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at my wit's end...

Posted by Megan C. on 11/23/01 at 19:51 (065119)

Hi everyone, my name's Megan. I'm 18 and have been living with TTS for a little over a year now. About nine months ago I had tarsal tunnel release surgery. But these past couple months have been hell for me. The pain in my foot has come back worse than ever. I have tried physical therapy and have been taking large amounts of the medicine Neurontin. Now I face a possibility of another surgery. I've already missed playing soccer my senior year and I don't want to miss a whole lot more on account of my foot. There isn't anyone who can sympathize with me around here, so i'm hoping some of you can. I need some friends who understand what i'm going through. I hope I get to know some of you!

Megan

Re: at my wit's end...

Rebecca H. on 11/23/01 at 20:58 (065122)

Hi Megan. I have not experienced TTS but just wanted to say sorry you're going through this stuff. I have another foot problem, plantar fasciitis. Hope you get through all this soon and are able to play soccer and other stuff thats important to you.

Re: at my wit's end...

Megan C. on 11/24/01 at 07:20 (065127)

Thank you! I hope your foot also heals!

Re: hello megan ! i used to play soccer too in my younger years .!

linda A on 11/24/01 at 20:03 (065162)

i am 36 yr old . had p.f. and t.t.s. surgery last year . now i am in the chronic pain syndrome . two doc have said more surgery will aggravate everything . pain mgmt doc wants to implant a spinal cord stimulator . i do not want to go that route . i am trying neurontin 300mg x3 day (only been on it for week )and topomax 400mg ( month ). i have so much pain . but what is so bothersome is the numbing and burning sensation at the toes . do you have that problem ? . after the surgery the symptoms of TTs went away , but somehow around the 11 month after surgery all numbness sensation came back . now i always had the pain from the fascia under the foot beginning at the back of the heel to the metatarsal and along the high arch with the outside lateral pain . that never disappeared . had over 15 cortisone shots in 1 year ( way too many --- but i was hoping for a miracle ) . anyway i hate to disappoint you ,but i had to give up my love for biking and hiking . have not been able to do that in 2yrs . maybe someday i will be able to return to it . i would like to see the insurance companies pay for ESWT perform on the foot . that is what i would like to have as a christmas gift . i hope you stick around a chat w/ us on heelspurs.com . i don't post often , but i do like to read the funny stories they are very uplifting . thank you all ! linda a

Re: hello megan ! i used to play soccer too in my younger years .!

Megan C on 11/27/01 at 16:15 (065428)

linda, it was great to hear from you! I'm sorry to hear about your current situation!! I am having pain is much of the same places as you. I do get the numbing and burning sensation. I just hate it when I can't go one day without any pain. I am also on Neurontin and have been for a little over a year. Unfortunetly it hasn't worked for me, but I do get a lot of bad side-effects with it. My doctor has said that the only thing left was another surgery, but I am going to get a second opinion this friday. I hope one day both of us will be able to do what we enjoy without any pain. Thank you for your kind words and I hope everything works out with you. Keep me updated on things!!

Megan

Re: megan------ what are your side effects

linda A on 11/27/01 at 22:06 (065466)

can you explain some of your side effects . i take some many drugs and i was beginning to wonder about my own . but i can not distinguish which is causing what problem . i know i am having problems w/ kidney & bladder , feels like kidney stones -- i think that is due to my seroquel . i have alot of muscle pain , along w/ joint pain . i always had some degree in my knees and thighs , but it has gotten worse since taking these drugs . my muscles and joints in other parts of my body are now acting up . at first i thought that i was coming down w/ the flu , but it has going on for weeks now . usually the cold weather also affects how my joints acts up . i am only 36 yrs old . my great aunt had R.A . when she was real young ( started when she was around 30 yrs ) . i never discussed w/ doctor , because i don't want to be diagnosed that early . when i had knee surgery 6 yrs ago doc said ,i had no -arthritis. i was so relieved ( kneecap was out of place ) . i have the tingling sensations in my hands ( almost like the feet ). i due have neck problems ( c3-4 c5-6), but it was never down in the hands only in the upper arms . so i am wondering if this is some kind of side effect . do you have any of these symptoms of the tingling sensations . have headaches all the time worse now , quiet different than i used to have ( more on right side by my eye ) . i don't complain , i usually just deal w/ it . i am afraid of going to the doctor everytime something comes up. but then i had a co-worker who wife had problems w/ear & eye and found out she had a brain tumor . noone in louisville would touch it , she had to go to cinn , ohio to have three operations . well it has been 4 yrs and she is doing fine . how many mg of neurontin were you taking ? are you concern of more scar tissue to TTS area when more surgery will be perform there ? thank you for responding ? linda

