is a bit different then what I am used to, I got into gown and had IV started then I was walked upstairs to surgery to wait in their wait area. Dr Dellon and partner Dr Hashimi ( probably wrong spelling but sounded like this ) walk in and meet my husband. Dr Dellon is very personable. He has us go back to another room where he asks me what he is planning on doing. I guess to make sure I knew what was going to be done. He discusses the surgery with Dr H and myself ,they are looking over my leg and have me point to some of the areas.He shows me where I will expect to feel permanently numb. Permanent numbness will be a welcome sensation after all this pain. Dr Dellon is still going over things with Dr H and the anesthesiologist and then he asks if I ever heard of Dr Oz. I said I've never watched him but know he was on Oprah.He said he has been contacted by them on his work with nerve/peripheral nerve surgery  He says my story is one that would be really helpful to others because of the amount of pain I have been in,length of time, number of surgeries, amount of medications I was taking, monthly cost of those meds and methods tried to manage pain . He asked if he could film me as he asks a few questions and send it to Dr Oz to see if they would be interested in my story. I thought sure,if I can help somebody not go thru all this ,go ahead. So he asked me some questions including how this has affected my life, the amount of medications I take, the expense , yrs of pain and nerve pain, etc, etc. Then I went on to be prepped for surgery and taken to OR. I could feel him drawing on my leg where he planned on doing his incisions. I'm always amazed on how many people are involved in the OR, when I look around,,then it's off to sleep.

    My surgery lasted 3 hours. Dr Dellon said surgery involved 8 very complex procedures thru 4 incisions. He said each incision was a single surgical procedure done all by it's own , so to do all 4 of these procedures in one session was really unheard of. Two of the places involved having to cut into muscle. One of those was the surgery on the saphenous nerve thru the adductor canal. this is a about a 4 inch incision going from  about mid medial knee up to the thigh. He said he could see all the areas where Dr N had worked on the nerve. He said the nerve was very scarred down onto muscle, tissue, ect. No wonder this hurts now since it involves muscle work. He had another incision on the medial patella to the medial patella nerve and said he had to go into the joint , I was so scarred down there, He resected the saphenous nerve and buried the ends in the muscle. I am numb from the patella to the whole medial side of my knee and from the middle of the tibia over medially halfway down. 

    The next incision is on the lateral side where the fibular head is located. This incision is about 3 inches and was for work on the common peroneal nerve. It was for debidement and decompression. Once again Dr D said it was so scarred down then he went on to the deep peroneal nerve and sinus tarsi. This was done thru the incision on my lateral ankle where it had been previously broken and surgically rebroken back in 2000 and 2001 and more work to trim bone last January. He said that area was very bad and took a lot of time. My deep peroneal nerve was kinked under bone, He cut between muscle and had go between the tibia and fibula. He said he visualized the 2 fracture sites where nerve was adhiesed to bone and muscle. He was just really amazed at the scarring but he was so happy he was able to save the deep peroneal nerve and not have to resect it. He also resected the sinus tarsi to help with the anterolateral ankle pain I have and will continue to have regardless of a nonunion or not of the ST joint fusion. My leg is bandaged from thigh to ankle. He said I would be able to walk afterwards and just use my cane. We went back to the hotel about 4:30. I'll keep the dressing on til the 19th after that I can remove them and start using betadine 3 times day to the incisions. I'll get the stitches out in 2 weeks at PCP office. I kept my leg elevated and ice paks to the thigh and ankle where the muscle was cut. That evening Dr Dellon called me to see how I was doing and said he would be stopping by at 9am to check on me.

    At 9am Dr D came to my hotel room to see how I was doing. He had me touch several areas on my leg/foot and told me which ones were numb from anesthetic injected in and from resected nerve. I did not have any nerve pain ! He went over my surgery again and answered some questions I had. He went over my return visit at the end of January and we discussed another surgery to possibly be done at that time. This would be to the tarsal tunnel, to work on the lateral plantar nerve. I lost the use of that nerve when I had the plantar fascia ruptured and lost the tibial tendon function which is why the ST fusion was done. I have no movement to all my toes except the big toe of my foot and they kind of just flop when I walk. He was very happy with this surgery and so am I. I have not had any nerve pain since...no burning,needle sticks,zingers,throbbing aching...nothing. I should be able to get copies of surgery and Dr's report soon , so I'll be able to describe more accurately, what was done.

    I am so excited to have no nerve pain !!.....I am almost afraid to be excited and happy. I have surgical pain from all these incisions and muscle involvement, but no nerve pain  Grin Let's hope no scarring up.  Dr Dellon has been great, very nice, loves to explain all aspects of surgery and really cares to make you painfree. I highly recommend him for nerve issues.
    I am now 18 days post-op. I am dealing with some nerve issues... STILL. I will elaborate more when I see pain management and receive reply to an email update to the Dr. I'm not trying to be melodramatic, just want some answers first. 

    Today I got a copy of my op report. He did:

    Neurolysis of the sciatic nerve, common and peroneal nerve at the knee, denervation of the proximal tibiofibular joint, neurolysis of the superficial peroneal nerve, fasciotomy of the anterolateral compartments of the leg ( for compartment syndrome of the left anterior and lateral compartments), resection of the deep peroneal nerve, resection of the saphenous nerve in the thigh and implantation of the nerve into the adductor muscle group, resection of the medial cutaneous nerve of the thigh and implantation if the nerve into the vastus medialis, resection neuroma of the medial retinacular nerve and implantation of the nerve into the vastus medialis and denervating the sinus tarsi.The procedures took up 3 pages of the report.

   Today all my stitches were removed by PCP. The incision to the thigh is pretty red but PCP feels it is from suture reaction. My knee is getting pretty stiff and is pretty swollen. I've been elevating and taking my celebrex. PCP wants me to increase my neurontin for a month.

   Tomorrow is PM doc so I'll see what he says about some things when I see him.

    I haven't had a response yet from Dr D....I probably won't get one til tomorrow or Thursday. Today I saw my PM doc. He seemed a little baffled by this since the saphenous nerve was resected up in my thigh. He feels it is probably phantom pain or something more serious called Anesthesia Dolorosa, which is severe pain in an area that is numb/anesthesia. He wants to increase the Neurontin and depending on what my pain relief is, I could get up to taking 3600mg/day. If I still have pain, then he will add another anticonvulsant. I hope he is wrong. 

   I had this pain starting at day 2-3 post-op. On day 8, I emailed the doc . He said I was only 8 days out of surgery and collateral sprouting of the nerves was to be expected. He wanted another update in a week. I don't call this collateral sprouting when my whole lower leg is involved. This pain is like having acid burning your skin and having a TENS unit turned all the way up with occasional stabs with an ice pick....nonstop

    I can't wait to get a reply from the doc. I need to have some hope on this, for my sanity.
Here I thought when I was going to have my PM appt after surgery, I would be discussing weaning off my meds......NOT INCREASING THEM !!!!

    Well, still no reply to my email from Dr D, but today was surgery day,so maybe tomorrow I'll get a response. If I don't, I will call. In the meantime, nerve pain marches on. I am now taking 600mg of Neurontin 3 times a day. I find it more difficult to stay awake in the mornings.

    Today was my appointment with my ankle OS. The verdict came as no surprise.....my fusion needs to be redone. He will place a new bone graft to the subtalor joint and place new screws. I find out tomorrow when my surgery will be scheduled and hospitalization will be dependent on where he takes the bone graft from....my hip or my heel. If it is the hip, that will require a longer stay in the hospital because of the pain. We gave it a good shot but after 10-11 months since surgery,it's time to get a fresh start, so to speak.

    One interesting thing from my visit today concerned my nerve pain. My OS suggested I try Neurontin cream. I didn't even know there was such a thing. It is made at a compounding pharmacy and contains neurontin, amyltriptaline, and lidocaine. I am to use it in addition to the oral Neurontin. I pick it up tomorrow.I hope this will bring some relief from this pain.

    The compounded nerve pain ointment has  helped somewhat. I have to apply it 4 times day. I don't particularly like it as an ointment because it never rubs in. It does come in strengths and can have other ingredients such as ketamine. It is hard to rub it in because my leg is so hypersensitive. This pain is like having a constant hornet's nest in the leg...esp in the ankle.

    I finally got a response from Dr D. He said I could have another branch of the saphenous nerve down there that needs resecting or could be collateral sprouting of nearby nerves into the denervated area. 5% of people need to have additional surgery to nerves that didn't show up the first time. He will evaluate it when I see him at the end of January. He also wants me to do pool walking 3x's week to help desensitize my leg. I don't think that will help me with this nerve pain. Wouldn't life be simple if we lived in the same city as these specialists, so we could see them when we have problems. I still have faith in Dr D so I'll have to bare with this nerve pain, but sometimes I hate my leg and just want to cut it off. My luck would be that I would probably develope a lot of stump neuromas .