Re: megan------ what are your side effects

john h on 11/28/01 at 09:12 (065485)

linda: i would sure have a blood work up to check for liver/kidney functions. Muscle and joint pain are symptomtic of many drug reactions.
Having had a C4/C5 and C5/C6 problem I can attest that they can cause both tinglling and pain in the fingers,arms. In any event you should describe these to your family physician and insure you are not doing any damage to your body.

Re: megan------ what are your side effects

Megan C on 11/29/01 at 14:48 (065646)

Linda, At first whenever he upped my dosage of neurontin I would constantly be very tired. But now, I have a lot of neck and upper back pain and I get muscle spasms in my neck. I finally went to a neurologist who said that neurontin can cause these side affects in some people. I was taking about 2000mg, but the neurologist and my mom took me down to 600mg. Although the muscle spasms aren't as bad, I still have pain in my neck and back. I want to get off of neurontin but everytime I skip a dose by accident I go through withdraw. So i'm hoping my new doctor can do something about it. Does any of this sound familiar to you? I hope not!!

Megan

Re: megan----------what are your withdrawal symptoms

linda A on 11/29/01 at 20:19 (065687)

megan --- i already have the neck problems since college years . i was an infant when a drunk driver slammed into our family car at 4-way stop . being in 60's my car seat was located in the front seat . also been in several other fender/benders and loved trail riding w/ my mountain bike-trek ( killer of them all is --- the old ten speed or today what is called the 'road bike ' --- cannondale) . so my neck had a few good whips . one day when i was trail riding and came down off a trail and thought i had clearance under a branch ( nope---luckily i had a helmet on ) . it knocked me off my bike and gave me stars to look at . can you be specific about your withdrawal symptoms ? thank you again for responding megan ! i wish you all the luck .are you still in highschool or are you in college now ? do you play any other sports or are still sideline from other sports too ? what state are you from ?i like to write down where people are from ? i am from louisville, Ky . i am anesthesia tech , who works at a hospital in louisville . linda a

Re: megan----------what are your withdrawal symptoms

Megan C on 11/30/01 at 14:17 (065748)

Linda, my withdraw symptoms include dizziness, headaches, symptoms somewhat like the flu. Do you have any of these? Sorry to hear about all of your accidents! I'm now a senior in HS. And I am, unfortunetly, not allowed to play sports again. I'm from Collingswood, NJ. I just went to my new doctor today for a second opinion. I have to have an MRI and another EMG done on my foot to see if any new nerves are damaged. But he said if there aren't any, then i'm most likely going to have to live with the pain. I also wanted to be a nurse, but he said I couldn't. It would put too much stress on my foot. So in a way, and I know this is bad, I kind of hope there is a different nerve that damaged so that there's hope for some treatment. I know that's wrong to say, but I know I can't live with this amount of pain for the rest of my life. Ya know?And by the way, it's great to meet you!!

Megan

Re: megan--- it is once again hard to pin point those symptoms

linda A on 11/30/01 at 14:50 (065754)

i always have headaches ( usually on left side ),but this time it is more off to the right side of my temporal . it is so confusing w/ the headaches , because somtimes i am often bother by bright lights . i have to wear tinted glasses , because of this reason . in the surgery dept it is especially bright when all the lights are 'on ' . so i try not to pop to many tylenol in my mouth , because then you have what you call the ' rebound effect ' from taken too much tylenol . so i often deal w/ the pain . the dizziness ---- is another hard one to explain because i have hypertension . if i get up to fast then here comes the dizzy part . are you dizzy all the time / or just some times ? flu----- meaning the muscle aches ? that is what i am experiencing now . is that what you mean ? i am cold always , so that will be hard for me to judge . my friends tell me i have no---blood/or fat to keep me warm . well the fat is not true i am 185 lbs right now due to lack of activity for 2 1/2 yrs ( at one time i was 99 lbs that was 5 yrs , anorexic ) . when i was exercising i stayed 135 lbs . being a nurse takes alot of physical effort on the feet . the worse part on my P.F is after break time , my feet constantly wants to stretch out ( high arch -- very painful) this goes on for 20 minutes . take care megan . do you live close to DR. Zuckerman ? linda