    Today brings just another little update. I emailed Dr D about my surgery date for my fusion revision , so he will see me 6 weeks after my fusion to evaluate this leg pain. In the meantime, I'm not going to go thru all the trouble of getting a membership for a pool. I am just going to let the jacuzzi jets on my bathtub bubble around my leg, that should help desensatize my leg , if at all.
     I contacted Dr Dellon's office about my return appointment. He wanted to see me 6 weeks after this surgery. Looks like I will be going back to Baltimore for a March 3rd appointment, then I will be scheduled for surgery on the 4th for more work to the saphenous nerve. Not sure how many procedures until I have my appointment. I will be so glad to have this done and hope this will be THE END of nerve problems.

    My PCP wanted me to cut down my cymbalta by 30 mg. I started this cut back a week ago last Sunday. All last week was horrible, I could not function and had to be driven to my PT appointments. I was very unsteady and felt like fainting. I thought I was going to loose it a couple times. I finally said forget this and started the 30mg back up. I came across some website where they discussed how hard it is to wean off.
    Well I'm now 11 weeks post op triple fusion. I have one more week in my cast before the next appointment. I am off the oxycontin and morphine without any problems. I've always been able to get off the pain meds. I am back on the percosets from PM doc. The down side to that is the nerve pain has become stronger and with more pain comes high blood pressure. I'm back on high doses of blood pressure meds. It got as high as 194/98. Had some hefty headaches too. 

    At pain management, I'm back to getting injections of spinal bupivicaine directly to the nerves in the knee. I had 10 areas to the posteromedial knee injected and a saphenous nerve block. This provided about 12 hours of 100% relief then the nerve pain comes back. This time it came back quicker than it had before. Plans to go back to Baltimore to Dr Dellon have been put on hold til an ins. problem gets cleared up. A big drawback to seeing Dr D is the fact he is a no ins DR.....cash only.  Shocked Shocked Shocked  So I'm trying to get reimbursed for out of network before I can roll it into the next surgery. I had to get a letter from Dr D to send to the ins co. The next surgery from him is to the distal saphenous nerve

    When I asked him how much would this surgery be, I about fainted.  Shocked Shocked Shocked Shocked Shocked  I told him there was no way I could do it. I was able to negotiate the fee down, still a lot , but within my reach. He was willing to be the "assistant surgeon" while another doc working ( I think Fellow) was billed the bulk, thru ins. I still had to come up with several thousands of dollars cash.  Shocked Shocked Shocked  I had to pay cash for my 1st consult too, but got reimbursed for that. It's a shame to come up with the cash since I have/had met my $3000 deductable !!!!!!  Add in the airfare, hotel and rental car, food $INSERT:CONTENT:ENDnbsp; However , he is the only one with the expertise with this problem.
     Nerve pain is an overlooked problem of anterior knee pain. There are so many nerves in the knee, they get cut during surgery leaving their ends left to grow neuromas, or become compressed. This causes unending nerve pain. In my case, scar tissue wraps around forming neuromas. 

    My pain management doctor has me on several meds to try to help with the nerve pain. I take Neurontin, Cymbalta- which helps with neuropathic pain, Clonidine-which helps with neuropathic pain and high BP, Celebrex, Lidoderm patches, Flexeril, Percosets, Volteran Gel, a specially compounded gel made from amyltriptaline,lidocaine,and neurontin. The doses have been tweeked many times to find better pain relief or better tolerance for me. I have suffered from side affects with these meds such as short term memory loss, gerneral memory loss, dizziness,blurred vision, fatigue, involuntary muscle jerks, night terrors, and weight gain. Another problem living with constant intractable pain is developing high BP, which I have ,so I am on maximum doses of BP meds too.

    Don't give up. Nerve pain is a real casualty of knee surgery and doctors need to address it instead of leaving people to suffer. Dr Dellon is the best but you can also try to find a peripheral nerve specialist or a plastic surgeon who does intricate peripheral nerve surgery.