Re: megan--- it is once again hard to pin point those symptoms

Megan C. on 11/30/01 at 16:43 (065768)

linda- I'm not always dizzy. It's usually mid-day or when I haven't taken my medicine in a while. Yes I do get some muscle aches, maybe because of the medicine, maybe not. I too gained some weight when I injured myself. I want to be able to exercise so bad, but I can't even ride a stationary bike, so it's hard to do anything but lift weights. I know how much it must hurt to be on your feet all the time. It kills me when I have to run to my classes at school. I think I live somewhat close to Dr.Zuckerman, though i'm not too sure. Have you heard a lot about him? You take care of yourself too! And maybe you should talk to a doctor about the possible side-effects of neurontin. Though it happens to few people, the side-effects are a sign that the medicine should be lowered or even cut out. Good luck!

Megan

Re: megan--- only been on the neurontin for about 2 1/2 wks

linda A on 11/30/01 at 21:18 (065785)

i don't take the neurontin religiously ( i should be taken it 3 times a day ) . problem is i take too much drugs . bad advice to be given you . so never listen to me . i was having problems w/ my stomach . i thought the big drugs that could possibly be given me problems would be topamax and the seroquel, since i have been on them the longest about 2months . another thing about the dizziness is the seroquel . i have to take it at 6 pm , if i want to get up at 3: 30 am to go to work ( 5- 1pm surgery early bird catches the worm for the anesthesia tech ) . i take care of the gas machines make sure they are working order , stock the anesthesia carts w/ drugs , and supplies for the doc , and here to assist the anes doc . i don't really get to stay in a rm long enough , because i am divided w/ 12 other rooms that need my attention . i carry a walkie /talkie . i sometimes get tired of hearing my name paged ( linda ---stat rm #1) . that was today's big problem a difficult intubation and problems w/ cardiac svo2 monitor . so several things going on that i needed to help the anes doc with . i was able to help w/ monitor problem and got her extra set hands for difficult intubation ( this is a days work --- sometimes these anes docs just read the crossword puzzle during a case and sometimes they have a exciting day ) . remember never lie to anes doc , because everything is very serious down to the cup of water people often lie about not drinking ( aspiration --- bad on the lungs ) . and taking herbal drugs ---all effects blood pressure / heart rate , etc. thank you for listening to my speech on that . smoking is another thing . but i will not pressure you . bad for the lungs , make your own decision . i did smoke cigars for awhile --- fun thing to do . but when i was exercising , i knew that i had to give it up . no---lung space ! yes i heard wonderful things about dr Z . if i could afford him and live close ------ i would had my feet ZAPPED before i would have my feet cut on . ask john H , TEXAS Barb , scott who runs this site , several others have had their feet zapped and are doing the foot trial . john h was a helicopter pilot in vietnam war interesting guy . everyone here are so supportive . i started posting around august , even though i was asking questions to the doc last year before my two surgeries . have you click on to the pictures of the posters . my picture is not there yet . i don't have a scanner . hoping to scan soon . take care megan . have a nice weekend . i hear it is snowing up north is that true ? linda age (Ky)

Re: megan--- only been on the neurontin for about 2 1/2 wks

Megan C. on 12/01/01 at 09:39 (065806)

Linda, Wow, what an exciting day you have! But also a very busy one, and one that starts very early! I have trouble getting up at 5:30 for school, let alone 3:30! I do have to hand it to you. It does seem like you're taking a lot of medicine, but does it work? If it takes the pain away I would love to know what you're on. Everyone here does seem so nice. It helps to have someone to talk to that knows what i'm going through. What do you mean by having your feet zapped? Is it a method of pain control? Don't worry about the no smoking thing. I don't want to pick up the habit. I hate it that my mom and grandmom still smoke, but they won't listen to me! About the snow, I wish it were snowing!! It is so warm up here! And the weather channels say it's supposed to stay like this through December 14th. Which is very upsetting to me since I love the cold weather. How is it in Kentucky? Well, I have to go help put the Christmas decorations up, talk to ya later!

Megan

Re: at my wit's end...

Rebecca H. on 11/23/01 at 20:58 (065122)

Hi Megan. I have not experienced TTS but just wanted to say sorry you're going through this stuff. I have another foot problem, plantar fasciitis. Hope you get through all this soon and are able to play soccer and other stuff thats important to you.

Re: at my wit's end...

Megan C. on 11/24/01 at 07:20 (065127)

Thank you! I hope your foot also heals!

Re: hello megan ! i used to play soccer too in my younger years .!

linda A on 11/24/01 at 20:03 (065162)

i am 36 yr old . had p.f. and t.t.s. surgery last year . now i am in the chronic pain syndrome . two doc have said more surgery will aggravate everything . pain mgmt doc wants to implant a spinal cord stimulator . i do not want to go that route . i am trying neurontin 300mg x3 day (only been on it for week )and topomax 400mg ( month ). i have so much pain . but what is so bothersome is the numbing and burning sensation at the toes . do you have that problem ? . after the surgery the symptoms of TTs went away , but somehow around the 11 month after surgery all numbness sensation came back . now i always had the pain from the fascia under the foot beginning at the back of the heel to the metatarsal and along the high arch with the outside lateral pain . that never disappeared . had over 15 cortisone shots in 1 year ( way too many --- but i was hoping for a miracle ) . anyway i hate to disappoint you ,but i had to give up my love for biking and hiking . have not been able to do that in 2yrs . maybe someday i will be able to return to it . i would like to see the insurance companies pay for ESWT perform on the foot . that is what i would like to have as a christmas gift . i hope you stick around a chat w/ us on heelspurs.com . i don't post often , but i do like to read the funny stories they are very uplifting . thank you all ! linda a

Re: hello megan ! i used to play soccer too in my younger years .!

Megan C on 11/27/01 at 16:15 (065428)

linda, it was great to hear from you! I'm sorry to hear about your current situation!! I am having pain is much of the same places as you. I do get the numbing and burning sensation. I just hate it when I can't go one day without any pain. I am also on Neurontin and have been for a little over a year. Unfortunetly it hasn't worked for me, but I do get a lot of bad side-effects with it. My doctor has said that the only thing left was another surgery, but I am going to get a second opinion this friday. I hope one day both of us will be able to do what we enjoy without any pain. Thank you for your kind words and I hope everything works out with you. Keep me updated on things!!

Megan

Re: megan------ what are your side effects

linda A on 11/27/01 at 22:06 (065466)

can you explain some of your side effects . i take some many drugs and i was beginning to wonder about my own . but i can not distinguish which is causing what problem . i know i am having problems w/ kidney & bladder , feels like kidney stones -- i think that is due to my seroquel . i have alot of muscle pain , along w/ joint pain . i always had some degree in my knees and thighs , but it has gotten worse since taking these drugs . my muscles and joints in other parts of my body are now acting up . at first i thought that i was coming down w/ the flu , but it has going on for weeks now . usually the cold weather also affects how my joints acts up . i am only 36 yrs old . my great aunt had R.A . when she was real young ( started when she was around 30 yrs ) . i never discussed w/ doctor , because i don't want to be diagnosed that early . when i had knee surgery 6 yrs ago doc said ,i had no -arthritis. i was so relieved ( kneecap was out of place ) . i have the tingling sensations in my hands ( almost like the feet ). i due have neck problems ( c3-4 c5-6), but it was never down in the hands only in the upper arms . so i am wondering if this is some kind of side effect . do you have any of these symptoms of the tingling sensations . have headaches all the time worse now , quiet different than i used to have ( more on right side by my eye ) . i don't complain , i usually just deal w/ it . i am afraid of going to the doctor everytime something comes up. but then i had a co-worker who wife had problems w/ear & eye and found out she had a brain tumor . noone in louisville would touch it , she had to go to cinn , ohio to have three operations . well it has been 4 yrs and she is doing fine . how many mg of neurontin were you taking ? are you concern of more scar tissue to TTS area when more surgery will be perform there ? thank you for responding ? linda

Re: megan------ what are your side effects

john h on 11/28/01 at 09:12 (065485)

linda: i would sure have a blood work up to check for liver/kidney functions. Muscle and joint pain are symptomtic of many drug reactions.
Having had a C4/C5 and C5/C6 problem I can attest that they can cause both tinglling and pain in the fingers,arms. In any event you should describe these to your family physician and insure you are not doing any damage to your body.