    Today was my monthly appointment with pain management doc. I always have to fill out a pain evaluation paper. I hate filling those out. I just can't be cut and dry with my answers. My BP was high at 168/98 but my pain level was a 8. I was having nerve pain from the posteromedial knee all the way down the leg, to the ankle and top of my foot and toes. Full distal saphenous nerve. 

    I had marked seven neuromas on the knee. The doctor injected all the spots and also did a saphenous nerve block which involves injecting the medial tibia along the joint line. When he found the nerve , boy was that painful !!!  Shocked Shocked Shocked Shocked  He also injected another area nearby. Once the anesthetic started working the nerve pain started going away, even all the way down to the toes. This will last about 12 hours at 100% relief,hopefully longer,then a gradual return to full pain. I wish I could have the bupivicaine as a continuous saphenous nerve block to the leg, like the popliteal nerve block I had for my fusion. 

    There were no changes made to any of the meds I take. I told him I saw PCP last week and discussed my hypertension and increasing 2 doses of the clonidine. I told him when I was weaned off the pain mads for the fusion, that is when the nerve pain increased and BP was high again. He said I will most likely need to increase my morning dose, like I did to the other 2 doses.  If I do this, I will become totally useless with fatigue and drowsiness, in exchange for lowering my BP.

    My PM doc discussed doing the cryoablation again as an option. I would have to travel to the University of Iowa medical center, to do this.They have one of those cryomachines. It could give about 4 mos relief up to a year, by freezing all the neuromas into an iceball. Something to ponder.

    I told him about the insurance snafu with out of network reimbursement with Dr Dellon. I had to go thru an appeals process, which included a letter from Dr D, so that will take at least 30 days. As soon as I get reimbursement, then I can schedule surgery with Dr D.

   I got a letter in the mail today from BCBS stating they received my appeals letter. It said they have to give me ,by law, an answer in 30 days or less. I'm looking forward to it. If they rule no reimbursement, then we will go to the state insurance commissioner. It can't come too soon. Last night was a horrible night for nerve pain. My leg was on fire all the way to the toes. I had lidoderm patches on the knee and foot.. very little sleep.  I guess the injections have worn off.

    Today has been an interesting day.

    First of all, it was another appointment with pain management doc. We discussed my treatment options which are narrowing down. At that point, I still hadn't heard from BCBS on their ruling to reimburse me the money I paid for surgery with DR Dellon. Getting monthly injections in the knee aren't providing long term relief. Today the doctor found a larger neuroma higher up my thigh just medial to where Dr Dellon resected the saphenous nerve. He felt injecting there would block the nerve all the way down to my foot rather than injecting the 10 sites I had marked and doing the block further down. It sure hurt when he hit the nerve. Afterwards I was so excited to have total numbing all the way down to my toes. I told him Dr D was going to do another surgery to do the other part of the nerve. My PM doc isn't so sure about doing this as resecting a nerve can cause more neuroma. I've now lost count on how many I have had. He said I might consider doing the cryo-ablation because it freezes the nerve or rather the axiom or "wires inside" without damaging the tube /mylan sheath the wires are in. He said it could take 4mos or as long as a couple yrs for the nerve to grow back and if it did, it would grow down the intact sheath. This would have to be done at the University of Iowa med center because they have the cryoablation machine. My PM doc knows the doctor who uses it and my PM doc also can use it since he is still on staff there. He said another choice would be the neurostimulator in the spine. He said I have exhausted everything else so I am now a candidate for having that as an option. The next thing he said kind of blew my mind. He said I can do a 5 day trial of the neurostimulator, yes, that is something that can actually be done. They do a minor procedure to attach it to the area of the nerve in the spine with the controller outside, then you set it at the level of control you need. It provides a different stimulus to override the nerve pain. If I felt I was helped with the pain, then they would remove the trial and schedule me for the implantable one. If I decided to go that route, then the neurosurgeon would do the implantation and who happens to be a friend of ours. They gave me information and a DVD about it. I said I would watch the DVD and research it on my own. A part of me finds this somewhat appealing as I am so tired of this pain.

    When I got home and checked the mail, there was a letter from BCBS. What timing. I was excited yet prepared for it to say , denied! When I opened it and read it , I was so happy, they had ruled that they would reimburse me for the surgery and I should be getting a check within a week. I had planned on rolling this money into the next surgery with Dr D. After today, I have more questions to ask Dr D and if there is another surgery, he will have to write BCBS a letter ahead of time about the requirements of the next surgery to get an approval ahead of time, so I don't have this happen again per BCBS. 