Re: megan------ what are your side effects

Megan C on 11/29/01 at 14:48 (065646)

Linda, At first whenever he upped my dosage of neurontin I would constantly be very tired. But now, I have a lot of neck and upper back pain and I get muscle spasms in my neck. I finally went to a neurologist who said that neurontin can cause these side affects in some people. I was taking about 2000mg, but the neurologist and my mom took me down to 600mg. Although the muscle spasms aren't as bad, I still have pain in my neck and back. I want to get off of neurontin but everytime I skip a dose by accident I go through withdraw. So i'm hoping my new doctor can do something about it. Does any of this sound familiar to you? I hope not!!

Megan

Re: megan----------what are your withdrawal symptoms

linda A on 11/29/01 at 20:19 (065687)

megan --- i already have the neck problems since college years . i was an infant when a drunk driver slammed into our family car at 4-way stop . being in 60's my car seat was located in the front seat . also been in several other fender/benders and loved trail riding w/ my mountain bike-trek ( killer of them all is --- the old ten speed or today what is called the 'road bike ' --- cannondale) . so my neck had a few good whips . one day when i was trail riding and came down off a trail and thought i had clearance under a branch ( nope---luckily i had a helmet on ) . it knocked me off my bike and gave me stars to look at . can you be specific about your withdrawal symptoms ? thank you again for responding megan ! i wish you all the luck .are you still in highschool or are you in college now ? do you play any other sports or are still sideline from other sports too ? what state are you from ?i like to write down where people are from ? i am from louisville, Ky . i am anesthesia tech , who works at a hospital in louisville . linda a

Re: megan----------what are your withdrawal symptoms

Megan C on 11/30/01 at 14:17 (065748)

Linda, my withdraw symptoms include dizziness, headaches, symptoms somewhat like the flu. Do you have any of these? Sorry to hear about all of your accidents! I'm now a senior in HS. And I am, unfortunetly, not allowed to play sports again. I'm from Collingswood, NJ. I just went to my new doctor today for a second opinion. I have to have an MRI and another EMG done on my foot to see if any new nerves are damaged. But he said if there aren't any, then i'm most likely going to have to live with the pain. I also wanted to be a nurse, but he said I couldn't. It would put too much stress on my foot. So in a way, and I know this is bad, I kind of hope there is a different nerve that damaged so that there's hope for some treatment. I know that's wrong to say, but I know I can't live with this amount of pain for the rest of my life. Ya know?And by the way, it's great to meet you!!

Megan

Re: megan--- it is once again hard to pin point those symptoms

linda A on 11/30/01 at 14:50 (065754)

i always have headaches ( usually on left side ),but this time it is more off to the right side of my temporal . it is so confusing w/ the headaches , because somtimes i am often bother by bright lights . i have to wear tinted glasses , because of this reason . in the surgery dept it is especially bright when all the lights are 'on ' . so i try not to pop to many tylenol in my mouth , because then you have what you call the ' rebound effect ' from taken too much tylenol . so i often deal w/ the pain . the dizziness ---- is another hard one to explain because i have hypertension . if i get up to fast then here comes the dizzy part . are you dizzy all the time / or just some times ? flu----- meaning the muscle aches ? that is what i am experiencing now . is that what you mean ? i am cold always , so that will be hard for me to judge . my friends tell me i have no---blood/or fat to keep me warm . well the fat is not true i am 185 lbs right now due to lack of activity for 2 1/2 yrs ( at one time i was 99 lbs that was 5 yrs , anorexic ) . when i was exercising i stayed 135 lbs . being a nurse takes alot of physical effort on the feet . the worse part on my P.F is after break time , my feet constantly wants to stretch out ( high arch -- very painful) this goes on for 20 minutes . take care megan . do you live close to DR. Zuckerman ? linda