    Sadly as the evening has gone on, my block is wearing off. The burning and pain is returning. I thought it would have lasted longer, injected and blocked, higher up . It WAS so nice to be nerve pain free. It makes you feel like a whole different person.

Lots to think about. I see PM again in 2 weeks.

    I haven't made any decisions yet- I still need to email Dr Dellon the latest and talk about the next procedure to be done and the success rate. I can't keep having neuromas and nerves resected. I also have a motor problem with my foot, I can only move my Great toe not the other 4.

    I have researched some on the neurostimulator . I'm leaning more towards this not being the right thing to do at this time in my life. My husband I and ride motorcycles. For the past 2 yrs , I 've been passenger only. There is a certain amount of vibration and heaven forbid, spilling, that could break or knock wires loose in the spine. This could cause severe damage to the spine. I am also concerned/petrified about developing scar tissue in the spine from the procedure. The cryo is more appealing than the neurostimulator.

    Last Friday was another appointment with the pain management doc. After 20 mins of discussion concerning the neurostimulator and cryoablation, I decided that I will try cryo ablation first. It is much less invasive, can be done over and over and I have nothing to loose by doing it. The neurostimulator is something I will consider at a later date. I had several questions for the doc about the NS. 

    The PM doc is going to contact the University of Iowa Med Center about doing this procedure. They have a cryoablation machine which freezes the neuromas into ice balls. He knows the doctors involved and will talk to them. It would involve a 4-5 hr drive and a couple days stay. So right now I am waiting to hear from them. My PM doc feels I am experiencing anesthesia dolorosa and deafferantation pain which each one on its own causes severe pain. His opinion is that more nerve surgery will just cause more neuroma formation.

    I did get 4 injections to the knee this time. Two were blocks to the saphenous nerve , one in the thigh and the other below the knee to the tibia and 2 injections to the most painful neuromas.

    I haven't emailed Dr Dellon yet but want to hear his opinion on this and what more he could do and make it a success.In the mean time, I'll be waiting to hear from U of Iowa.

    It has taken 2 phone calls to BCBS to find out when I will be getting my reimbursement check from my grievance approval. Today I finally talked to the person in charge. He told me it takes 30 days. I said it has been 60 days ! After he did some checking, I was told that it didn't make thru all the proper channels and got "lost" along the way. ( yea, right Angry ) He said it has been corrected and I should get it soon......yea, sounds like the dog ate my homework excuse. 

    Since my last update I have been talking to Dr Dellon quite a lot thru emails. I informed him of pain managements thoughts on my treatment plan. I said I was a little confused on some things. He feels very strongly that I need to get back to Baltimore to see him so he can evaluate my nerve pain. He needs to see if one of the resected ends to the saphenous nerve has come out of the the muscle where it was buried and also see if another nerve branch or branches is causing me the trouble. The findings will determine more surgery. I will probably see him in August.

    It has taken 2 phone calls to BCBS to find out when I will be getting my reimbursement check from my grievance approval. Today I finally talked to the person in charge. He told me it takes 30 days. I said it has been 60 days ! After he did some checking, I was told that it didn't make thru all the proper channels and got "lost" along the way. ( yea, right Angry ) He said it has been corrected and I should get it soon......yea, sounds like the dog ate my homework excuse. 
   I had appointments with PM Shrink and PM Doc. I got 14 injections of spinal marcaine to the neuromas in my knee and a nerve block to the tibia.
    Last Friday was appointments with PM shrink and PM doc. I really needed the visit with the shrink after this surgery. All of this stirs up the reason for all of this in the first place , which is my first OS's negligent care leading to a medical malpractice lawsuit. 

    This visit with PM doc was my monthly injections and nerve blocks. There were 14 of them. My PM doc said they will be able to acquire the cryo-ablation machine around Dec 9th or 10th. He asked if I was still interested in trying this method of freezing the neuromas. This cryo ablation method can last anywhere from a couple months ,up to a year. I said I was still interested. I wanted to try this before going thru another surgery in Baltimore, with Dr Dellon. 

    This cryo ablation procedure will be done with light sedation. It is painful but I will need to be able to communicate with the Dr while he is doing it. It will involve sticking a cannula in each neuroma, then having a probe inserted to locate the neuroma and stimulate it which = extreme pain. Once this is done that probe is removed, then the cryo ablation probe is inserted so the neuroma can be frozen into an ice ball. The neuroma does not stay as an ice ball for long, It will thaw during this procedure. This will cause the neuroma to be dead anywhere from a couple months up to a year in some cases. There was a KG ,on another thread, in a different section, who had this done in NY. She said it was the most painful thing she had ever done.  After reading this , I didn't feel very excited to go thru this procedure. I thanked this person for their candor. I would rather hear from another patient going thru the procedure, than having a Dr , who has never experienced it, tell me I might feel a little pain.

    So sometime around Dec 9-10, I will be having the cryo-ablation method done, to the many neuromas of my left knee.

  Got a call Friday from pain management about the cryo-ablation. I am scheduled to have that done on January 6th. DH will need to be there since I will be sedated for this procedure. Starting the New Year off with a bang. Since this procedure is pushed back to January, I'll be having another round of injections and blocks on Dec 14th.
   Two days ago ,was another visit to pain management. I had a very bad weekend because of my pharmacy. I had called in a refill on my neurontin ( for nerve pain) on last wednesday. It needed a Drs OK for refill. I checked in on Thursday, Pharmacy said no word yet. I called Friday and getting frantic . I explained I took my last pill Thursday and would go thru with drawl . I asked for pills to get me thru weekend so I wouldn't go thru withdrawal. They said no .No care about the withdrawal. I went thru a horrible withdrawal of extreme sweating til soaked, then chills, sick to my stomach and headache, palpitations. Theses sweating episode were done many times day and night. No sleep. Monday I found out when I called Pain management doc, they never received a fax for renewal. they gave me their fax # to tell pharmacy. It turns out pharmacy was calling Sprint. I live about a mile from sprint world headquarters.  

    When I saw PM doc on Tuesday and told him what I went thru. He said that was terrible. He said I could have had a seizure and even died coming off neurontin cold turkey. He said if it happens again to call the hospital and ask to page the anesthesiologist on call. I never want to go thru that again. 

    Today I got a call from pain management. My PM doc wants me to come back in to be injected before the cryo ablation. He wants me to try and pick out the worst neuromas and mark. It will be hard to designate the worst ones. To me, they are all bad   Shocked  Next week on the 22nd, I go back in to be injected.
    Yesterday was my visit with PM doc for injections before the cryoablation. It was very hard to pick out the worst neuromas. I ended up marking 8. Usually I mark 14. This really stirred up the pain in the nerves because you have to push down to locate the neuroma. They feel like little BB's up to the size of a pea. PM doc felt around and we picked 4 out of the 8. Some of these neuromas are coming from the sciatic nerve that wraps around from the back of the knee, to the side and front. He wanted the deepest neuromas instead of the superficial ones. Doing cryo on a superficial nerve can risk causing tissue damage from freezing the nerve. He proceeded to create a sterile field, then injected the 4 neuromas. It really hurts when the needle hits the neuroma. When I got home, my knee, thigh, and lower leg were aching and the other neuromas were very painful with lots of zinging electrical pain. OUCH ! This lasted all day and night. Today, it has calmed down some.
    Tomorrow, I go to have cryo-ablation done, to the many neuromas of my knee. Today was an appt with my PM shrink. One of the things we discussed was the procedure tomorrow. He gave me some breathing exercises to do to combat some nerves. You would think since I've had 18 surgeries I would not be nervous, BUT, I am a little nervous, since I am going into unchartered territory. There was one other KG who had it done. Her report wasn't too comforting. I need to give this a try before I have to resort to going back to Baltimore to see Dr Dellon, for more nerve surgery. I know he preferred I not do it because he felt the buried nerve ends had come out from being embedded in the muscle. I feel like I should give it a try at least.

    I have to be there at 7am and will be there for many hours. They have me booked for a 2 hour procedure, but will have to stay there longer to see if other neuromas need ablating. I will be somewhat sedated for the procedure. I have to be awake enough to give my PM doc some input during the procedure.

    You can read about my cryoablation experience in my cryoablation blog.
   I am still trying to get back to see Dr Dellon. I will when I have the finances to do it. My DH is acquiring frequent flyer miles so we can fly out free. I am trying to see if one of his partners who takes BCBS , can do the surgery, to get it covered by BCBS. I will update the blog when I have news to report.
Keyword (tags): 
missmyknee's picture