Re: megan--- it is once again hard to pin point those symptoms

Megan C. on 11/30/01 at 16:43 (065768)

linda- I'm not always dizzy. It's usually mid-day or when I haven't taken my medicine in a while. Yes I do get some muscle aches, maybe because of the medicine, maybe not. I too gained some weight when I injured myself. I want to be able to exercise so bad, but I can't even ride a stationary bike, so it's hard to do anything but lift weights. I know how much it must hurt to be on your feet all the time. It kills me when I have to run to my classes at school. I think I live somewhat close to Dr.Zuckerman, though i'm not too sure. Have you heard a lot about him? You take care of yourself too! And maybe you should talk to a doctor about the possible side-effects of neurontin. Though it happens to few people, the side-effects are a sign that the medicine should be lowered or even cut out. Good luck!

Megan

Re: megan--- only been on the neurontin for about 2 1/2 wks

linda A on 11/30/01 at 21:18 (065785)

i don't take the neurontin religiously ( i should be taken it 3 times a day ) . problem is i take too much drugs . bad advice to be given you . so never listen to me . i was having problems w/ my stomach . i thought the big drugs that could possibly be given me problems would be topamax and the seroquel, since i have been on them the longest about 2months . another thing about the dizziness is the seroquel . i have to take it at 6 pm , if i want to get up at 3: 30 am to go to work ( 5- 1pm surgery early bird catches the worm for the anesthesia tech ) . i take care of the gas machines make sure they are working order , stock the anesthesia carts w/ drugs , and supplies for the doc , and here to assist the anes doc . i don't really get to stay in a rm long enough , because i am divided w/ 12 other rooms that need my attention . i carry a walkie /talkie . i sometimes get tired of hearing my name paged ( linda ---stat rm #1) . that was today's big problem a difficult intubation and problems w/ cardiac svo2 monitor . so several things going on that i needed to help the anes doc with . i was able to help w/ monitor problem and got her extra set hands for difficult intubation ( this is a days work --- sometimes these anes docs just read the crossword puzzle during a case and sometimes they have a exciting day ) . remember never lie to anes doc , because everything is very serious down to the cup of water people often lie about not drinking ( aspiration --- bad on the lungs ) . and taking herbal drugs ---all effects blood pressure / heart rate , etc. thank you for listening to my speech on that . smoking is another thing . but i will not pressure you . bad for the lungs , make your own decision . i did smoke cigars for awhile --- fun thing to do . but when i was exercising , i knew that i had to give it up . no---lung space ! yes i heard wonderful things about dr Z . if i could afford him and live close ------ i would had my feet ZAPPED before i would have my feet cut on . ask john H , TEXAS Barb , scott who runs this site , several others have had their feet zapped and are doing the foot trial . john h was a helicopter pilot in vietnam war interesting guy . everyone here are so supportive . i started posting around august , even though i was asking questions to the doc last year before my two surgeries . have you click on to the pictures of the posters . my picture is not there yet . i don't have a scanner . hoping to scan soon . take care megan . have a nice weekend . i hear it is snowing up north is that true ? linda age (Ky)

Re: megan--- only been on the neurontin for about 2 1/2 wks

Megan C. on 12/01/01 at 09:39 (065806)

Linda, Wow, what an exciting day you have! But also a very busy one, and one that starts very early! I have trouble getting up at 5:30 for school, let alone 3:30! I do have to hand it to you. It does seem like you're taking a lot of medicine, but does it work? If it takes the pain away I would love to know what you're on. Everyone here does seem so nice. It helps to have someone to talk to that knows what i'm going through. What do you mean by having your feet zapped? Is it a method of pain control? Don't worry about the no smoking thing. I don't want to pick up the habit. I hate it that my mom and grandmom still smoke, but they won't listen to me! About the snow, I wish it were snowing!! It is so warm up here! And the weather channels say it's supposed to stay like this through December 14th. Which is very upsetting to me since I love the cold weather. How is it in Kentucky? Well, I have to go help put the Christmas decorations up, talk to ya later!

Megan